Saturday, July 26, 2008

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

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 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 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)! :)


Kim said...

WOW! So much excitement in that post! Kaela is getting so big-she is like a little girl and seriously Will and Preston are one in the same. There is just something about two and a half year old boys.
Sorry to hear about Kaela's back, but maybe with a new brace and the afos things will sop progressing! So exciting that you met these new families too! Hope that the local family you met joins us in the blogworld!
Have a great weekend and thanks for the updated pictures. They are both so adorable.

The Johnson Family 5 said...

Sorry to hear the not so good news with Kaela's back, but I will keep my fingers crossed that it all gets sorted out! What an amazing thing to find the other little girl so close in age with the same rare dwarfism and to be on different sides of the world! Amazing! Hopefully one day you will get to meet each other!

Anonymous said...

She is such a cutie! It gets harder and harder to control them at the doctor's office once they get to moving around, right? It's great that you have met two other families!

Thanks for the cute photos! Kaela is going to be a heartbreaker.

Amanda (Parker's Mom)

Danielle said...

Kaela is such a beautiful little girl, I just love seeing her pics! Of course Will is a cutie too, but I'm partial to girls :)
I so wish we were close to would be so awesome to get together, not just because we all have something with our kids in common, but because you all just seem like such cool people! Again, if anyone is ever at disney...we're close!!

Jennifer said...

Exciting post Sarah. Kaela is just getting cuter and cuter. She's looking so grown up! All that hair!

Tonya said...

I am glad she is getting a new brace!! Her's was getting too small! Hopefully the orthotics will help correct her feet positioning. We will have to have the new families over when we have another get together!!

Lisa said...

I'm so glad you saw another mom in a similar situation. It's odd. It's like an instant connection.
Keep us posted about the back issues!