Medical Update

It's been a while since I posted a real medical update on Zachary. We went to see Dr. Rob on Friday and everyone was amazed by his growth and his personality. He was flirting and showing off his baby blues. He was a dream. He did good on the blood draw and only cried because he had 3 women holding him down.

We discussed a few of my concerns and Dr. Rob did not brush any of my concerns off. We will now go to blood draws every 2 months. He can start his vaccines at 12 months if all CBC are normal between now and then. This one was normal. I did not ask for numbers because hearing "everything looks great" is enough for me. His lymphocytes were still high (they were in May when he had his UTI). I may ask the pedi if we can repeat his urine culture just because I want to. He was weighing in at 16 lbs.

His muscle tone looks good and we are just to keep working on sitting up with him. As long as we see improvement, then there are no worries. Dr. Rob said he has "line backer legs". LOL He asked if he was vocal and my reply was, "yes he is!". He even made his little motor boat sound for him. His newest trick he learned.

His soft spot is still a bit big but he said (same as Dr. Kate) as long as he is drooling, then not to worry when it is sunken in. It can be a sign of dehydration but b/c his is larger, it is more noticeable. He loves his solids and will now eat some yogurt, cheese, potatoes and bread. He LOVES food!

My main concern lately has been a few spots I have noticed on him. When I did my research on JMML back in January I learned that JMML kids can have Noonans or NF1 so these symptoms always remained in the back of my mind. NF1 kids have 5 or more spots called café-au-lait. Well a few weeks ago I noticed 2 of them. I also noticed a freckle. Most children do not get freckles until after 1 or maybe 2 years of age. Dr. Rob said he wants to keep an eye on these spots and if I notice more then to call him. I read that they usually appear in the first year of life and after the first summer because that is when the baby is exposed to the sun.

So for now we just watch the spots and pray that they are just spots and not linked to NF1.

I'm going to end with a request to all of you, in January I joined a support group for JMML families. The parents were all so wonderful and supportive. Unfortunately, a young baby (around Z's age) named Bobby passed away on July 10th. He is now with the Angels and free from pain. I am sure his parents would appreciate any extra prayers for them. I can't imagine their pain.

D & S, you are in my prayers and I hope you can find some peace soon.