We had a great experience @ Cincy Children's Hospital Neurofibromatosis Clinic.

[karamille]

From the moment we walked in the door, we knew we found our clinic. Dr Schorry was great. She took Ike's gait issues seriously and also was concerned about his weight/size (unlike grand rapids where Dr Vanderlaan actually argured with me about Ike being the size of a 9 month old baby @ 20 months old and said he didn't have FTT.) He is now 6 blocks below zero percentile, where he had been tracking 4-5 blocks below zero.  She listened to our concerns, discussed her areas of concerns, and came up with a plan for Ike, We did xrays of his pelvis/hips, rechecked his thyroid function and acylcarnitine while we were there, and will be returning in two months or so to see ortho, neuro, and most importantly (IMO) endocrinolgist. To me... it makes total sense that getting to the root of Ike's weight gain problem is EXTREMELY important. The kid has went from only having gross motor delays to now having global delays has his weight slides further and further below zero percentile. If NF kids are already predisposed to delays, and if his FTT is contributing to his delays, then the right thing to do to treat him as whole person. Which is what I have wanted all along. To get away from the dr approach of, "Don't know whats wrong with him but its not my problem." For the first time since he was a day old, I feel like we are in good hands and I step back and quit having to fight and advocate for Ike's care. And its a really good feeling. :)

Oh... BTW.... Cincy Childrens Liberty campus is EXTREMELY child friendly. WAAY more so than Riley or DeVos in grand rapids. Lots for little hands to touch and explore, childrens books everywhere, bright colors, staff was super friendly, and even was met at the door by a greeter who escorted us to the clinic area while showing us all the great kid features along the way. We just are in love with this place. This is how healthcare should be.

[kalista]

Glad you had a good experience!

[Mipsy]

Yay!!!! I'm so happy for you guys!!! Please keep us updated on what they plan on doing to help him.

[zolanmel]

awesome :)