Nolan had a good check up despite everything going on. Thing's we have noticed lately is Nolan's posture has changed, he has a harder time walking and he has difficulty swallowing without throwing up. We believe all this is related to the radiation he had to his upper cervical spine. It's so disappointing to see all these things happen to his body but he seems so content and happy to just sit on the couch. All Nolan's blood count's look great but we have been noticing Nolan getting infections on his skin, around his g-tube and the sinus infection...So Dr. Aguilera checked his IG levels and they were really low. The remedy for this is IVIG and he will start getting those infusions sometime in July. Hopefully that will give Nolan's immune system a boost. He will also go in to the clinic tomorrow to get his everolimus and cortisol levels checked to see if these can be behind his fatigue and vomiting. Please continue to keep Nolan in your prayers. He wants to stay well and be able to go to camp sunshine at the end of this month :-)
Nolan has also come up with the idea to sell "slime green" Rally for Nolan t-shirts. He is so excited about this and for those that don't know "slime green" is his favorite color ;-) All money raised will go to researching cure's for Medulloblastoma.
Brittany
No comments:
Post a Comment