Kaela's Blog-Raising a Child with Metatropic Dysplasia

Dear God, GIVE KAELA A BREAK!

2011-10-13T15:57:00.000-04:00

We noticed some strange puffiness around Kaela’s private area in recent weeks and decided to take her in to see the doctor today. It turns out she has a hernia and needs surgery to fix it. The first time we noticed this was a few weeks ago but it seemed to disappear so we thought maybe we were just imagining things or that it was just the way she was sitting. Her pediatrician confirmed it though and we are now waiting for a surgery date. Poor K already has so many surgeries ahead of her that we were a little dumbfounded that this came up. Fortunately she is not in any pain right now though the doctors said if she complains of pain in the area to bring her into the emergency room immediately. Sometimes I feel like Kaela has to carry all the health problems in our family on her tiny little back.

October Is National Dwarfism Awareness Month!

2011-10-01T15:59:00.001-04:00

Its October 1 and for those of you that didn’t know, today is the start of National Dwarfism Awareness month. Awareness of the many forms of dwarfism was reserved for October by the LPA (Little People of America). This is an annual chance to promote education and awareness of dwarfism which is often misunderstood. We would love to take this opportunity in honor of our daughter Kaela and the many people who are touched by dwarfism to talk about some interesting facts.

80% of people born with dwarfism have parents, brothers and sisters of average height.
In 2009, the word “midget” was declared offensive. Alternative terms and phrases to describe a person with dwarfism are: having dwarfism, little person, LP, short stature or the medical terminology of the person’s type of dwarfism. Of course these terms and phrases are less preferable to just using a person’s name.
There are over 200 forms of dwarfism with the most common form being achondroplasia.
There are about 681,000 people worldwide living with some type of dwarfism.
The official organization that represents people with Dwarfism is the LPA which has 6500 members belonging to one of 70 active chapters in the United States.

For more information about dwarfism and National Dwarfism Awareness Month visit the LPA website.

Williams First Weeks of Kindergarten

2011-09-27T13:14:00.000-04:00

This is a little late but better than not at all. Will’s first day as a kindergartner was a few weeks ago and he was super excited to start. He rode the bus for the first time with all of his neighborhood friends. Most of them are older than he is so he had some good guides on his first day. We enrolled him in the all day version of the program so he could get used to being at school for a long period of time during the day. Luckily he had some kids from his pre-school class as well as kids from sports activities that he has participated in there with him.

I really like the school system our kids are attending. I even went up to Will's school today and had lunch with him and his class. The administration there is very professional and accommodating.

Now that Will has been going for a few weeks we are seeing that he is learning a lot. He can write dozens of letters all on his own and loves practicing his penmanship. We were reading Green Eggs and Ham last night and he was reading entire sentences on some of the pages. We are just so proud of our little boy and all that he is accomplishing.

2011-09-19T19:55:00.000-04:00

Today was the first day of the rest of Kaela’s life, it was her first day of pre-school. After all morning screaming and crying about how she did not want to go, she did a 180 and was super excited. Sarah and I were sort of apprehensive about the whole experience as Kaela needed some accommodations in the classroom and we weren’t sure how that was going to look. The school came through in a very big way though.

Kaela stands about 34 inches tall which is quite a bit shorter than the typical preschooler. Not to mention that her arms cannot go straight above her head. Hooks for coats in the class room were easily 4 feet off the ground, impossible for Kaela to get to without something to step on. The teachers screwed hooks into the wall about 24 inches off the ground for Kaela to hang her bag and coat.

Other areas in the classroom where Kaela may have needed help are the drinking fountain and the bathroom. While the drinking fountain could have waited, the bathroom was obviously an important item to address for her first day. This was also my favorite part for Kaela to see. The school had made custom stairs made of wood with a railing for Kaela to walk up to the toilet and also the sink all by herself, no help required. There was also adhesive non-slip material applied to the steps so that she, and other kids, wouldn’t slip and fall.

Overall I was very impressed with how the school stepped up and made these accommodations. We also got a chance to come in before class and try them out. I’m glad that we live in such a supportive community that is eager to help make Kaela’s school experience a good one.

Visitors To Kaela's Blog From Around The Globe

2011-09-16T00:02:00.001-04:00

In the past month we have had 120 visits to Kaela's blog from 11 countries or territories. 98 of them have been from places within the U.S. alone. Great to see that people are finding the blog and getting info.

Analytics Adayinkaelaslife.blogspot.com 20110815-20110914

Kaela's First Appointment with Dr. M

2011-09-15T22:20:00.000-04:00

Today was Kaela’s appointment with Dr. William Mackenzie at theNemours/Alfred I. duPont Hospital for Children. This was our first formal appointment with Dr. M. We have seen him twice before at regional and national LPA conventions where specialists like Dr. M donate their time to meet with families of children with dwarfism. Today Kaela had x-rays done and not too much has changed since the last time we had imaging done at the University of Michigan medical center. We did however get a more accurate picture of the next steps we should take and when we should take them.

We have long expected that Kaela would need another series of surgeries to correct the kyphoscoliosis in her back. The only things we were unclear about were when that would take place and what would trigger the decision to start doing it. Our doctors at the U of M have been wonderful and have already pulled off a successful Laminectomy and C-spine fusion on Kaela in February of 2009. Dr. M however has extensive experience with children with Metatropic dysplasia and has been perfecting a method for correcting curvature of the spine.

As of this appointment, Kaela could have her surgery when it is most convenient for our family and in the near future. The curvature in her spine has reached over 90 degrees which is about the point when these kids have the corrective procedure. The entire process takes at least two months so we will need to begin it during a time when Kaela will not be in school. We are thinking that next summer may be a good time to get it done which will be a good time for our family as well as good timing before her condition worsens to a point where she can’t get around as well.

Another great part of this trip is that we got to connect with other families that my wife and I have been in contact with over social media. We are very lucky to have these channels to connect with families who are going through the same experiences we are and that have children with such a rare condition. We met these families for the first time yesterday and it already felt like we knew them because of the relationship that was cultivated over the internet.

Overall we have had a very good experience here at the DuPont hospital. It was far better than I ever expected it to be. Dr. Mackenzie, Chris from hospital PR and Colleen, Dr. M’s nurse were all extremely accommodating. They even planned a pizza party in one of their conference rooms for all the MD families. Chris from PR contacted the local NBC affiliate to do a story on all the MD’s that were in one place at one time. Even though there were only 6, when there are only 90 sum cases in the world, 6 is a big deal. The local news couldn’t find a way to make it work although there may still be some stories in the works as well as something on the hospital’s social networking accounts. Dr. M and Colleen are pictured below with all the MD kids that attended.

Our first trip to Delaware

2011-09-14T02:04:00.001-04:00

Sarah, the kids and I have begun our trip to Delaware to see Dr. M. We just finished driving about 5 hours and are somewhere in Pennsylvania. We decided to start looking for a hotel around 11 pm only to find out that at this time of year in this part of the country, finding a hotel room is next to impossible. The kids kept asking if we are at the hospital yet. After driving an extra 100 miles we found a pretty decent Hampton Inn with two rooms left. A bit pricey at 140 bucks a night but beggars can't be choosers.

Tomorrow we will make the final trip into Wilmington. We can't wait to see all of the families that we have been in contact with online over the past couple of years. It will be fun to meet face to face the people we have been chatting with online or talking with over skype. Better get to bed, its 2am in Pennsylvania and we have an early morning and 5 more hours of driving tomorrow.

New families and support for them

2011-06-14T16:43:00.000-04:00

Ever since we've started the blog we have received quite a few emails from families who have a child who was diagnosed with Metatropic Dysplasia as well as people who have been diagnosed themselves. This is one reason I continue (even though it can be months at times) blogging.
I know when Kaela was born, almost four years ago (which I seriously can't believe!), there was really nothing out there. I called the main office for LPA and was immediately told they knew a family in California who had a son with MD. I was very excited since MD is so rare and there was really NOTHING helpful on line about it. The lady told me she would talk to the other family and soon after I was in touch with a wonderful family. I had a new baby, news I didn't know what to do with, fears I didn't know how to deal with and was just so lost and scared. Talking to this mom gave me so much hope. She has continued to be a huge support for me. I am still so greatful to have found her and so greatful to have her to go to when I have questions.
I want everyone who reads this who has just been given this diagnosis to know there is hope and a good possibility that things will end up being okay. I know there are different levels of severity with MD, but know there is hope regardless of the diagnosis. There are many of us out there that are here to help in any way we can. I've met so many wonderful people and families having had Kaela that I feel like my life was really opened to a new world of new and wonderful things. I know it's hard to see at first because we are so focused on all the scary things we read and hear about that it's hard to see the light at the end of this dark and scary tunnel, but I promise it is there. And there are many others who will agree with this.
As a parent we want our children to enter this world healthy and happy and we don't really worry about anything else, but sometimes we get news that changes this and makes us question things we never even though about. It makes us ask questions that there are no answers to and wonder things that we have no control over. I personally think this is okay and a normal part of the coping and grieving process. I know we all deal with things differently, and I'm the first to admit I didn't do well at all. I panicked when I found out (while pregnant) that Kaela had some form of dwarfism, went home and sobbed on my bed for a very long time...to the point that I got sick. I was so sad and questioned what her future would be before I even met her! Then she was born which didn't go the way I had planned (home delivery, and NOT on purpose), so the bonding didn't happen instantly. We were taken to the hospital in an ambulance and Kaela was immediately taken to the NICU where she spent a few days, then was moved to a regular room for a few more days. I went home one day and wasn't sure I wanted to bring her home. I know this sounds horrible, and I don't tell people this usually because I don't want them to think I'm a horrible mother. I cried in my room and told Matt I don't want to bring her home. It wasn't because I didn't love her, but because I didn't know what was going to happen. I of course instantly looked on the internet after I was given the diagnosis, which was probably the worst thing to do. You're going to do it, no matter what I say, but it really isn't the best way to learn about your child. I spent more time with her at the hospital once she was moved to a new room and instantly fell in love. Nothing really mattered at that point. I couldn't leave her side again! I was still scared, I still cried and I still worried....but I knew she was mine and I had a job now that had a longer list than originally planned...but it was okay because she was beautiful and mine.
The first six months or so were the hardest because there were so many appointments, but things become routine. You get into and minus those extra appoitments, braces, learning what is good and not good, everything is the same. She had a big brother that loved her, she smiled just like my son had, she laughed, she cried, she ate....she was a baby, she was our baby....and we loved her...and we continue to love her. She didn't walk like every other kid and she talks about medical things that most kids her age have no idea about...but she's perfect!
You quickly learn that they are born with this, but it's in NO WAY who they are. They are our children, grandchildren,friends, sisters, brothers, nieces, nephews,neighbors..and they can and will do things you never thought they would do in ways you never knew someone could do them. They will amaze you, they will love you and they will be perfect regardless of the difficult things they may go through. They will teach you so much...including how to love more than you ever imagined you could love. Children do this in general I think...
Having gone through what we have in the last 4 years I can say we are a better family because of it. And not just Matt and I, but our son, our families and our friends...it opens our eyes to a new world of possibilities and a whole world of friendships we never would have had.
The families I've met through Kaela our like part of our family. They are there when we need them and they understand what we go through. You can find the Metatropic Dysplasia group on Facebook at:http://www.facebook.com/home.php?sk=group_215180254421 or search Metatropic Dysplasia around the world. It's been a wonderful resource and support group for so many families! The families and friends of families that are a part of this group are truly amazing people.
I just want families to know they are not alone and that it really will be okay. Kaela having this is just part of our life. We don't talk about it everyday, it doesn't change what we do. Kaela is a very happy, bossy, stubborn, loving, sweet, caring and determined little girl who will continue to make this world a better place, I'm sure of it!

family update

2011-05-31T12:41:00.000-04:00

I owe all my friends, family and followers some updates. Our lives have seemed to be at full speed ahead the last several months, and I haven't made the time to update the blog the way I should have. I've received a few friendly reminders in the last few weeks too, so I better get to it :)

Most if not all of you know this already, but our baby boy is due in just a couple of months now. We are all so excited to meet him. William is so loving and already tells me how much he's going to help me with him. It's really quite sweet. He tells me when he's crying he will pick him up and hold him, help feed him and teach him things. I believe it too because he loves babies and he's just a very sweet kid. He really likes feeling the baby kick too. Kaela on the other hand does not want to waste any time putting her hand on my belly to feel the baby. She is very uninterested, but she says she's excited to help with the baby too. She said she'll feed him and teach him how to sleep. I told her I'm loving the idea of teaching him to sleep! She's my good sleeper too, so I am hoping she has some good tricks to teach him.

I'm starting to feel a little slower these days, so I'm really looking forward to the end of July when I will be induced. Everyone ask me why I'm being induced, or how I know this already, so in case you are wondering....I had Kaela on my bedroom floor and NOT on purpose. She is just very determined and was ready to enter the world, so she did....and not the way I would have liked to have had it happen. She was also about two weeks early, Will was a week early and quick for a first time labor, so to prevent any craziness this time, we are planning ahead. Lets hope it all works out the way it's supposed to this time (me in a hospital room being pumped with drugs).

William finished up pre school just last week. My oldest and sweetest little boy will be entering Kindergarten this fall and we are all so excited for him. He loved pre school so we are really looking forward to him starting Kindergarten and learning so much more! He's such a good kid and we are so proud of him. He starts Safety Town in a few weeks too which will be another fun and exciting thing for him to do.

Kaela is finishing up her first year of preschool this year. She has been in a program in the school this year where they've worked with her a lot to get her comfortable in the school, learning how to get around better on her own (walking, a lot with her walker), using the potty, learning to catch herself if she were to fall, etc. She has loved it and they have all loved her. Next year she will be moving up onto the pre school program Will was in this year and she's looking forward to making new friends there. It's me that is nervous :)
Kaela has had some recent issues with her spine and is scheduled to have an MRI to check things out in June. We are hoping for good news or we are going to have some big decisions to make regarding some major surgery. We know her spine/rod surgery is inevitable, we are just hoping we can wait as long as possible.
We saw Dr. Mackenzie from Dupont Children's Hospital in Delaware in April. He's very familiar with children with MD and we feel really lucky to have him to go to. We've made an initial visit to see him in mid September to see what he thinks of Kaela, her images, and to have a breathing test done. I've been a little emotional lately, which I'm really just blaming on my pregnancy hormones, but thinking about all this can be wearing. One of our friends with MD is having his surgery this summer and my heart really goes out to him and his family. His mother was the first person I ever spoke to after Kaela was born so she has been a huge support for me. I know this surgery is needed and will really help our children in the end, but it's still scary and draining just to think about. At least for me :) But we know he and all of our other friends, and Kaela of course, will all do great when they go through it! I'm so excited we will actually get to meet them this summer for the first time too!
Otherwise, Kaela and Will are doing great. They are so much fun and make us laugh all the time. I know Matt and I feel so lucky to have them both and really couldn't ask for better kids. We are so excited to add this little guy to our family. William and Kaela are such great friends and have so much fun together, it will be fun to see this little guy with the two of them.

Learning/Teaching Experience

2011-01-11T21:31:00.001-05:00

This Friday Kaela and I have been invited by our very special friend, Haylee Seefeld, to visit her fifth grade class at Ann Arbor Christian School. They have been learning about different disabilities and would like us to come in to talk about Kaela and her form of dwarfism. Haylee is the daughter of my wonderful friend, Alisha, who also happens to live two doors down. They have been wonderful friends to us through a lot of our ups and downs with Kaela's health and we are so thankful to have such amazing people in our lives, so we are really excited to do this for Haylee and her class. Haylee and her class (including some of her friends we were lucky enough to meet this past summer) have prayed a lot for Kaela and we are so thankful for them. We know their prayers and well wishes have helped so much in her recovery from surgery and we are so excited to say thank you to all of them in person. I tell Alisha that I think our kids (hers and mine) are so lucky to be able to grow up around someone like Kaela who will teach us that the difference is only on the outside and I've seen it already. Haylee, being the awesome kid that she is, has sat and sketched out a plan for Kaela's future home where cupboards are lowered, microwaves pull out from a low spot, smaller vacuums, and so much more. She's ten and already has compassion and understanding for my three year old daughter that many adults do not have and for her, I'm forever grateful. Thanks Haylee for always including Kaela, for walking slowly so she can keep up with you and for helping her when she ask. We can't wait to show the rest of your class that although Kaela has some different needs both physically and medically and will be smaller than the rest of your classmates, she's just like any other kid. She has feelings, she has needs and she has dreams just like the rest of us. She's a person and deserves to be treated with respect and love just like any other person.

End of 2010

2011-01-11T15:38:00.000-05:00

The last month of 2010 was a busy one for us, as I'm sure it was for many of you. I went to a conference for work at the end of November-beginning of December which happened to be in Florida right around the corner from Disneyworld! I went to my conference and Matt and the kids flew down later in the week to enjoy the the parks! It was a blast. The kids had a lot of fun and so did Matt and I. It was the kids and Matt's first time, so for me it was fun watching the excitment on all of their faces :)

William also turned five in December. I can not believe my baby boy is, well, not a baby anymore. Not even close. I can't believe that not only does five years go by THIS fast, but how much he has changed in those five years. I remember this fuzzy haired little boy sitting on the floor not even able to walk and now he is running, walking, skipping and thinks he is smarter than us sometimes. I am more than proud to be his mother. Although he is very much BOY, he still has his moments where he likes to cuddle and he has such a fun sense of humor. So happy he is growing into such a good little man. I'm going to take full advantage while I still can, because I'm sure there will be a point in my not too far future where cuddeling with mom is not what he wants to do.

Our Christmas was much more enjoyable than it was the year before for a couple of reasons. Last year, just a few days before Christmas, we found out that Kaela had spinal cord damage and would need surgery within weeks. We had to take her in immediatley to get a neck brace, so all of her Christmas pictures were of her in a neck brace. I'm okay with that, because it's part of our life, but we were no doubt so sad for her and scared. This year, being just a few weeks from the one year anniversary of her surgery, I am so thankful it was done and she's doing so well. It has been a long year of recovery in some ways with delays in walking, pain after surgery, and still not going on the potty, but she is one amazing little girl. Having gone through the surgery made all of us stronger and made us all appreciate what we have and even made us find good things within the surgery. The kids were also another year older and SO into Christmas. They were excted for weeks asking on a daily basis if Christmas was tomorrow. It was so much fun watching them.

We also met more MD families in 2010 and we are so thankful for all of our new and old friends. We are so thankful for all of our friends and family, both near and far, those we've met and haven't met. You have all added something to our lives and we look forward to our continued friendships in 2011! It's going to be a good year.

Batter up!

2010-09-16T18:53:00.000-04:00

This summer William started T-ball. This was a first for Will. He is four, so he was part of the 4 and 5's team. Most of the kids on the team were getting ready to start kindergarten this fall, so he was one of the youngest on the team. Will was very shy and did not want to do much the first day, so Matt ran along side him everywhere he went. He had two games a week and by the second week he was doing MUCH better. He needed a little encouragement still, but we were able to cheer him on from the cheering section :) By the end of the season he was by far the most improved out there. He ended up having a lot of fun, loved bating, loving running for the ball, and loved playing with the other kids. He had lots of fans too. Matt's parents, my parents, Will's great grandma and grandpa B., Unlce Joe, my friend Megan and our friends Bob, Alisha, Bre and Haylee all came out to cheer him on several times. We were so proud of him for going to his games and having fun each week. He is getting ready to start soccer on Saturday and is really excited about it. I can't wait to see him in the high socks, shin guards and cleats! He is going to be so cute! Here are some pictures from his t-ball games this summer.

Looking back at our summer...starting in May

2010-08-30T19:45:00.000-04:00

Spring and summer have gone by and I haven't posted anything. I thought the best way to start would be to go back in time and share a little of what we've been doing the last several months. I'm going to start all the way back at the beginning of May when the kids and I went to Texas to visit Aunt Rachie. I really wanted to be with Rachel on May 1st which marked the one year anniversary of Justin's death so the kids and I packed our bag and caught a flight to Austin Texas. Matt had to stay behind due to work, and I was a little nervous about taking both kids by myself on a long trip. Thankfully, it was by far the best time we've ever had in Austin. Rachel was very happy to have us there and I was so happy when she told me that was the happiest she had been in the past year. I really wanted to go to distract her and just be with her. We went to San Antonio for a day, we went on a "drive through Safari" and to a cave. The kids had a blast with their Aunt Rachie. When we went to the cave I wasn't really sure what I was expecting, but as soon as we got out of the little train car that took us down into the cave, I started asking my sister why I agreed to do this. I started thinking what's going to happen if the lights go out in here (believe it or not I'm still scared of the dark at 30, pathetic, I know) or what if it collapses and we are stuck in there...my anxiety level was a bit high for the first 10 minutes. The kids did great. At one point towards the end of the tour they turned all the lights out for about a minute and a half so we could see how dark it was in a cave. I thought this was a horrible idea, but nobody cared. The lady turned the lights off and I was sure the kids were going to flip out, but instead they didn't make a sound. I was begging them to cry or something so they'd turn the lights on as I clung to them and my sister. My sister loves making fun of me for this.

The Safari thing was so much fun. My sister and I laughed so hard during that drive. It was the hardest I think both of us laughed in a long time. They gave us food to feed the animals and of course all the signs say to drop the food on the ground but I don't think there was one animal that didn't shove his head in the car waiting for food. One of the Zebras put his head in the car, grabbed my bag right out of my hand and ate the whole thing including the bag! I screamed, my sister screamed and then the kids started screaming 'roll up the windows!" It was hilarious. The Ostriches were actually really scary too. These HUGE birds (3 of them) walked right towards us as we drove up towards them and came right up to the window. They stuck their long necks into the window and that actually freaked me out as well as poor Kaela who hated every moment of this. I thought it was a good idea to try and convince Rachel into having one of the Ostriches feed from her bag and she agreed when one came up and pecked the heck out of the bag. I wish I would have had it on video because my sister literally jumped from her side of the car into my seat! It was the funniest thing I've ever seen :) Kaela literally hated every moment of this drive, but the rest of us had so much fun.

I am so glad we were able to spend this time with my sister and so glad we were able to give her a happy long weekend when she's had so many bad ones over the last year. We continue to miss Justin every day and I know my sister struggles every single day so I just have to do my part in taking care of my little sister now. We can't wait to go back to see her hopefully soon.

Kaela's progress

2010-05-18T13:31:00.001-04:00

Once again, I've neglected the blog. Life has been so incredibly busy the last three months that I just haven't found time to get on here and post anything. A lot has happened since Kaela's fusion and decompression surgery 12 weeks ago. She was put in the halo and was scheduled to be in it for 3 months. She was due to come out of it the first or second week of May. Unfortunately, we had a lot of issues with the halo, or rather, Kaela had a lot of issues with the halo. Her Orthopedic surgeon and Neurosurgeon both told us that her bones are much different than the average person, or even most kids with dwarfism. They had never had such a problem putting a halo on someone as they did with Kaela. Her bones are very soft, so when they originally put the halo on they tried it out in many spots before finding the right spot. The first several tries ended with the pins slipping through the bone. They also had problems with the pins clicking into place, so they didn't put much pressure on them (to avoid having them go through her skull). About 5 weeks after surgery Kaela started to scream and cry that it hurt every time we put her on her back or sometimes when she sat up. It was horrible hearing her cry out that we hurt her. We knew something wasn't right, so we called and scheduled an appointment to see the halo docs. It turned out that she had 2 loose pins, both on the left, one in the back and one in the front. Kaela had 3 pins in each site, for a total of 12 pins. Her Neurosurgeon felt okay taking one pin out of each site since she had so many pins in already. They took out the two loose pins and we went home. She was feeling much better the next day having those loose pins out. About a week and a half later we went in for a regular check up with the halo docs and found out that she had several loose pins. They can't leave less than two pins in each site, so a lot of times if one comes loose they just re tighten it, or put another pin in. Because of the problems with Kaela's bones already, they didn't feel comfortable adding more pins or tightening existing pins. Instead, they decided we should just take the halo off. They felt that having had the halo on for half of the desired time was good enough for them. They took the halo off in less than 10 minutes, while Kaela was awake. She was NOT happy about that, but the pins were all so loose that it wasn't as bad as if they were tight. If the pins were tight, they would have put her under general anesthesia to take it off. Kaela has been a MUCH happier girl since the halo came off and is back to her typical self. Even her Neurosurgeon commented on how different she at one of her appointments. With the halo on he'd come in and she would be very quiet on my lap and just overall not happy. This time he came in and she was chatting up a storm and let him pick her up and put her on his lap with no complaints. She told him about her stickers and everything.She was in a neck brace for a couple of weeks, but since then she's been free of everything. We have gone in for several check ups and xrays since it came off, and so far everything is doing just what it's supposed to do. The last visit, just about a week ago, they said it looks like there is some bone growth where they did the fusion. This is great news. It's healing up from what they can see. She has an MRI in 2 weeks just to confirm that it's all healing well. We are so happy that with all the problems and complications, it all turned out okay. I was so worried when they took the halo off early that they'd have to re do this surgery because she wasn't secure. So far, there's been no concern for that, which is wonderful!Kaela's back to bossing everyone around and running the show. Sometimes when her and William play I have to tell her to stop throwing herself on the couch, because I'm so worried about things staying in place, but it doesn't seem to faze her at all.

Kaela's first surgery

2010-02-18T17:51:00.000-05:00

It's been just over a week now since Kaela had her fusion and decompression surgery. She's doing really well considering all that she has been through. They fused Kaela from occiput (base of the skull) to C2 and did the decompression by shaving down the back of C1. Her neurosurgeon said there is a very obvious indentation in her spinal cord from C1 pushing into her cord, and that once he did the decompression they could tell that C1 and C2 were very unstable, so it's a good thing we did this surgery now. We knew before going in she had spinal cord damage and from the pictures of her CT and MRI that C1 and C2 looked unstable, but it's hard to tell just how bad anything is until you get in there and look at it. They placed some hardware (screws and rods) as well as a bone graft from her right hip to fuse it. They were also able to use some of the bone from the decompression of C1 in the fusion. The halo is placed on before they even start the surgery. This took them almost 4 hours! Bones in people with MD (as is the case with most forms of dwarfism) are very different, but also have a different texture to them. Her forehead has a ridge that sticks out a bit and they had a hard time finding the right spot to place the halo. They also said her skull is very thin, so we have to be extra careful, as in no falls. They put a total of 12 pins in her skull. If you are not familiar with this, that's a lot. In an adult they typically put 4. In a smaller child they tend to put more, maybe 8...Kaela, again, has 12!! They are a little worried about the possiblity of infection because she has so many pins in, but we are going to hope for NO problems. More pins, higher risk for infection. We have to clean them once a day, which is actually not too bad. I was worried about this part, but for me, it's not too bad. Kaela on the other hand does not enjoy this. It's 50% hydrogen peroxide mixed with 50% saline solution, so it probably stings a bit. William likes to tell us every night that this hurts Kaela and we should really stop doing it. Such a good big brother. We just tell him that it probably doesn't feel the best, but it's to help Kaela from getting sick, so we have to do it. The next thing he usually says is "well I don't have to do it, right?" Poor kid is all worried he's next.

Kaela's surgery took just over 7 hours total. We were able to see her about 9 hours later. Seeing her for the first time was hard, because she really didn't look that great. She was VERY white, bloody and incredibly puffy. She was also hooked up to a lot of things, which was probably good! She touched at her halo a few times, but we just kept telling her that it was okay and not to pull on it. I was really worried that she would be really angry and tug at it, but she actually did really well...of course! She will have to wear the halo for 3 months.

Kaela was sent to the PICU the night of her surgery and was sent to the regular floor about 24 hours later. Increadible! She didn't move or want to move a whole lot during her stay in the hospital. Although she did better each day, I think she was still having some pain and the halo is very top heavy. They brought her a wheel chair and I was able to take her for a walk on the 3rd day. She hated getting in the chair, but was happy to go for a walk. Kaela's surgery was on Tuesday and she came home on Friday! Again, really amazing. She was so happy to come home. We dopped her up pretty good on meds before moving her around to bring her home, so she was very happy. She was on a constant morphine drip from Tues-mid day Thurs. and after that just took oxycodone as needed by mouth. She was a nut on that Oxycodone! She was super happy and a bit crazy. She thought it was hilarious to try and bite your finger and smack your face, but at least she was smiling.

Unfortunatley, the carseat we have (Britax) does not work with her halo since the straps can't go thru with her halo there, and the hospital car seat did not work either. The only alernative they had for us are these buckles that you pretty much buckle her into, lay her on the back seats of the car, and buckle her buckles into the seat buckles. It's obviously not the safest solution so we are stuck at home other than going to doctor's appointments. As of now, this works out okay because she can't even sit up on her own yet. Kaela has had poor muscle tone pretty much her whole life, so this doesn't help too much. They told us not to let her walk for fear that she could fall and loosen her pins or even knock one (or more) out. After they found how thin her skull was this is an even bigger concern. So far, this hasn't been a problem. She spends most of her day laying on the couch or sitting with pillows on both sides to help support her. Each day she wants to do a little bit more, which is great. We've sat on the floor with her to paint, play with playdough, and play with these awesome wooden cupcakes that you can actually color (using the 'icing' tube) thanks to Aunt Rachie. I think her hip incision bothers her the most out of everything, but over all she is doing pretty good. We are finally getting a little sleep. That's actually probably been the hardest part, no sleep :) We are just so happy to have her home and smiling!

We have had so many people visit during our stay in the hospital and at home and just feel so lucky to have such a wonderful support group near and far (including people we haven't even met in person). Your good thoughts, prayers and well wishes have done their job with helping Kaela get through this and helping Matt and I know how many people out there care so much. It means so much to us and we are forever grateful for your messages on facebook, your visits to the house, to the hospital and the packages that keep coming in the mail!! I've taken lots of pics and am printing lots things to show how loved she is, when she's a little older!! A special thanks to our parents for helping take care of our little man during the hospital stay. William had his first over night with my parents 2 nights in a row while Kaela was in the hospital, and that was a HUGE help knowing he was being well taken care of and loved while Matt and I took care of Kaela. Our parents were a huge help during the days and nights and it means so much. Another very special thank you to our wonderful friends Alisha and Bob and their girls for everything they have done. They also helped watch William, made us food, came to the hospital several times, and were there when we needed someone the most!! Alisha spent almost the entire day of Kaela's surgery at the hospital with her 2 year old just to support us, then took Will home with her so he could go have some fun. We appreciate you guys so much! My grandma and grandpa also were at the hospital from about 10 am until after 7 pm! I made sure they were able to see Kaela before they left having been there so long. I feel very lucky to have them as my grandparents!!

Megan, Vicki, Traci, Andy, Ms. Julie, thank you all for spending time with me at the hospital too!! Means so much! Katherine, a big thanks to you for all the clothes you've put together for Kaela!! Those that have sent emails, left messages, brought us dinner, again, thank you so much!! There are so many of you, and our hearts our filled with love! All of these things, big and small, make a hard time a little easier!!

There is major picture overload below...sorry, but I don't know how to do a slideshow and I really wanted to document all the stages thus far.

Daddy giving hugs before she went back

We flipped a coin to see who would take her back. I won with tails. Kaela was loopy from the meds they gave her before taking her back and she thought it was hilarious that I was dressed like that.

William and I in the waiting area

Matt's parents (Grandpa is sleeping I think :) )

Grandma, Alisha and Will

Friends Vicki and Megan came for a visit while Kaela was in surgery

Alisha and Bre helping pass the time

These are the pins. There are 3 in 4 separate places. They don't look too bad..I think it helps that they are white rather than metal.

Grandma and Grandpa (Kaela's great grandma and grandpa) seeing her in the recovery room after a long day of waiting

First night...long day!

First time sitting up and NOT happy

Blowing bubbles to help those lungs

Alisha brought her a million things including her favorite...chapstick!!

Grandma and Kaela

Grandma and Grandpa

Alisha with Mommy and Kaela

Megan and Kaela

Traci and Andy with Kaela

Mommy and Kaela

Bob and Kaela

first time in the wheelchair, she was not happy about getting there.

This computer that at the hospital worked great for Kaela's videos

2nd time I held her

This is her seatbelt

feeling a little happy

Getting ready to get out of here! Happy face from going home and strong meds

new toys

First day home, playing with her cupcakes (she was still loopy from the meds so sitting and playing was okay for the time being)

Kaela coloring on her color board

Kaela's first trip to her room with Grandma Liz..playdough makes everything okay

Grandma, Kaela, Will, Haylee, Bre, and Alisha in Kaela's room playing

Kaela sitting up in her wheelchair at home

Kaela's best friend, Bre helping her out

Watching movies on the computer, because sometimes mommy and daddy need a break from Dora and Spongebob :)

Grandparents on my dads side

My grandparents on my moms side

Kaela's surgery and pre surgery test

2010-01-28T16:20:00.000-05:00

I think Facebook is to blame for making the blog suffer. I know I've posted this on fb, but I know I really need to keep this updated more. Matt and I are going to do our best to update this blog with Kaela's surgery updates for our friends and family and also for people that come across our blog looking for answers about MD. Many families have found our blog, so we are going to do our best to keep up on this.

Kaela had her MRI and CT scans done 2 weeks ago. She did great and the nurses and anesthesiologist were all very prepared for Kaela. Because she has spinal cord injury, they were a bit worried about doing these test since they have to put her to sleep for them. In the past, they've always put the tube down her throat, but when they do this, they tip the head back. Moving the head back like that (or side to side) when you have spinal cord damage is very dangerous. It could cause more damage, which is obviously what we want to avoid. Because of this, they were going to either do what they could with no breathing tube or use a scope when putting the tube in and keeping her head still. When we walked in they knew exactly who were were and said they'd bee talking about Kaela all day since she was such a special case. This helped ease our nerves tremendously.

They've always allowed one of us to go back with her when they've given her the gas, but this time they didn't let us do that. They said they had to take extra precaution due to the injury, so they gave her some medicine to relax her before they took her. Poor little Kaela was very out of it. She was really funny at first, making silly faces and just being really silly, but then it was really sad because she couldn't even hold herself up. That was hard to watch.

The doctors got the images of her full spinal cord and said that there isn't much room, and we may have to look into doing something for that down the road. Not sure how far down the road, but hopefully no time too soon.

The surgery is scheduled for February 9th at 7:30 am. Kaela is scheduled to be in the hospital for about 5 days assuming all goes well, in the halo for 3 months, and hopefully all taken care of. There's a good chance they will have to re do the fusion surgery in a couple of years due to the fact that she's so small right now and will continue to grow. We are just taking it one day at a time right now.

Thanks for all the well wishes. We really appreciate them. I'm starting to feel more nervous now that it's next week. I'm just going to snuggle Kaela as much as I can this next week. One thing I think I'm going to miss for the time that she's in the halo, is her little face pressing up against mine. That big halo is going to prevent us from squishing our faces together :) We are also going to give her lots of opportunities to sit and wrinkle in the bath this week since she can't take a bath the entire time she's in a halo!

We go in tomorrow for a trial fitting for her custom made halo vest tomorrow. They did the plaster molding of her back about a week ago since her body is so unique with her kyphoscoliosis in the back and her chest sticks out in the front. They usually just take measurements, but they want to be sure she's not getting any bruising or anything with the vest. I will continue to keep you all posted. Here are some pictures from her MRI and CT scan.

She wanted to wear her wings and tutu (she had her want too) to the hospital.

napping while we waited about 2 hours for her MRI and CT

This is when she started getting goofy and sticking her tongue out and then laughing.

on our way home....one long day

Kaela and surgery

2010-01-10T20:39:00.000-05:00

I figured this would be a good time to (finally) update the blog. We found out right before Christmas that Kaela needs c-spine surgery. Her top two (C1 and C2) vertebrae are unstable and she also has damage to her spinal cord. Her vertebrae have slipped and pinched her spinal cord. She is going to have fusion surgery to hold her neck in place to stop the vertebrae from becoming more unstable and causing more damage. She also needs decompression surgery in order to give her spinal cord more room. They will be shaving the back of the bones to leave more room for the spinal cord. The surgery hasn't been schedule yet, because the neurosurgeon and the Orthopedic surgeon are trying to get some more information together and are working to find a good time with both of their schedules. They said it should be within the next few weeks. We hope to get a call Monday telling us when it is. Her surgery will be done at the University of Michigan hospital and we feel okay about this. UofM is huge and is also a top hospital. We feel really good about our surgeons too. Kaela is a rare case, both with her form of dwarfism and with her being so young and having this surgery. They said they are a little worried about the fusion holding due to her size and being able to get it done since there's such a small area to work with. They are 80 percent confident that they can get it done, but there's a chance they would have to go back and re do the surgery in couple years due to the fact that she's still growing. They will be contacting a couple other doctors at other hospitals to get some more information. They have done several surgeries like this, just on older, usually average height people. The decompression surgery will be the easier of the two.

They have told us to try and keep Kaela from walking until the surgery and also they ask that when she's in the halo for 3 months, that we try not to let her walk. The reason they don't want her walking right now is due to her spinal cord injury. If she were to fall, this could cause more damage to the cord. Poor Kaela has gone through therapy and finally starting walking short distances on her own a few months ago, and here we are telling her to crawl or scoot on her butt. When she has the halo on, they said they ask toddlers not to walk with it, because they tend to fall a lot. There are usually 4 pins that re drilled in the skull and if she falls they risk having the pins fall out...not good. We are just going to do everything we can to keep Kaela safe.

She's such a good girl though. She just listens and does as she's asked. She had to get a neck brace put on right away when they read the results to the MRI saying her neck was unstable, and she hasn't complained once! Our little girl is one tough cookie. The next few months are going to be hard, but we have wonderful family and friends that are helping us get through all of this.

I will keep this updated as we find out more and through out Kaela's surgery. Thanks everyone for your support, prayers and thoughts during all of this. It means so much to all of us!

Here are a few pics of the kids.....

Dwarfism Awareness month

2009-10-07T19:30:00.000-04:00

I wanted to write a little about dwarfism and what it means this month in honor of my beautiful daughter Kaela Rachel Laurin. Kaela has taught us and her family so much about dwarfism and accepting the differences in people. We can only hope that people will read our blog and learn something new and walk away with a new understanding and a little knowledge. The more we make you aware, the more our children have a chance at leading a life with less stares and more acceptance.

DWARFISM

People who are born with dwarfism are people. They enjoy doing the same sorts of things as people who are of average height.

People with dwarfism are small in size, but can do just about anything that an averaged sized person can do. They may do it in a different way, but odds are, they can do it too.

People who are born with dwarfism want to be treated like everyone else. They deserve to be treated like anyone else. This does not make them any less of a person.

The majority of little people are born to average height parents. Most forms of dwarfism are caused by a random mutation.

People who are born with dwarfism can hold jobs, have families, play sports and so much more.

Someone with dwarfism can be referred to as a little person, lp, dwarf, person with dwarfism, and most importantly by their name. The word midget is considered to be very offensive and should not be used.

There are over 200 forms of dwarfism.

Dwarfism does not cause cognitive impairment. Most children born with dwarfism, have average or above average intelligence.

Kaela's specific form of dwarfism is called Metatropic Dysplasia. There are around 85 known cases of MD around the world, meaning it is a very rare form of dwarfism.

The average height for someone with dwarfism is typically around 4 feet, but can range from 2 and a half feet to 4 feet 10 inches. Kaela will most likely be between 3.5 and 4ft tall.

The most important thing you can know is that people with dwarfism are people. This world is full of all kinds of different people, and once you begin to learn a little about 'different' you will realize there's nothing wrong with it. The more educated we become, the better off we will be. Being curious, having questions and wanting to learn is natural and accepted. Asking appropriate questions is okay. Being rude and making fun of someone is not okay. If you have questions or want to learn more, ask. I have met a lot of parents of little people in the last couple of years and I am sure that every one of them would love to brag about their kids to you! The more we know, the more accepting we are. Learn a little and pass it on.

WHO could resist this face?!

It's been awhile

2009-09-27T13:33:00.000-04:00

I have been the worst blogger this summer and I've been told I need to get back on track. Summer has been so busy. We have spent a lot of time outdoors and a lot of time with our great neighbors this summer. We really live in a great neighborhood and on a great street with some great people. There are kids Will's age and Kaela's age to play with so it works out well. Kaela and Will have changed so much this summer too. I can't believe how fast they grow and change. Kaela is talking like crazy. Almost as good as her brother sometimes which is crazy. I can't believe how much she can say for her age. It's funny to listen to her and William have conversations. They are so polite to each other at times and then sometimes they can drive us up the wall with their back and forth bickering. It's been so much fun to watch them change and grow into people...no more babies in this house right now.

We just got back last week from visiting my sister Rachel in Austin, Texas. We had a great time and were so glad we were able to go and have a good time with her there. The kids had a blast eating candy for breakfast and getting pretty much whatever they wanted for a few days. We went to San Antonio for a day while we were there and went to Sea World and downtown San Antonio. We had a blast at SeaWorld and Matt and I LOVED San Antonio. It was beautiful! Lucky for us, Rachel will be coming to Michigan at the end of October to stay with us for at least a few months! We are so excited to have her home and to be close to her for however long we can keep her here :) I'm just going to have to let her know candy is not okay for breakfast ...

Kaela has been doing well with her walking. She's not walking on her own still other then a few steps at a time, but she is great with her walker. She can litterally run with that walker. We are currently borrowing one from her physcial therapist, but we have a script in to get her very own. I can't wait to get it so we can take it everywhere with us to try to get her to walk more on her own. She's getting heavy now and it's harder to carry her everywhere. I'd like her to be more independent in that way too. She pretty much does everything else though and has been very independent this summer. If you try to ask if she needs help she's very quick to tell you "I do it I do it," so we have learned to let her do a lot on her own. Some things, like getting out of the car, are a bit of a safety issue so I let her do as much as she can, but sometimes I have to step in. This girl has some lungs on her too! She does NOT like being helped when she wants to do it herself. At least she is determined.

We are going to try and get William into pre school here soon for a couple days a week. I think it will be reallly good for him. His b'day is Dec. 2nd which is one day after the cutoff for kids starting kindergarden so he will be one of the older kids in his class and it won't be for another 2 years.

I am so excited fall is here. I love fall and living in Michigan we truely get to enjoy a real fall watching the leaves change, cooler weather, cider mills, hay rides and all that fun stuff. I will try to be better about posting too.

I'll leave you with some pictures of the kids.

Kaela's 2!!

2009-06-21T22:09:00.000-04:00

I know I have not blogged in forever, but today is a very special day and deserves a post. Our baby girl is 2! I can't believe how fast the last 2 years have gone. I can't believe my baby is 2!! She has changed so much and we've all loved watching her change and grow the last 2 years. We can't wait to see what's to come. She already has a fun and determined attitude, so I can't wait to see how much she learns and changes this next year. We love you so much Kaela. You are such a fun, smart, sweet little girl. We hope you had a great birthday!! You bring so much joy to our lives. We love you!

XOXO

Mommy, Daddy, and Will

the first 2 are from today (she looks so grown up!) and the others are from her family party yesterday

no words

2009-05-06T19:49:00.000-04:00

I have no words for the horrible tragedy that has happened. Most of you know through facebook that my sister Rachel's husband died in a car accident on Friday morning. My sister and Justin live in Austin Texas. Today would have been there 3 year wedding anniversary. We flew out very early Sat. morning (my parents got out Friday night) and came home yesterday (Tues). It's a very very sad time for so many people and my heart is just so saddened for Rachel's loss as well as for Justin's entire family. Justin is originally from Michigan so the service is going to be here on Saturday. I love my sister so much and am just so saddened this had to happen. I didn't get to know Justin very well since they moved right after they got married, but I know he loved my sister very much and he will be missed! It's just so sad and horrible. We love you Rachel and I am always here for you. I'm so very sorry and wish I could take the pain away. We are always here for you and to hold you while you cry and to listen. I know you miss him so much and I am so sorry you have to go through this. We love you and we will miss you Justin!

Thank you everyone for your kind words, prayers and thoughts. It means so much!

Our visit from the Bunny

2009-04-13T19:06:00.000-04:00

Easter was pretty fun this year with the kids. Will is at a great age to ask for more toys for yet another holiday and Kaela had fun finding eggs and eating chocolate. What more can a kid ask for :) We started Easter weekend with a trip to a near by city who was having an Easter egg hunt. We went with our neighbor Dale and his kids William and Natalie. Their mommy had to work, which was a big bummer, so she wasn't able to join us. Next year :)They had the bounce houses, face painting and eggs filled with candy. Unfortunately it really wasn't much fun because there were SO many kids and parents that you could hardly even move around. It was fun getting out of the house though.

William and Natalie (our neighbors kids)

Saturday night we colored eggs which was a lot of fun to watch. Will liked putting each egg into every color, which makes for some pretty ugly eggs. He did the same thing last year, but somehow this year they turned out much better. Kaela started by chucking one egg at one of the cups, which is always fun. The little plastic egg holder was a nice thought, but it turns out little 3 year old and 1 year old hands work much better. By the time we were done we had pretty colored eggs and hands!

Sunday we woke up and the kids found their baskets full of yummy treats and toys. They loved that part. We then went out to eat with Matt's parents, his brother Joe and his g/friend Marcy as well as my parents, which was fun.

Will and Kaela ate chocolate, starburst and tootsie rolls all day long. It was a lot of fun. I imagine it will only get better in the next couple of years.

One other big announcement. William is potty trained! Woo hoo!! He hasn't had any accidents in about a week and he's doing GREAT! We are so proud of him. Last night we put him to bed in underwear, and didn't even realize it until he woke up this morning. Matt sent me a text at work telling me Will wore his underwear all night and didn't have an accident. He has been waking up with dry diapers, but I just was a little nervous to start putting him to bed without it just to be safe. He's so proud of himself and loves wearing his big boy underwear so I think we are down to one kid in diapers. Talk about exciting news!! He will be 3.5 in June so I think he did pretty well with it. I've heard boys take longer, so I'm happy. Great job Will!!

The last bit of new news is we are heading to Texas one month from today. We are thrilled. We booked our tickets about a month ago, but we are getting really excited since it's not too far away now. We are going to Austin to visit my sister Rachel. The kids are excited to ride on a plane and Matt and I are dreading it :) Hopefully it goes well. Three hours on a plane with 2 kids 3 and under can't be that bad, can it? If you have advice please don't hold back! I know some of you travel with your kids often so I'd love some advice or suggestions on how to make for an easier trip.

So I didn't have time for cropping and I'm sorry for the picture overload, but when you have kids this cute it's just too hard to choose :)

What's it like...

2009-03-30T13:23:00.000-04:00

I was talking with a friend the other day and thought about a topic to write about on the blog. I know I get a few new parents who read the blog or come across it when they are searching for things, so I wanted to talk about what it is like to raise a child with dwarfism. I know there are also people out there who don't have a dwarf child, who might wonder too and that's okay! I know this is different for everyone, so I can only talk about my experience and state my opinions. Obviously I still have a lot to experience, since Kaela isn't quite 2 yet, but I do have some idea. I'm sure the dwarfism part is a bigger deal to some people and families then it is others, and people are going to have their own feelings about what's right and what's wrong for our children just as we do with our average sized children. For our family, the fact that Kaela was born a little person, really means very little. I worried a lot before she was born and right after she was born, but I feel like that was a natural grieving process in some ways. I was scared and I worried about her and things I should not have to worry about, but this was my baby. All I ever wanted was for my kids to be healthy and happy, and then I hear that my daughter is going to be born with a skeletal dysplasia and she will be very little. It turns out I have much more important things to worry about then Kaela being little, because there are a lot of complications that come along with her form of dwarfism, but still, for us, it's really a non issue. Don't get me wrong, I want the best for Kaela and that include the best health care and treatments. I take her to see an Orthopedic surgeon at least every 6 months to see how her spine is curving, check her neck to be sure it's stable, look at her bowed legs, we've seen physical therapist, occupational therapist, a physical medicine doctor, a pulmonary doctor, etc....our lives are different then they would have been had we had an average kid with no medical complications, but really, she's just a kid just like any other kid I would have had. Kaela does everything any almost 2 year old kid does other then walk. I think parents get scared sometimes thinking their lives are going to be so different and that their child's life is going to be so different. I'm not saying that in some ways it isn't going to be or that it isn't different, but I personally feel like it's as different as we make it. I want Will and Kaela to both grow up to be good, caring, smart people. I want them to know they can be whatever they want to be, they can do whatever they want to do. Obviously we all have our own limitations, but for us, Kaela can and will do just as much as William. I don't ever want Kaela to feel different around her family and friends. I want her to know that we love her, respect her, and support her and the same goes for Will.

I sometimes have people ask me if we'd have another kid not knowing which gene causes Metatropic. I don't really understand this question 100% unless you haven't met Kaela ;) I absolutely would and will (hopefully) have another child even knowing that their is a small chance we could pass this down. I adore my Kaela! Will adores his Kaela and Matt adores his Kaela! And our Kaela adores us! Kaela plays just like any other kid...well, maybe any kid that has an older brother. She likes to play with his cars and she likes to smack Will when she doesn't get her way...but hey, she's got to fight back and she does it well! She screams just like any other kid, she laughs, she climbs, she does it all! There is no stopping Kaela. Matt and I joke (I use that word lightly) that Kaela is going to be our problem child. We know she's going to be the one that brings out the grey hairs. She thinks she rules the house with her little index finger out telling everyone "NO!" Or "STOP" to anything SHE doesn't like. I know our kids might need an extra stool, or may need help with some things that other kids don't need help with but I think it just makes them stronger. I don't worry so much about Kaela going somewhere where she can't reach something or what not, because she's already found ways! Obviously I will do what I need to do to make sure she has what she needs in life, but she is one determined little girl! I walked into Will's room yesterday to find her sitting in the middle of Will's train table. Apparently when your arms aren't long enough to reach the middle of the table, you climb on top and sit on it! I just want people to know that our life is just like yours! We might have more doctor's appointments and we may have some extra hurdles, but it does not consume our lives. We really rarely even talk about Kaela's differences unless we have just been to an appointment or we are worried about something with her spine. Obviously we know it's there, but Kaela is Kaela. She is a little girl, a person, before she is anything else. I don't mind the questions people have, because that tells me you are interested enough to ask! If you say something that isn't okay, I'll let you know. I'm not scared to talk about Kaela. I LOVE my kids and would talk about them all day if you let me! I just want people to understand that we really are just the same as everyone else. My kids like to play and have fun just like any other kids. Kaela deserves to be treated just like any other kid her age. Even if you don't think she can do something, assume she can, because usually she can! She might do it in a different way then you and I, but she can do it! Yes, we will have to go through some things that the 'average' kid does not have to go through, but those things are not our everyday life. I do worry about her and Will both, and yes, I may have a day here and there where I worry more then I should, but I feel like that can happen with any child. Obviously I have some things I need to be more concerned with when it comes to Kaela, but I really don't want to ever make her feel any more different then she has to. I know when she steps out into the real world she will have to adjust to certain things too, but I truly believe that because we will raise her to be a strong person she will be fine. I also believe that in some ways this was the best thing that ever happened to us, because it's taught us so much in such a short time. It makes us better people. It educates us, and it's brought us into so many lives we never would have known.

The Kids love this Sit and Spin :)

Kaela on the train table showing off

This was taken at the natural history museum in Ann Arbor....And Kaela with her Bella

Guess who's expecting?!

2009-03-23T10:36:00.000-04:00

Just about everyone....except me! I just wanted to post about my how I'm incredibly jealous of all you pregnant women out there! I swear I've read about at least 3 of the blogging families are expecting baby #2 and my cousin is about to give birth any day, and basically I'm just jealous! But so happy for all of you!! I love babies and kids and I'm so excited for every one of you! We've had a cold winter, but apparently that didn't stop some of you from keeping active ;) My OB doc did tell me he thinks more babies are born in the summer because people get bored in the winter! I just wanted you all to know how excited I am for you even if I am a little jealous. I can't wait to have another baby...although I'm sure it will be a little while still. I guess I do have 2 kids 3 and under right now, as if I need more craziness :) Although I like to use the excuse that at least we wouldn't know what we were missing yet if we waited so long that the kids actually slept through the night and could poor their own milk. Where's the excitement in that! Anyway, I just wanted to say congrats to all of you beautiful glowing mommies out there (daddy and siblings too)!
....wondering when we are going to hear about Cole and Owen being a big brother ;)

Kaela's birth day...and a little more.

2009-03-07T18:15:00.000-05:00

I know I've been a disappointment to the blogging world (thanks to my friend Cat for reminding me lol) so I thought I better get on this before I disappoint even more :) I was thinking this morning about how I wanted to write about the day I had Kaela. I know we are going on 2 years in June so this is a bit late to be writing about, but I wanted to write before it's so late that I can't remember all the details....this is something I should have written about a long time ago, but after having Kaela we were so busy with just taking care of her and all the doc appointments it just never happened. Then we got busy with life with these two little rug rats and once again it was not on the top of the list of things to do.

Kaela was due on July 2nd, and I had not been working full time in the last few weeks of my pregnancy for a few reasons. I woke up on Thursday, June 21st early as always. I had been having contractions (minor) for a few days and I just wasn't feeling the best. I called my boss, Katherine, and told her I didn't think I was going to come in because I wasn't feeling the best. While talking to her I asked her to hold a sec. while I had a contraction, but it was really nothing. Later she told me she didn't think much of it either because I was talking and sounded fine. I got up and started doing things around the house. I went to the bathroom around 9 a.m. and thought I felt a pop. I wasn't sure, but I thought maybe my water broke. When my water broke with Will I knew it...nothing really happened this time. I went and woke Matt up and told him I thought my water broke. Will had been sick (throwing up sick) and was laying in bed with Matt. I just told him casually that I thought my water might have broke. He started to get out of bed, but I went to the bathroom again to check and see if I could tell if my water broke. I came out of the bathroom and said I was pretty sure that's what it was since I had some leakage (sorry to gross anyone out). I called labor and delivery at the University of Michigan hospital and they said they'd have a nurse call me right back. The nurse called me within 10 minutes I would say and by the time she called back I was in severe pain. I was having the most intense pain I'd ever felt, up until that moment at least, and I knew something was not right. When I had Will I had an epidural and loved every minute of my labor. This was different and I didn't like it one bit. The nurse told me I needed to come in right away. What was the hold up? No one was available to come watch Will who at the moment was throwing up in my arms as I'm having a contraction that is making me double over in pain. Matt had called his mom a few times by this point, but she was in a meeting or something and didn't get the call. We called my mom who was also in a meeting and kept asking Matt if we could bring Will to her. I was in the background screaming at Matt to hang up the phone and tell her to get here NOW! Matt called his dad at some point to come watch Will. I had a moment where I felt like my sugar was really low because I got really dizzy. I had gestational diabetes with both pregnancies so I had to check my sugar regularly and remember when I was in labor with Will I had the same feeling. They checked my sugar then but told me it was fine and it was just a feeling you can get during the last stages of labor. I thought of this while I was in my bedroom, at home, waiting for someone to get here and watch my kid so I could get to the hospital, where you are supposed to be when you have a baby. I checked my sugar anyway to be sure and to my horror it was fine...I knew what this meant....labor was progressing way too fast and I was going to have this baby here. I had to of said this 100 times to Matt and heard him say about a 101 times that I wasn't going to have the baby here. He later told me he thought I was just exaggerating and being a baby...This goes to show you, you should always listen to your wife!! I asked him for an epidural several times, but he just couldn't help...he did offer me Tylenol :)

Finally I told him through my screams of irritation, pain and fear I was serious. This baby was going to born at home. He said he'd pack Will in the car and we could go, but I told him it was too late he needed to call 911. He called 911 (finally) and they told him to get a bunch of towels and something to tie the umbilical cord with. Matt went and got the towels and a shoe lace from his shoe and brought them in the room. At this point I was on the floor by the side of our bed on my hands and knees trying to relieve the pain. Matt left the room for a minute to put a video in for Will so he was distracted and not worrying about what was wrong with mommy when my mom walked in the room and asked what was going on. I cried out that I was having the baby. I didn't see her face because I was in too much pain to look up but I can only imagine what she looked like walking in and seeing me there like that. The 911 operator asked who was there and told her to look to see if she saw the head crowning. My mom had to take my pants off for me because I was truly in so much pain I couldn't move. She tried rubbing my back which caused me to snap at her "don't touch me." I couldn't believe the pain I felt in that moment. My mom looked and said I don't see anything and at that very moment I had the strongest urge to push I've ever had and almost before my mom could finish saying she didn't see the head, the head was out. He told me not to push too fast, but again, I wasn't in the mood to listen to anything anyone else had to tell me about what to do during this. I think I pushed 2 maybe 3 times within 1 and a half minutes and Kaela was out! What the hell just happened here is basically all I could think about. I didn't know if I could move, if I should move, all I could think was MATT! He was still in the other room...(this was a mater of minutes). I screamed his name and he ran in to see our little Kaela in my moms arms. The 911 operator told us to rub her down with the towel. My mom dried her off but we didn't understand that she really needed a good rub down to get her going. Matt took her from my mom and listened to the 911 operator as he told him to tie the shoelace around the cord...he tied it, tight, to which he then heard about 6 inches from the body. He had tied it much further away so imagine Matt trying to untie a not from this to retie it closer to her body. (quite funny to listen to him say this). Kaela wasn't crying or making much noise, but the EMT's showed up about 3 minutes after she was born, got her to cry and gave her oxygen. She finally had some color and off to the hospital they took us. Just as they were taking me out of the house, Matt's dad showed up, wondering what had just happened :) The houses across the street were being built at the time so let me tell you how much fun it was being taken out after that with all these builders looking at me :) Kaela was born at 10:40. We found this out at the hospital when they nurse told us that the 911 operator logged it.

So Kaela's birth was incredibly fast and intense and scary, but luckily she came out easily and nothing happened during the labor that required medical attention! I was terrified and would NOT recommend this to anyone....ha :) I guess if you plan it, that's one thing (I might still consider you a bit crazy....) but if we have any more kids, I will be at the hospital at least 2 weeks before the baby is due....living there...even if I'm in the waiting room :) You think I'm kidding??

At least we got a beautiful baby girl out of it and a great story to tell!! I still cringe at the pain when I think about it though. One thing Matt learned during this experience? He will listen to me from now on when I tell him to do something (at least when it has to do with me).

There's not much new around here. I guess winter tends to be a boring time of the year since we are always locked up in the house. The kids are doing great. Kaela is adding new words all the time, getting to be bossier by the day, which I think she's learning from Will, and has quite the attitude too. She is very sweet though at the same time. Will is changing all the time too. I guess that happens around these ages (3 and 20 months). Will's talking a lot more and is just so funny! I love having these two crazy little kids around!!

Kaela has an appointment with the Orhtopedic surgeon on Wednesday. I'm a little nervous about the apt. because I know her back has curved a significant amount since the last time we were there. We will just do whatever we need to though to be sure she gets the best care for what she needs.

We did have a great, sunny and nice day here on Friday. Which is great, because I have Friday's off, so it was so nice to be home with the kids and get to enjoy the nice weather. We went out a few different times. We went down to the park in our neighborhood to play which the kids loved. I'll leave you with some pictures of the kids since that's what everyone really cares about :)

I love this face! It's her sucking her breath in and going haaa...like she's surprised or something. It's so funny!

Kaela loves her stools. Here's one use for them...

And proof that she's not always so sweet :)

Random happenings

2009-02-08T20:24:00.001-05:00

I figured I should probably post since it's been awhile. There's not much going on. My sister was here this past week visiting which was a lot of fun, but other then that we have been just hanging out. This winter in Michigan has been very cold and snowy (more then usual) so we've been in doors a lot playing games, with blocks, reading books and whatever else keeps us busy. One of Will's favorite things to watch on t.v. is the digger show, also known as extreme makeover home edition. If you've ever watched this show you probably know that the diggers, bulldozers, etc are on probably no more then 90 seconds, but Will sits through the whole show watching it while playing with his own diggers. It's pretty funny. He actually screams and gets really excited during demolition and sounds a bit like Ty from the show. It's really funny. He likes building 'houses' with his blocks and knocking them over with his diggers just like they do in the show. Here are some recent pictures of this.

Can you see how little that digger is? I think it's the smallest one he has...but he loved building and knocking them over with it!

Kaela on the other hand loves to knock anything and everything down with her bare hands. It's so much fun to drive your big brother crazy! Kaela is talking like crazy these days and adding new words all the times. She's talking in sentences to us too. It's pretty cool seeing as though she's only 19 months. I just saw some of her therapist on Friday last week and we were looking at her cognitive skills and she's very advanced. We looked ahead and she was doing and saying things that they have in the 36 month category and up. She's not walking yet and doesn't do a lot of things in the physicalarea that she should be doing at this age on the average charts, but we know she is on her terms :) She has such a big personality. She can be quite the snot sometimes but also so funny. The attitude is pretty big too :) She has some looks that could kill! She came out with some of these looks. I remember people saying when she was just a couple months old how she had some dirty looks :) That's my girl!

Here are some random pics of the kids.

What goes on when mommy is out

2009-01-25T19:26:00.000-05:00

I went out for a few hours this afternoon to meet my friend Summer. I checked my email tonight to find a picture of Kaela that Matt sent me while I was out. Here is the picture...

Apparently while I was gone Kaela got herself stuck in the blocks box. He said she said "daddy, daddy I need help." I love her expression. Apparently she does this quite often, although I've never seen her do it :) Thought I'd share a funny Kaela moment with you all.

Tag I'm it!

2009-01-23T16:58:00.000-05:00

I was tagged by Jennifer! We all know Jennifer by that sweet boy Simon, and if you don't check him out he is so cute and has the best smile!

Here are the rules:

1. Choose the 4th folder where you store your pictures on your computer. No cheating {cropping, editing, etc.}!

2. Select the 4th picture in the folder.

3. Explain the picture.4.

Tag 4 people to do the same.

This is a picture of Will on December 5th 2005. He was 3 days old...awww....They grow up so fast. He was such a sweet sweet baby...always so calm, quiet and just so darn cute. Well, he still is minus the calm and quiet I guess :) Now my baby is 3, my other baby is 19 months and I'm ready for number 3 :)

I'm going to tag...Catie, Emily, Jamie, and Jill

If you were already tagged, whoops, sorry...I'm not too good at this :) And just for the record, I didn't cheat :)

Happy Birthday...a little late!!

2009-01-14T13:07:00.000-05:00

I need to give a special belated(monday the 12th was his actual birthday) happy birthday wish to my fantastic husband. I'm sorry I didn't post this sooner...and I have no good excuse, but HAPPY BIRTHDAY MATT WE LOVE YOU!!! You are truly an awesome dad and a great friend and spouse. We are lucky to have you (almost as lucky as you are to have us ha ha). I love you Matt!!!
XOXO,
Sarah, Will and Kaela

Metatropic Dysplasia

2009-01-05T18:59:00.000-05:00

I don't really post about Metatropic Dysplasia, what it is, what happens, etc, because we don't really think about it on a daily basis and although it's part of our lives in some sense, it's really not. We don't look at Kaela as having dwarfism or MD (Metatropic Dysplasia), we just look at her as being our little girl. Obviously we think about it at times seeing as though we have many more doctor's appointments with Kaela then we do with Will, we worry about things like her neck, a little more when she's sick because of her narrow chest and lung problems, her spine which we look at everyday and see how wrong it looks, but that does not consume our lives. I wanted to post about it now though because I just received an email last week from a new family who found our blog by google-ing MD. We had hoped when we created the blog that someone might find us who was trying to find info about MD, but we never really imagined how satisfying it would be when it happened. We have actually had 2 families contact us now. I know that 2 doesn't sound like a whole lot, but we are talking about just over 80 known cases of Metatropic in the world! And of everyone in the world, the first family that found us through our blog is from England and the other family is from Mexico.

Metatropic is a pretty severe form of dwarfism. There are so few cases and very little information about it that they still do not know which gene causes it therefore they can only diagnose someone from xrays and an exam. There are several distinct traits that a child with MD has. Some of these things are large joints, a chest that is very narrow and sticks out in the front, long fingers and toes, curved spine (although this tends to happen after 6 months to a year after birth), short long bones, long torso, and flat nasal bridge. The xrays will show a lot of differences in the shape of the leg bones, hips, spine and neck. The biggest concerns and things that should be done as soon as possible are a full skeletal survey for diagnoses, xrays and maybe an MRI of the neck to be sure that it is stable. Children with MD have a very high risk of having their C1 and C2 vertebrates in their neck become unstable. This is life threatening so it's very important to have this checked. Many children with MD also have breathing problems. This can also be life threatening and should be checked on a regular basis. People with Metatropic also have severe curving of the spine. Children with very severe cases are born with a curved spine and a 'tail like appendage,' which is really their spine sticking out at the bottom of their back and above their bottom. Kaela does have dimpling there and you can feel her bone there, but it is not like you read where they make it sound like a tail. This can be scary to read, but we talked to specialist and were told that it's very rare for it to be severe enough to look like a tail. If a child is born with the bone sticking out and a curved back, it's usually the case that they do not live very long. The curving of the spine is also a very big problem. There is no doubt that the spine will curve and usually becomes very severe. They should be followed at least every 6 months for xrays and to see how the spine is curving. People with MD already have or can have breathing problems, so it's very important to watch the spine to be sure it's not affecting their breathing. Children with MD have both severe scoliosis and kyhosis or kyphoscoliosis. The spine bends in a s shape as wells as a a forward/hunch like position. The kyphosis is usually higher in the back then it is in Achons. Most people with MD have to have surgery on their neck as well as their spine. It seems as though there are not a lot of surgeries that work because the form of kyhoscoliosis is so aggressive it can break the rods that can be put in to straighten the spine. They are starting to use grow rods in children which are placed to straighten the spine but they have to go in every few month to adjust them, so they wait as long as possible to do the surgery. They usually fuse the spine once the child is done growing. They can have several surgeries through their lives including on other parts of their bodies such as their knees and hips. Joint pain is common too due to the large and tight joints.

Metatropic means changing form, so unfortunately we don't know what will happen we have to watch and see. The oldest living person on record with MD is over 70 years old so they can have a long life just as the rest of us. The sad news is they aren't sure if females will be able to carry a child because of their small size and spine issues, but time will tell. The best thing for us and the younger children is that there are more studies and research being done now so hopefully by the time our kids do need surgery there will be better ways. It can be scary, but they are just as precious and deserving as any other child. Kaela is really smart and although she does not walk yet (at 18 months) she gets around just fine! Both of our kids are a joy to have. Although I wish I could take away the things she will go through in her life, I wouldn't trade her for anything.

Santa came!

2008-12-31T15:05:00.000-05:00

I didn't want to be the last to post about Christmas, so I thought I better get going on that. Christmas was so much fun this year with the kids. Matt and I thought Will was going to have so much fun this year since he really understands it a lot more then last year. We were right about Will, but Kaela surprised us with how much fun she had and how she reacted to it. Matt told me before Christmas that he was just as excited to see the kids on Christmas morning opening their gifts as he was as a little boy opening his own gifts. I thought that was really sweet. We spend Christmas eve with Matt's family which is always a lot of fun. We went to his mom's house where we got together with his parents, his aunt and uncle and his grandpa. My parents came too. The kids had so much fun! Grandma and Grandpa got them a 50's diner/kitchen that they just loved! It is so cute! Will was serving Kaela and Kaela was so cute pretending to eat the plastic food. Then Kaela opened her gift which was a ride on toy that she absolutely loved! She was trying to get on it before it was even out of the box! She was thrilled. Will wanted to ride it and that didn't go over so well with Kaela, but it was fun :) Will had fun pushing her around the house so it worked out. They got some fun books, clothes and gift cards too!

Christmas morning they woke up and were very excited to see what happened over night! Will acted a bit shy and Kaela was just excited to get down and look at everything! It didn't take Will long to go from shy mode to ripping through present mode.

Matt's parents came over to join in the festivities of Christmas morning. After we opened presents here, we went over to my parents where we opened lots of new fun toys, clothes and mommy and daddy got some cool stuff for the house! We then drove to my Aunt's house where we met up with my cousins, grandparents and my parents. It was a LONG day, but the kids had a blast and did great! They were so good all day and really enjoyed all their fun new toys. I took the tree down the day after Christmas

just to make room for all their new stuff!! Christmas Eve...Will and Grandpa Laurin

kitchen on one side, booth on the other.

Hope you enjoy the pics. I know I missed a pic with Matt...but I don't think I got one of him and the kids..other then opening presents...whoops. I get so caught up in the kids it's hard to remember things like a nice family photo!! Hope you all had a great holiday season! Happy New Year!! We hope you all have a wonderful 2009 full of much fun, laughter, love, happiness and good health!!

xoxo,

Sarah, Matt, Will and Kaela

Oh Christmas tree ...

2008-12-18T14:44:00.000-05:00

We all know that I'm not the best blogger, but I'd like to use the excuse that my kids have been sick for not posting recently. They have seriously been sick for over a month now. I have been home with 2 sick kids for the third day now and Matt stayed home with them on Monday. I took them to the doctor yesterday and Kaela has a double ear infection along with a sinus infection. Will has the stomach flu and sinus infection. They both got antibiotics, so lets hope this rids them of all this junk! I sprayed the house down with an insane amount of lysol and wiped everything I could touch with clorox wipes. Hopefully this helps too.

Anyway. I thought I should post some pictures from the last couple weeks. We went to get our Christmas tree about a week and a half ago?? which was fun. Will had fun this year walking around the Christmas trees and playing with the cut off branches. Kaela was happy being held all bundled up. It was freezing (literally), but we found a tree and brought it home. The kids had fun decorating it too. Will was really into looking at all the different ornaments and telling me what they were. Kaela tried to repeat it all and loved the 'balls' all over the tree.

Here are some pictures from our exciting adventures. Now we just wait for Santa!

Happy Birthday our Sweet Boy!

2008-12-02T11:05:00.000-05:00

I can't believe my little man is turning 3 today!! I never really understood the meaning of 'time flies when your having fun" until I had kids....Will, we love you so much and are so lucky to have you! You bring so much laughter and love to our lives. I have so much fun learning from you and watching you learn from us. You are truly one of the funniest people I've ever known. You say the cutest things and you don't even know it! For example, on Thanksgiving when Grandpa Laurin was trying to take your cinnamon roll and we told you that he was just kidding. You responded with, "no, he's not kidding, he's trouble!" You always have us laughing. I guess that's part of what makes you so cute. Mommy and Daddy are so proud to be able to call you our son and I can tell by the way your little "Kaea" looks at you and follows you around that she just adores you too! You are constantly changing and while I love watching all the new things you do and say I also love that part of you that is still my little baby. Like when you get out of the tub and want to be 'rocked like a baby' or when you say 'come see me' and just want to be held. You will always be our little boy and we will continue to love you more and more every day! I hope you have a great birthday!! XOXO

Mommy, Daddy and Kaela

Visit with Aunt Rachie`

2008-11-28T19:55:00.000-05:00

Aunt Rachie (Rachel) got here on Saturday and is now on the plane back to warm Texas. We had a great visit with her and the kids had a blast hanging out with their Aunt. Rachel stayed with them all day on Monday while Matt and I were at work and they all survived!! They really had a blast together and both Will and Kaela just loved being with her. Kaela tends to call everybody "Ma Ma" and Rachel really seemed to enjoy this :) Will was very excited to have her around and wanted to sleep with her so they slept a couple nights on the couch together. Very cute!! I was also so excited to see my sister and really enjoyed our time together. I can't wait to see her again soon and we hope to go visit her (hopefully) in the next few months!! Here are some pics from our visit with Aunt Rachie.

Less then 24 hours....

2008-11-21T16:54:00.000-05:00

Until my sister Rachel is in Michigan!! My sister moved out of Michigan after she got married a couple of years ago and is currently living in Texas. We miss her so much and can not wait to see her!! The last time she was home was last December!! The kids have changed so much in a year, so I can not wait for her to see them in person. Of course we talk to her on the phone lots and I email with her almost everyday, but that's just not the same! My mom and I and the kids are off to the airport tomorrow morning around noon to pick her up. Will is excited to see the plane. I think he thinks he's going on the plane...but he'll be excited to see them I'm sure and to see Aunt Rachie!

We are also going to the movie Twilight tomorrow afternoon with a couple of my friends. I got the 3 of them hooked after Katie got me hooked :)I will be posting pics. after her visit, but for now, here are a couple of the kids.

Stay away....

2008-11-03T19:38:00.000-05:00

We have pink eye! Poor babies woke up this morning with eyes that were crusted shut. Kaela had two eyes that were crusted and very puffy and will had one eye crusted and puffy. I took them to the doctor this afternoon and sure enough they have infectious pink eye! They started drops around 2 today so they are home again tomorrow.

Speaking of tomorrow....

The big day is finally here! I am very anxious and excited about this election...be sure to get out their and vote, regardless of who you are voting for!!

I'm making up for all my weeks of no posting. I bet some of you aren't even caught up on the last 1 or 2 post :) I hope everyone has a great election day. Happy voting!

Halloween was a hit!

2008-11-02T07:51:00.000-05:00

The kids, especially Will, had a great time trick or treating. We went out with our neighbors across the street. Will went to a few houses last year and started understanding it and enjoying it after a few houses, but this year he was excited about it right from the beginning. In fact he sat on our porch for a few minutes eating tootsie rolls out of our bowl before we left. He was a little slow since eating candy on the way was top priority, but it was still lots of fun. Kaela enjoyed the stroller ride as well as a kit kat bar. Will being allergic to nuts/peanuts he misses out on pretty much all chocolate candy, but Kaela didn't mind helping get rid of them as you will see in one of the pictures :)

Here are some pictures of our little princess, Tinkerbell and our macho spiderman!

Saturday morning the kids got into the candy. Kaela found a sucker in her brothers bag. Can you guess what color it was?

Pumpkin carving time!

2008-10-29T19:29:00.000-04:00

This past weekend we carved pumpkins with the kids. Will was very involved and really enjoyed it. Especially when he could use the pumpkin knife. Kaela was excited and ready with a spoon in hand, but got scared when she saw all the pumpkin guts. She enjoyed watching from a safe distance. Here are some pictures of the kids carving pumpkins. We hope you all have a fun and safe Halloween!

Kaela got her hair trimmed the other day. It wasn't planned very well and I didn't bring a camera, but you can see it's not in her eyes in this last photo :)

I was tagged just for a post!

2008-10-24T18:11:00.000-04:00

I've been tagged! And called out by Catie, I guess that means I have no choice other then to post this, just for you Catie ;) since i've posted this I've realized I've also been called out by Destini so this post is dedicated to Catie and Destini!! Thanks ladies! :)

{10 Years Ago I ....}
1. was 18!! graduating h.s. and off to school!
2. was much skinnier!
3. I was young and had a lot to learn!
4. drove an acura integra 2 door (no room for 2 car seats!)
5. wanted to be an elementary school teacher

{5 Things On Today's to-do-List}
1. Matt and I are meeting friends tonight! Mommy and daddy night out!
2. A crap load of laundry
3. Meeting my grandparents for shopping and lunch (they wanted to take the kids shopping, how sweet).
4. get the kids to take a nap
5. change diapers, feed kids, play

{5 Things I Would D0 if I Were a Millionaire}
1. I would buy a new house with no carpet and lots of rooms and lots of yard!!
2. Pay off all debt
3. SHOP
4. Get my mercedes
5. Put money away for my kids to have a great life!

6- I know there was no 6, but I would also demand we adopt a child and have lots more :)

{5 Places I Have Lived}
1. Germany (my sister was born here and lived there for a few years..it counts even if I don't really remember....)
2. South Lyon, MI
3. Ann Arbor, MI
4.Ann Arbor, MI
5. Dexter, MI

{5 Jobs I've Had}
1. 1st job- babysitter
2. Ice cream shop/delhi (LOVED IT)
3. live in nanny
4. Property management company
5. Law School Fin. Aid Officer

A little random info about ME :)

A letter

2008-10-21T21:27:00.000-04:00

Dear Aunt Rachie,

We just wanted you to know that we love you and miss you. Mom may not always be good at updating the blog like you want her to, but we do think of you all the time. We can't wait to see you in just a few weeks (30 days)!! We can't wait to play and color and read with you. Kaela and I have grown a lot since we saw you in December so you are going to be really surprised when you see how big we are and how smart we are. We will have lots of fun! We miss you lots and can't wait to come visit you one day soon too!

We love you! XOXO

Will and Kaela

Kaela loves to wash her face and hands and Will loves to play on the computer...with no clothes on...he DOES have a diaper on, but it does look pretty funny!

Finally! A Post

2008-10-12T20:00:00.000-04:00

After weeks of nothing and a lot of threatening emails from my sister I am finally posting. I told myself I would do this before the end of the weekend so I figured since it's Sunday at 8 pm, I better get going. I don't really feel like I have a whole lot to share though. Everyone is doing pretty well. Both of the kids got the cold that seems to be going around a couple of weeks ago. Matt and I both got mild versions of it, but nothing too bad. Kaela still has a pretty bad cough and it seems to be getting worse, so I'm going to take her to the doctor's this week.

We have been really enjoying the fall weather. We have had some really nice weather and perfect for going out to the cider mills and pumpkin patches! We have gone to a couple already this season and will hopefully get to go a couple more times before the snow or cold weather comes. Will is at a really fun age to enjoy the horse drawn hayrides and the hay maze at one of the farms near our house.

Tonya, Knoah's mom, had a Halloween party at her house yesterday for the kids which was a blast. I will save that for another post this week.

I haven't updated on school and daycare...Will is doing really well in school. Daycare is still hard, but he is doing better I think. He had a lot of time being at home with Daddy so I know it's a big change for him. Hopefully soon things will get easier. He is talking a lot more and making more sense too which is very exciting. He is at a really fun age...but also one of those ages where I want to pull my hair out! He can be so sweet and then he turns around for one second and he is a monster! I love him, but he sure knows how to test my patience. He has also started potty training which is very exciting! Go Will! He poops and pees on the toilet. He doesn't do it when we are out of the house but on the weekends he will do it all day, so we are very happy with his progress.

Kaela is doing really good with daycare. She seemed to transition much easier then Will, but when she's home she is hooked to me at the hip. She does not want Matt, she doesn't like to be put down, she just wants mama. She is a big snuggle bear and I love it. It can be a little tiring though when she screams when I put her down or when Matt takes her, but overall I love it :)

I will end with some pictures of the kids. If I don't, I know I will get some more nasty emails from my sister :)

Will's First Day of School

2008-09-08T19:57:00.000-04:00

Our little boy is growing up! Will started pre-school last week. Wednesday was his first day and he did GREAT! His teacher, Ms. Sue, said he was a delight! We were pretty impressed with how well he did since he has never been away from home. He has pre school Monday thru Thurs mornings, but unfortunately he missed his 2nd day of school. He woke up at 3 am that morning throwing up! Poor guy (and mommy and daddy too). Doing laundry, giving your kid a bath and changing sheets feels weird at 3 A.M. He slept in and did great all day. We think maybe it was something he ate, but we didn't want to risk it sending him to school...that and we didn't want Will feeling horrible and sick at school. So today was his 2nd day and it wasn't quite as easy. Matt's parents are watching the kids on Mondays, then they will go to daycare Tues-Thurs. and I am home Friday's. So today Matt's mom was here watching the kids and today was Will's first day riding the bus to pre school. I wasn't here (I am kind of bummed I missed it now!) but Matt's mom, Liz, put him on the bus. I guess he was fine until he realized Grandma wasn't staying. So he had a hard time with that and the note from his teacher today said "Will was a little weepy." Aw, my poor baby boy! Tomorrow is another BIG day. First day of daycare for both the kids. Kaela will be in the toddler/infant room and Will is going to be in the preschool house. Will will be picked up by the bus in the morning, taken to preschool and then back to daycare preschool until after work. So lets hope both the kids do great tomorrow! I promised my sister I would update with some pics and try to upload another video so I will leave you with some more of my cutie pies on Will's first day of school! Enjoy the video Aunt Rachie. We will try and post the other one later!

Will's very own Locker! Kaela getting ready to take big brother to school.

Will up earlyWill at the school. We didn't really get any pics of him in school because they took him so quickly and said 'bye mom and dad!"

MRI Update

2008-09-02T19:55:00.000-04:00

Good news! Kaela's Orthopedic surgeon called me at work today to let me know Kaela's MRI looks good. It shows that her cervical spine is stable! Yea!! Great news. We will continue to watch it since it is a big concern and can happen at anytime, but we are very happy with this news. The day of Kaela's MRI was long but went really well too. Will was GREAT the whole 5 hours we were at the hospital. Lucky for us the new Children's and Women's hospital they are building happens to be right outside of the window of the waiting room we were in. Of course will enjoyed watching the diggers and welders. Kaela did great too. She didn't like being weighed and measured, but otherwise was great. Matt went back with her when they put the mask on to make her go night night. She was asleep for awhile, but when they called me back I walked in to where she was and she was sitting up in the bed sucking on her Binky as happy as could be. She was so good. She didn't cry at all even after waking up in a weird place with strange people. We were all tired and all ended up falling asleep together after we got home for a couple hours, but overall it went much better then expected!Here are some pics from our adventure at the hospital.

Our first Video

2008-08-24T21:12:00.000-04:00

I've never posted a video before, but thought you all might like this after not getting anything for so long. Two post in one night! Be sure to check out our post below :) I just took this video..it's so cute! You get to see just how cute Kaela is "in person" and kind of see how crazy her big brother Will is in the background. Excuse the mess in the background and all over Kaela's face :) ENJOY!!

It has been too long!

2008-08-24T19:02:00.000-04:00

Ahh, I am finally writing. I have to start by apologizing to my fellow blogging friends. I know how much I enjoy reading everyone's post and seeing those cute kids all over the country and world, so I am sorry I have not been returning the post. It seems as though the last few weeks has been extremely busy and quiet all at the same time. My cousin Becky and her son Hunter were in town a week ago from North Carolina, and we got to hang out with them a few times. Becky and I grew up together until she moved to NC, and have been pretty close, so it's always GREAT to see her! Hunter is getting so big and him and I are good buddies! He's so cute. Becky's husband wasn't able to make it, he had to work, but hopefully we get to visit them soon. We missed you Kevin! We also found out Becky is expecting baby number 2 which is super exciting!! Here are some pics of their visit.

.Becky and Will

Becky and Kaela Me and my Hunter

Will and his cousin Hunter

The kids are doing great! We have been trying to keep busy doing things on the weekend while it's nice. It has been pretty nice here too for the most part. We went to Chicago a couple weeks ago just for a night. It was kind of a last minute decision, but it was a lot of fun. I thought maybe it would be a little crazy, but the kids were so good. Matt picked me up after work on a Thursday and we went straight from their to Chicago. We stopped in St. Joseph Michigan to get food and walk around a bit. It's such a cute city. Right on the lake, lots of little shops. We didn't get to Chicago until about 9:30, which was fine. We just hung out and went to bed, then got up in the morning for our day in Chicago. We did shopping in the morning, ate lunch at the Cheesecake Factory and then went to the aquarium. The kids were really great for the most part and slept most of the way home. It was a fun trip.

Otherwise I think things have been fairly typical. Kaela got her new brace about a week and a half ago. It fits really well and she doesn't seem to mind it at all. She also got her afo's (ankle feet Orthodox) and she seems to mind those a whole lot. She screams the whole time she has them on. That's always a joy. So we will slowly work on those. We need to get her some shoes to fit over them too. She is into everything these days. In fact right now she's trying to type her own post. She is quite the little diva. She needs what she wants when she wants it ...and quite often gets it. She's walking along the couch really well too. I still think it will be quite some time before she's walking on her own, but we are okay with that. We do have Will who enjoys running 90% of the time rather then walking so he keeps us busy enough right now.

There is some upcoming big news....a few things actually. First, Kaela has an MRI Tuesday. They are doing a flexion/extension MRI of her neck. Keep us in those thoughts if you remember...hoping that goes well and comes out good. She will have to be put under general anesthesia, which sucks, but we want to be sure her neck is okay. I will try to do a little post this week about neck issues with Metatropic babies/people.

The other big news is....Will is starting pre school in a week and the kids are starting daycare in 2 weeks. This is HUGE! Matt has been in school and staying home with the kids during the day since Will was born. They have never been in daycare, so this will be a big step for us. Will is going to be going to preschool in the mornings and then will go to the daycare in the afternoon. He's a young preschooler, (2 1/2) but I think it will be really good for him. I always said I wanted him to start preschool early since he hasn't been in daycare, but now all at once it's a little hard to think about. Oh- the reason they will be in daycare is because Matt's starting a internship that is full time, and I will still be working my job. I'm excited for Matt, i think this will be really great for him, but also really hard for him. Remember he's been the one that has been home with the kids all this time. I think it's going to be really hard on him. Lets hope it goes well for everyone. It will only be 3 days a week at day care which is nice. I have Friday's off and Matt's parents are going to take Monday's off for the 4 months of the internship. We are very thankful to them for that because it helps us save money and we know they will be in good hands with their grandparents. Daycare is so damn expensive. Excuse the language, but I'm not sure I know any better way to describe it unless I use more offensive words :)

So that's a quick overview of things that have happened and things to come, as well as some cute pictures of some cute kids :)

A little girl and her big cup My handsome boy! He's not a little baby anymore :( They grow up way too fast! But you both will forever be my babies and my shinning stars!

I nasty

2008-07-30T18:54:00.000-04:00

I gave the kids a bath after dinner tonight since Will's helping feed Kaela turned into Kaela being covered in yogurt. I give them their baths take them out and get Kaela dressed. Will is walking around with no diaper and says, 'Mama I potty." So I ask him, 'do you need to go potty?' He says I potty I potty, sure enough, he peed right there on the kitchen floor. So I say tell him we don't go potty on the floor we only go potty in the toilet or diapers, not the floor, "that's nasty". His response? "I nasty." Not asking, not upset about it, just telling me in a 'well of course it's nasty, I'm nasty" kind of a way. It was quite funny.

Here's a pic of the little man thinking he's pretty cute after mom laughs at him...

Kaela after her bath just being her cute little self.

Update on Kaela & boys, there's a new girl in town!!

2008-07-26T18:22:00.000-04:00

Kaela had her scheduled appointment with the Orthopedic surgeon here at the University of Michigan Wednesday. It was a long day! We got to the hospital before 9 and were there until about 1:10. It makes for a longer day with a 13 month old and a 31 month old :) They were both very good though. We started with xrays of Kaela's spine to check her scoliosis and kyphosis. We then went to meet with Dr. Hensinger, Kaela's ortho. He brought the pictures of her spine which I could tell right away were quite a bit worse then they were 6 months ago. Her scoliosis has increased quite a bit, just about doubling, and her kyphosis went from just about nothing to a 32 degree curve. (I think that's right). I know 32 doesn't sound that bad in comparison to some, but with the scoliosis and knowing this is not going to correct itself it is pretty bad. Plus it didn't take long for it to get to this point. The Dr. was actually a little concerned about the kyphosis. He said they don't really want it to get past the 30's, and that they try not to do surgery until the kids are at least 3, but we are going to have to watch this closely :( Kaela's back brace has been way too small for awhile now, so he ordered a new back brace as well as afo's (ankle/foot orthodics) because her feet are really turned in. Her legs are bowed too but we are not worrying about those right now. Since she's standing so much now, we need to get these on her feet/legs to help her feet stay straight as she stands. She likes to stand on her ankles sometimes as well as her tippy toes, which doesn't look like it feels too good. Hopefully these will help her out.

So after we met with the Ortho we went to check out and go down to get fitted for her back brace and afo's. While I was waiting in line to check out I had Kaela's brace around my arm and this lady said, 'look she has a brace just like yours.' So I look over and there's the cutest little girl sitting there with her mom. My first thought was oh my gosh, that little girl has Achondroplasia! I didn't really know if I should say that and all I could that about was me saying, 'Does she have dwarfism?" and the lady saying "What? NO!" and me shoving my foot in my mouth:) I mean I was sure of it but still....so instead I asked if her daughter used the brace for scoliosis or kyphosis or both...then she told me, oh she's a dwarf. I said OH MY GOSH! MY DAUGHTER IS TOO! I was so excited. I mean I knew this, but she told me and we now share something in common :) We both KNOW we have dwarfs :) okay so anyway, I got talking to her while Matt was out in the hall giving me looks like would you shut up and get moving, not knowing why I was talking to this lady. So anyway, the mothers name is Misty and I think her daughters name is Hayley. She is 28 months old and seriously is one of the cutest little girls I've ever seen! Kaela is going to have some competition now :) Misty said she has never met anyone else in person and that the people she talked to have older kids so she didn't think there were any kids around here the same age. They are from Milford, assuming I remember correctly. I told her there are a bunch of cuties around the same age and said she has to get together with all of us which she sounded very excited about. So that was very exciting. I can't wait for you to all see how cute this little girl is. I thought about asking to take a picture but didn't want to sound like some weirdo asking to take a picture of her kid that I just met. So that's pretty exciting.

Now that's not the end of our excitement. Matt and I got an email last week from a father of a little girl in the UK who has Metatropic Dysplasia just like Kaela. So that's pretty cool right? Now most of you know MD is very rare so of 80 some people in the world, here's another little girl's family that finds us who's daughter's name is Kayleigh. Which is kind of cool seeing how close their names are, then we find out Kayleigh was born 6 days after Kaela!! And not six days and 3 years, but just 6 days! They were told Kayleigh had Achondroplasia sometime after she was born (not right away though), but just found out in June I believe she has MD. I think they are going through what we went through in the 1st six months now since they just found out she has MD. MD has quite a lot of complications and can have some life threatening problems, so I think it's been hard for them thinking she has Achondroplasia which in most cases doesn't have a ton of problems, to MD :( So Matt and I have been in touch with her dad quite a bit the past week. They seem like a very nice family and I know once they get through all the scary stuff you hear when you first find out it will be easier to deal with. Of course we will have things to go through their whole lives, but I know the first six months was very very hard. Kayleigh and Kaela look a LOT alike too. I won't post any pictures because I want to respect their privacy. Maybe one day..but not for now, but trust me, she's cute :) So anyway- that has been really exciting for us. Hopefully one day we will be able to meet them in person!

So otherwise we are enjoying these nice summer days while they are here and looking forward to my cousin and her son Hunter visiting soon!! The kids are growing and changing so fast! It's really fun watching them play together and watching how they interact with each other. I hope everyone is having a great weekend. Tonya and Will (and family) we are thinking of you and are here if you need anything!

A few pics of the kids for your enjoyment!

Look at those arms stretch :) It's so cute she does this every time she sees us now :)

Will loves talking to his Aunt Rachie in Texas..as you can see he also loves playing in flour with this trucks (even right after a bath)!

The kids at the hospital being so good.

P.S. I added a guest book. We'd love it if you signed it. It's fun to see who reads (even those of you who don't comment)! :)

Check out my Guestbook!

2008-07-21T13:47:00.001-04:00

Irritated

2008-07-17T23:04:00.000-04:00

Okay, I need your opinions, and I really want your honest thoughts or opinions. The neighborhood I live in started a blog about a year ago to keep everyone in our community updated on new developments, for people to post questions, comment on things about our neighborhood, etc. The person that started the blog lives here in our development. So today their was a new post just letting us know he gave the blog a new post, and posted a 'funny' picture. Well for some reason the picture really bothered me. I don't want to post the picture here, but want your opinion on this, so if you click here you can see the photo. If you look closely at the person in the photo it looks like this person may have down syndrome. My first reaction was, 'this really isn't appropriate to post on a community blog,' and obviously having Kaela, I'm a little more sensitive to things like this. I don't know if the picture is poking fun of that person (but we all know how people can be), but I thought it could really offend someone...so I left a comment. This is what I said:

"I'm not usually one to comment on something like this, but I am feeling a bit bothered by the pic. I don't know if the intent was to poke fun or not, but it seems as though the person in the picture may have a disability and being the parent of a child with a disability I think this is a bit insensitive. I just think that this could offend someone, and I really am not sure what the point is? I can understand how the photo itself can be funny, and I'm sure you did not intend to make fun of the person or disability, but I'm not sure that the picture is appropriate for a community blog. I really am not trying to be the annoying neighbor, I am just trying to think of the affect this could have on someone that may read/see this. Sarah

So I was trying to be nice and say this in a nice way. Just my opinion. This is what he wrote back:

Um-it's not poking fun at anybody. It's a picture of a person who is using a couple of trees to prop up a champion stand and that person just happens to be in the middle of it. The point is, the trees just happen to be positioned in the 2nd and 3rd place spots. If this picture is TRULY offensive to anyone else, I'll take it down.

Okay, I really am not usually like this, but this pissed me off even more. I felt like what I had to say didn't mean anything and I felt like I was being treated like I was stupid. Maybe I'm just having one of those days, but it really bothered me. I came home and cried. I said to Matt, if that person in the middle was a little person I would be really mad. It just so happens to be something different. I mean I could be wrong, (it wouldn't be the first or the last time!) but it sure looks like this person has a disability. So anyway- I was really upset. I thought, oh, okay, if two people are offended then it's worth taking down, but not just one person. Plus I was pissed about the way he explained the picture. As though I'm an idiot and I didn't understand the 'joke.' So I wrote this:

"I have enough sense to understand what the joke is, and even GET IT! But my point is that their happens to be a person with a disability in that picture. I guess I'm sensitive to it since my one year old child has a disability. Apparently one person being offended is not enough for you-and apparently you'd rather have this turn into an argument about who thinks what. I just stated my opinion as a person who has to deal with this kind of ignorance every day. I don't find the joke offensive, I said I believe it could offend someone seeing as though it happens to be a person with a disability, obviously that doesn't seem to matter."

So after this he decided to take it off the blog. Maybe I am being overly sensitive, but I just found it to be rude and and I found it to be even more rude when he made that second comment. So I want your opinions. I really do, so tell me the truth :) I know people who have children with down syndrome and I'm sure they would not appreciate seeing that. I don't know, just as this person does not know, if their is a family in our neighborhood that has a child with DS and might not appreciate that picture. UGH. It is 11:33 at night. I sat here thinking about blogging about it so had to get up and get the laptop so I could do it. I just picture Kaela standing in that picture and knowing I would appreciate it if someone stood up for my child in a case like that. Anyway. I'm off to bed.

Slacker Blogger

2008-07-14T19:10:00.000-04:00

I know I know, I am a slacker. I have neglected my blog and some of you have reminded me of this (thanks Rachel and Tonya)!

I will try to update you with a quick "what we've been up to" post.

Lets see this past weekend was fun. We went to Hannah's 4th birthday party which was lots of fun! They had lots of good food, a pool, swing set, sandbox, ride on toys and Will's favorite, a trampoline! Will had a BLAST!! Now I want to get a trampoline for our 4 ft yard. Okay it's not quite that small, but it is pretty darn small! Thank you Catie for inviting us, we had a great time. It's so nice being so close to so many great families! We feel really lucky to have met so many wonderful families. We were lucky enough to see Tonya, Will, Knoah, Hannah and Jacob their too!! For those of you that haven't met them or Catie and her family, they really are as great as they sound on their blogs :) Actually better. Really fun and nice people.

So for those of you who remember, my sister was supposed to come home in June. She was going to be here for the end of the LPA Conference and for Kaela's b'day, but unfortunately she faked being sick and cancelled last minute. Okay, she didn't really fake it but I like the reaction I imagine she has in my head :) Love you Rachie. She really was sick

and we were so sad that she wasn't able to come home, but we understand. Now we don't know when we will get to see her, but hopefully sooner then later. I would love to make a trip out to see her, it's just so expensive with all of us and trying to save for next years trip and our trips to the doctors. So feel free to send blank checks made payable to Matt or Sarah :) Just kidding...well sort of.

Art fair starts this week Wednesday in Ann Arbor. This is a HUGE event. People come

from all over the country to sell their art, whether it is pottery, paintings, life sized 'people' (which are truly amazing they are so life like), and so many other forms of art. I love going. I work right downtown so we get to enjoy it on our lunch break too. Hopefully my mother will be participating in it next year. My mom is a very talented potter...but I will save that for the next post. I have some great pics to share with you, but have to figure out how to get them to upload....so stay tuned.

Last, but certainly not least, we saw Dr. Pauli last week. It was really a great visit.

Dr. Pauli is such a great guy. Cassie is wonderful too. I just love how he takes the time to go over EVERYTHING, to answer questions and he's so prepared. Most of you know how rare this is. I mean how many times have you walked into the Orthopedics office and they didn't have pictures of the films you just took a week ago (sometimes an hour ago), or they are missing some notes, etc...Well Dr. Pauli is always organized and stays right on track with the conversation. He said Kaela looks GREAT and is doing great. He said that he's never told parents of a Metatropic baby not to worry about the lung/breathing issues (most M

D babies are born with many breathing/lung problems) but he said we don't have to worry about that. Kaela is very healthy! We have to continue to watch her neck and spine on a regular basis, which is of course a big deal, but expected. This reminds me I never posted about our apt. with Dr. MacKenzie and Bober from Delaware Childrens hospital . They were WONDERFUL too I might add. Dr. Mackenzie wants Kaela to get an extension/flexion MRI soon and says she needs a new brace, which we knew, but otherwise looks good. I guess there was something on her xrays that showed a little concern so he wants to be sure

her neck is stable. That's a little scary and frustrating because we had just seen the docs here literally a week before who said we didn't need that. UGH. But we see our docs here (Ortho) next week and Dr. Mackenzie should be emailing with our doc so this should get done. The neck is not something we want to mess with and it's very common for kids with Metatropic to have their c1 and c2 vertebrae fused at some point so we must watch this closely...so lets hope for the best with that.

I will keep you posted on that too.

Anyway-so much for not having a lot to say. I will leave you with my cuties!

Party Time!! (with a little picture overload)

2008-06-29T09:15:00.000-04:00

Kaela's 1st birthday party was a success! We thought it was going to rain all day but thankfully it stopped just in time and stayed nice out the whole time! We set up a big bouncy house for the kids to jump in which seemed to be a hit. We had lots of friends and family who came to celebrate Kaela's big day with her which was really great. Kaela had a lot of friends come including Knoah and his family (Tonya, Will, Jacob and Hannah) and Owen (with his mom Cat)!

We were so happy they could make it and really appreciate them making the drive to share in Kaela's big day. Plus those boys are sooo cute, it's always fun to be able to grab them up and give them lovin.

I was a bad mother though and didn't give Kaela her own cake. I made these two big cakes that took up quite a bit of time, I didn't get around to making Kaela her own. Instead we gave her a piece of cake, which she enjoyed very much!

Kaela got lots of super cute clothes, some toys that she LOVES including a little table from Knoah and his family that is perfect for her to pull herself up on, some of the 'little people' toys, and some dolls.

Will was all over the place so I didn't get many pictures of him, but by the time I did get to him he was sooooo messy from food, playing outside and just being a busy 2 year old boy :)

Thanks to everyone who came and for all the great gifts! We appreciate it all so much and are so lucky to have you all in our lives!! I will end with some more pics my other close friends and their cute kids.

Jacob and Knoah Kaela didn't make it to the end of her party!

My friend Jen's daughter Selah

Elora and Tyler bouncing

can you say CUTE PICTURE!! Jacob, Knoah and their daddy Will

Hannah always smiling Ava such a cutie pie

Tyler and Kaela playing together (Tyler is a sweetie...and soo smart, hopefully Kaela's taking it all in :) And Chris with his boys Michael and Zac

Back From LPA National Conference in Detroit!

2008-06-26T08:37:00.001-04:00

We are home from the conference and had such a great time! We met so many great people and families from all around the country (some even out of the country). It was really such a great feeling being around all these little people and thinking how in 13 years Kaela and a large group of these kids, will be the teens we saw sitting in groups along the wall, dancing at the dances, and AWAY from their parents :) Everyone was so nice and welcoming to us first timers. One very exciting bit of news is that we actually met someone there who has Metatropic Dysplasia just like Kaela. Her mom was there and I heard her mom say her daughter had Metatropic at one of the events and I just about jumped out of my skin! I went to talk to her and we met her daughter Heather. Heather is 18 and graduated at the top of her class and is now on her way to college to be a teacher! We were thrilled to have met someone with the same thing as Kaela. I never would have expected too since it's so rare (80 some known cases)...but we did! AND they live in OHIO. Ohio is right under us! It's just very exciting. Heather has gone through 13 surgeries and was very open about sharing her experiences. All people with Metatropic are different, so we don't know what to expect in terms of Kaela and surgeries. We of course hope that it is far less, or even better, none, but we just won't know for some years hopefully. One thing we hope Kaela does share in common with Heather is being at the top of her class and having the great attitude that Heather has.

We did meet the docs, but I will post later about that. I will post some pics too. Unfortunately I don't know that it would be okay to post pictures of other kids here since I don't have permission so I will post some familiar faces :) Now we can't wait to go to the convention in New York next year!!! Hope to see all of you that we saw this year and many more of you there next year!

Will showing off his dance moves (blue stripped shirt)

Happy 1st B'day little princess

2008-06-21T09:35:00.000-04:00

Happy Birthday Kaela! Kaela turns 1 today on the first official day of summer! One year ago today, in about 1 hour from now (10:40 or so) Kaela decided to make her grand entrance on our bedroom floor! Apparently she wanted out and NOW because about an hour after I THOUGHT I was in labor she was here!! One exciting day for us :) We feel so lucky to have you in our lives Kaela. You have changed us in more ways then you will ever know and for the better in every way! We love you little Ka! We are glad you chose us!!

XOXO

Mommy, Daddy and Will

Off to the conference

Special Fathers on Father's Day

2008-06-14T16:38:00.000-04:00

What would we do without our dad! This post is dedicated to all the wonderful dads out there, but especially Matt, my dad Bill and Matt's dad Russ. I know Matt would say some really wonderful things about his dad, but I'm going to have to do it so that I can write about Matt :)
Matt and I both have awesome families. They both live within 15 minutes of us and we know that they care very much about our family. They have done so much for us and we love them all so much. Matt's dad Russ was just out here today digging hole's in our backyard for the deck that he is helping us build. He is great with the kids and has always been there for us. Obviously Matt would have much more to say on a personal level seeing as though he was raised by him (and he has done a great job because I truly have yet to meet someone that's husband is as awesome as Matt)! So thanks Russ (and Liz of course) for raising a truly wonderful person. I know it wasn't always easy, but in the end, I can't imagine you could be any more proud of what he has become. Matt is truly one of the most generous, caring and loving people I've ever known. He has been this way since the day I met him and surprised me even more the day he became a father. Matt showed me that not only was he this way with me, but also with his children. I could tell the minute Will was born. I remember Matt by my side as they took Will over to be checked not moving to be by me but not taking his eyes off of his new son. I had to say, go see him before he moved. He has loved our children unconditionally from day one. He would do anything for them and has. We feel so lucky to have him and I feel so lucky to have someone who never puts his kids and wife second. He is wonderful with the kids. So good that it's really hard to put it into words! We love you daddy!
I also want to say Happy Father's day to my dad, Bill. Bill has been my dad since I was 10. I didn't realize how true this was until a few years later, when I figured out what a father really was, but I feel so thankful for having Bill. He married my mom, never having been married or having children, to get a family. I know when I was younger he heard the words 'you are not my real dad" many times, but there's really nothing further from the truth. I don't and haven't had a relationship with my biological father since I was much younger, and I feel so lucky that even through some hard times (for all of us) Bill has always been there for me. He never, for one day, played the roll of 'I'm not your real father.' He loved my sister and I from the very beginning and I know he loves us very much today. Although I never used the name dad when talking to him, there's no one that I would rather call my dad. He has been there for me, cared about me, and loved me for a long time and I feel very lucky to have such a special dad in my life. So special that I named my son William after him and middle name Russell after Matt's dad. It certainly wasn't because we had to, it was because we wanted to. I can only hope that Will grows up to be as good of a dad as my dad, Matt and Russ. Thanks Bill for not only being a great dad when you had no obligation to do so and for treating me like I was nothing less then your 'real' daughter but for loving Will and Kaela the way you do.
So thanks to the three of you for being who you are and loving us the way you do!
Matt and Kaela (Kaela's 1st day) Daddy and Kaela (end of May)

Matt and Will (about a week old) Will and Daddy at the end of May (his little clone)
Will with his Grandpa (Bill) -Cheers!

Will with his other Grandpa (Russ) being silly

A list of Will and Kaela's favorite things about daddy:

I love when you act like a dinosaur and chase me down the hall.
We love when you get us and tickle us.
We love that you are home with us during the day.
We love that you take us to play group every week.
We love that you let us run around in the same clothes we wore to bed all day when mommy is at work.
We love that you change our poopy diapers.
We love that you make us yummy lunches.
We love that you give us lots of hugs and kisses.
We love that you love us even when we scream and cry and throw things, usually for no reason at all.
We love that you teach us new things.
We love that you play outside with us.
We love that you set up our swing set.
I love that you put my train tracks together and play with my trains with me.
I love that you are silly.
I love that you know I am hording binki's in my room and you don't try to find them and take them away.
I love that sometimes I get Lucky Charms and you let me eat just the marshmallows
We love that you love everything about us no matter what anyone else thinks.
We love that you think we are perfect in every way (we know we are, but of course it's nice that you and mommy think so too).
I love that you care enough about me to put my brace on, even though I don't always like it.
We love that you cuddle us.
And most importantly we love that you are our daddy! We love you and hope you have a great Father's Day. XOXO
Love you,
Will and Kaela

A little girl and her brownie

2008-06-10T20:08:00.000-04:00

I just thought I'd post a few cute pictures of my baby girl and proof of her sweet tooth. I gave her a piece of a brownie yesterday, literally about the size of a quarter, and this is what she looked like after.

The most obvious sign is that chocolate face, but it was all over her hands, on her arms, and all over the front of her shirt, which I don't believe will ever look the same :) Our little boy was the complete opposite at this age. He could care less about sweets. He loved and still does love fruit, but cake or sweets he had no interest in. This has changed a bit, but is still nothing like my little clone. Will was such a bore at his first birthday party with the cake. He did one little touch of the finger to the frosting and was disgusted that there was something on his finger! He still doesn't like his hands to be dirty. I can not wait to post pictures of Kaela at her first b'day party because I know she is going to be a MESS!

Here are a couple pics of the kids together in the tub. Will heard Kaela having all kinds of fun splashing around and had to to join the party.

And a picture of my cute little man. Not sure if you can tell, but he has a messy face in this picture. I seem to have a hard time getting a picture of Will with clean face these days. :) They grow up way too fast!

Go Kaela!!!

2008-06-03T22:01:00.001-04:00

Update: better picture (I think) from Matt's phone. I just love those chubby short legs :)

I downloaded about 250 pictures today so that I could post some of them, and then Kaela goes and does something major! More blog worthy then anything I could have written an hour ago :) Kaela stood up on her own! Matt was giving Will a bath and of course Kaela has to be part of everything, so she went crawling back to the bathroom. My sister called me just then because I had just sent her about half of those pictures I downloaded, to tell me how cute they are when Matt yelled for me to come to the bathroom. At first I thought something was wrong, so I run to the bathroom to find Kaela pulling herself up to a standing position! We were sooo excited. Obviously being 11 months she is a little behind on this (who really cares!) which I think almost made it more exciting. I of course ran to get my camera to find that the batteries were dead! Go figure. So I ran to get my other camera and Matt took some with his phone. (we also did a little video until that died too). I wanted to get on and share Kaela's exciting news with all of you! I'll try and get better pics next time. Remeber, her legs are pretty bowed so although it may not appear that she's standing, she is...her feet can not go straight on the floor due to the curve in her legs, but she's doing it the way she knows how!! YEA! I hope you enjoy the pictures.

Not much news to share

2008-05-20T19:59:00.000-04:00

My sister emailed me today and reminded me that we have this blog and we needed to update it. Thanks Rachel. I really don't have a lot to say. Will is starting to talk a lot more and starting to make more sense to more people, so that's good. I can't believe how big he is! It seems like just the other day he was born, and now he's this tall, skinny, hilarious little man. Everyone seems to think he's 3 because he's so tall. Kids grow way too fast, don't they!? He's such a sweet little boy sometimes, and sometimes he's a crazy, wild animal that needs to be caged. :) Don't worry we don't actually cage him!

Kaela is growing too. Length wise, I think she's started to slow down a bit, but she's

really starting to look and act more like a little girl/toddler then a baby. She will sit up now on her own if I sit her up. She does fall over after a little while, which usually causes tears, but she loves to sit up on her own. She can't get to the sitting position from laying, but she's starting to turn herself when she gets up on her knees and then sits on her bottom. She looks so cute when she sits up. She plays peek a boo which is so cute, she loves to clap and say 'yea!,' wave bye bye or "HI" and loves to laugh at her silly brother. She's almost 1 and I can't believe it!! Her birthday is June 21st, which just happens to be the first day of he LPA conference in Detroit and the first day of summer. I found out today that Rachel, my sister, or Aunt Rachie is coming home to visit June 25-29 and we are so excited that she will be here for some of the conference and Kaela's bday party!!! We know it's close to the conference, but we would love to have our lp friends and families in the area join us for some food, cake and fun, if you are free the 28th of June.

As I said, not much going on right now, so I will leave you

with some cute pictures of the kids.

If it's not one thing it's another!

2008-05-05T08:45:00.000-04:00

I have always wanted to be a mom. As a young child I knew this, I carried my dolls with me everywhere, I went to the neighbors house to help hold the baby, and play with the kids. I babysat forever, I would let the neighbor kids come over to play just because I loved kids so much, I lived with a family for a few years taking care of the kids, and couldn't wait for the day that I had my own. I have always wanted to adopt children, I had dreams of going to Africa to help the children and take them toys, so yeah, I was obviously obsessed with caring for kids. My point here, although it may sound strange, I thought I had a purpose...which was to take care of the needy kids in the world. Then we find out we are having Will, which was scary and exciting all at the same time. We have this beautiful baby boy who is just perfect. We love him so much I convince Matt we should have another soon after :) It didn't take much! So then we find out we are having another baby and we are thrilled. We finally found out we were having a girl a couple months after our 4 month check up because they couldn't tell then and we where so excited that we would have one of each! Matt was very excited he was going to have a little girl too. Daddy's little girl, and that she is :) So of course we then find out later in the pregnancy that something is 'wrong' with Kaela to then find out she has a form of dwarfism...so from here, we know what happens...we have a beautiful little girl. Most of you know this was very hard for the month or two before she was born and the few months after, but has gotten much easier as we've watched her grow. So up to the point that I'm trying to make in this post....we are getting used to all the doc. apts for Kaela, and dealing with the fact that we are going to have to deal with a lot of things that we never imagined dealing with and then last week we find out Will has a peanut allergy. Oh the joys of parenthood, right? It's really not about us, it's something the kids are going to have to deal with FOREVER, so of course it's much worse for them then us, but for now Matt and I are the ones who have to 'handle' the situation. We now have to read labels of all foods, get rid of the peanut butter, nuts, etc. It's a pretty serious allergy. We have to have an EpiPen with him in case he has a bad reaction. There's a lot that goes into it. I have a good friend who's son is very allergic and I know what she's had to go through. It seems to be worse when they start school because it's not a controlled area anymore. The classroom has to be peanut free, but the school isn't, which means they have to eat at a special table with only people who have a hot lunch. So it's just another THING to deal with. He loves M&M's- but no more of those. Have you ever read labels? It's surprising the things that say, may contain peanuts, or processed in a facility with peanuts. Although plain M&M's do not have peanuts, they re-melt the chocolate they use from the peanut M&M's to use on the plain ones; therefore, the chocolate may have touched peanuts, meaning Will can not eat them. Just having peanut butter touch his skin makes him break out all over. Anyway- that's what we are currently dealing with. We still have to get his blood work to find out what his level of allergy is. We are of course hoping it is mild and stays that way. So my point in talking about how much I loved kids and wanted to help kids around the world, I think I have come to learn that I may have that purpose still, but it's with my own kids :) I say this with a smile on my face and can truly laugh about it..because I think this was the plan all along :) Instead of going around the world to do it, I'm supposed to sit in my living room and do it :) I wouldn't trade it for anything.

So that's the exciting news :) We had a fun filled weekend at Greenfield Village for Day Out With Thomas. They dress the train up to look like Thomas, and Will just LOVED it. He was so cute on the train saying 'Choo Choo.' Grandma and Grandpa Laurin came with us which was lots of fun. They had lots of fun Thomas events around the village too, so I think we will have to make this an annual thing until Will outgrows it and maybe Kaela too!

I cleaned out Kaela's closet and dresser this weekend which filled 2 bins! Talk about way too many clothes for a 10 month old! Will's closet is the same way. Apparently I love to shop...a little too much :) But I get great deals at the outlets and the after season sales for the next year at name brand stores...Her growth is starting to slow down I think, so I don't think this will happen as often, but we will see. I will leave you with some cute pics of Kaela happy as can be even after having to get shots that day! She's such a trooper. (Plus I was the bad mom that neglected to take any good pics of her at Thomas Day...sorry Ka!)

Best husband/dad and Kaela's new skill

2008-04-20T17:07:00.000-04:00

I have been really bad about posting lately. There have been several times I have wanted to write about something that's happened, but the days go by so fast I just don't get to it. So this post may have some random points, but I also want to highlight a few things.

I want to start by saying I have the BEST husband and my kids have the BEST dad. I know there are some great ones out there, but I have to give some love to Matt. I don't say how great he is as much as I should. He is home with the kids while I'm at work everyday, he takes them with him while he works, he cares for them, loves them, plays with them and is does everything in his power to be sure everyone is happy. He is so calm and has more patience then anyone I know (including myself). He is here for us everyday of every week and I want him to know how much I appreciate him and love him as do the kids.

A couple weeks ago Matt made a digger out of play dough, which won Will over in seconds. Will was so excited that he even wanted to sleep with the play dough digger. As you can imagine that doesn't work too well. Once the play dough drys it crumbles, which ends up in Will screaming that his digger broke. Ugh, how well can you really explain to your two year old that it's play dough and that's what happens. He doesn't really care, he wants it fixed. Well a friend of mine suggested getting some clay that you cook and it gets real hard, so off to the store I went for some clay. I don't know who was more excited ,Will or Matt. Matt spent some time putting a digger, bulldozer and crane together for Will. Matt is sooo artistic, I tried and well, it wasn't pretty. Here are some pictures of Matt's creations and Will's new found love :)

Pretty cool dad!

Now, as for Kaela, she is growing and getting into EVERYTHING. She is so cute and so busy. She can be found under the table, down the hall playing with the door stopper, all the way into Will's room, anywhere she can get. But as of the other day her newest thing is pulling herself up on things. Not onto her feet, but onto her knees. She started with the box of wipes. She was so excited to get herself up there and then over she goes. Once she found her way into her brothers room, she found a stool to get up on. I bought a stool at PB awhile ago for Will to get up into his big boy bed. I moved it into the living room for Kaela to play on and she is so happy. I think she just likes having a different view. I don't blame her. You will also notice that her hair is getting SOOO long. Don't you just love how it sticks straight up :)

I'm so happy we have some nice weather. We spent a lot of time outside and at parks this weekend! Will just loves being outdoors. I think he would sleep in in sandbox if we let him. Here are a couple pics from the parks and at home over the weekend.

I love taking pictures, can you tell? I think my little sis appreciates them all since she lives in Texas and doesn't get to see them very often. Love you Rachie.

One last thing. I haven't posted much about Kaela's brace (I was reminded of this over the weekend :0) ) since she got it awhile ago. We did go in for xrays a few weeks ago to see how she looked with the brace on and the brace off having worn it for a few weeks. We came out of that appointment with some good news. Dr. Hensinger said that her back actually looks better since it has been on. There wasn't a huge change in the degree of the curve, but it actually looked a little better and hasn't gotten worse. This is of course great news. I imagine Kaela's spine will continue to curve, but the longer we can prolong surgery or the more we can stop the curve the better! What I mean by that is obviously we will never know how much her spine would have curved had we not used the brace, but hopefully the brace in the end, even if Kaela has bad curvature, it will be a little milder then it would have been. We can only hope. So good news thus far, even though she would prefer not to wear it. We go back in July for more xrays and I imagine we will go back soon to check the sizing for the brace :) From now on, I think I will try and post more regularly so that I don't write these monster blog post :)

Making new friends

2008-04-13T17:22:00.000-04:00

Yesterday was a big day for us. We took a short road trip to Monroe to meet some very special people. Tonya, Knoahs mom, had a bunch of us lp parents over with our little ones. We finally got to meet the famous Knoah. He is such a ham! Tonya, as we all know, is wonderful. She has such a beautiful family. Thanks Tonya for a fun afternoon! We also met Catie and her very cute little girl, Hannah. Hannah showed us some of her new dance steps she's learning in dance class. She was VERY good and fun to watch. And I must add, very flexible! She came running into the room and landed her self right into the splits! Way to go Hannah!Catie and her husband also have a very cute and sweet little boy named Alex. It was so great to meet them. Catie was kind enough to bring us all some awesome strawberry pie! YUMM!
Then we met Sue and her family. Her and her husband have three boys. Her older two were off playing most of the time with Tonya's older son, so we didn't see much of them, but we did get to see Aidan, who I have to say is absolutely adorable! He has beautiful eyes and hair!

Sue doesn't have a blog, so I guess we get the joy of showing him off for her :)

Cat, Jennifer and Owen were also there. We met them in February, but it was very exiting to see them again. Owen is such a cutie and got to show off his new moves...he's starting to walk. He was lots of fun to watch. It's so nice seeing Jennifer there too- you are such a good grandma! Your love for Owen really shows! He's so lucky to have such a hands on grandma.

It's great knowing we have such a great group of families around. I know that one day it will mean a lot to our little ones knowing they have friends not too far away that will understand each other more then the average person. It's also really great having the moms and dads for support. I'll try and get a few more pics of the group of kids together and moms with our kids. I hope we can all meet up again sometime in the near future.

I like this pic of everyone although no one is really looking... Alex wanted to steal the show, which was just fine. You can tell everyone thought he was pretty cute :)

How cute is this!? Hannah giving Owen a big hug!

Knoah going in for a kiss! Knoah and Kaela wanted to share in the joy of NO brace !:)

Kaela and Owen to the right.

Tonya and Knoah. Knoah is enjoying some apple pie!

Jennifer with her grandson Owen and Kaela.

Okay, I'll stop, now that I've added 100 pictures :)

The brighter side of life

2008-04-02T19:49:00.000-04:00

I've been doing some thinking the last couple of days about how much attention some of the negative websites, videos, etc. have received recently. It has made me think a lot about how we as the parents of little people have so much to think about, and so many choices to make. I know being the mother of Kaela I started worrying about if she would ever go to the prom, if she would be made fun of, if she would ever find true love, before she was even born. I think this is a natural reaction when we hear that there is going to be something different about our child whether it be dwarfism or something else. We worry about how our children will be accepted when they have an obvious difference. It's our job as parents to protect our children and worry about them, but I feel like there is too much attention to the negative parts of life. The fact is we all are going to have moments in life that cause us to feel different or times when someone makes fun of us. Of course some people, maybe including our children, will have more moments then others, but I worry about all the attention this negative publicity gets. I feel like these ignorant people are getting exactly what they want: attention. We go look at their websites or react to their comments and they win. What are we getting out of it other then getting angry and defensive? It's a natural reaction of course, but it makes me wonder if it's really what is best for us as parents and for our children. I know I'm writing something that not everyone is going to agree with, and I'm okay with that. I think we all have the right to do what we want in our lives and I am completely open to that. We are a very accepting family and don't really judge peoples opinions or decisions. I am simply putting my thoughts and feelings down here (with the help of Matt, because I believe we agree a lot on this issue). I think that it's more important to focus on the positive things and what our children can and will do. To look at all these wonderful options they have in this big scary world and how with parents like all of us they will get exactly what they want. I want Kaela to always focus on the positive things. I want her to know that yeah, there are some ignorant people out there who write stupid things or say stupid things, but there are also some wonderful people out there that she will meet in her life who will love her and admire her. Again, it's natural to worry about our children who are 'different' from our other children, but the truth is, our 'average' children may have an even harder time in life. We just don't know when it comes to our kids. I have some friends and acquaintances who have children with autism, down syndrome, and other disabilities that affect their child's cognitive skills and I am so thankful every day that Kaela's just going to be little. Sure she will go through some surgeries, sure she will feel some pain and discomfort, but all in all, I think she will be okay. She will be able to go out in the world on her own one day, she will (of course following the path of mommy and daddy) go to college, get a job doing something she loves, and choose a life for herself. There are limitations for her in terms of what she can reach or sports she can play but it's okay if she needs to use a step stool to wash her hands. I guess what it comes down to in my thought process is that I wish there was more focus on the positive things and less on the negative. I think our children (all of our children) are just beautiful little beings. They learn from us and will grow learning things from us. We have made a choice as a family to teach Kaela and Will that regardless of any obstacles in their way, they can obtain any goal they set. We don't choose to just tell them this, we believe this. We look at them as equals because they are. They are both people first and for most. They deserve to be treated like they are people and will hopefully grow to love others and most importantly be happy. I know that the more negative things I read about dwarfism or Metatropic Dysplasia more specifically the more depressed I would become. Of course I still have to read things in order to learn and be a better parent and advocate for Kaela, but I take everything I read with a grain of salt. I know that she is a beautiful little girl inside and out. I know that Will is a handsome little man inside and out. I know Will at the age of 2 has a great sense of humor and that he is truly one of the most compassionate people I have ever known. I know that Kaela is already a sassy little girl who will handle herself just fine whether she is 3 feet tall or 5 feet tall. I know that both Kaela and Will can give you a smile that will melt your heart..and probably get them that toy or candy they are begging for :) My hope by writing this is to encourage all of you to either write a post or leave a comment with some positive things about your child just the way he or she is. Even the little things matter. I can say that these short chubby little legs Kaela has are the cutest darn legs I've ever seen. Sure they are short, but they sure are cute :) Some of us have surgeries coming up, doctors appointments, illnesses, etc., and it makes things much easier to think of how much it stinks that our children have to go through this....but I really feel like Kaela is so lucky at the same time. Sure she will have her ups and downs and sure, so will we, but hopefully by avoiding negative people (as much as possible) we can minimize the hurt. These ignorant people out there want attention, and I don't want to give it to them. We are so lucky to have the children we have and I am so thankful for both of my children. They have taught me so much and I know having Kaela in our lives, we as a family, will be able to teach so many others. To think that she could change one persons view of little people or anyone with any kind of difference is really the greatest gift and more then anything I could have ever done had I never had her. I think that's a pretty big positive :)
I'm writing this a day later because I felt like I needed to add something. I, in no way, am impling that we should not educate people or stand up for our children or friends when something is said. I hope that this was understood :) I just think it's also important to not give attention where it is not needed..again, just my opinions here.

I wanted to share the pictures of Kaela and Will with the gifts grandma brought back from Texas while visiting Aunt Rachie. Will's cute vest from The Alamo and Kaela's little dress :) How cute!

A quick post

2008-03-24T21:43:00.000-04:00

I've been meaning to write, but life has been a little busy. I wanted to post some pics of the kids from the weekend. We had a busy weekend. We went to see the Easter Bunny, Matt took me out Saturday for my bday ( I turn 28 tomorrow/25th-ugh) the kids have been sick then we had Easter yesterday. Easter was a busy day and poor little Ka wasn't feeling well but was quite the trooper. We colored eggs on Saturday which was fun. Will had so much fun. It was great. I didn't think he would care for it, but he kept asking for more and more eggs. I should have bought the cheap eggs because most of them where cracked all over by the time he was done, but he had fun and that's what mattered. Kaela had fun watching and enjoyed playing with one of the eggs until it fell on the floor. There were some baby goats, bunny's and a lamb at the mall where the Easter bunny was and both the kids LOVED that! Easter morning was fun. Kaela saw her basket and toy and crawled over to it so fast! It was so cute! Will was very exited to see the Easter bunny brought him a toy train! He had a movie, coloring book, train book, markers, ball and chocolates too- but as soon as he saw that train nothing else mattered :)

Kaela has a week full of apts. this week. We took her in today to be sure she was getting enough oxygen and make sure her chest sounded okay. Everything sounded good and oxygen was good. She has some fluid in one of her ears, but it isn't infected. We just have to watch her to be sure she doesn't get a fever or start getting worse. Tomorrow she gets fitted for new ankle splints and Wednesday she gets more xrays with her brace on.

I wish I could have been a little more interesting, but I didn't think I would write if I didn't do it now in the short time that I had. I will post some pics too :) For those of you living in sun and warmth, send a little this way!! We are so anxious for spring! 7-9 inches of snow Friday was not very exciting..and more to come tonight. Enjoy and I hope everyone had a great holiday weekend!

Why I love being a mommy

2008-03-12T19:57:00.001-04:00

I truly had this idea about a week ago that I should write about being a mom. Today I get online, look at every ones blogs and realize so many of you have beat me to it! I feel like I'm 'stealing' the idea now, but I can't help but to write a little something. I thought of this because I was looking at my kids and thinking to myself, "I am so lucky to have these two beautiful children in my life." I have wanted children since I was a child. I was that kid that always played with baby dolls. I literally think I liked dolls until I was old enough to babysit! I knew since I was a kid that I wanted a big family, I wanted to have kids and wanted to adopt kids. I love animals too...Matt always makes fun of me and says if I weren't married to him I'd be a cat lady. The sad thing is, he may be right :) I just can't say no! If someone offered me their kid I'd say YES! Of course! So much easier then going through those 9 months and then praying you don't have another hour long labor and pop one out at home. Although I'd do again in a heartbeat for another sweet baby...but we'll give it a couple years (don't worry, we WILL wait a little longer this time). So back to my children. Why I love being a mom? Really, I don't think I could possibly think of a reason I don't love being a mom. I honestly believe this is the best job I could have been given. I think about all the heart ache that comes with being a mom and I would take it all 100 times over to feel the extreme amount of love I have for these two beautiful people. I love the fact that I can be standing in the kitchen watching William literally shove turkey into his mouth with both hands and get teary eyed. Maybe part of that is because I'm freaking out he's going to choke on his turkey, but mostly because of this adorable little man in front of me that WE created! WOW! And I look at Kaela and think of how truly unique and special she really is and how lucky Matt and I are that we got her! 84 known people in the WORLD who are known to have the same thing as Kaela and we got her! I think I understand in some ways why we have her...I think we have become different people in some ways (for the better) and have learned so much, but I think she's going to teach us so much more and for that I really am so thankful. I love the way they smile at you, sometimes for no reason. I love how I can come home from a day full of work, walk through the door to see Kaela kicking her little legs and smiling as she sees me. To see Will jump up and down saying hi mama. I love how they teach me patience. I love how they can drive me crazy and two seconds later look at me with a smile that melts your heart! I love how Matt literally just put Will into a time out and he's calling for me :) he he. I love how I can tell Will that he can not pick on the dog and his little voice says "silly boy, funny," and I have to turn away to laugh because his scrunched up little nose and face is too cute when he does that!
I love the belly laughs that come out of them that make you smile so hard your cheeks hurt and laugh so hard you cry. I love the fact that I was chosen to be a mom to these two beautiful children. I love how I can pick Kaela up and she gets so excited her little legs are running to me in the air as I lift her. I think I could write for hours about how much I love being a mom, but I will end with my new favorite part of being a mom...I love that my children love each other. That Will can get down on the floor with Kaela and the two of them can crack each other up by just making sounds :) ohhh how great it is being a mom!

Straighten up!

2008-03-07T16:33:00.000-05:00

Yesterday was Kaela's big day. We took her to pick up her new/first back brace. I wish I could write and say all these great things, but really I just want to say it sucks! Don't get me wrong, I am all for helping her and trying what we can to straighten her spine without surgery, it just basically sucks we have to even worry about it! Now that that's been said...I will obviously post pictures of her in it so you can see what it looks like but what it is doing is pushing against her chest to push her back 'in' to help with the kyphosis and then there are straps in the back that pulls her spine back towards the middle and straightens her up! FUN huh? Poor little girl does not like it (who would really?) and she hardly moves in it. She can roll, but doesn't do much of it when it's on. She can't get her feet up to her mouth with it on which she really enjoys doing :) She has to wear it 23 hours a day! But the first week the doc said to do shorter days to get her used to it. I'm sure she will get used to it as she wears it more, but it just seems so tight and like it restricts her breathing even more (she has that super narrow chest)...I worry too much. Just hope and pray that it works for her! Most research shows that bracing does not help...but we will see.
Now to the exciting news...yesterday I put a bowl and spoon on the floor (Kaela likes to play with them) and as soon as she saw it she dragged/army crawled over to it! I've never seen her move so fast....it was sooo cute! She probably thought there was food in it, this girl loves food! I'm sure she was envisioning ice cream or something in the bowl the way she moved but she did it! GO KAELA! I'm sure it will be much harder with the brace on, but hopefully she will figure out how to move in it. She looks taller now that she's not all crooked. We are off to get a new car seat for her tonight. We are going to get another Britax for Matt's car, but want to fit her in some to see how she fits with her brace. Talk about a fun filled Friday night huh?
Now, a little cute story about my oh so cute William. Today I was changing Kaela and feeding her after her bath and I knew Will was in his room, but thought I should go lay him down for his nap. Well, I go into his room and say, "hey buddy do you want to lay.....oh my gosh!" The little guy had gone into the refrigerator ( I knew he was in there because the door was left wide open, but hadn't realized he had left with something...good watching my kids right?) and taken the baking soda that was in there out! Guess where it ended up?? Yes, all over his bed. He wasn't interested in making a mess, he knew exactly what he was doing...he was going to dig in the fun sand 'stuff' with his diggers. He has his huge yellow digger up on his bed digging in the baking soda. There was even a big clump of it that he was so excited to show me. He says, "rock." So he had baking soda and rocks to dig in! How fun! It was pretty cute...and of course I took pictures before cleaning up the mess:)
I'm also going to post a couple pics of Will in his new Thomas the train hat! He looks SOO cute in it. He got this in the mail the other day from a very special friend along with a Thomas cup, plate, and bowl. He is going to fit right in this spring when we go to Thomas Day at Green Field Village!
One last thing...for those of you who don't already know, one of Kaela's friends, Owen, is about to become famous. Owen and his parents are going to be featured in the paper and their will also be a video. Check out their blog "How life is measured" to find out more about Owen (super cute little guy) and his new found fame :)

William's Big day..and little Ka had fun watching

2008-02-24T19:55:00.000-05:00

Today was a big day for big brother Will. He went skiing for the first time! Downhill skiing! We were at the mall playing this morning when Grandpa Bill called and asked if we wanted to take Will. My mom and dad have been looking forward to taking him skiing. So we went out to Brighton and Will had a blast! I thought he was going to freak out and start yelling no (it would not have been a surprise if he had), but he was totally excited to go. We told him the whole time on our way to my parents and the way to Brighton he was going to go ski with Grandpa and he kept saying 'grandpa, ski' even though he had no clue what skiing was. But once we got there we went to get his boots and skis and he was sooo good. I took him outside while my parents were getting their stuff and he was thrilled to put his skis on! Matt and I took turns holding Kaela and helping Grandpa get will around. We started by just walking/pushing William up the hill a little ways so Grandpa Bill could get used to skiing with him in between his legs...then off to the rope pull it was. Will LOVED it! He had so much fun. Every time they got to the bottom of the hill William was already saying, ready again again. He LOVES his Grandpa and was sooo happy to be out playing with him. If I even tried to help sometimes he wanted me out of the way and wanted Grandpa! So it was a total success! He did really well too. He got the hang of walking on his own in the skis and getting over to Grandpa on his own. I think by the end of the day Will was supporting himself more going down the hills too. Grandpa said he was getting 'free' rides and turned to putty for awhile :) He enjoyed the ride while Grandpa did all the work! I think Grandpa Bill is going to be sore tomorrow! So we had lots of fun and can't wait to go again. Next time I think Matt and I are going to put on some skis too. Matt has never been, so that will be fun to watch :) For me at least!

Kaela had fun watching her brother and being outdoors. It was such a great day for it! Kaela was great of course. The only thing she had a problem with is she wanted to get down! She is sooo squirmy these days! She wants to move so badly...she rolls like a pro and is starting to get her knees under her, but not sitting or anything yet so it makes it a little harder. Harder on us and her really. Matt took her to the doctor the other day because she has not been feeling well to be sure she sounded okay (breathing) and she weighed 18lbs 8oz! Holy cow! She's so big! I think Will only weighs like 27 lbs! And he is 2 years old! Big girl :) She's sooo cute though. They are total opposites, it's pretty funny to see them laying together with no pants on and see how different they are. I love those little chunky legs Kaela has! And by the way- her lungs sound good. Poor little girl doesn't feel very well though, although you would never know it. She's always so happy and always has a smile on her face!

Well, I just wanted to add an update and write about Will's big day!

I want to throw a HUGE thank you out there to a wonderful friend of mine that I spent some time with this weekend..you know who you are! You are too good to us and we love you! We are so thankful to have you in our lives.

How smart and cute are my kids?

2008-02-16T15:40:00.000-05:00

SO- May I start with bragging? Of course I can, it is my blog :) Well, although we all think (well know it some cases) that our kids are the cutest and smartest, I must say my kids are at the top of that chart! Who cares about how tall you are or how short you are- if you can give a look like Kaela and Will, then you are set for life :) I will start with my loving little boy! I know we started this blog with Kaela in mind, but I do not want Will to ever feel left out because the love and admiration we have for this little man is indescribable! We went to twelve oaks today, I guess for something to do, and realized how much better he is getting in terms of listening. He turned 2 in December, so he's still young, and enjoys doing things on his terms, BUT he's getting so much better. Those crazy fits are more and more rare (thank you GOD!) and he's listening! Now, I have always thought William was a terrific child, he was a calm sweet baby, and he is a sweet toddler...calm, not so much anymore :) The point is, we were at the mall and of course he prefers to walk then be pushed around. HELLO, he is a BIG boy mom! He tells me he wants to walk, so that's fine, I tell him he can walk but he needs to stay close. He starts walking and we are trying to get Kaela adjusted in her seat and he STOPPED...I'm making a big deal of my son stopping when I tell him to right? But he's 2! Those of you who have kids this age or have had kids this age probably understand. He was just really being great. I'm so impressed. He totally gets it from me ;0) wink wink (If you know me, you know I don't like being told what to do, so it really must come from Matt ha ha). So besides being SUPER cute, and hilarious (seriously, this boy can crack you up!) ...and a good listener he is also super sweet and cuddley. I hope all of you who have baby boys have them grow as sweet as Will. Every night he will lay with me when he's tired and rub my arm and give me hugs and kisses...Oh how sweet! I just love this little boy!
Now onto my super cute and bright little girl! Valentines day she decided to come out with da da. My mom was here to witness it! She's very much into mocking and I have been trying so hard to get her to say ma ma...then out comes da da. That's alright, Will gave me mama first. Now, I know I know, she doesn't really KNOW what da da is yet, but she still said it! That counts! And if you ask Matt it counts for more then just making the noise :) THEN she showed us her true brilliance today when we were at the mall. Matt was drinking a smoothie and I told him to give her a little taste. (I think I mentioned she likes sweet things before?) WELL, she goes on to SUCK out of the straw! He was giving it to her with just the straw (like outside of the cup, hope that makes sense)...but she sucked! So I was shocked, so I said put it in the cup and see if she sucks out of the straw and she did it! It was soooo cute! Matt and I were both so excited! Matt gets his IPhone out and takes a picture for proof of course! We were sitting down in the food court laughing and jumping around taking pics :) Dorks I know! But hey, Will was over a year before he started sucking out of a straw! It's so cute to watch her suck out of it! She's so smart:)
Well, I just wanted to update quickly before I forgot on how cute and smart my kids are!

Moment of Impact

2008-02-13T20:50:00.000-05:00

This is my second post to Kaela's blog and I feel a bit embarrassed that I have not added more. There are a few reasons as to why I have not been able to express myself that have to do with, I now realize, just how much I didn't want to believe anything was really different about Kaela. I have also had a bit of bloggers' block. Ever since Kaela's diagnosis I have accepted fully that my daughter would be different than the typical child and I can say that I do not care. Kaela has grown to be my shinning little pumpkin, so sweet and inocent and she melts my heart with her little smiles and amazes me by saying nothing more than "ba, ba, ba". It wasn't until recently that the gravity of her situation hit me in a very negative way and also a very positive one. Most people want the bad news first but since I can't call the shots with the outcomes of kaela's development I will call the shots here. I'm going to tell you the positive impact first. Recently my family and I attended our first LPA event in Troy Michigan at the home of Stacy, an LPA member and a little person herself. Sarah and I were both nervous because it was an environment that we had never experienced before coupled with meeting new people. The event went better than I could ever have expected. Everyone was welcoming and easy to talk to. The people we met were all amazing and offered insights that we couldn't have found at any doctors office or genetic counceling session. We were also able to meet other parents who shared our circumstances and shared stories with them as well. There was one moment however that I will never forget about that meeting for the rest of my life. Itwas really a small thing now that I think about it but the way it made me feel was what made me remember it long after we got home. We had arrived at Stacy's house in Troy and my wife suggested she take the kids into the house while I parked the car down the street. After parking I walked to the house more nervous now because I would be walking in alone and without my family. When I came in the house I was greeted by another LPA member and she walked me into the living room of the house where I saw the image that impacted me so much. There in the center of the living room was my daughter, smiling and happy as could be, sitting on the living room floor surrounded by little people just like her. That image froze in my mind. It was the most beautiful thing I had ever seen. To see my little pumpkin, welcomed, almost as if she had been saved. Those surrounding her seemed to speak to me with their eyes saying, "its ok matt, we are here now and theres nothing to worry about." I felt an extreme feeling of relief and comfort. I knew at that moment that no matter what happens in Kaela's life she will always have people that she can relate with, share stories with, share pain with. She will have these people and others that will be able to empathize with her like no one else can including myself and Sarah. Kaela will be able to develop relationships with these people, relationships that will be more beneficial than any reassuring words from her parents, any doctors advice, any surgery or physical therapy. To have people to be with that are a lot like you physically when no one else is like you can feel like salvation. I'm glad and we are blessed that we live in a time where organizations like the LPA and the people that make them great are alive and thriving.
Now for the negative impact I have recently experienced. My wife spoke in her latest post about our trip to the hospitalfor Kaelas x-rays. When we recieved the x-ray results it was another moment that I will always remember. I had taken my son William to get a bagel and then I made my way to pediatric x-ray. When I got to the waiting room I sat down to finish my breakfast while William played in the lobby with the hospital toys. Sarah came out shortly after with Kaela. For some reason I felt like I did at every other doctor appointment meaning I didn't expect to hear anything new about Kaelas condition. So I just sat there staring off until Sarah murmmured, "her spine looks REALLY bad." My heart sank. I had been told by doctors from the beginning that her spine would eventually start to curve and that it mayeven be very bad. I had also always been told at those times that her spine looked fine and was not curving. I guess I just expected to hear that again. This time was different. As Sarah's post said before, Kaela's spine is curving and it is curving a lot. It has her doctor concerned and now thoughts of surgery cannot be erased from my mind along with theother health problems that stem from Kaela's kyphoscoleosis. I just didn't expect this to happen so soon and so agressivly. I thought we would have at least a couple years before we had to consider weather we wanted growing rods or regular ones or if we would be worrying because our daughter was having a hard time coming out of anesthesia. I just thought there would be more time. Never-the-less that time is here and we have armed ourselves to the teeth with knowledge and support structures that will hopefully allow Kaela to have a fighting chance. I know she will be ok or at least I like to tell myself that and for now I have begun taking things a doctor appointment at a time. We have our goals and assignments until next time and we will do everything in our power to make sure we stay on track. Well thats all the gushing I can muster for now. Not bad for a second post if you ask me. I want to wish all those other families out there who share our circumstances the best of luck and may god be with you as he has been with us.

Changing form

2008-02-13T19:06:00.000-05:00

I'm giving this post the name 'changing form' because the word Metatropic comes from the greek word, “Metatropos," which means changing form. Today was Kaela's appointment with the Orthopedic surgeon. She also had cervical and spine xrays. We all went up to the hosptial this morning, so it was a busy morning. I took Kaela up for her xrays after checking in downstairs in Ortho and Matt took Will to get a bagel. The xrays were actually a little more traumatizing then I had imagined them to be. I walk into the big room with those big xray machines that hang from the ceiling and a big bed. I figure that's where she's going, but then the lady says, "we need to set her up here." It looks like a little torture chamber. There's this little 'seat' that sticks out (kind of like a bike seat, but much smaller) where her legs hang over the sides and then they put velcro straps all around her body, check, holding her little arms down and then this plasictic 'thingy' that goes from above the side of her head over her face, under her chin and back up. The poor little girl is sitting there looking like some crazy person having to be strapped down (only sitting up). She was still smiling though...until I had to leave her sight, then her little head turned as much as she could get it to turn being strapped down and couldn't see mama anymore! My eyes filled with tears and I wanted to run out there and hold her! After the first picture they let me put a vest on and go stand with her, which made her happy. She did her little 'ba ba's' after that :) Anyway- I'm dragging this out much more then it needs to be. We then go back downstairs to see the doctor, who I really like! It's just too bad he won't be around much longer, but at least he has the chance to train a group of people and educate them! SO, he brings in the xray pics and shows us the curve. We knew before going that her back was starting to curve because you can see it and feel it, but you don't really realize how much until you see the xrays. I just loaded a picture of her xrays so you can get an idea of what her spine looks like.

In 6 months she went from nothing to a 37 degree curve :( Now, we knew this from the beginning, but knowing this doesn't really make it any easier to 'deal' with. She is our baby and while you know it's going to happen and you know it's happening, you hope it won't. Sounds silly, right? But I can hope....I will continue to 'hope' and pray that it doesn't curve 'too' much. Well he seemed to be a bit worried about it, so he said he thinks we should start bracing her now. Again, I knew this was coming, and I actually even said before going that I had hoped he would brace her since I knew it was starting to curve and I want to do whatever we can to help minimize the curve. We went straight to orthodics to have her fitted for the brace. She will have to wear this at ALL times. Poor girl. It will help both the kyphosis and the scoliosis. You can see the kyphosis in the last picture. It's not too bad, but again, is supposed to get worse over time, so we are bracing for all purposes. She was a little angel getting fitted for the brace (of course). We go back in 3 weeks to get the actual brace, then back to orthopedics 3 weeks from that or 6 weeks from today to have xrays done with Kaela in the brace and out of the brace to see how it fits while it's on and to see if it's helped since wearing it.

As for the other parts- her legs are very bowed, which he said look as though they may have gotten worse. One of the bones can grow faster then the other, causing the bowing to worsen and cause the foot to turn inwards. This is happening. He said they try to let it correct itself usually until 12-18 months, then try bracing, and then do surgery. It is thought she will need surgery, but again, we hope that will not be the case! It may be something we look at sooner then 12-18 months if those bones grow faster and cause more curving.

The GOOD news...well, her neck is still stable. Something he wants to continue to watch every 6 months for now, and then possibly change to once a year, but knowing that is stable right now is huge! As those of us with dwarf children know. Also- one other thing he confirmed, which I knew, and have stressed to the PT, is that she should NOT be putting pressure on her feet, knees and NO trying to get her to sit. The PT's have been GREAT in helping her flexability and range of motion, rolling, etc...but sometimes it's hard to convince them I am correct about the sitting, knees and weight on the feet...so I'm glad to get it first hand from him. Kaela's trunk is really long, so he said that can cause even more problems then maybe Achon babies who have a shorter trunk, because she has more weight on top that she has to learn to control (although that is true for dwarf babies in general with head and trunk) but her trunk is extra long...even longer then the average kid! So falling forward can mess with her spine even more...something we don't need. It does enough of that on it's own!

There's an update on our appointment today. We pretty much left with that sad feeling of thinking, "poor Kaela," but also knowing we are doing everything we can for her and will continue to. Kaela has so many people that love and adore her! She has GREAT grandparents, aunts, uncles, cousins, friends, and family! So while I'm on that topic, I want to say a BIG thank you mostly to grandma and grandpa on both sides! You have been extremley supportive, loving, caring from the day we had that ultra sound that told us there may be something wrong. You all have been so great to us, being sure we are okay, and the kids are okay and just supporting our decisions and supporting and loving Kaela and William. So we love you guys and are so lucky we have you, and the kids are even luckier! I know that both William and Kaela will grow up feeling loved and cared for by all of us (friends and family included).

I also have some GREAT friends that I work with that have all been extremly supportive on a work level (time off for all these crazy appointments) and on a friend level (asking questions, making us meals, getting us groceries, even if it was awhile ago, it has not been forgotten)...so we love you guys and are so thankful!

Rachel-We love you and miss you! We know you are far away, but know how much you love all of us and worry! And don't worry, Kaela knows YOU are her aunt :) Will too! They love you and miss you tons! Come home soon.

All of you- we are lucky to have you and appreciate you all!

Making new friends

2008-02-11T21:57:00.001-05:00

So we had our first LP event this weekend and it went great! We met so many great people. I was a little nervous about going, didn't know what to expect or who would be there, but it went really well. I believe the majority of people there were little people, most of them adults. There were some college aged lp young adults and a few younger ones, and then there was Owen and his mom and grandma. What nice people! Owen is absolutley adorable! His pictures are so cute, but no comparison when you can see him in person. Such a cutie! His mom Cat and grandma Jennifer are such nice people too! I'm so glad we met. It will be fun to watch Owen grow and hopefully get to know their family better as time grows and the kids grow up. Cat- you called dibs on Kaela- I call dibs on Owen. Ha ha.
Will had fun too. He made friends quick with some of the girls. They were great with him and so patient taking him up and down the stairs. Everyone was so welcoming and friendly. I wish I would have moved around more to talk to more people. Matt talked to a few people that I didn't talk to, as did I, so overall it went really great. I think it will be great to be involved for Kaela and us. I think it will be great for Will too!

So that was great and I am looking forward to the next event.

On another note, Kaela has her Ortho apt on Thursday. She gets xrays then too. I'm a little nervous because I know (since we can see it) that her back is starting to curve. I know that it's too be expected, I just worry because she's so young and I want to be sure they do things 'right.' It's hard being so far away from the real proffesionals in Metatropic (such as Dr. Boeber and Dr. McKenzie in Delware). But we go there in April, so at least it's not too far off. Anyway-Hopefully we will find out if we need to do bracing now or what. We have been so focused on her back I have forgot to ask about her legs. They are very bowed and I don't think they will get much straighter without surgery. Surgery is a scary thought right now...I know it's a reality for her, but no one wants their baby (baby meaning your child of any age ;) ) to have to go through any sort of surgery!

I'm so glad we have started this blog. We have already met some great people just writing here. For anyone that is new to our blog, check out Kaela's friends. There are some CUTE kids!! Check out little Cole too- he is so cute! I love his smile! He just glows in those pictures. We sure are lucky parents having these amazing little babies! Not only are they super cute ;), but I know from having Kaela in our lives that she has taught us so much! I look forward to sharing our stories about Kaela and William...and hearing all of yours!

Some good ones and some bad ones

2008-02-06T14:49:00.000-05:00

I'm beginning to feel overwhelmed, like I can't handle this job I've been given...the job of parenting a child who has so many more needs. I know this doesn't come out right, because I love and adore my little girl (and my son) more then anything on this earth, but it just feels like too much. I still can't really understand why us sometimes. Why not us is really the more fair and real question...I mean really, why not us? We are good caring people who can love this child like no other, but why Kaela...This poor little girl is so sweet and innocent, why do this to her? I know and understand that things could be worse. I really do, on a personal level, I understand that...I've met those that have it worse and would probably take my problems over their problems any day...but at this moment in time that does not make it any easier. I feel like I'm about to break...but it's weird because I don't feel like it's been leading up to this. I mean I know I have some days where I'm more sad then others, but I don't feel like I've been in this downward spiral. Maybe because I don't have the time to think about it. I just start each day the same and do what I have to do to help provide for my beautiful family. I always will of course, I just feel like I need a moment for myself. To breath and RELAX. I worry so much that it becomes hard to sleep and then I have to come to work and then go home and care for my family...and those lovely doctor's apts. inbetween. I always wanted to be a mother, and love the job more then anything. It's by far my greatest acheivement and by far the most difficult job I have ever had. Then you throw all the things Kaela goes through and has to go through and it at times seems impossible to do. It's so hard to look at her and know all the horrible things she will have to go through and there's nothing I can do to prevent it. The spine surgeries, the PT on her poor tight joints, the people who point with their fingers or their stares, and make those obnoxious comments, and any pain she will go through both emotionally and physically. I know she will grow up with so much love. She will know what it feels like to be loved and know how it feels to love...but that alone doesn't take away all the worries. I come home and see this little girl who is so happy and sweet and just feel so guilty sometimes. I want her to have it easy, or as easy as it can possibly be for someone in this world. I'm so thankful for our son. Not because he's the 'average child' but because Kaela has him and us. I know what a loving sweet child he is and know he will look out for her. I suppose I don't know anything about the future for sure, but I belive it. I know the way they look at each other now and know that behind those eyes within that complex little body of theirs there is so much love to be shared. The way they laugh with each other and at each other tells it all. So I am grateful for having Will their too. (for Kaela and for so many other reasons too of course). I know we all have our moments or days..(or weeks..months). however long it takes, and maybe today is just mine. I know I will forever worry about both of my children. Isn't it somewhere in the unwritten handbook of parenthood- you worry worry worry. And usually for nothing, right? I can only hope that one day Kaela will look at me and say how happy she is and I will look back and say- all that worrying for what? I am not a negative person, I do believe my children will be happy because we will raise them to be proud of who they are and accept ourselves and others for the good and the bad. We all have our own issues...I love my little bean so much and wouldn't trade her or the things she comes with for anything...Those of you who know Kaela know this :) She's a doll. And those of you who are going through the same things...I'm sure can understand some of this more then others...the ups and downs...I know we will get through this. I know I will get through this and I KNOW Kaela will...that's what matters I suppose. Both of my children bring a whole new level of love to my life every single day. You wonder how could it get better...and then all of a sudden they do something as little as look at you with a half smile on their face and you realize...it only gets better. Each and every day it gets better. Watching your child grow (as fast or slow as it may be) is the most amazing adventure in life. So on that note...As hard as one day or one week may be....I know I have to be one of the luckiest people in this crazy world!

Blogging

2008-02-02T19:29:00.001-05:00

So I would like to think that I'm good at this blogging thing (although I've never done it before) but as I look at other people's blogs I think I may be clueless. I love the blogs I've read through meeting people on line. People are so good at sharing their stories, which I know are not always easy. Sometimes it's strange to think you share such personal feelings and issues with people you have never even met before, but I guess it's important to help others and learn from others...and really for me in a lot of ways it's to hopefully help teach others to be more accepting and understand that altough some of us have many differences, we are really all the same.

We have our first LPA event on the 9th of February which I am super excited about. I think it's going to be fun and maybe even a little emotional too. I say emotional because for some reason I feel like when we are in a room with other children and or adults that are little it will make this whole experience more real for us. Maybe not, but sometimes I forget Kaela is going to forever be a little person. I truly have no problem with the fact that she will be little (I wish I could say that about all aspects of it, but when it comes to the health concerns there's no being okay with not okay things)....it's just that I have never known anyone who is a LP. I know Kaela will grow up to be the average kid though...the only thing that will not be avearge is her size....and maybe her heart...I have a good feeling about my kids :) Maybe that's the mom talking in me (ha ha)...but I think they will be good caring people. Lets hope at least :)

Anyway- I am very excited about going and meeting new people of any size really. I think Will is going to have fun too- I think he enjoys being around other kids. Matt's starting a play group with the kids in Feb. though, which will be really good for him...both of them really...

So our trip to Delaware is in a few months and I am getting more and more anxious by the day. I am also getting more axnious about meeting more people with Metatropic. I really hope that there will be at least ONE person at the Detroit Conference in June who has Metatropic. It would be really great to actually meet someone face to face! I would really love to meet anyone with dwarfism or a child with dwarfism face to face....I would love for Kaela to have lp friends growing up. I think it would be really good for her...I know I've said this many times before, I guess I really think it would be good for her. I better go tend to my children. Kaela's having fun rolling all over the floor shoving whatever fits into her mouth. She's such a cutie....and Will's off playing with his trucks of course! Who knew a boy could love his trucks SO much...no teddy bears in bed at night..only the biggest metal diggers you can find in the house surrounded by little ones...:)

Little Miss Kaela

2008-01-28T10:42:00.000-05:00

So our little miss Kaela is just so cute. She is really doing great too. She started rolling about a month ago, but she's really a pro now. She had a hard time to start, which PT has really done a lot for her in this aspect I think, but now she's all over the place. She loves to be on the floor and rolling around. She really gets herself where she needs to be. It's pretty cute. She is getting quick too. If she sees something on the floor that would go perfectly into her little mouth she's off. She's working on getting those little legs up under her and trying to push forward but it is still hard for her, although I would guess she may actually be able to scoot within the next 2 months. I do worry about her and PT though. So many people talk about PT in a postive way for LP kids, and then so many of them talk about it in a negative way. I go back and forth. I see what it has done for her in terms of her rolling now and her flexiblity has improved SO much...but I do worry that they will do something that could cause more problems now or in the future without knowing it. I can't blame them for not knowing- there is so little information about it out there, but I have to sometimes go with my gut. I think to myself that if I feel this is not good for her, I just have to listen to that. I mean, really, what's the big rush. Everyone says that LP babies/kids do things in their own time. Which I really believe about all kids. Every kid is different wether we are avearge size, little people, etc...we are all individuals that will reach our own milestones in our own time. I don't care that Kaela is not sitting. I mean really, who cares. Well, the PT cares, but does it really matter? I do understand that she needs those stomach muscles to do many things, but it will all happen in it's own time. So many people have strong opinions on this on the POLP website too...I enjoy reading things people write and really like that I can ask something if I need to and get help from other parents of LP's, but some people are soooo opinionated. WOW. I think sometimes we get caught up in thinking we know what is best for people, when as a parent, there is no one that knows better. We all have the rights to our opinions, but again, not one of us has a child exactly the same. And what works for one may or may not be good or work for another. I think we need to listen to ourselves and our doctors here. Many of the parents on the POLP website have Achon babies, and what is true for their babies may not be true for mine....or someone elses even who is Achon. It makes you question things though. I don't know. I think it's important to talk to your specialist and Ortho docs because I believe they really know the most.

Anyway-back to Kaela (I got off topic there a little huh?!) So yeah, she's rolling all over the place, she's eating real foods, well smashed up that is. She seems to be doing really well with them too. She's always been good at that. Our little chunky girl. She really liked her pears last week. She ate the whole jar. She seemed to really like the sweet potatoes and corn too. My mom gave her some ice cream this weekend- talk about loving food...that she loved!! Go figure! Will was kinda the opposite as her. He was not too crazy about sweets, but she is crazy over anything sweet that you put in her mouth :) Just like her mama!

Her and Will are still madly in love. I just love watching them together. Kaela truly lights up when she sees her brother approaching. Talk about a picture perfect world. They are just so cute. I can only hope that they continue this special bond as they grow. I know Matt and I will obviously raise our children to be loved and love...and hope that they will carry it on in life.

I could probably write forever...but will stop for now.

How we found out...

2008-01-14T19:38:00.001-05:00

So, we wanted to start this blog, and did, but have not really done much with it. I guess it's time we start. So it's now January 14th, and our little Kaela is almost 7 months! It's crazy how time flys when your busy busy busy...and having fun :)
I'm going to do a little back tracking...to about 7 and a half months ago to give a little insight into how this all came about.
This was our second child. We already had a son, William, who brought more joy into our lives then we ever new existed. He is now 2, as of December 2nd and such a great big brother. So my pregnancy was pretty routine other then having gestational diabetes for the second time. I was taking insulin twice a day and started those lovely twice a week non stress test at 30 weeks I believe?? I also had an ultra sound with one of those non stress test, so I was able to see our little girl quite often. Something good that comes out of having to poke yourself twice a day with needles and 4 times with the sugar tester! We didn't find out we were having a girl right away either, it took a couple of ultra sounds before we knew, but we were so excited to find out we would be able to add pink to the wardrobe :)

So around 32 weeks I had an ultra sound to test the baby's weight since I had the diabetes. The babies weight was measuring a little low for the number of weeks and her long bones were measuring shorter then 'normal' (a word I really don't like using anymore). My mom was with me at this appointment. They had us in this room forever waiting to see the doctor. You know something is not right when you are waiting to see the doctor forever and their are about 7 other doctors/interns looking at her images on the computer outside the room. Once we finally saw the doctor she told us that they weren't sure what it was, it could just be that she was small, asked us if we had 'shorter' people in the family but also told us it could be a skeletal dysplasia. I had never heard this term before and didn't know what it meant. She very briefly told us that meant her bones were not developing properly and she could be a little person but lets schedule another appointment in 3 weeks to see how she is growing. I was worried but not too worried. Sure we had smaller people in the family and who would have thought? Well, 3 weeks later little Kaela hadn't grown at all...this is when they confirmed she had a skeletal dysplasia. They said they thought it was Achondroplasia but couldn't be sure until she was born or if we had an amnio to find out. We opted not to have that done since it would either say yes, she is Achon or no she isn't and we don't know what it is. About 3 weeks later Kaela was born at home. No, not on purpose! Why would you do that on purpose :) She came VERY quick...my mom caught her, my son was throwing up sick and my husband was trying to put a video on for him when my mom walked in just in time to say what the...and pretty much catch the baby! EMS got here about 3 minutes after she was born and took us all to the hospital. We knew pretty quickly she didn't have Achondroplasia because she didn't have any of the characteristics. About 2 days later they diagnosed her with Metatropic from some xrays they had taken. She was in the NICU for 2 days and in a regular room for 4 days. She had to stay there until she had an MRI to be sure her neck was stable. It was and we finally brought her back home.

2007-11-12T22:40:00.000-05:00

My name is Matt. My wife Sarah and I started this blog as a way to both reach out to other people who are parents of children with skeletal dysplasias and to share information that can sometimes be hard to come by. Our daughter Kaela is almost five months old and has been diagnosed with metatropic dysplasia. The rest of our family does not share this condition nor are there any cases in our known family history. It has been about six and a half months since we were given the news that our daughter would be a bit different than other children. Over that time period we have sought out hospitals, doctors, other parents and anything else that could help us understand what to expect with our daughter's development. There are only about 80 reported cases of our daughter's particular dyslpasia in the world so information about it has been difficult to find. Not until recently did we receive a verified diagnosis and a plan for care. This is our first attempt at a blog and we hope that it can serve as a conduit for other parents to find someone who they can relate with as well as a forum where they can discuss the emotions, struggles and questions that they may be dealing with.