Friday, June 23, 2017

Breaking Up is Hard to Do

Some moons have aligned, and I was able to finally track down a home health care company who actually bills out of Wisconsin and carries the new tube-feeding food for Jax. The original company who I found was willing to supply all the food, supplies and equipment, but they billed outside of the state, so it was out-of-network for our health insurance. They were helpful and suggested a company for me to try. After finding out they don't carry the food, they realized they did have a new division for enteral feeding that I was sent to. Well guess what... this 'division' carried the food, billed out of WI and also accepted only one insurer, which happened to be OURS (thanks Cigna!). I told the lady on the phone, "WAIT a minute... are you telling me that an insurance-moon aligned for me???" She thought that was pretty funny.

So, I've been handing the transfer of powers for all of Jax's supplies, equipment and food this past week and I had to make the HORRIBLE phone call to the nurse I work with each month at our current home health care company. She was so disappointed to have us leave, but understood that I really wanted this better product for Jax. She said she was going to definitely have a meeting with upper management, but for the time being, the product wasn't profitable enough for them to carry it. I really hope that these products become more available to consumers as time goes on.
I admit, it was harder than I thought to call and cancel our account and set up a pick-up of our things. I've been using this company for years and even the driver who came to pick up the items was bummed out today. It's interesting how close you get to all the moving parts of your child's care team!

The boys just finished up a week of VBS (Vacation Bible School) and they had a blast. The theme this year was 'striking out hunger' with a baseball twist. Their efforts this summer was our own community (last year it was sending kids to school in El Salvador) and they feel so much pride seeing their work go to help those around us. Much like the soup kitchen they've been going to for a few years.
They raised over $500 for the community garden in the city of Milwaukee, and they all visited it with some yoga in the vegetation as well :) They collected over 600 items for the Waukesha Food Pantry and also made over 600 sandwiches for a shelter. I'm so happy to see that they get joy out of these activities.

I'm also happy to have them participate in servanthood like this as we prepare for a family vacation this weekend. We'll be attending the Mass Mutual Leaders Conference in Washington D.C., which the boys are beyond excited for. But with any over the top fun experience like that, I like to have them remember how fortunate they are to have these times.

Two weeks of summer in the books. Life is good!

We love corn!

Bubb made it to the top!

Testing Jaxon's skillzzz

Papa and the boys on Father's Day. Papa had a knee replaced!


The food is here!

I need the new med supply cabinet to be done NOW! (Not starting until Sept, so it sits on the kitchen floor)

Day 3 of their collections

Big B and his crew at the gardens

Sunday, June 11, 2017

Seasons of change

My oh my, too much time has gone by to update details, so I'll do an overview!

Jason and I had a nice trip to the U.K. and the boys did really well while we were gone. We had a countdown to the end of school, and they are officially done with 2nd grade.

I've been gearing up for summer to start. We did our annual first-day-book-run and we are loaded up on our next Harry Potter novel (#3!) and a few other books that the boys are reading to brush up on their past-president knowledge. We are officially preparing to go to Washington D.C. in two weeks!

Poor Brady came home early from school the second-to-last day of school saying he puked outside when they were doing their olympics. UGH. He was fine by that night, so everyone was fine with him going to the last day of school. He was also fine at the picnic I attended, but by dinner time he was exhausted and started a low fever. Again, fine the next day, but slightly feverish at bedtime again. I was praying Jax wouldn't catch it, and going into the next week, he hasn't so far. Now Big B has some light cold symptoms. This kid. But, he's bouncing off the walls and doing fine.

I've done some thinking, well a lot of thinking about Jax and this whole feeding-struggle we still have. I say 'we' because it affects the whole family of course. I just couldn't bare to just 'add more food' to his pump at night and stay on this roller coaster. I've decided to change his nightly feed to a plant-based food to see if the change helps at all. He needs more of it compared to the formula, but I'm wondering if it's lighter in his gut (or digests faster). It can only be HEALTHIER for him. But of course our supply company doesn't carry it, so I did some research and found a supplier in Ohio who has a shipment facility in our area. I'm currently waiting to hear back from them if insurance has cleared it and to start up with them. I actually waited 9 days to call them back (trying to be patient) and they said they never received the order and Rx from our hospital. I almost cried. I left a message last Friday (because the nurse was off til Monday, ....), so now I await a call tomorrow.
a friend of mine was able to send me some cases that she had leftover from her own son, so Jax has been using the product for the past 11 days and doing great with it. I definitely want him on this product! So wish me luck to get this through. I looked into just buying it if insurance doesn't cover it and it's $200 just for 12 days, so in addition to the cost we spend for what Jax drinks, we'd be in for over $700+ each month, which is just insane. SO, please keep your fingers CROSSED!

We really only have this week of free-time before we have a busy schedule for the next month. The boys have VBS (Vacation Bible School) in a week, then we go to D.C., then we leave for our annual trip to the Garber cottage. FUN stuff!!

I have the boys in 'swim camp' when we get back in July. Unfortunately even after months of private swim lessons, Jax is still only in level 1 for group swim, but oh well. They will go for a half hour every day for 2 weeks. I'm hoping the consistency will be more helpful. I'd love to have them do the camp for 6 straight weeks, but we'll see how the first two weeks go.

The boys are still going strong with baseball, and Jax has changed to lunch time sessions for feeding therapy with summer here. He will also see his physical therapist for a stretching session tomorrow to get ready for our D.C. trip. I think we'll get a lecture because we haven't been stretching this kid out, ugh - these things make me feel so guilty! I've picked up some more part time work at home helping out another agent in Jay's company, which should still fit in decent with our summer schedule. I'll of course be so much more productive by the end of the season, but change is always good!

Well, summer is here, I hope it's a GREAT one!

2nd grade is complete!

Brady telling me he felt 'fine'.

The Braves team in between games during a long hot day!

Memorial Day fun with some friends

Memorial Day weekend fun with the Bonins

It's cute when I see a neighbor giving a golf lesson

Liquid GOLD

Last day of school picnic

Bat and ball from the Brewers for everyone

The boys with Brady's teacher

The boys with Jax's teacher

Jax with his special ed teacher

Come on.. this is just funny

First day of summer tradition at the bookstore

Awesome first day
Annual SJV festival - lucky to have older neighbor kids to take them on rides!

Brady living the dream at the gym pool on Sunday

Awesome Sunday night dinner and hang out at the new mall across the street!

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.


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)