Kaela's surgery and pre surgery test

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

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

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

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!!

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

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

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 :)