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.