Hello Everyone,



 Here's an update  on Nolan's progress this Month...


We are now 2 months out of treatment and doing very well. Still plugging away with all the physical therapy and making progress with food therapy. Nolan is actually eating baby food off of a spoon! This is huge.  He gets stronger with each passing day. Although, like any other toddler his age, he is prone to tantrums. Mostly because of his frustration with the inability to walk. He wants so badly to move on his own and frankly so do I. My back cant take lugging a 26 pounder everywhere he wants to go.

At the end of January, Nolan had a bit of a setback. Come to find out, the excess fluid from the shunt in his brain, built up in his intestines and the pressure caused a groin hernia. OUCH! This prompted immediate day surgery. No worries though! All went well and the little guy is back on track. This week we head back in to Boston for an MRI to make sure there is no rogue tumor left behind in his brain. We will be on edge until we receive the results of this one for sure. Next is a visit to meet with an oral surgeon that specializes in Gorlins patients. This is only a meet and greet as there shouldnt be any jaw cysts in Nolans mouth at this age, but its important to keep checking.

Its so wonderful to be home now but I also feel a bit restless. Because of Nolans impaired immune system we are unable to leave the house very often. If all goes well with the MRI it might be safe to start thinking about picking up a few hours back at work just to keep my sanity.

Ill be sure to keep you all posted .

Nicole Smith

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