Friday, May 23, 2014

Little Loose

We've had a great week, and we're really ready to kick off summer with the holiday weekend.

The boys had an amazing time at the soup kitchen on Wednesday night. Their job was to hold up and announce table numbers. Jax mastered the microphone and made many people smile with his 'ballgame' type of announcements. We think we'll definitely be going back each month when we can!

The boys had a dentist appointment today and Jax no longer requires to be in the 'special' room. He allows all the necessary tools in his mouth and doesn't gag and vomit :) I was able to drink a cup of coffee in the waiting room and review work-emails in blissful silence!
Jax has one slightly loose tooth on the bottom, but none for Brady. They said his tooth could be loose for a very long time before it becomes wiggly and ready to come out. Boy's teeth takes a lot longer to fall out vs girls, which is fine by me since I just loooove their tiny perfect baby teeth! And not to mention with all the speech and eating issues, I think keeping their mouths the same as long as possible would benefit them.
I know I already had 3 teeth out by this point the boys are at, so it's definitely true it takes boys longer, on average. Their 6 year old molars aren't bulging yet either, so we'll see where they are in November with their next check up.

We had Jason'd open house at his office last night. The boys were in true form with running around, dinging bells and charming those around us. They kept all the other kids busy, so everyone just kind of left them do what they wanted. Ha~

We're off to feeding therapy and then we'll be meeting Jason to head to a local flower nursery. Time to stock up on annuals to plant this weekend!

We plan to be outside a lot this weekend. Maybe our Wisconsin-tans will start to fade :) 

Isn't this how everyone watches morning cartoons?

Two peas in a pod!

Running around the new landscaped area.

Looking good Jason and Krista!
The boys keeping busy during clean up.

Monday, May 19, 2014

Back Home


We are all back home together and everyone is doing well. I was able to stay connected to the boys while away for work, and while Jax did have some asthma with a cold, everything turned out fine. No emergencies :) Toronto is such a beautiful city. It reminds me of a very clean Chicago, except all the buildings match. They look like they're all made out of glass. Interesting how they were able to keep it so uniform.

One thing I noticed from the boys after coming home was that Jax talkes A LOT, and Brady's speech was just a hair clearer for me to understand him more. Jax has to ask 10 questions about every single step we make throughout the day. It's exhausting and I can't help but wonder if he was like that before I left, LOL!

We had a nice weekend catching up on household things and just all around hanging out together. We have a nice little week planned. We are taking the boys to a soup kitchen on Wednesday night to donate our family-time (my friend Krista's family runs one out of their church and we think it's a great time to start with the boys) and Jason has an 'Open House Party' at his office for local family and friends to attend on Thursday. I'm not sure who can all even come on a week-night, but it will be nice to throw him some more support with his new career.

We're looking forward to the holiday weekend for some more family time to relax and get the house ready for summer. Fingers crossed the weather forecast is correct with the sunshine coming!

The boys and I just before I flew out Saturday morning.

Brady is definitely my little smoocher.

One of the scenes out of my hotel room. Lake Ontario, so pretty!

On the way to the airport I saw this super high skywalk and thought it was cool.
I have so many amazing photos from my week in Toronto, but I'm not able to publish many photos I have given that it's a corporate Mars' Conference. I'm not about to step on any 'rights'! But here's one I think is safe :)

We took the boys to the outlet mall for a little summer-wardrobe refreshing, and they couldn't resist this thing. Hmm, I'm thinking this is their last year for a ride of this size...

Jason had a game on Sunday afternoon.

Running the bases after the game.

Friday, May 9, 2014

Jax's IEP and Adios!

We had Jax's IEP bright and early before school started this morning. We met with 8 (or 9?) people, so it was a LARGE round table of people all talking about Jax.

The meeting went well, and we could've talked for another 20 minutes if we had the chance and time to do so, but at 90 minutes into it, the school bell was ringing and everyone had to scatter. His IEP isn't complete, but they wanted to have a conversation with us and discuss a few things to figure out and put into it. We're expecting a final version next week, which I'll have to review via email while I'm gone.

The first thing they wanted to discuss was our medical concerns for Jax in full-day kindergarten. We covered his asthma-needs and eating. I'll be sent a medical form in advance this summer so I can have our pediatrician fill it out during his physical in July. We're trying to decide if we'll have a nebulizer in the nurses office or just an inhaler. As of now, Jax gets nebulizer treatments every 4 hours if he gets a cold. It's always worked out that we would give one just before going on the bus and he'd come home in time for his next one and just have an inhaler on-hand with the nurse. Well, with being gone all day, we may just try the inhaler first and see how that goes first.
As for Jax's eating, they'll have an aide help him along each day and hopefully that will work out. I'm still waiting to see how that's written out. I'm not sure how we'll handle eating when he's sick, but not too sick to stay home. With a bad cold now, he'll need to be tube-fed for a day or so, but again, it's all timed around his 3-hr class. The school said they can accommodate tube-feedings, but ehhh, I don't know. I have to think about that for a bit and see how he's doing next fall.

Otherwise, Jax has progressed SO nicely and is either at or above every level of academics, so we're so proud of how far he's come! He will no longer have specialized phy-ed, even though he didn't quite hit his goal for this year, he is still considered at the correct level as his peers. The phy-ed teacher will let me know if he/she thinks Jax should be re-evaluated if he starts to show weakness, balance or other physical issues. We're going to stop using his braces now and see how he does as well. We want to see if there's a change his walking gait over the next two months and re-assess at his 6 yr old physical in July. (SMILEY FACE)

Jax will continue speech therapy, with new goals set. He'll also continue to get support for his issues with sustained attention, task completion and independence with tasks. So, while he has no behavior problems, he still does have difficulty focusing and sustaining his attention. Mainly on tasks that either don't interest him (writing and drawing) or if he feels that he's being pulled away from something fun or more interesting (be taken out of groups for therapies or testing).

It seemed like they all felt that Jax didn't have much of a large fine motor delay as much as he has a minor fine motor delay mixed with ZERO desire to things such as writing, drawing or art, so he really has a hard time attending to the activity. The team spoke at length about ways to help the situation, which I won't bore you with all the ideas, but the special-ed teacher will monitor Jax and give the kindergarten teacher and aide ways to help in specific situations that she'll observe. So, I 'think' Jax will be observed by the special ed program and not actually get any specific instruction anymore pulled out of class. We'll see how that goes, but it seems like progress along with continued support. I know they discussed giving him more time and the ability to be work on things in a quiet/non-distracting environment, but I would think that would upset him, so we'll see how it all goes.

We feel good knowing there are a lot of eyes on him and everyone showed great care and concern for his success. They adore that little elf, and just really want to see him succeed. We'll definitely keep the boys in this school district for kindergarten and possibly the first few elementary years since they are so well supported.

Tonight we had dinner out to celebrate Jay's birthday, which is tomorrow (Saturday), since I'll be leaving for Canada bright and early. The boys really enjoyed dinner out and coming home to gifts and cake! They insisted on candles and singing, I just love this age!

I'll be really missing these guys while I'm gone from home. Thank goodness for face time!!

There was a photo booth at the restaurant. The boys chose a birthday theme for Daddy...

The boys 'helping' with gifts!

Wednesday, May 7, 2014

Brady's IEP

I have a few updates to report and am trying to not lump 10 things all together in a book-sized report like I have been doing, so I better report on Brady before Jax's meeting on Friday!

We had Brady's IEP meeting early this morning. Eight of us met to discuss his progress in 4k and what his plan is for kindergarten. It was so great to meet his teacher and speech therapist for next year, they seem fabulous, whew!

Nothing in the meeting was surprising, so that makes it a great meeting :)
Brady will no longer receive "special ed" since he has tested at standard level or above for all academic needs. His speech disability proves to be a pretty big road block, but it was nice listening to the current teacher and therapist brainstorm with the future teacher and therapist on ways to make it as easy for Brady and the other kids to communicate. It's obvious that Brady won't be able to just start speaking clear sentences anytime soon, so to support him while he is working on that, they will let him use the same iPad he has at his current school since he's used to that program. They'll add memory to the computer so we can add on more kindergarten items.
So, this is a big change going into kindergarten. Just because Brady has a 'special need', he doesn't necessarily need 'special ed' since he's currently learning and performing at the same level as typical-developed children. We just need to address his 'special need' so he can continue the way he is. All good.

Brady's kindergarten speech therapist will be with him for the first part of class each day for the entire first semester to help integrate the new kids with Brady and the way he communicates. We love this idea.
He'll be pulled out every day for private one-on-one therapy sessions, but then also be observed in the classroom a certain amount of time each week.
The classroom aides will be in the lunch room and the playground for him to have as adult references who will be familiar with his communication (sooner or later they will be :))

The staff knows we're concerned for Brady's social interaction and making friends, especially after kindergarten when kids start to get 'judgy', so our goal is for him to form friendships NOW and then they'll be sure to always put the kids that Brady becomes friends with in his class moving forward onto 1st, 2nd grades etc.
How great is that??
They love how his emerging writing and reading skills are coming along and will soon add a 'white board' app to his iPad so he can WRITE what he's trying to say.

His IEP goal for the end of kindergarten is to be able to say 5 word sentences. That's a tall order, but hey, let's try, right?

Brady's test score for speech still show that he's in the 'less than 4%', which is technically up since it was in the 'less than 1%' for the past couple years. Hey, a win is a win.

The boys will be on a 'big-boy-bus' with other elementary kids most likely next year, but they assured me that the kindergarteners all sit in the front 2 rows up by the driver. At least Jax is along and will report anything and everything that goes on, so I feel ok about that.

Brady at the birthday party last weekend

Jax being funny.

Jax taking care of business.

Brady was DYING to get his face painted! Jax is still not letting a paint brush near his face... (I love Brady's one blue eye and one brown eye!)

Birthday kids!

Friday, May 2, 2014

Deep Breaths

I have some good news. Jax got 10 'swallowing dysfunction' therapy sessions approved. I called the insurance company when I got the letter (stating our pediatrician got it approved) to make sure I was understanding that our current feeding therapist could do these sessions. The customer service rep then told me we only pay 30% of each session since our deductible has been met. Uh, say what? We've had this insurance less than 30 days and the deductible is $5k!
I did some digging and found out that Jax's hGH meds (3 month supply) has been applied and they're waiting for us to pay it. I didn't have the nicest phone call with this new mail-order pharmacy that we have to use, because I was stunned when she told me I had to pay it right there over the phone in order for them to release the drugs.
Uhhh, say what?
I asked her who just pays $5,000 over the phone like that? Her response, "A lot of people do". So I took down her name and politely excused myself from that conversation since my blood pressure was boiling!
I have a message into the manufacturer of the drug hoping to help in some way. I have NO idea how they'd be able to, but I assume they've dealt with this before.
Sure, we could take the $5k out of our savings, but man... with this big job change that just took place, we've been dipping into it and it would just be nice if they could even just break up the payment a little bit. I feel uncomfortable taking large amounts of money like that out while we're in a state of transition like this for the family. Ahhhh, always something. We'll figure it out, I'm sure.

I called for Jax's May-medical-supply order today and found out that none of his Pediasure that he consumes orally is covered anymore. It was considered a medical-need since he couldn't eat enough 'food'. We had a feeling that it wouldn't be covered anymore with the insurance change.
So, we're now buying it by the case-load. I ordered a 12 pack of some organic nutrition drink for kids online that's comparable in nutrition/calories, so I'm interested to see if Jax likes that. I hate how much Pediasure he consumes each day.. blech! There so much fake stuff in there, that it makes my skin crawl to give him SO much of it. So now that I have to physically go to the store and buy it, I've decided to look at alternatives.
He still has to drink about 3 Pediasures a day to keep up the amount of calories and nutrition he needs. We'd rather he drink it and we pay for it, rather than he take it through the tube and have it covered by insurance. Ce la vie.

We're still in a state of chaos lately around here. I can't wait for summer when we have help with the kids so Jay and I can both focus more on work. It's so close, but seems so far!

We took the kids to their kindergarten-preview-night where they got to see their new school while Jay and I attended a meeting in the gym. It's a very tiny school with only two kindergarten classes (connected to each other) which I really like. It's mainly the Town of Brookfield residents who are far from the other Waukesha schools. We found out the school is getting all new playground equipment this summer, so the boys really lucked out. We'll be back in August for their official open house and pictures. Jax can't stop talking about kindergarten, high school and college. HA, he's forgetting a few years in there!

Jax was back at feeding therapy today. His therapist had perfect timing with his two week vacation! Jax did well, and we discussed how he would document any and all progress Jax makes to resubmit to insurance for more sessions when we're close to the 10.

I took the boys to a field trip with their class today. They don't have class on Fridays, so they thought it was cool to see their friends. They saw the high school kids perform 'Alice in Wonderland'. They thought that was neat.The boys have a birthday party to go to tomorrow afternoon, so they're definitely having some fun lately!

I'm getting ready to go on my first work-trip in a week. I leave next Saturday for Toronto Canada, which is also Jay's birthday, boo! The next day is Mother's Day, uhhh, double boo :(
I'm excited for the trip because it will be an amazing experience for me to help run a conference of this size, but the 7-days-gone part makes me a bit itchy. I've had time to process it and am working on it. So, the next week will be non-stop work and preparation until I leave. I'll do my best to get another update in before I leave, especially since we have the boy's IEP meetings on Wed and Fri this next week!

Still loving their costumes!

I caught them spooning!

Jax saw that I saw them, so he gave Brady a BIG squeeze, AWE!