Wednesday, June 6, 2018

Overdue updates!

Hey all!

So, we've had a few updates over the past two months and I know some of you have been wondering how things have been going. I will admit that I've been posting less because now that the boys are almost 10 years old, their friends can GOOGLE them, eek. So, I'm trying my best to share their lives in a respectful way. I know many of you have been on this journey with us for the past decade and have a true emotional investment, so I will definitely try to keep y'all up to date on some of the bigger things.

So, let's talk about Mr. Jax and that feeding tube of his. He's been on a tube-free trial now for a few months and we've certainly had our ups and downs. He did ok at first, but at our last check-in at the hospital, he had lost a pound. With him growing so much, it really made his BMI go down. The doctor had recommended that he use the tube again for the summer.

Well, that brought a lot of tears from Jax, then me, then the doctor. So, we came up with a game plan to try another 2 months with a few changes. 1) Jax is trying the hunger-inducing med Cyproheptadine again and 2) we're putting heavy cream in all his milk-drinks. The doctor had a long talk with Jax to take responsibility for his body. I also can only weigh him once every couple weeks, instead of every few days since it's putting too much stress on all of us.

I can say that since then, I think he's actually gaining weight! We'll see since we check in mid-July, but I think he's doing better. I think it was a major wake-up call for him.

In other good news, he is also doing a trial without his daily asthma preventative medication too! He'll still use it during illness or extreme sports, but dropping a daily med feels so nice. He really only uses his hGH injections nightly now!

He has also been able to have a normal bedtime routine of no machine, or adult diaper... it's really amazing to live this way with him. I hope it remains  <3 p="">
The boys had their First Communion and felt like kings for the day - they were so excited!

The boys finish school TOMORROW! They'll be going to the LearningRx this summer and a few months into 4th grade. We have them in a program that will hopefully help with any cognition deficits to help process information for school. It's a big undertaking 3x/wk and 1 hr at home each, but it's worth it if it helps. Our goal is to get Jax back into the main classroom 100% (he's pulled out for his learning disorder, dysgraphia, for spelling and writing, as well as all tests). I have hopes it will help!

In other good news, I've started as a wine consultant for Scout & Cellar. A company that curates and delivers clean crafted wine - yum!

Our summer will be busy with baseball, LearningRx, vacation bible school, swimming, a few small trips and juggling it all... just the way I like it!
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Making bread for First Communion

Jax likes jumbo blueberries now.

I love seeing the boys hold hands with their dad <3 nbsp="" td="">

Some special gifts for some special teachers.

A fawn that was born in our front yard!

First Communion

A hot and sunny Memorial Day weekend

Nothing like Jax having flour explode everywhere in the car from a 'stress ball' he made at school...

More Memorial Day weekend fun - opened the pool at the gym.

A rare moment in baseball... Jax is pitching to Brady!

Aunt Mary and cousin Josh came to a cold late Friday tournament game

Jax passing his lung test!

A little Sunday night Karate Kid movie viewing.

Wine with NO HEADACHES! My new mantra!
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Wednesday, March 21, 2018

The trial continues, with a new development

I've been waiting to give an update until we had some answers. Jax had an endocrinology checkup for his growth last Monday,  and we had to stop into the nutrition clinic for a weight-check regarding his tube-free trial. The endocrin-appointment went well with Jax's height hitting 23% now, which is great! But the doc could see that his weight gain has slowed down. I was nervous for what the nutrition team was going to say.

The dietitian called me Tuesday to discuss the growth and as expected, she's a bit concerned that he's growing taller faster then his weight is moving (his weight is around 5-10%), so she doesn't want him to slide down the slippery slope. We discussed his diet and have decided to replace 3oz of his whole milk mixed into the Carnation with heavy whipping cream. I'm going to try it all in his dinner drink and tell Jax it's a shake.  We push his meals so much the way it is that I have a little anxiety that he won't be able to sustain all this milk drinking he's doing (30oz). I want this so bad for him, but if he's not ready, then I'll have to accept that. But for NOW, he can try the next two months again, so we will continue to TRY!
Here's to hoping!

Since he's been disconnected from that machine for awhile now, he's been working hard on using the bathroom at night! He's doing decent if we wake him once through the night to go. He's wearing underwear and is more aware of himself, but he's not waking himself up so I'm not sure if that will just pan out on its own or what. For now, we keep waking him ourselves...

In other news, we had Jax's annual IEP meeting at school recently and they're keeping the same amount of intervention for his writing and spelling (5x/week) along with all the testing accommodations. I asked them if they felt we should take Jax back to the neuropsychologist for learning disorder testing - specifically for his writing issues. They all agreed we should. Last year Jax was dx'd with ADHD from the neuropsychologist and she saw all the flags for the learning disorder called 'Dysgraphia', but he needed to have half a year of 3rd grade under his belt for an actual diagnosis.
I took him back for re-testing and he was in fact diagnosed clinically with this learning disorder.  The doctor reviewed her testing from last year and could see that he did improve with all his interventions from the past year, but it's not closing the gap (he is at a 1st grade level in writing/spelling and almost 4th grade level for reading - massive disconnect for someone with an average IQ).

Jax struggles with thought-to-paper, which is similar to apraxia in that he knows what he wants to write, but he just can't organize a thought to do it. Nor can he even copy a word that's in front of him if he has to arrange it into a sentence.
It's a very complicated disorder, and slightly different for everyone, but our first inclination that something wasn't right, was his refusal to write for a long time and he would break down with spelling words in 1st grade. He had to be removed from spelling up until this year and even now, it's extremely obvious he memorizes the spelling without any actual mechanics of how or why it's spelled that way. Like... if you ask him how to spell 'chair', he'll say, "c-l-r". And we'll say, "chaaair" slowly for him to hear some of the letters. He says, "c-r-l". Nope. We tell him how to spell it, he memorizes it, but doesn't actual sound out the word in his head to recall letter sounds. And oddly, he reads just fine - see the disconnect?

So what does this mean??
The doctor had a long discussion with me  about how he's covered well currently with interventions in elementary school, but accommodations in middle school, high school and hopefully college will be extremely necessary. She said he continues to score deep into the charts showing that his brain isn't processing properly given his IQ and reading skills. Jax will need to get his speech articulation a bit more under control (he still sounds like a Boston gangsta with his 'r' pronunciation) so he can start dictating his thoughts on a computer for writing, and then going back and doing the punctuation himself. Other things like getting the lecture notes from the teacher/professor when he gets to that point. His ability to listen, process, type and focus is probably not going to be a reality. We need to seek out a tutor for the summer months to give him the best chance academically. We will have to find a way to make it not seem like a punishment for the disorder.

This news isn't shocking to us since he's been 'treated' for it at school in special ed for a few years (and the doctor put it on our radar last year) but it's still a hard pill to swallow when it's in front of you and going into official reports. I've been down about it all day, only because it's official and I know this will be with him for life. I do however feel, like this is possibly the last testing/diagnosis possibility for him for the foreseeable future -which is a welcomed break.

I spoke to Jax about it and so far he's okay with understanding it a little bit. He knows he struggles greatly with it and I don't want him to feel dumb or inadequate compared to peers. I'm glad we're able to identify this for him and get him all the tools he needs to succeed. I told him that all we want from him is his best effort always.

I just have to remember that he's healthy and happy, and we're working hard every day to keep it that way.

Getting some math homework done waiting in the lab to get a blood draw. Just another Monday!

Sometimes Brady just really wants broccoli with his pancakes...

Jax looking like an old man reading a Sports Illustrated during a break at the neuropsychologist's office. 

A great representation of their different souls...

Uncle Adam got married in Februrary

Jax has some magic skills...

Wednesday, January 24, 2018

It's Happening. The Trial Begins!

It has taken 9.5 yrs to get to this point, but we are HERE. I had Jax at Childrens Hospital on Tuesday for his yearly check in with the Rehab Clinic for his muscles, so we stopped in the Nutrition Clinic for a weight check since we cut his tube-feedings in half last November.

He gained (1.5 lb) since then with less feeds AND had the flu in there, so I thought it was worth asking for a trial with no tube. So I emailed the team and anxiously awaited their response. They responded today that we can do a 7 week trial of no tube-feeding, but Jax has to drink his carnation-milk before bed, which equals half of the overnight feed he's getting now. That means he needs to get in 30oz of his carnation milk every day, and hopefully with less food overnight, his hunger will get better to EAT more food during the day.

This is a challenge. I'm on him all day every day about food. His hunger and volume has gotten better since reducing his overnight feed, and even his feeding therapist agrees. But he still struggles. I'm hoping this trial will give him a sense of what he needs to do. He's taking a lot more responsibility this year with his age.

We'll need to find a way to not feel total defeat or devastation if on March 19, they say we need to go back to using the tube. We've never had a trial like this before and the weight of the trial feels slightly overwhelming, but hey... we've got to try!

3rd grade b-ball studs

I'd like to point out that I said NOTHING watching Jax wipe his face between shots... 

Teacher in-service day = pajamas and Christmas gift usage.

Some cool hats from Uncle Adam and Aunt D