1st centile schmentile!

Today, I took Jackson to his 9 month Endocrinologist appointment. During the trip to St. Louis Children's Hospital Jackson told me about the different objects in a doctor's office: basket. ear test. heart test. kleenex box. He also watched his usual Spongebob Squarepants DVDs and played with many toys that all ended up on the floor. There was even a delightful yelling-random-words-at-the-top-of-his-lungs moment!

The results:

• Jack is still in the 1st Centile. I'm surprised he isn't a 0! I guess it can't go any lower than that. He hasn't shrunk! He hasn't really grown at all. He's gained 3lbs since his last visit. He lost about a pound-and-a half during his admit at DMH.
• Because of his very tiny stature, Jack had another bone age test. It's just an x-ray of the left hand that helps the doctor determine if Jack is still growing, how much growing he has to do, and what size he compares to right now. He was P.I.S.S.E.D.!!! It took three people to hold him down AND he was in his wheelchair!
• We discussed his osteopenia and the need for continued therapies to work on bone regrowth. If he breaks a bone I am to call endo immediately. He is at risk of broken bones because of this.
• We discussed his risk of precocious puberty. We don't see any signs are I'm not too concerned about that right now.
• We discussed testing his thyroid. The Attending decided that isn't needed at the moment. Yippe! No labs drawn!
• We discussed his igf-1 deficiency. Replacement therapy is similar to growth hormone replacement therapy. It's a shot. The drug is called Increlex. Jason and I still don't know if we want to do this yet 1) Jack doesn't walk yet. We would like to wait until he's walking because the bigger he gets, the heavier he gets. I don't want to be carrying around a 50lb child. 2) He's been in such good spirits, most of the time. Do we really want to give him 2-3 shots a day, plus check his blood sugar 2-3 times a day? I think I need to discuss this with CFC International and the CFC Medical Advisory Board. I understand that his growth is important. I just don't know what to do.

Assume

I can only assume that Jack is standing at school based on recent conversations...

Stand up Aly class
Walker Aly class
Snack
Guitar Aly class
School day
Walker school day
Stand up Aly class

Yippee!!!

We are ever so excited to announce that Jackson will be receiving an iPod touch from Central Illinois Special Needs Assistance Program!!!

We will sync all of his apps from the iPad so it can go with him. Much lighter means more mobile! Learning and Communication apps, here we come!!!

Mr. Sandman

Jack's been sick.  Yes. Sick. Again. This time it's been some sort of nasty cold/virus/really bad congestion with pale skin and a low grade fever. He missed two days school. That's a lot when adding his therapy services to the picture. No speech. No PT. No OT. No walking the halls in his walker.

He saw the pediatrician last Tuesday before coming down ill. Actually, he was already pale and not sleeping well.  Not like he ever does. He lost a little more than a pound during the December hospitalization. He received his Kindergarten shots!  I know! The doctor gives these at age 4. Wow! I can't even comprehend Kindergarten for Jack.  He has another year of preschool!

Back to the sleeping. It's gotten bad again. The Benadryl no longer gets Jack drowsy. My nights have joined the infomercial era once again! We are trying a drug called Clonidine. It's supposed to help with sleep, although it's a drug used for ADHD. Tonight is the first night. I crushed the half pill and put it through Jack's tube with water. Luckily,  the pill crushed easily and turned into a powder. Within 20 minutes, jack was out. He hasn't made a peep. No moans or whines for his beloved froggy. Night 1 has been successful so far. Yes, it's 2am and I'm awake. I just fed Katie.  She's been very sick with the same nasty congestion and fever as jack.  Evelyn has been aick with it as well. She's missing day 3 of school.

Out of his mouth...

Our conversation for two minutes:

Heart test (stethoscope)
Diaper change
Toothbrush change
Steak change
Bacon change
Cameras
My
Mine
Hello
Clock basket (in doc office)
Arm ear
That ear
Open ear
Head
Clock (in doc office)
Spin clock
Hear clock
Lay down clock (doc office)
Teeth doctor clock (dentist office clock)
Ear (otoscope)
Wagon clock
Bath
Water
Open comb
Basket tooth
Tooth doctor (dentist)
Bacon
Bacon potty
Peepee potty
Diaper change
Ahhhh clock
No clock
Bacon clock
No bacon clock
No ear clock

Happy Day

Wow. 4 yrs. Every time I look at the clock I recall the stressful events. Due on Valentine's Day. 6 weeks early. You came into the world; us knowing you were already quite an individual but unsure exactly how special you were. I saw pictures of you when I was in recovery.I got to touch you in your incubator, if only for a minute, your tiny yellow ear muffs covering you, before you were wisked away for a helicopter ride to a distant NICU. I saw pictures of you for 2 days while I recovered, 45 miles away. I'll never forget this day. You've come a long way and you're a stinker!
You wanted a guitar birthday so I made you a guitar cake.
You requested steak so we'll be going to Texas Roadhouse in a bit!
I love that you are talking!
*Update: we went to Texas Roadhouse and Jack loved every bit. He tasted steak, grilled mushrooms, bread and butter, and cheese. He swallowed at least one l piece of steak and mushroom.