9 Month Appointment/Preschool

Today we had Jonathan's preschool open house. Chelsea and I took him up there and at first he didn't want me to leave his sight but then he began playing more. I think he was a bit intimidated by some of the kids b/c he didn't know them. It's funny because he was a good 2 - 3 inches taller than nearly all of them! The teachers were wonderful and it looked like so much fun. So many different activities. I wish I could go. We told him that next week he will go and stay for a bit but the mommies couldn't stay. I think he'll be okay.

We then had Zachary's 9 month appt. Everyone commented on how big he had gotten and how HUGE Jonathan was. We weighed him in at 51lbs...fully clothed. I think he is 42 or 43 inches tall. Dr. Kate was even impressed. He got a bit wild and she said, "Glad he's going home with you!". Ha! She laughed and said she has days when she takes her 2 kids out alone and feels like crying. Glad to know I'm not alone.

Well Zachary weighed in at 16lbs and 14oz with a diaper on. He is in the 5th-10th % and has fallen down a bit on his chart. At 6 months he was 15lbs and 1 oz. So he barely gained 2 lbs in 3 months. Not good. He is 28.5" long and is in the 50th % for that. His little peanut head is in the 5th %.

I addressed every concern I had and the first was his soft spot...still huge and she said that was reported in the hospital report and she just wants to watch it.

His lower part of his spine seems like it sticks out. She said she doesn't think it is curved and that it is b/c he is so skinny.

Not sitting up...while he is making progress he still is not doing it. She will gladly send him to physical therapy when I'm ready. I may wait a few weeks because he seems to be doing better and the parents as teachers lady gave us some good ideas for helping him along.

My ultimate concern is that he has NF1 or Noonan Syndrome (NS). Both seem to effect (in some way) kids with JMML and that is how I found out about them. He has the one symptom of NF1...the cafe au lait spots. As for NS, I say he has several and Dr. Kate agreed. The main symptom there is a heart defect...pulmonary stenosis. He does have a murmur and 2 echocardiograms confirmed it was just a murmur. But you see, NS has a huge spectrum of symptoms. Some people do not know they have it and others, well they have it bad unfortunately. Another symptom is undescended testicles...check. Low set ears...check. Droopy eye lids/lazy eye...His eyelids may be a bit droopy or is it hereditary? That's the thing, lots of these symptoms can be hereditary traits as well. NS can also cause (if cause is the right word) developmental and mental delays and mental retardation...obviously I would take any or all of these over JMML.

Dr. Kate will always say, "what is your Mommy gut telling you?"...this time, it's telling me that I'm afraid for my baby boy. I'm afraid of 2 things...the worst isn't over yet and that he truly has JMML and something is "hiding" it some how and the not so bad (I hope) is that he has NF1, NS or some combo of the 2. Unfortunately, my Mommy gut is not telling me that it is nothing.

She advised me to call a geneticist and then we may call in a neurologist as well. For some reason, these 2 steps are really hard for me. Maybe deep down I do know that something is wrong or maybe I'm just really sad because I wish (so badly) that my mom was here. With the first anniversary of death approaching, I'm finding everything a little harder these days.

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.