Sunday, May 22, 2016

Rehab Doctor Visit

On our discharge paperwork from our visit to Children's last week I saw that they listed Raygen's surgeries in order.  I am just in awe of what she has went through and conquered.  It's amazing to me that all her surgeries look so small when typed out on paper, but each one was a chance we could have lost her.  Thanks to an amazing God, hospital and an amazing daughter she fought through each one and is certainly a hero in our book.
My little wiggle worm.  This girl no matter how large the bed ends up doing circles in her sleep.  I've learned the safest bet is a mattress on the floor.  She hates blankets on her as well so if you try to cover her up she immediately kicks them off.  She is total opposite of her mom in that category.  I have to have blankets :0)
Raygen did wonderful on her visit to see the Sports Rehab Doctor at Seattle Children's last week.  The reason I wanted to take Raygen was to see if there was anything I needed to be doing to improve Raygen's function on her right side.  The great news is the doctor said "No."  She said that Raygen was doing great.  She said that Raygen won't ever walk completely normal because she did survive a stroke that does affect her right side movement.  The doctor also stated that she is happy to see how Raygen runs and walks and even how she uses her right hand.  Raygen doesn't use her right hand much, but the doctor stated she used it enough not to need any braces :0)  She also stated that Raygen didn't need any bracing for her feet :0)  I am so relieved because when we did try to brace Raygen's hand and feet she refused to use them.  She didn't walk and didn't use her right hand at all.  Basically, Raygen will come up with her "way" of doing things and that's okay.  It may not look "normal," but really what's normal?  Raygen's stroke affected so many areas of her body and now that she is growing and becoming so active we are seeing more and more of it.  Also, where her brain was damaged with the stroke is very close to the language area of the brain and so that may be the reason she is speaking yet?  I also learned that Seattle is doing some studies on CHD children and brain development and they are coming to the conclusion that even full term CHD babies brains when they are born are not developed full term.   Their brains are still that of a preemies??  I am so thankful that we have a wonderful group of doctors that continue to research and discover so many amazing things that will help the lives of our CHD babies here today and ones to come in the future.

XOXO

Erin