a's intro

[Guest guest]

a,Welcome!! Just posted a brief update of Kylie's journey earlier this afternoon, but thought I'd share with you this little piece. When Kylie had an unplanned 2 month break from her cast, after several weeks, she started to ask repeatedly for her cast to be put back on. The only thing that I can assume, is that the cast actually made her back/muscles feel supported in a better position than she could hold on her own, and she missed that feeling.It can be overwhelming when you first think of it (and I'd say the first and second cast as well) but life has been pretty normal with her cast (and we have a one year old we chase after as well!). Things take a little longer, and in this particular cast she topples over a little more (it was a little too thick/heavy in the front and threw off her center of gravity) but she doesn't really complain. Her biggest complaint this time, was the Dr. forgot to make it pink!There are lots of tips and suggestions in he history of the list. It's nice to go back through old messages and see.The knit rite shirt is a mock neck short sleeve shirt, that has microbial agents embedded in the shirt. (We paid 85.00 for ours) and we "floss" her skin by tugging on the shirt in every direction daily. She also asks to "itch" her back by pulling on the shirt. We also remove the shirt and wash it. The first time was challenging, but once we figured out some tips by watching the youtube video posted by dylanator - we have the shirt off and on in less than five minutes. I wash Kylie's hair every other day, and that has been easy as well. The first cast was filled with trial and error, but we got the hang of it. The other day, we were getting on an elevator, and a gentleman and his wife were getting on and watching the girls, and Kylie was introducing everyone to him, and he looks and says "does she have on a bullet proof vest or something" Kylie said yes, "I'm super Kylie - this is my cast!" I'm so grateful to have learned so much on this list and been able to be my child's best advocate.BeckyOn 2011-10-27, at 2:31 PM, a wrote:

Hello,

I am going to attach the letter I sent to to make it a bit eaiser for me:) Sorry for the long intro but looking for others in my area who are going through the same thing I am, and to see if they have used the same doctors. This is a great site and I would like to thank , and everyone who made it possible.

Our journey has just begun. I am new and fresh at terms and such so please excuse me if I don't make sense:) Reid is our second child and the poor kid has been through the ringer even before he was born.

My 11 month old (today) son was just diagnosed with infantile scoliosis, which I guess we will see if it is congenital after the MRI. ???? Not sure if that is how it works. I had polyhydramnios (which is too much amniotic fluid) during my pregnancy, so he had little or no room to move around in utero. About two months after he was born I noticed that his head was ALWAYS tilted to one side and when we went to the doctor she told us that it was most likely torticollis. We took him to a orthopedic and she co

nfirmed that it was indeed torticollis. We had him in PT two times a week for the first couple of months, and then he is still being treated once a month since he has improved so much. He had RSV which caused phenomia and was hospitalize for a week, and has asthma. He was "colicly", had acid reflux and we found out that all his issues were due to a milk allergy. Once we changed his formula (for the 11th time) he was a new and enjoyable little guy. We later found out that he is also highly alle

rgic to peanuts and that was from just skin contact. We go to a top allergist next month to get a better idea what is going on with him in the allergy department, and I am looking forward to that.

Back in June our PT noticed that he had a "rib hump" on his back and thought it was something we should look into, and so we did. The radiologist diagnosed him with scoliosis and so we took him back to his orthopedist which (in my opinion) brushed us off, and told us not to worry that it was because he can't stand yet and to come back when he turned a year. He has also been under the care of a neurosurgeon since he has such a big noggin, and I showed him his back and he told me that I needed to get a second opinion and referred us to Dr. Sponseller at Hopkins, in Baltimore. We are very lucky in the sense that we live in land and Hopkins is only a hour drive for us. So we took him there and he said that his curve was 35 degrees and we really need to look into casting or a brace and we were devastated to say the least.....pretty much speechless. I know it's not something terminal, and I am over the moon regarding that, but the thought of my baby being put under anesthesia and being in ca

st for months is terrifying. He also told us that his curve back in June (after looking at the x-ray) was 25 degrees and anything over 10 degrees was considered scoliosis.

So needless to say my husband and I have decided to go ahead with the casting.....