So Maddy has been very busy the past 2 days. On Tuesday Amber & I spoke with the doctors about the progression of Madison (or lack of progression), they agreed with us that she was not really improving with her feedings or her breathing. They felt it was time for her to go to Primary Children Medical Center (PCMC), and while this news is a little scary it is also exciting because we know she can now get the help she needs. So on Thursday morning Madison was transported to PCMC to their NICU. Since she has been there we have already had a great team of Dr.'s and nurses, They have been evaluating her and have given her a CT and she is doing a sleep study tonight. We also had the genetic specialist speak with us today to ensure she doesn't one of the many syndromes that sometimes accompanies PRS (i.e. Stickler Syndrome). They do not think she has any of these Syndromes but they don't want to rule it out until she meets with the eye doctor and until they do genetic tests on Amber & myself. So after all these tests and studies they are going to put together a plan for Maddy which may include one or some of the follow:
- Button surgery- This is when they connect the tongue to the lower lip so it won't fall back and block her air way. This can be attached for months to sometimes a year or two.
- Jaw distraction surgery- This is where they saw the jaw in half and put a brace type device on both sides of her face and then slowly extend the jaw over 6-8 weeks as bone grows in the space missing. read here for more info, http://www.pierrerobin.org/jaw-distraction.htm
- other things like a Tracheotomy, a gastro tube for eating, and a few other procedures.
- She will still have the surgeries to fix the cleft pallet but again that will not happen until she is 9-12 months.
What a great place to be. We are praying for you all. Love you guys
ReplyDeleteWhat amazing place she is at. Are prayers are with you and your family. We are praying for her and yor family day and night. Can't wait to come and see you guys. Let me know if I can do anything. I love you guys ton and am so proud of you and what you are doing. You are amazing parents and I couldn't be prouder to have you as a brother and sister in law. Love you guys. Stay safe and know the Lord is with you.
ReplyDeletepcmc is a wonderful place...they saved me, they will help maddy. my sister works there, too =) we love you tons and are continually amazed at your strength and faith. please remember that we,too are praying for you and wish there was more we could do to help. PLEASE let us know if you need ANYTHING! much loves xoxoxo, jeana
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