Thursday, January 30, 2014

Brave

Notice something different?

Yes, I've added a song.
It's a song for the boys, most specifically Brady. I've got my hopes up a little bit that his surgery (which may be as soon as this Tuesday) will help him find his words a little easier. But mostly, I just can't wait to hear what he's going to say some day.

In the meantime, I want him to say what he wants to say.
Let the words fall out...

Be Brave.

Monday, January 27, 2014

More Tubes and Sayonara Adenoids!

Yeah, we got all medical up in here again.
I took the boys to their ENT follow up and hearing test. It was moved back multiple times due to illness in late fall. So we finally got in there today, and the only ear that passed the pressure test and the hearing test, was the one ear that Jax got a tube in last April. His left ear failed and both of Brady's failed.
(sigh)
The ENT reviewed Brady's history from the past 2 years of tests and said it's time. He doesn't want either of the boys to have hearing to continue going in-and-out, especially with their speech difficulties, so they're getting tubes. The doc also thought they had enlarged adenoids from the way Brady was breathing and the report form the allergist, but we had always stayed away from the adenoids because of the speech issues. The doc said that since they tested to not have a palate issue, and they're past the age of 5, he suggested they be removed during the tube-procedure if the X-Ray showed them to be enlarged. So, we went to Radiology and got some X-Rays, and sure enough... their adenoids are double the size they're supposed to be and pushing against all their business that helps them breathe. So OUT they come!
I'm waiting for the hospital to call me tomorrow to set up day-surgery appointments. Hopefully this can get done sooner rather than later.

My poor kids have my ears through and through. Sorry buddies.
I am actually getting a pressure-tube inserted into my right ear in a couple weeks with my ENT. Although, my 'procedure' is a very quick office visit where the doc just numbs my ear with drops and gets it done. Hopefully this will help all my issues of fluid buildup and pressure issues with planes (and even trains!) which sometimes even makes me feel nauseous in addition to thinking my ear will rupture with the pain.

I just wish the boys didn't have to go through the full on procedure, but hopefully in the end, it will help a lot. The doc said it should help with Brady's night snoring, mouth breathing, and both of their congestion. And of course, ear infections, hearing and any fluid or pressure they feel! It can only help with speech, right?

Otherwise, we're stuck in the house now until Wednesday. Gotta love the 2014 winter VORTEX going on this year!

Doesn't everyone steam clean the dust mites off stuffed animals?

Jax eating mac n cheese with a fork by himself! I think he had 10 noodles! But refused the baked beans.



Wednesday, January 22, 2014

Keepin' On

We've had a pretty standard week around here. Although, Jason brought the boys to a Monster Truck Show on Saturday afternoon, and of course they loved it, what a fun treat!

Brady's sensitivity has seemed to really come down a lot. He's pouted a few times, but never any tears, so it's been a good week. I hope the teacher and speech therapist are right that he was just out of his routine and his communication regressed, causing all the tears for the past month. We'll keep our eyes on him of course.

I've contacted the local speech pathologist about the process to get Brady into her PROMPT therapy over the summer, so the ball is rolling on that. In the meantime, we've really ramped up our work with Brady. His school therapist has made two YouTube videos already that Brady can watch and follow along with at home. So it's like a mini-therapy session right at home, and it helps me to know how to help direct him as well.

He also has the words that he's working on sent home each week, that I make into index cards and file by letters. We can go over these flash cards at home before or after school to keep the repetition going - which is what he really needs to learn the motor planning skill for the words. I have words that begin with M, B and W so far. The therapist said they'll be working on N soon, so it will be cool to hear Brady say the word NO, versus OH at some point.
Slow and steady wins the race.

Brady caught Jax's cold, but it hasn't slowed him down. Jax still has some symptoms left, so he's STILL on all his double nebulizer treatments in addition to his daily asthma meds. But HEY, it's keeping him out of the hospital and doctor's office and IN school, so I am NOT complaining!
Jax has been cracking us up at home lately. He's developing quite the wit. Which, I actually think Brady has too, so I'll patiently wait to hear it out of his mouth some day!



Brady's flash cards

Wednesday, January 15, 2014

First School Issue

I have all things Brady to report on.
First of all, he did great at the allergist appointment last Monday. He got a little scared when the allergy panels came out, but he forged through. It turns out he's allergic to molds. Which makes a lot of sense. We live in a very wooded neighborhood, have a lot of mulch and he's rolling around in the grass every day that's warm. We'll stick with his current allergy-med plan (Flonase spray 3 seasons out of the year) and take the advice and tips from the doctor of how to wash better, encase pillows, wipe out window sills, etc. He also suspects his adenoids are a bit big due to the noises he makes while sleeping, but we don't want them removed given his speech issues.

Brady had fluid sitting behind his right ear, so the doctor was happy to know he'd be seeing the ENT with a hearing test in two weeks. So we'll see how that all turns out later this month. It was a good appointment and I was happy to see he wasn't allergic to more things.

In other Brady-news, he's become very... sensitive. We've noticed he cries very easy lately. I don't know how to explain it other than he just really breaks down in tears over simple things. We noticed it really ramped up over the last few weeks.
Well, yesterday he cried having to get dressed for school. He refused to get dressed, so I counted to three and sent him into a time out (not for long because he had to catch the bus!). Well, he was sobbing about the whole ordeal. I asked why he was so upset and he grabbed his iPad and pushed the 'friends' button. I asked if he was having problems with friends at school and he said "YES".
(sigh)
So this lead me on the journey of emailing his teacher to see if she could figure anything out. It's very difficult since you have to ask Brady questions and he really can only answer yes or no (he says "oh"). So while I'm asking questions, I'm not sure if I'm putting the idea in his head or if it's a legitimate issue happening. He answered yes when asked if any kids were mean to him, but no when asked if the teacher saw it.
I emailed his teacher asking if she had any idea of any occurrences or if she noticed Brady's sensitivity lately. She called me directly a few hours lately and felt horrible for Brady, but as suspected, didn't know of any issues he may have had with friends, so she was going to investigate today.
I received a call from Brady's speech therapist during the day saying she wanted Brady to bring his school-iPad home each day from now on so he could communicate with us at home easier (his school iPad has all his classmates and play areas of the classroom on it). She didn't say anything direct about Brady having issues with any other kids, but said she's wondering if his heightened sensitivity may be due to his frustrations with his regression. He must know people are having a harder time understanding him lately. So, for now, he'll have access to both iPads while at home.

Brady's teacher called me after dinner this evening and told me she spoke to Brady. She said he picked out three boys on his iPad when she asked who was mean to him. She asked where it happened and he picked out the 'literacy area' of the classroom. The teacher said he was only with one of the boys in that area, so she directly asked that child in private if he recalled any issues lately and of course, he had no idea. The teacher said she asked Brady what the boys said and she said he looked her right in the eye, lowered his voice and said "HEY" and then he rambled an non-understandable sentence.
She believes something definitely happened that hurt his feelings, but it will be very difficult to figure out what it was. I'm assuming a child may have said something to the affect of "I don't understand you" and Brady took it hard. The kids are at an age where they really don't verbally attack one another yet. The teacher said these boys are actually all very good friends and play together each day, so we're hoping something small was said, and it really hurt Brady's feelings since it couldn't be 'fixed' or 'addressed' right away like most other situations.

In reality, these things will happen, and we want to teach the boys to have thick skin and forge through knowing the name-caller is sad about themselves, but it's a hard line to draw when your child can't communicate to defend themselves.  I mean, I never planned to call someone's parents for name-calling or anything. I want to teach the boys to be strong, confident and to work out their own challenges, but with this unexpected developmental disability, it changes the game. There's this weird fine line I'm struggling with. So for now, I just plan to email the teacher if issues arise and ask her opinion on how to proceed. I feel good about how this first little issue panned out.

While Brady was in therapy today, the teacher spoke to the class and reminded them that if they ever don't understand Brady, they can ask him to use the computer and to try very hard to be patient with him. She told Brady in private, that if anyone hurts his feelings, he needs to tell her right away so everyone can talk about it. She said he responded with "My mommy said that" and she understood him! She said of course she's a familiar listener and it was known context, but she understood :)

In the meantime, I'm supposed to call the teacher at the end of next week to discuss Brady's new heightened sensitivity. She said she wants to see if he gets any better with another week of his regular schedule. We're hoping it's because he's been out of his routine and he's possibly upset that people aren't understanding as well since his regression. I'm not sure what's going on. He came home today and laid on the floor crying because Jax got to the living room first. He SOBBED in my arms about it then. Huh... hopefully this will pass. I have no idea otherwise what would make a child so easily hurt about things. He doesn't get angry or yell, he just turns on these huge tears and looks devastated.

I wish I could just make everything normal and easier for him. We're trying so hard!

Brady during his allergy test. He earned himself a Happy Meal with Mommy on the way home. I'm actually pretty happy to see most of the tests negative, woot!

These two cuddle-buds. And the costume is baaaack.

Sunday, January 12, 2014

Regression

What a dirty little word.
Brady had a pretty big 'regression' with his speech over Christmas break. I realized it when we traveled to St. Louis and listened to him speak in conversations. He lost a lot of his words when speaking in sentences to others.
I volunteered at the boy's school on Thursday and sat in on Brady's speech therapy. I noticed the therapist kept recording Brady. He actually did 'ok' on some of his individual words he'd been working on, but when asked to say a phrase with the same words, it was awful. It's a hard feeling to describe, but I felt like I was punched in the gut, and felt my face getting red/hot, and I fought back tears.
Example: Brady is working on saying 'Brady', which he can say "BayDee" and he can say 'bear', although it sort of sounds as if he were deaf when he says the word. The therapist had him hold up a bear and say "Brady and the bear" and it came out repeatedly as "GeeGee a a Gare".
Ugh.
I found out after the session that parts like that were recorded so the therapist could show just how big of a regression he had from the break in therapy. I guess to 'prove' his needs for future IEPs.

So, we are now on the hunt for a summer-plan for him. I had previously researched a program in Detroit that is pretty amazing (Kaufman Institute) and it just so happens I have a great friend who lives near this facility for the boys and I to stay with. I'd have to have our therapist record a session and apply for Brady to see if he'd be accepted, but of course, I need a lot of professional opinions before uprooting my kids, paying a small fortune, and hoping it helps Brady if he even were accepted.
So that's where I am. I'm collecting information from everyone to find the best fit for Brady to get him some beefed up help before kindergarten this summer.
Our therapist is speaking with a colleague of hers from Pewaukee who uses the PROMPT technique for severe cases, and she's thinking it may be better for Brady to have extensive almost-daily therapy here at home throughout the entire summer. I'm hoping this option pans out so I can keep Jax home for his therapies this summer too. I'm looking into a few different programs for him to work on hand writing before kinder as well.

Here is a video of Brady from a few days ago. I recorded Jax doing some feeding and Brady motioned to me that he wanted to be recorded. This is what he said:


In other news,
The boys were home most of last week due to extremely cold temps (yes, there is such a thing in Wisconsin to be colder than cold). We did a lot of board-game playing! The boys got the idea in their head that they wanted a very specific Wii game and asked us constantly about it. This has never really happened before. I mean, they've asked us for things before, but they've never ASKED us for things before if that makes any sense. I realized later, that Brady was talking about the video game store above in that video by the way! Here's another example of the WANT, here is Brady's face when I told him NO and that we just had Christmas and we don't just 'get things' when we want them:
Really Buddy? He had an iPad to SHOW me for the 10th time what it was that he wanted. He cried. Actually gave me the big doe-eyes and cried. Then, I found this nice little note from him before he left for school:
Yup, he wrote out 'wii'. Hilarious and scary at the same time knowing the lengths of manipulation a 5 year old has already learned. Then, I had Jax ask me if I was taking Brady to the video game store while he was in feeding therapy. Wow, they're teaming up.
So, guess what happened? The biggest PARENT FAIL on our parts to date. Daddy found it at a used-game store and brought it home. Guess what happened next?
They fought, argued and yelled at each other while we told them to eat dinner. It was awful. Like two unknown little brats were just uncaged and in our kitchen.
Ugh.
So, we're going back to little or no unearned toys between Christmas and birthday! Don't get me wrong, they love this game (Resort Sport? PingPong, Jousting etc, it's hilarious) but their reaction was gross, and we're over it, lol! We've always believed 'stuff' makes kids nuts. And they prove us right.
(sigh)
I have other things to report, I'm sure, but I see this post is way too long already! I'll update soon since Brady has an allergy test tomorrow to see if we can figure out what his triggers are for his seasonal allergies and eczema. Yay :)

Sunday, January 5, 2014

Hanging at Home

We've had a lot of long, cold days to finish up the final holiday season. The boys have off of school tomorrow due to extremely cold temps, so I stocked up the kitchen and we're ready to hibernate one more day. The boys went with Jason to watch their older cousin play a college basketball game in Milwaukee on Saturday. Otherwise, it's been a lot of time at home!


I found this picture on my phone and laughed looking at it. We kept giving Jax rides on our luggage when at the airport for long stints.

The New Years holiday brought lots of game playing!

And football watching.

And Mario Kart driving.

My silly monkeys. Yes, that's my Starbucks stir stick in B's mouth, such a goof.