Wednesday, May 10, 2017

Small Step Back

Jason and I are on our way out of the country, traveling to the U.K., partly sponsored by his company. I wanted to give a quick update of how our week has been. And other than lots of COLD baseball, and both boys starting a cold, it's basically a medical update.

Jax had his 6 month checkup with his GI specialist and I wasn't looking forward to it knowing Jax's weight wasn't great. We also had made the plan last fall with the GI doc to try and increase the speed of Jax's feeding pump at night. The thought was to get it really fast so we could just bolus feed him half his formula at bedtime, and then again before Jay and I went to bed. This may help Jax be able to be free of the pump at night and to work toward getting out of diapers then. We went too fast with the pump, and he was getting "dumping syndrome" and having diarrhea at school the next day.
So, we pulled way back and I've been slowly but surely increasing only 2-3ml's every couple of days. I've got him up to 170mls/hr (that's about 5.5 oz each hour) so he's on the pump for about 3 hrs. If I'm up past 11pm, I remove him from the pump so he can wake up without it. But most nights I don't make it that late, so he just brings me the machine (in a backpack) in the morning to be disconnected.
Little by little I guess...

Well, that goal we've been working toward just got further away. Jax's height came in GREAT at 50", which is 25% on the charts! The not-so-great news is that he's only 49lbs (with all his clothes on), which is only 5%. His BMI is going down steadily, and it's really upsetting because this is the time of year he historically GAINS weight and then plateaus each summer. Ugh.

We took a step backward, and I didn't realize it would upset me so much. We have to add more formula at night and more powder to the formula he drinks during the day (which is already 24oz daily).
I told the doctor that Brady was about the same height and maybe only a couple pounds more. The doc said that it's not unhealthy to be naturally small, and of course we need to always be mindful to push calories on a kid like Brady, but Brady is at this height and weight without any medical intervention. If Brady was given nightly growth hormone injections and tube feedings, he'd be substantially bigger. The problem here, is that Jax has received these interventions his entire life and is only at this size. We're not leaving a lot of wiggle room if he gets really sick again.

Yes, this all makes sense when organized like that.

Then the doctor told me that Jax's body will always WANT to be small. With the way he was born so small for gestation and not knowing the extent of the HIE (his brain injury from lack of oxygen) on his growth, he will always fight to be big enough to be healthy. I kind of stared at him while he was saying these words... then he said it. "Jax needs these interventions to thrive, that's just how it will be."

I didn't have the heart, or the nerve, to ask him to elaborate. What does 'will be' mean? I know he can't take growth hormone past puberty, so is he talking about the tube?
...
Do you see where my thoughts go at night?

So, the dietician came back in to discuss recipe changes for his tube feedings, etc. She looked at me and said, "what do you think of this?"...
It happened.
I couldn't stop the tears. I had to turn from Jax (who was thankfully playing baseball on his iPad) and silently get thru that moment with the dietician. She decided to email me the info instead of handing it to me and instead to give my hand some tissue and a squeeze. I just wanted to teleport out of there asap.

ugh.

My anxiety is really high this week, so I'm sure that is part of it. I get edgy when planning to leave the boys and be far away. There's so many checklists, but thankfully they're in great hands and they LOVE their sitter. The independence is good for them. But the schedule change with all the extra baseball in the cold weather didn't help, or the boys starting colds, or struggling through homework with Jax while they prepare for MAPS testing at school. I've just had a tough week mentally. We all have 'em, right?

B on the left, J on the right


Big B pitching during a weeknight league game.

Big B batting during a tournament Braves game (I couldn't get a good pic of Jax because he's a lefty and I was too cold to run to the other side for a pic! Next time...)

I thought this was cute. Jason was running late from a meeting so he was out on the field coaching in a full suit (watching Brady pitch here)

This CRACKS me up! Happy Birthday Jason! (Jax said he wrote "bat and ball Jax" in the corner - he tries)

Thursday, May 4, 2017

MAY DAY, it's baseball season!

Only Jax.
He came home from school last week telling me that he his tooth was hurting and he told his teacher (who told him to tell me). Well my gosh, he showed me where it hurt and I gasped looking at what looked like a tooth coming out of his gum line above his tooth. I called the dentist the next morning and the office said that if it's causing pain and the baby tooth below it isn't loose at all, that he should be checked out.
I was hoping the baby tooth would show signs of loosening up over the 5 day wait to see the dentist. Once a tooth is a tiny bit wiggly, Jax will have that thing out the same day, but the tooth never became loose. We headed to the dentist this morning and Jax, of course, told the dentist he had no pain there and he was fine. ((EYE ROLL))
So they took an X-Ray since he was due for it anyway at his next checkup in July. All looked fine and in fact, that tooth isn't anywhere near coming in. The dentist thinks that's discoloration of his gumline right there while things are all moving around and also possibly a sore. Right next to this area, on top of his front tooth was an obvious flared ulcer on the gumline. OMG. Now of course I'm happy to know this is no dental emergency, but really... canker sores? The dentist asked if he's been trying new foods (knowing his food-history) and I said he has been trying out tangerines a week ago, and even ate some of a raspberry.
I blame Jason.
:)
The dentist said it can be hereditary and there's so many reasons for flare ups. Stress, lack of sleep, and even WEATHER, but mostly acidic foods. Jason has chronic canker sores and Brady has them off and on enough to be right in Jason's foot steps. Jason's dentist has even mentioned how many he has and has him taking the supplement Lysine to try and help them.

So that's all real neat.

Baseball season is officially in full swing. We had the first game canceled due to rain (which was constant here for awhile and getting everyone down in the dumps!), but we forged on during the week. The boys are loving it, but I just can't wait for the weather to warm up a little more! So, our schedule picks up a lot this month since the boys have league games during the week and then the select team plays in tournaments two weekends a month. I've been creative with still fitting in feeding therapy and their private swim (which I'm hoping has them prepared enough for group-lessons this summer).
I gotta say, watching them play is pretty darn cute. Their birthday cut off puts them in a league up (kid-pitch) so in addition to the youngest, you can bet they're some of the SMALLEST, but they're holding their own so far. So stinking cute.

Now tell me this doesn't look like a tooth breaking thru!

They were so excited for baseball to start that they wore their league t-shirts to school.

Wednesday, April 19, 2017

RIP Lucy

Spring is here and it's been great to get out and enjoy the warmer weather, the Easter weekend and spring break.

It felt like so much had been renewing until we came face-to-face with our first pet death. Our guinea pig Lucy wasn't moving one afternoon and I knew something was wrong. I picked her up and it was obvious something was wrong. Jason immediately researched ideas of what to do and most information said that once a piggy stops moving/eating/drinking, it's usually the last phase of an illness. Most piggies hide illness because they're predatory pets. We gave her extra love and even put food and water right next to her, just in case.

I had an event to attend that evening, and by the time I sat down for dinner, Jason texted me that Lucy had already passed away. He took the kids out of the house for dinner (since info online said to leave the pet in the cage for a few hours for the living piggy to have its time with it). The kids were very upset when they came home to realize it was for real. Poor Jason dealt with it all by himself.
The boys decorated her grave site with the neighbor kids after church the next morning, which seemed to help. They were pretty upset for a few days, so we had a lot of tearful bedtime talks about it. I can't even imagine what it must be like for families to lose cats or dogs that have been around MUCH longer.
Our piggy Piper was definitely grieving all week. She wasn't running around and barely eating. I cleaned everything from top to bottom and we've been sure to take Piper out each day to spend time with her. The boys even put a stuffed animal pig in her cage so there was the presence of something else in there with her.
Piper has seemed to perk up in the last few days and she even popcorned for me this morning when I gave her hay (popcorn is a jumping movement that piggies make when they're excited).

We thought about getting another cage mate for Piper, but we're not sure. She's our feisty piggy who is pretty dominate. I think we'd need to get another adult female, rather than a baby. We peeked at the available piggies at the Milwaukee Humane Society, and there were only males. We'll check out the Elmbrook site and keep our eyes open if there's a good fit for rescuing another piggy or not. If Lucy was the surviving piggy, she'd definitely need another cage mate, but Piper may not do well, so we shall see.

In other news, we were able to get a bunch of Jax's followup appointments done during spring break - we're so fun, aren't we?? But really, we just don't want to keep missing school, so it's best to get them done on days off like that.
Jax saw his asthma specialist and we lowered his daily inhaler dosage and we're going to try and take away Singulair in a month to see how he does. We are trying to get him down to the least amount of daily meds as possible! So that was a great appointment (until the doc asked about our piggies).
Then Jax had his checkup with the Rehab Clinic for his CP. They were SO pleased to have a full report from his physical therapy and to see he had the inserts in his shoes. The plan going forward is to checkin for PT-needs and follow up with the Rehab Clinic every 6 months. They want him to have a PT session the week before any big trips, so we have one set up the week before we go to Washington DC in June, and to use the Kinesio Tape on his legs.
We took a train down to Chicago for a quick day away to see some museums. Jax made it through it all for the first time in his life, so it's definitely helped!!

The boys are back at school and we are in full swing of spring clean for the house with the yard, windows and all that fun stuff :) OH, and baseball... the 3 month chaos is beginning :)


The Field Museum





The only Easter day picture that I got!

Brady and Piper


The Bonins at their birthday party

Sunday school antics

Appointments, grrrr

Train ride excitment



This kid.

The boys took the Alexa speaker and found Queens greatest hits. They threw a concert for their stuffed animals. The floor was covered...

A birthday party during spring break

Jax looking old and very pleased with himself after telling me I was his pretty honey bunny after I told him to eat his food.

Parent Fail :)

Brady looking fly at the bus stop

Jax wanted in on the jam.



Lucy's resting place


Monday, March 27, 2017

Bus woes

We're into the last week of March.

The boy's IEP meetings went well. Brady is 80% intelligible to an unknown listener and Jax is at 90%. They basically sound like Bostonians with a 'wicked eastern accent'. They're definitely progressing!

Jax's IEP is still pretty intense with a lot of intervention now that writing is becoming more and more extensive. Even his test taking has to have accommodations. We didn't realize he was taking all his state testing separately with his special ed teacher prompting him through to stay on task and to help with his writing.

His focus and attention is probably at the same level it's been, but the expectations are picking up, so that's why his needs for accommodations seems to be getting bigger. He'll also need to keep an aide at lunch and continue with OT, speech, writing, spelling and class/testing accommodations. The team is great and make the process pretty painless for us since they're so involved and give all the suggestions. When we reviewed Jax's new medical diagnoses this year to be added to the document, I was able to get through it without choking up, so I feel like my acceptance-processing has come pretty far. But one of his therapists teared up, so we almost made it through :) But of course, his happy and funny spirit make it easier to move on from bumming too long.

We had a little bit of a bus-issue last week. Jax came off the bus with a red face, which was a clue that something upset him. Apparently, there were two boys (4th grader and a 1st grader) playing with a ball, and Jax tried to intercept it since balls aren't allowed. The 4th grader shoved him face first to the floor of the bus and then both the boys proceeded to kick him while he was down. Brady ran to the driver, who then pulled over to break it up. After Jax took his hat off, I could see a red bump with skid marks. Ohhhhh I was so upset. They told me that it was a boy who lived close by us... I immediately contacted Jay and wanted him to come home and go over to the house with me to talk to the parents. Thankfully, he was in a meeting, so he couldn't come home and deal with my insanity.

I emailed the principal and Jax's teacher giving the information that the boys gave me, including a picture of Jax's head. Thankfully, the principal took complete care of it and the bus driver made reports with details as well. Jason spoke to the bus driver in the morning who profusely apologized, but obviously it wasn't her fault.

In the end, the parents of the boys met with the principal at school, and the 4th grader was suspended from the bus (I'm not sure how long, but he hasn't been on there since). His father - who I found out is a doctor, and was upset by the photo knowing how badly a child could be hurt in that situation -  wanted his son to personally apologize to Jax with the principal, which happened a few days ago.
I found it interesting that the principal told me that after the 4th grader apologized, Jax said, "that's ok". The principal intervened and said "No, Jax it's not ok. It's never ok to be attacked. You can say that you accept the apology, but not that it's ok".
Dang... she has wisdom. Our principal is retiring after 51 years in the district this spring, and she'll be MISSED!



A visit from Nana and a movie/pancake night

Bucks suite with some clients

Jax and Brady doing a birthday shout out to the Bonin twins

Brady and I practicing cursive during a bagel shop stop.

St Pats day fun.

Found these tiny things during a closet clean out!

My fish during weekly swim lessons.

The bus incident bump.

Beauty and the Beast - was good!

Dude-central during March Madness in our house.

Not fun. A skin biopsy on my nose. Good news, it was negative - whew! Sunblock... wear it.

Sunday, March 12, 2017

Wrapping up a sport season and some illness!

We wrapped up the basketball season, got hit with some viruses, and had some fun!
I've decided that no matter what time of year it is, we're busy busy. But I certainly don't miss the sicky times that haunts everything.

The boys were able to go onto the court at a Bucks game and stand with the players during the anthem as part of their basketball league. That was a fun night for them, although it ended up being WAY too late for Jax. He handle 9pm, and even 10pm, but 11pm... I just wait for his system to drop.

Sure enough, Jax started a slight runny nose with a cough that would.not.quit. After two nights of being up with him, his pulse ox suddenly showing me numbers that indicated he wasn't keeping up anymore. His pediatrician didn't have openings that day until at the end of the day, so I ran Jax into an urgent care. Which had a 2 hour wait, so then I ran him to another pediatric urgent care since I didn't want him sitting in a waiting room around other germs (and I knew his issue was really asthma and not some infection).

We were able to get in right away at my second stop and the doc confirmed that there was no movement in his lungs, so they gave him a breathing treatment of a different type of albuterol (starts with an X). They were able to confirm the absence of pneumonia (which I told them wasn't on my radar since he wasn't fevering) but he wasn't holding his own with his lungs for sure. He was put on prednisone for a week and we saw a difference right away. I do NOT miss that runaround, so I'm thankful that this scene doesn't play out often at all anymore.

The bummer news is that this doc had me go back UP to his higher dose of daily preventative, which we were hoping to continue coming down on. Jax has a followup with his asthma specialist in a few weeks, so it will be interesting to see what he thinks about it all. The good news is that there was no hospitalization, no ER and no emergency. But I was still exhausted and ended up slightly frazzled. I swear I get PTSD triggers sometimes, because my anxiety flies randomly over these things.

Jax also saw his Endocrinologist last week for his 6 month checkup. He's growing nicely, and from the look of the curve, it looked like he was around 15% on the height chart! He's a whopping 49.5", but at a mere 48lbs, which is like, 5% for weight... blah. Gotta get that weight going, but with a small increase in his hGH injections, it may help his weight a bit too. Jax sees his GI/dietician team in mid-May, so I'm going to swing him by for a weight check and dietician call when we're at the hospital in April for another appointment. I tried to get him in after his endocrine-appointment last week, but their office was closed by the time we headed over there. I think it's just time to go back to stuffing extra calories again since I'd prefer to not add more formula to his tube-feeding.

We had some cute elementary school things happen. The boys had their 2nd grade musical concert, their listening conferences where they present all the things they've been working on in school, and we're getting ready for both of their IEP meetings coming up in the next two weeks. Making plans for third grade... wow, where does the time go?

Jax's listening conference

Brady's listening conference


On the court during the anthem during a Buck's game


Last basketball game



Jay's hair got so long, that I clipped it up during some homework! He did NOT like that...

Doing some hamstring stretches while waiting for the bus




Brady at Sunday baseball practice

Brady helped make a cake!

Brady loving his soup during our dinner date (during Jax's feeding therapy)

I don't miss these scenes!


Building altars in Sunday school - boy team



Jax doing his duet