Wednesday, February 26, 2014

They can hear!

The boys had their three week followup with the ENT from their ear tube and adenoid removal procedure. Their hearing tests were perfect and everything looks great. So glad that's all done!

We've started having issues with Jax and his nightly hGH injections. He's suddenly gotten scared of them. So odd since he's been fine with them for half a year! So, now we're trying a 'Brave System' with him, where if he's brave, he earns a prize at the end of the week. It's working ok so far. I hope he doesn't remain scared like this because I won't be able to continue giving them to him if he's literally scared like that. So, we'll see how the next few weeks go. Brady has been so amazing with helping. Last night he gave Jax a bear hug and literally held him in his arms as I gave the injection. I seriously MELTED...

Dad brought home a treat from his conference. Clearly Brady loved it...

Monday, February 24, 2014


We had a nice quiet weekend, which usually leads into a busy week. Jax is still doing his double feeding therapy sessions, and he's making great progress. He's also doing well with his occupational therapy that he does at the hospital each Friday. If he concentrates and tries very hard, he can ZIP his jacket now, woot!
I found out from Jax's teacher that there is a month-long summer program through our district for kids entering kindergarten in the fall. It works on their preschool academic skills, which is writing along with other things along that line. She said she'd be suggesting it for Jax for sure, so I love to hear of this program! I just need to wait for the details and plans to see how I'll fit it in with the boy's summer therapy plans I'm trying to gather.
Jason is signing the boys up for T-ball for the summer. It will be a nice step up from the 'Blast Ball' they played last year. The boys can hit from a pitched ball, so they definitely need to be done with 'Blast Ball', which is still technically the only sport they could play in our Town-league given their summer birthday, so Jason found a nearby city league he plans to put the boys in. Since Jay is willing to the be the coach, we have more freedom to move them around. We obviously feel more comfortable with Jay coaching given Brady's speech disorder. Easier for him to understand and communicate with the kiddo.

Jay brought the boys to the indoor batting arena on Sunday and Jax was really hitting the balls well. Since he looks much younger than he really is, Jay said another dad mentioned how amazing he was. (Jax looks more like a 3 or 4 yr old around other 5-6 yr olds, so it looks more impressive). I think it's SO interesting how Jax struggles with fine and gross motor skills and requires braces and therapies, and yet... he can hit a pitched ball with a bat. How strange?? Does anyone else have experience with finding things like this for their kids with developmental delays (or Dyspraxia)?

Family Date Night. Brady ordered grilled chicken breasts on sticks and a salad. Mmmkay, those are my fries you see at the bottom. How is he my kid? Although, we do both love donuts and pancakes, so I'll give him that.

(sigh) This shot is from Jason. Jax is multitasking like only a dude knows how...

Brady is patiently waiting for the Lego movie to start on Sunday afternoon. We were VERY early assuming it would be packed. Nope. Just us until the show started.
Finally about to start, it was very cute!

Thursday, February 20, 2014

Talking, talking, talking

I was at the boy's school today and Jax's speech therapist approached me saying she thinks he's had a major improvement in speech since the surgery and his 'nasal' sound is diminished. Huh. I agree that his 'language' has gotten better, as in, he's using more mature words, but I don't think we noticed a massive increase in his speech. I think it's hard when you're around someone constantly to notice as much as other people.
So, that would be cool if that's true!

I noticed during Jax's class that he does the same thing at school that he does at home. He's OBSESSED with asking how long things take ("How many minutes??") or asking what we did yesterday, what we're doing tomorrow, or "what's today?".  It's beyond exhausting how many times he repeats these questions! Well, during story time, the teacher asked a question about the book and Jax asked how many minutes it would take to read it. The class aide turned to me and said he's been really obsessive about time frames lately. Oy. Great. I have got to get this kid off this hamster wheel.

I wasn't able to sit in on Brady's speech therapy since his therapist was out sick, but she's been keeping up with us over email, and he had a great week with words. His approximations are definitely better at home, and while others still wouldn't understand him, Jay and I are understanding full sentences with known context.
The boys will have their hearing retested on Tuesday, so that will be nice to put behind us.

We've got the ice dams off the roof, but we've got crazy weather again, so hopefully nothing more happens with any of that. Now to haul the dead fridge out of the basement to recycle...

Sunday, February 16, 2014

Ice Dams

What a winter we've had! This past year of extremely high 100+ degree days in the summer and now a very long run of extreme cold and/or hoards of snow has definitely put this year's weather up there with notice.
Well... our master bathroom ceiling was leaking over the past few days, and we realized it was because we have ice dams on the roof. Thanks to our neighbor, we were able to find the area of evil, and blow torch a channel for the water to run down. We have a heat coil up, but obviously it's a little past that point. We plan to install some heat coils up on the roof this summer to stay up permanently, which we can plug in when the cold months start up.
I cleaned the ceiling up with some bleach today, and hopefully it holds well and everything is fine, but Jason plans to go into the attic above that bathroom and replace the insulation and make sure everything is kosher once we get a thaw here.

In other amazing home-owner news, we had a funky smell by our garage door/laundry room. I cleaned everything, sprayed out the garbage and even lit candles. Well... we found out today our extra fridge in the basement (located directly below where we were smelling the funk) had stopped working, and our extra meat in that freezer was rotting.

Yup. I can't make this stuff up.

Now, we plan to get a new fridge in our kitchen at some point, and planned to switch out the basement fridges, but now, we'll just be down to the one fridge to use for quite some time. Any extra money for the house needs to go toward our front yard renovation in just 2-3 short months since a certain husband of mine ripped everything out last fall promising to replace it.

When it rains... well, heck, it FREEZES.

Man on a ladder in the snow. Oy.

Valentines from school!

Jaxon reading Daddy a book from school. He's learning the sight-word 'the'.
Brady helping me make an end-of-Valentines-weekend-cake!

Guess which side Brady sprinkled...

Monday, February 10, 2014

Naughty Words, oops!

The boys were back in school today for the first time in almost a week! I must say the healthy run has been nice (knock on wood). They'll have their hearing re-checked and a ENT followup in 2 wks. Hopefully everything worked and they can properly hear - I assume it should all be great.

We received an email from Brady's speech therapist saying that since we worked so much on the letter 'w' while at home (flash cards and YouTube videos) that Brady regressed with his other letters and words pretty badly.
::gut punch::
This disorder feels so impossible sometimes. It feels like we're never doing the correct thing to properly move him forward. Ok, pity party over, but man... it's so hard to just HELP him sometimes.

In an ironic twist of events, Brady was reprimanded at school for the first time for saying "Dang it" twice. Seriously, he said a naughty word clear enough to be understood, LOL. Apparently he came back from speech therapy and he had to choose a play center, but all the passes for 'house keeping' were gone, so he said, "Dang it, I wanted house keeping". The teacher said it was SO cute and it was SO great to understand him, but obviously she had to tell him to choose different words. I guess the speech therapist heard him say 'Dang it' as well.
Well, hmmm, we need to find another term for him to use when he's frustrated I guess! Suggestions?

*And yes, I'm secretly relieved that the naughty word wasn't as bad as it could've been. We're all convinced Brady says really naughty things and we just don't know it yet!

So, we had a nice little sit down with him today to discuss everything and future consequences. He's been a little emotional again lately, so I wonder if it really is working him up to have his schedule thrown off. He's not having outbursts/tantrums/behavioral issues, but he's just 'off' with his emotions lately. It's not intrusive to our lives, but it just makes me realize something is up. Is it that his schedule is off and he's not in therapy and he regresses and he becomes emotional knowing he's not as understood? ALTHOUGH, we have noticed he's approximating a lot more words better for us to understand more, so there is some positive progression happening.

Otherwise, we've been in Valentines-making-mode, which that's all done and in the backpacks (check that off the parent-to-do-list). The boys went to see their cousin play college basketball here in town on Saturday and they got to go bowling on Sunday, so they've definitely gotten out of the house this weekend.

In Jax-news, he's been working hard at eating. I've been keeping a food-diary of everything he eats since we'll be resubmitting to insurance at the end of the month for more therapy. I've got Jax in twice-weekly sessions for this month for a good push. He's been doing pretty good with trying new things. The biggest problem he has is that his bites are TINY (so one slice of banana is like 4 bites to him) and then he pockets food in his cheek and has to really concentrate to swallow it. So that's what we're working hard on. At least he's moving on from only drinking his food during the day to some eating along with drinking his Pediasure. Slow and steady...

Last day home recouping from surgery - movie day!

A little bowling action with the neighbor kids!

Bedtime book about sharks!

Wednesday, February 5, 2014

Healing Up

The boys had their adenoids out and ear tubes put in yesterday. The procedures went well, and the boys did great.
Even though I talked to the boys the night before of what to expect, Brady still acted shocked in pre-op that he was also a patient. He buried his face in me and started to cry out of his big doe-eyes after the doc stopped by to review what each child was having done. He was very unsure of everything, but since Jaxon went first and he could see that Jax had no pain going into the ER, he was a bit more at ease. The 'Versed' drug helps too. :)

Brady had some tummy-issues that caused us to stay a few hours longer than expected when the procedures were done, but by the time we were home and making dinner, Brady ate and was fine! Who knew Brady would be the one with tummy troubles over Jax!

Jax really acted like the whole thing was no big deal. Other than sleeping for an hour after surgery, he really didn't act like much in his day was off. He didn't like the IV removal (that was placed after he was asleep) but otherwise, eh, it was Tuesday to him.

He gets SO giggly on the pre-op drug and says hilarious things. The anesthesiologist came in by us to discuss Brady and said Jax giggled all the way until he was put to sleep and his last words while dosing off were, "I love Brady...". Awe.

So, I guess the boy's adenoids were really big. Brady's were obstructing his passages 100%, oy!
I received a phone call from our pediatrician's office today checking on the boys. The nurse said our doctor received a report from the ENT stating that Brady's adenoids were "4+" in size, which means nothing to me, but apparently shocked our doc! She was glad to know he had them removed.

Odd... why adenoids are a plural word and referred to as 'them' since it's only a singular piece of tissue. Huh.

Anyway, the boys are doing great. Jax is back to eating food by mouth already again today and they've been playing nice all day. They are going back to school tomorrow, and I'll be with volunteering, which is nice that I can keep an eye on them. I pulled Jax from his specialized phy-ed course tomorrow and OT at the hospital on Friday, so he can just take it easy. No core-strengthening until next week!

I'll have the boy's hearing re-testing in a couple weeks to see how they're doing. In the meantime, I'll be interested to see how Brady does in speech therapy tomorrow.

Some light reading before pre-op.

The mood of each boy once in pre-op.

Pretty much the entire scene post-op.

Brady feeling better and requesting seconds for dinner!
PJ-day to rest up today. Jax working on his classroom Valentines.

We're still really struggling with fine motor skills, although his grip and posture of the marker is much better!

I'm pretty sure I've played this game 20 times today...

Monday, February 3, 2014

Endocrinologist Follow Up

We almost forgot we had this 6 month follow up tonight!

Last July, Jax was 37.8" and tonight he was 39.7", so he gained 2 full inches in six months! So far the hGH injections seem to be working, so it's definitely worth it. He also gained weight, although he hasn't gained much in the past month or so. He weighed in at 29.9 lbs tonight, so he's just under a half pound from the magic number of 30#. He was 26lbs just six months ago, so these are great gains for our little elf!

SO, even though he's not on any charts yet, he's movin' on UP!

Getting Ready

We're preparing for the boy's surgery, which is TOMORROW already!
I'm actually glad it's sooner rather than later so I can't obsess about it too much, and we can get these boys hearing properly.

Brady's speech therapist has made up flash cards for Brady to perform while being video recorded. She will have him do the same cards the first day back from the surgery (possibly Thursday, otherwise not until Monday) and then he'll do it again one full week after the surgery. She wants to see if there's any marked improvement from it.
Of course she'd love to be able to experiment with just the tubes out and/or just the adenoids out, but obviously we're not going to do two separate procedures, so we'll take what we can get!
It will be interesting to see if there's any change or improvement with Brady's articulation, so we shall see!

It can only help Jax with his breathing to get the inflamed adenoids out. Maybe help with swallowing as well? I'm trying not to get my hopes up on all of this...

The boys had fun for the fist half of the Super Bowl on Sunday. We were at the neighbor's and they got to play a special BINGO game to look for clues during the game and on the commercials. After Bruno Mars performed the half time show, we packed up the boys and Jax was very upset to hear the Packers weren't winning.
Yup, time for bed buddy.

Wish us luck for tomorrow's procedures!

Jax looking like a mini Conan O'Brian

Hair cut time!

All freshened up (although a little shorter than we wanted for winter time)

Love at the barbers.

We delivered our extra medical supplies on Saturday to a donation warehouse for other little tubies in the area to use!

The boys love this game!

Super Bowl Sunday!

Some of the kids in the basement of the neighbor's house for the game.

Love these dudes!