Thanksgiving Feast

Today I volunteered at Jonathan's preschool to work at the Thanksgiving feast. Did you know that 16 3 years olds are exhausting? Yet, some of them are so loving and sweet that they make it all worth it. One little girl came up and hugged me and sat on my lap. How sweet.
We played for a bit, rehearsed the "show" they were going to put on for us and then I left to help set up for the feast. Several moms were there and we chatted a bit. One mom said to me, "Oh you are Jonathan's mom? He was the little boy I had to try and get out of the maze at the pumpkin patch. He didn't want to get out!". Hm, how do I take that? Was that a, "your kid is a brat" statement or just a comment. I don't know. I felt kind of bad. Yet did I tell her that while we were playing her little boy was snatching toys from a little girl? Nah, I bit my tongue. I know my kid isn't perfect and I don't want him to be. I was just over sensitive because I want him to be good for everyone! Oh well, he's 3. He did do very well today and I was so very proud of him. He shared toys, played with the kids and then sat quietly and looked at a book. What? He never does that at home!
Here are a few pics from his show:

Well Zachary will be one tomorrow. This time last year I was spend my last night with just one kid. I had no idea what the year ahead had in store for me. Goes to show, you can't plan your life, you can only live it!

I meant to post this earlier but if you could say a few prayers for Jason's cousin Jarrin. He was diagnosed with a brain tumor almost 2 weeks ago. You can read Jarrin's story here. I know his family would appreciate any extra prayers that could be sent his way. We all know the power of prayer.

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.

Various Updates

Zachary was referred from one Urologist to another for his undescended testicles (I am sure when he is 9 years old he will kill me for sharing this info) due to the fact that they are still up in the abdominal area. We met with a very nice doctor who informed me that he would like to do the surgery shortly after his 1st birthday. They are going to schedule it and give me a call. Let's hope it is in 2008 so that it's FREE! I know that sounds petty but seriously, it would be less stress for us!!!

Anyway it will be done as outpatient and he will have 4 incisions...2 in the abdominal area and 2 in the scrotum area. I must admit, I am ready to get this over with.

As for developments, Z is trying super hard to sit up on his own and can manage it for a maybe a minute here and there. He now does "so big" but won't do it on command for the camera!!! He is starting seperation anxiety with me, Jason and Chelsea. And that is just so much fun...NOT! He is rolling and doing the army crawl a little bit. Overall, the little guy is doing wonderful.

My big little guy is gearing up to start preschool. I had the parent orientation and since it is a co-op program (at a nearby Lutheran Church) I have to volunteer to work the classroom and fundraisers 6-8 times a year. YIKES! I am stressing over that but from what I can tell the program is incredible. If Jonathan likes it, I will make it work. He will go Tues/Thurs from 9-12 and Chelsea has agreed to take him and pick him up. I am so grateful that her and Sally are able to work this out for us. I think it will be great for Jonathan. We have open house on 8/28 and then he starts on 9/2. I am really nervous and expect to shed a few tears.

We also signed him up for AWANA at my sister's church. He is really excited and told Grandma and Grandpa that he met his teacher Ms. Christa and that she was really nice. It is only one night a week so I think he will do okay there. He has lots of new and exciting things headed his way.

I just can't believe my babies are getting so big.