Wednesday, August 11, 2010


It's more of the same for Jax today. His bottom is still pretty tore up, although I didn't expect it to be better immediately. I hope to see improvement by tomorrow. He vomited after his breakfast and lunch today, but neither were the nasty choking episodes, so I was thankful for that. I scheduled Jax's allergy testing at the hospital, so he'll be getting that checked out the first week of Sept. I just realized I have to go over appointments with Jason when he gets home because there are a lot over the next 2 months. There is a surgeon consult, feeding psych consult, allergy testing, feeding clinic, eye check ups, GI check up and that doesn't include the weekly therapy and chiropractic meetings. I've also been told that Jax's insurance did not approve his continued PT through the private practice, so we'll be starting PT back up through our state's early intervention program - Birth-to-Three.

I received the full report from all the physicians at Jax's feeding clinic evaluation. It's very humbling to read the 13-page report. It covers Jax's extensive medical history and then each doctor's findings and observations from our day. It goes into detail about Jax's global developmental delays. His fine motor skills were that of a 15 month old, visual motor skills were the age equivalency of an 18-month old. I found it interesting that they actually graded his height as a 15.5 month old and his weight of a 10.5 month old. But that his height-to-weight ratio wasn't too far off.

The GI doctor's notes bothered me a bit. His notes stated "suspected mild mitochondrial disorder". Now I know Jax's regular GI specialist has always said this, but it's hard to read in black and white on a medical record. He also stated that he suspected Jax's chronic diarrhea was a recovering symptom from his viral infection (that caused all the vomiting starting back in April) but if it continued, he would be a candidate for an upper endoscopy and/or colonoscopy. He was officially diagnosed with a Feeding Disorder, which was well known by all of us, but you have to get the official diagnosis from a clinic like this after a full review.
I don't understand everything on the report. There's a lot of test scores that were dependant on my answers from a 20-page questionnaire. From my answers, they gave Jax an overall development score of 13 months (when he was 21 months, 19 months adjusted). These items all showed elevated outside of normal limits:
* Observable meal time behavior
* Child hunger/satiety cues & coercive interactions
* Parenting Stress Inventory (parental distress was normal, but all remaining subscales including defensive responding indicating possible over reporting of symptoms) - WHAT the heck does that mean? (sigh... I can't win)

I wish I didn't get this report right now. I'm so emotional and tired this week, so of course it sent me into tears. I'm glad Jason gets home tonight...

Jax loving his slide.

Brady feeding his stuffed moose some play food.
The boys sat to color and I thought it was so cute that a baby doll was sitting with them too.
The speech therapist left his baby doll behind by accident, so he's a guest at the table this week.


Christina said...

((HUGS)) I also hate the long reports. On Kendryk's "new" developmental "curve" aka the developmental screen of Visual Impaired kids, she lands in the 7-12 month category. At 17 months 15 adjusted and this is the screen for kids like Kendryk.

I am so happy Jason gets home tonight! For the extra support! I for one had one of those weeks last week, today was the first day it was better(I kinda lost it on some nice lady at the hosptial because she phoned to tell me surgery had been moved, turns out it hadent.) But how the little things add up when your not having a great week.

Melissa said...

I'm sorry your having a bad week...its alot to deal with and then by yourself on top of it. You have every right to be emotional. Glad your hubby is home tonight! Your boys are cute as ever and I am so impressed that Jax keeps his backpack on in his pictures!

Jenifer said...


I have followed your blog for a long time now. I am not sure how I came across it but I have enjoyed seeing your boys grow. They are absolutely adorable!!

I have almost 8 month old twin boys. I started blogging during our struggle with infertility and have enjoyed continuing to blog about our boys.

I wanted to share with you a diaper rash remedy that my friends swear by. I luckily have not had to use it yet but all of my friends say that it is truly a miracle cream.

You take Boudreaux's butt-paste and squeze it into a bowl. Then add Maylox or Mylanta and Corn Starch to make a thick paste. You want to be able to paint it on with a spoon so you want it thick not runny.

You may have already tried this but I thought if not it may be worth trying. I hate to see any little one in pain.

You are an awesome Super Mom. Your boys seem so happy! Continue to keep your chin up! You are doing a great job!

Laura said...

Big Hugs Mama!
"* Parenting Stress Inventory (parental distress was normal, but all remaining subscales including defensive responding indicating possible over reporting of symptoms) - WHAT the heck does that mean?"

Well I honestly have NO FREAKING IDEA what that means but I'd love to know too. If you find out let me know? Because whatever it is I'm sure they scored me on this too. LOL! I'm guessing they mean are you aggressive, do you force feed, does your anxiety feed his behaviors, or something along those lines? I have no idea. Whatever the case, I was told by our feeding clinic psych that it would NOT be normal for the parent to not display stress and anxiety over the feeding issues we have and they would be more concerned if you behaved outside of the norm which is frustrated, anxious, confused, exasperated, and desperate. So I guess we make the cut for feeding therapy huh?

Jenn said...

I am not going to even hint that my situation is anything close to yours but just wanted to say my week has been hard too with lots of tears from me. Cole's circumcision issues cont. to be an issue 2 years ongoing now...we have to inflict pain on him ourselves pinning him down as he screams and we remove adhesions...nobody can give us answers, nobody can help us make it stop...I am tired of no answers, the pain I cause him and no "cure." Yet, I trudge on in search of the person, etc. that can make it all is draining emotionally for sure. Hugs to you. Jax is so amazing...both your boys are and you are an amazing Mommy.