Monday, September 29, 2014

Crazy Days

Well... we are just plum-tired out from all the activities over the past week!
Jason and I celebrated our 7th wedding anniversary, and I'm certain the kids still don't understand what that means! Jason knows I love cake, so he brought home a small cake, and since it looked like a birthday cake, the boys INSISTED we blow out candles, but then they decided THEY wanted to blow them out. Hey, in the end I get cake, so everyone wins.

We've started Jax on his PediaSmart over the past week. I'm sending a thermos full of it each day, so he now gets it at school during the day. He gets one can of Pediasure through his tube at night mixed with the better stuff. I still have a case of the Pediasure left and am in the process of trying to get PediaSmart covered by insurance for the tube-feedings. And by 'covered' I mean a %. We'll always have to buy what he drinks by mouth during the day, but it would be nice to have SOME covered that goes through the tube at night (which is a medical-need).
I spoke to Jax's dietician last week and she agreed 100% to make the switch given his attention/focus/excited issues at school - and it's just HEALTHIER. She's also making me a specific recipe on how to mix the powder to create the needed calorie-density for the tube-feedings. She has to submit an Rx and a letter of explanation as to why he should switch. Again... it comes down to MONEY for insurance and medical supply companies - how silly sometimes.
My rep at the medical supply company told me to keep fighting because she thinks we are in the middle of real change for products like this and hopefully in the near future, the natural (aka - healthier) food products will be the new normal and first to be Rx'd and distributed.

If insurance doesn't accept our change, we'll just have to pay outright for all of it. It's just too important not to. But I'll keep fighting for it!

We had quite a busy last few days. I picked the boys up from school early on Friday to attend a family wedding reception in Appleton (2 hour drive). The boys danced their little booties off. Brady actually enjoys dance moves, where Jax kind of runs in circles and bounces off people. Knowing it was well past their bedtime, we put them in their pj's and they slept the entire way home that night.

We were up early and on the road again Saturday morning to Madison for the boy's first Badger game! They loved it! Jay had some tailgate tickets through his company, and our neighbors who have season tickets met up with us. The boys thought Camp Randall was pretty cool. We're hoping to bring them to a Packer game next year, so this was a good stepping stone for them!

My mom came to visit that night, so the boys had a day full of Nana on Sunday. They did crafts, board games, Legos, books and homework with her. We had a nice day out to lunch and to the Lego store for the boys to use up their Lego giftcards from their birthday - great day for them!

Jax started a cough on Saturday night, so that's been kind of a bummer, but his pulse ox stats and energy are good, so we're just supporting with nebulizer treatements. I sent him to school today and called in directions for his inhaler every 4 hours. I'm currently waiting for the nurse from the doc's office to call back stating if it's ok or not if we just continue as we are, or if I should run him in for a quick lung-check (he has silent wheezing/asthma that I can't ever hear). I'd like to keep him IN school and OUT of the doc's office as much as possible, but we'll see what they say. It's so weird to hear your asthmatic kid 'cough' after treatments, even though sometimes it might just be ok...

This is what a wedding anniversary with 6 yr olds looks like!

After they were in bed, we lit candles on the patio and had some wine and cake outside! Our neighbors stopped over for a sip as well!

Brady INSISTS on helping to cook everything now. So, I let him at it with an egg...

That landed on the floor...

After dinner screen-time cuddles.

I'm teaching Brady how to be safe around the stove and oven. So far he's doing great and is becoming my 'stirrer'. Jax isn't as interested, and isn't ready for stove-time either - we'll just leave it at that!
The boys loved the cake-pops at the wedding!

With Nana and Papa

When you have small children on your shoulders, you get free t-shirts thrown at you when tailgating!

The neighbors joined us for the tailgate party! The boys were so happy.

Jason watching the game VERY intently.

The boys and I having fun in the stands. They loved how the students do the WAVE and JUMP AROUND after the 3rd quarter.

Badger Love.

Building Lego People very carefully with Nana.

I woke up Sunday morning to see crafts made...

What's this? Well, a photo of Jax finishing his first ENTIRE Oreo cookie (Mega Stuffed)! He said his tummy hurt a little after, but he kept it down and it's a WIN!

Friday, September 19, 2014

PROMPT therapy complete and a new experiment in the works...

Brady has completed his 'summer PROMPT therapy' this week. He had 25 sessions from his grant, and it's crazy how quickly that goes! One of the therapists made a video of him yesterday, which I'm hoping I'll get a copy of. I'll post it here once I get it so you all can see what progress he's made since June. He's of course, still difficult to understand in unknown context at times, but his approximations are definitely expanding. He is using the letter S which is much more helpful - although he says "sh", we still know what he's trying to say.
I wish we could keep him in this specialized therapy all year, but even the therapists noted that he was getting very tired during his 'after school' sessions. He has therapy each day at school, and he's gone for about 8.5 hrs each day, so to add on an hour of extra speech afterward was getting tough for him. We're so proud of him. We'll definitely be saving up to put him in the program ourselves next summer, while working with him on his 'homework' from the specialized therapists.

Jax has been a bit... rambunctious lately. He's kind of been wound up and he's been getting time outs much more often than he ever has. He has a hard time not wearing his feelings on his sleeve for every request lately. He's been great at school, but before and after school he needs to find a way to pull it together a bit more. We've been having to request multiple times in the morning to get him to the next step in the process to get ready. Although, having to prompt him through his meal isn't all too new.

After school he just wants to go play, which is fine for a little bit, but making him stop to come eat, whew. Any backtalk at all, even a simple "I'm too busy!" or "You're making me have a bad day!" or our favorite "WAHH!" is buying him immediate time outs. We realized that even giving him an inch has created a little bit of chaos, and we won't tolerate disrespect.
The other night, I had to give him the promise of a time out when he comes home from school the the next day since he wouldn't stop goofing around (and being very loud) when I was trying to tuck him in. Sure enough, he got off the bus the next day and proclaimed that instead of a time out, he preferred a short 5 minute nap. That kid cracks me up! He is already trying to make sure I know that he's going up in his room on HIS terms - what a stinker!

So, I have a little theory that we're going to test out over the next couple months and see if it helps at all. I know the boys have different personalities, so that may the only thing at play here, but I sat thinking about WHY does Jax have more problems with focus (requiring full on special-ed intervention) and Brady doesn't? I know... many ID twins have different issues, and Jax clearly had a different medical beginning and we were warned of these possible issues, but I really want to at least try every idea to know I 'tried'.

The biggest difference between the boys is food. When researching what's inside PEDIASURE, which makes up more than 75% of Jaxon's diet - it's gross. There are so many chemicals and fake things, although it's been our only option in order to keep him off his feeding tube during the day. So while I hate what's in it, I thank it for some normalcy while Jax learns to eat. But... it's 2014, there MUST be options. I found Pediasmart which is the only organic (not that I required organic) fully nutritional drink that compares to Pediasure's nutrition. So I've ordered a few canisters to try it out - hopefully Jax will be ok with the taste.

The only issue is, it's not in a ready-made shelf stable container, which poses a problem for school. I keep Pediasure bottles at school for Jax to drink one a day while he's there.
I've found other ready-to-drink nutrition drinks for Jax, but they don't have the same calorie/nutrition as Pediasure. So humm, I'm trying to figure this out! Maybe we'll just have to make him a cup and send in a cooler pack each morning to use at lunch and snack.

The other issue is that Jax gets high calorie (medical grade) Pediasure at night thru his tube - 16oz. HUH, how do I replace that? Insurance actually covers a portion of that, which has been nice. I know there's a great new product of blended food that's shelf stable to put through the tube, but oh my goodness, the cost... (being a parent and making these decisions are hard). Is the experiment pointless if I change his day-diet but still give him 16oz of pediasure at night through the tube??

I'd just like to see if it helps at all seeing how we truly believe "you get out what you put into a child", and one child of ours eats probably about 75% healthy, or at least non-processed/fake, while the other is maybe 25% and he's the one who has attention/focus/excitement issues. Worth a shot??

Our kindergarten studs!

Their mom and dad! (I'm pretty sure if Jay let his crazy hair grow, he'd be a triplet to the boys)

Sunday football pizza and salad party in the basement - common scene about to repeat itself this fall.

Jay and I at Miller Park this week. His boss took him to batting practice for season ticket holders.

Up on the big screen.

Living the dream.

Jason and Mike.

Thursday, September 11, 2014

First Teacher Conferences

The boys are stilling loving school, and the bus, and their class pets and... yes, everything.

We had teacher 'listening conferences' last night. It's just a quick 15 minute check in with the teachers to discuss how the first 1-2 weeks have been going on the kid's ends at home and for the teacher to talk about how the child is adapting at school, along with anything else anyone wants to discuss.
The conferences went GREAT, we couldn't be happier. When we walked in the building we met up with Jax's special-ed teacher on the way into our meeting and the first thing out of her mouth, "Wow, those boys really stole our hearts already". We felt a sense of relief going into the meetings after hearing that.

Jax's teacher said he is so smart and extremely excited about EVERYTHING. We laughed and said we appreciated the 'smart' comment since he wasn't expected to be given all his preemie issues. All we heard about were 'learning disabilities' over and over. We know he needs to wrangle in his 'excitement' a little bit though. She mentioned that she definitely sees his issues with attaining to a project that requires him to sit and use a pencil. So they are definitely going to support that and hopefully it's a different story by the end of the year, but I'm SURE it's not the last we've heard of that.
She said he follows all directions and she's had no issues with his behavior. The special-ed teacher and speech therapist discussed his meal-time and how we need the phy-ed teacher to watch his walking/running/stance issues now that we took his braces off. He's had a lot of accidents lately and we want to make sure it's not from unsupported legs versus him looking everywhere but forward when walking.

Brady's teacher and speech therapist are so happy with how he's doing as well. The teacher said she had a lot of concerns for him prior to the start of school, but she's been pleasantly surprised by his willingness to socialize, raise his hand to answer and to repeatedly try to get people to understand him. She's had Apraxic-children in the past and she said he's the most outgoing she's ever had of them. We found that interesting since Brady tends to get really shy lately when people address him. She thinks he's comfortable and excited for school, so he tries so hard. Apparently there's only been a few times where she's called on him, and she couldn't figure out what his answer was. We'll filling out a worksheet every Sunday night outlining what we did over the weekend so the teacher and therapist and can have an easier discussion with Brady each Monday. I felt so bad since this past Monday, Brady tried telling everyone that he went mini-golfing and no one could understand him. I can't even begin to imagine his frustration. But we have a plan going forward so that doesn't happen as much anymore.
We discussed how his reading and writing will go given his speech disability, and I like the plan, but bummed to hear that writing will be harder than reading since children literally 'sound out loud' when writing at this age. We'll just have to cross that bridge when it comes.

We took the boys out to dinner for pasta for their great reviews. I hope it stays this way through the year - here's to hoping!

In other news, how do you all get your kids to REMEMBER their belongings? Brady already lost a jacket on the bus and Jax brought home the wrong sweatshirt. I see last year happening all over again. Brady lost his boots, gloves, hats and even a pair of snow pants last year! I've already started to stock up on gloves and snow pants. For some reason it's really hard to find some of these items after December around here.

Here are some photos from last weekend, it was gorgeous outside! I feel like it's gone already with the temps only in the 50s this week, ugh!

Could Jax BE any happier up there?

The boys being... boys.

Santina was all about Jay after her nap.

She kept standing by him and copying him, too cute!

Some kid-fun inside the family farm at the zoo.

Brady doing a mean 'duck-lip selfie' pose :)

Rachel and the dudes.

Time to feed some goats!

Safety first Brady!

My train-car-mates!

Jason overseeing his boy's getting fresh and clean.

Mini Golf Sunday!

A morning routine before school each day - I think this will be a common scene this year! The boys started a small cold. No big deal, but Jax just needs this support each morning and night so it STAYS no big deal.

Wednesday, September 3, 2014

And so it begins...

The boys are officially 'kindergarteners' and they're loving it.
The bus was late the first day, but on time the second day. I went back to school this morning since the first day wasn't a typical day for them given the fact the bus was late. I realized watching Jax get off the bus this morning that he has a VERY hard time carrying his backpack. I may have to get him a lighter one, but in the meantime, I'm trying to figure out ways to keep it light.
The boys REALLY want to have hot lunch at school versus bringing one, so it helped to not have a lunch in Jax's backpack, but I did pack his Pediasure.
I spoke to the teacher and then had a phone conversation later with the special needs department about bringing in a case tomorrow so Jax just has it there on hand. Whatever he doesn't drink at lunch, they'll have him drink after the afternoon recess. That really gives me some relief. His face is looking so gaunt to me lately, and I keep thinking about these long days for him. The therapist who called today for a quick update said Jax ate about half of a taco, some apple sauce and then half his Pediasure - which he had to finish the rest after recess.

I'd love to force Jax to only eat what I pack him so I can ensure he eats calorie-rich foods, but he is already upset at the suggestion. He wants to eats hot lunch so badly with Brady and the other kids. So, we'll let him do that for awhile and see how he does. I think the teachers already understand why I pack certain snack-choices for him - he needs every calorie!

I got the final word today that Mr Nick is approved by the district to visit Jax at lunch once a week. It should be helpful for some better skills when eating in a group like that. I just need to facilitate all of that when I come in with the Pediasure tomorrow.

Brady is doing well in class. The teacher told me today that she has been really impressed by how well she can actually understand his approximations. She said she has another child who has a profound speech issue as well without an iPad, so she plans to use Brady's iPad as an example for that child's upcoming IEP meeting. How great that Brady can somehow be helpful in another child's quality of school-life!

I've been looking forward to the end of each afternoon now to hear the boys gush about school. I hope they're always like this!

Pretty much the scene of our Labor Day Weekend cookouts, blah!

Our neighbor had planned to have the Badger game viewing outside, but we compromised!

Jax got some new slippers that he's pretty pumped about.

These would be the shoes that Jay and the boys just got. (siiiiigh)

Since the boys are such 'big boys' now, we did a toy-cleanout. It stinks to do, but feels oh-so-good once done!

The beautiful one-block walk to the bus stop. We'll see how beautiful this feels when temps drop!

Waiting for the bus.

The boys with the speech therapist and the special-needs director.

Jay helping Jax into his room.

Brady lined up for his room!

My and Brady's last official Friday-lunch-date.

Kickin' it for day TWO of school. Duck-lip Brady, lol!