Hope

Hope

Monday, October 20, 2014

First Missed Day of School

We had a sickie last week! Jaxon came home from school Thursday with a cough and runny nose. Apparently he told his teacher that he'd be missing the next day because his throat hurt too - that kid!

I had just gotten home from being gone overnight to a funeral to a pretty sick little guy. He was up all.night.long.coughing. And since he needs to have his pulse-ox checked when coughing like that, we were up too.

I kept him home on Friday and brought him to the doctor since the weekend was approaching, otherwise I think I would've waited one more day to see how he was. The doc said he sounded good, but he had tons of broken blood vessels around his eyes which indicated his non-stop coughing - she didn't like that. She was concerned a lower respiratory virus was going to blow up on him over the weekend, so we played it safe with him (LIVE AND LEARN) and gave him a small dose of Prednisolone over the next two days in addition to his around-the-clock nebulizer treatments. Coupled with Tylenol for the sore throat and it was like night and day for him that night - we all enjoyed some sleep.

Jax will see his asthma specialist in a couple weeks for his annual exam. I have a feeling the doctor will want him to remain on his stronger meds again this year. I'm not sure if we'll see a change with that anytime soon. Jax will never be the kid 'who grows out of asthma'. He has Chronic Lung Disease from undeveloped lungs at birth. His lungs are kinda junk forever - but at least he gets great care, which is all we can ask for!

* Please keep Rachel and her family in your prayers while they face this very difficult time since she lost her father - she is family to us! Also, my grandmother is facing some pretty big health issues and will be entering hospice soon - please say a spare prayer for her and her comfort.

I can't say it enough... health is everything...

Brady has been part of the "Clean Plate Club" often around here lately. He's been helping me cook, which has really helped him like MANY new recipes around here!

Nana Letts playing a great game of UNO with the boys Saturday night.

We took the boys out for some soul-food lunch on Sunday during the Packer game. Their biggest issue was deciding which TV to watch the game on!

Monday, October 13, 2014

Our first blatent LIE

We've had our first 'real lie' happen this past weekend...

I had lunch ready on Sunday, so Jason went to get the boys from the neighbor's yard. He saw Brady and the other kids said Jax was in their house washing his hands and they'd send him over. Brady came in and was super animated telling us a story with his hands about finding a nest and that Jax found an egg and broke it. Now... it took a few times, but that was the end-story that we got. He wasn't 'telling on Jax' so much as just telling an exciting story.

When Jax walked in, I asked him about this. He said he didn't break any eggs. Hmm.
I made the boys walk me to the nest so I could see for myself. I noticed Jax lagging behind and say he was tired and maybe needed a nap (clue 1).

We got to the nest that was lying in the grass... but no eggs. Hmmm.
We walked back home and Jason and I asked them both again about the eggs. Jax said NO to any eggs, and Brady was adamant that there was. Then Jax said he wasn't sure what we were talking about (clue 2).

I texted my neighbor for the story, and in the meantime we told Jax he wouldn't be in trouble if he told the truth since we've never discussed how to treat bird eggs, but if he was lying, he'd be grounded the rest of the day - and we'd be finding out the truth from the neighbor in a moment.

He said he didn't see an egg.

Well, he lied.
(boo)
He's a human growing up and we have to accept this will happen, but it stinks to have his innocent little eyes lie, ya know?

We told him many times that he was in trouble for lying, not for touching the egg. Which our neighbor kids said he was curious and touched with one finger and it cracked - which is why they made him go wash his hands (which was clue 3 that Jay and I put together - Jax doesn't just go around washing his hands).

I REALLY want our kids to grow up trusting us with the truth, no matter what it is. It's really important to me for them to not be afraid, and for them to know we'll always help and the punishment will be much less severe - if a punishment is warranted. We gave him the OUT with saying he wouldn't get in trouble, but he chose not to take it. The moment I told him the neighbors told me the truth, he didn't fight it at all. He said "yeah, I think it might of cracked". huh.
Jason explained that babies come out of the eggs and once you touch them, the mama bird won't come back and so on and so forth. The boys just looked at him with BIG eyes. They have no clue, and we know that. There wasn't any aggression or ill intentions, but he certainly lied about it.

So, parents in the world with success - what do you do? What has worked? Do we just keep doing what we're doing? What say you?

The boys in their 'spirit wear' for school on Friday. Jax's size 'small' is a bit big even after washing in hot :)

Big boys

The Hillcrest Sock Hop for the PTA that night - Friday


This fella is in Brady's class. He proclaimed Brady as his BEST friend. We heard "HI Brady" repeatedly that night from a bunch of kids - it's nice to know he's made friends!

Could you just die - too cute.

I don't know where to begin with all the amazing things happening in this photo on Saturday morning - enjoy. Even the book is amazing - Creepy Carrots.

Sharing an ice cream sundae after dinner out Saturday night - we had family photos at the zoo late that afternoon - beautiful day!

What does a child do when they're grounded? Well, they look at a lot of books and find Waldo over and over again, lol.

Even Brady hung around with books too - he is such a sweetheart.

Monday, October 6, 2014

More Reading!

The boys are doing great. They still love school. I'm not sure why I'm always waiting for one of them NOT to, but so far, so good.

Brady brought home his first book that he's been working on at school, and READ it to us. If you watch the words he's reading, you can perfectly understand him too! I have video that I'll share soon of course!

Jax is no longer using his nebulizer with the cough - it's gone away without any doctor visits or extra steroids, yay! The health room aid was calling me a lot last week to confirm inhaler-times during school and I missed the last call, so she left me a message. It was the SWEETEST message ever, so I saved it and played it for Jax that night. The message said she just adored Jaxon so much, and he brightens up the office each time he comes in for his inhaler. She said he's funny, always happy and we are incredibly blessed to have him.
Um, melt me.
Jax thought it was neat to hear too.

So, we're officially in early winter with the sudden and drastic temperature changes around here! Apparently we don't like to ease into seasons anymore. We skipped spring and I guess we're skipping fall! Blah! Oh well! We took the boys to a farm on Sunday and they just loved it, despite the cold temps.

The boys had a relaxed weekend overall. They hung with dad on Saturday while I attended a funeral for an amazing little boy - Mightly Caleb. My heart hasn't stopped hurting from this event, and I can't get Caleb's mom, Becky, off my mind. If you have extra prayers, send them to her and her family...




They wore shorts to school the day before this!

We had a complete house-exclusion done by Terminix to seal up the house. We continue to have rodent issues in the walls, eww~ So everything is sealed up tight with all new insulation. Some day I'll actually get our fireplace updated to this decade...

Brady read us his first book this week!

So proud!

Brady and his tower.

Brady and Cole at the farm on Sunday.

Donkeys are nice.

Brady would've taken this baby chick home if we let him.


Jax cuddles very differently.

Motley Crew on a hay ride.

Jax thought he owned the hay ride.

Corn Maze fun. Brady insisted on chewing on hay to look like a farmer.



Our pumpkins.

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.