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

Saturday, January 6, 2018

Hello 2018! Boo for the flu tho, blech!

Hello 2018!
We had a pretty great year of health and development for these kiddos. We had a super busy December that I'm still trying to recover from!

The boys played Joseph and a shepherd in the Nativity Christmas play, which was beyond cute. This was their last year for the play, so I soaked it up. We had Christmas celebrations back 'home' a few hours north a couple different times, so that was some driving back-and-forth on 3 different occassions. We had a really nice Christmas eve with cookie baking and a viewing of Home Alone, but then back up 'home' Christmas day. My brother and his fiancee' came from Portland Oregon for the week, while we also had a get together with friends and godchildren, a neighborhood party and then it was New Years! Thankfully we stayed in!

We've been looking for someone to fill the role of vacation-nanny for us when we're away on trips, or if gone overnight. The ladies we've had over the years have all gone on to get married and have children. Finding the dependability and comfort in someone else was giving me anxiety! My friend uses with great results, so I gave it a try. We got SO lucky. A woman who recently retired as a college professor was looking for a couple families to care for on an as-needed basis. Her daughters moved out of state and she wanted to enjoy retirement, but still wanted to be needed. She is WONDERFUL. The boys liked her and we really enjoyed our time with her. Her references were very impressive and she's local... I'm so happy we all found each other! She had researched g-tubes and injections before coming as well... pretty cool. She's not intimidated with his medical care at all, (siiiiigh of relief!)

Jax has been doing really well with his feeding and the lowered amount of his tube feeding. I think he's gaining weight, so I'm optimistic about his weigh-in at the hospital in a couple weeks. I have lofty goals/requests to the docs if he does show a nice gain. I'm definitely getting my hopes up!
I had to change the product he uses for his milk drink during the day. I've finally just realized I can mix chocolate Carnation powder with whole milk to provide the calories and vitamins. Since his diet is better as well, I stopped fighting it. It turns out he loves it. I'll call that a win.

I'm hoping this sudden bout of the FLU with Jax doesn't mess up the weight gain.. yes, he has influenza A...boooo. He had started a cold on Thursday so I had the school give him his inhaler, and he even went to basketball practice later that evening. That night I realized he was a little warm during our bedtime hug. He was just under 100, so I was thinking, "hmmm". By the morning he was definitely down for the count and his temp spiked to over 102. His coughing wouldn't get better with his breathing treatment so I popped into his doc to check his lungs with his asthma that afternoon. The doc said he was doing really well, but with his fever (he rarely ever gets a fever, it's been years) and his achey legs, she wanted to swab him for the flu so we could treat him with Tamiflu and steroids just in case with his history.
Sure enough, it came back FAST with flu-A. The doc thinks he doing well because he had the flu shot, but who knows. Flu A is supposed to be the worst of the flus, so I'm slightly shocked how well he's doing.
He's continued to eat small meals and take fluids by mouth. The fever is relentless, but his lungs are doing well. We're on day 2 and I hope it stays the course and doesn't get worse - wish us luck! It's been 3 years exactly since such an illness has hit, but I can honestly say he is such a stronger kid this time around!

Big B on the court

Santa and his elf ready for the holidays

My fabulous niece Marley

The Bonin & Berger Bunch kiddos

Christmas program

A common scene at our house over a 10 day period

A couple of uncles and Jay hanging at a party

Jason and Uncle Adam showing the boys some cribbage skills at a downtown lunch outting

Brady modeling some Harry Potter pjs from Nana

 A pj-NYE night!

Christmas morning scene

Grandma Laura with the elves

Jax still wore that elf hat to bed most of the season

This little video cracks me up. It's Jax trying to make some free throws. His reaction at the end is my favorite. 

You're welcome.

Jax got nervous and then realized Santa's hand was on his tube. He asked Santa to make this his year to be done with the tube... I'm not crying, YOU'RE crying!

Harley Museum fun with Uncle Adam and Aunt D

BINGO fun with the Bonin kids!

Holiday taco party with the Spielbauers!

Jax and these turkey legs from Uncle Dave's house. Funny how those are at MY house now!

Brady runs a tight ship.
A cribbage playing motley crew with Adam and Danya visiting!