Sunday, March 9, 2014

Life is a circus

The 'BRAVE' reward system seems to be working with Jax. We give him a goal each week, and if he's brave during his nightly medication routine (injections) he gets a fun reward. This week he got to go to the circus!
Now... I'm actually not a fan of 'trained wild animals' for my entertainment, but eh, I gave in for the boys to see the real circus. It's slightly cheesier than I ever remembered, but there are still some really impressive acts out there. It kind of felt like a very long episode of 'America's Got Talent'.
The boys got bored during a few parts, but the lions, motorcycles and cannon really got them excited.

Today is our catch up day with things around the house. Jason is tackling the attic above our master bathroom to see what kind of damage has been done to the wood and insulation with the leaking roof. Remember the ice dams? Yeah, from all that. So he pulled out wet insulation, sealed the cracks and is drying it all out with fans for the next few days. He found a large bee nest up there, so instead of poking at that, I think I'll contact our Terminex guy to remove it!

As for the boys, Brady is working hard on a new letter sound 'N'. I sat in on his therapy session at school on Thursday and he's working hard on that. His Special Needs teacher contacted me about Brady's IEP meeting coming up in May, and we'll be meeting at the elementary school where he'd be going to kindergarten. We will meet with his current 4k team and key members of his new team for kindergarten.
woah.
This is getting real! They requested that we do the boy's IEP meetings on separate days since the meetings would be too long otherwise. It looks like we're shooting for May 13, which sounds far away, but really isn't.

This of course leads Jason and I into a tough situation. I submitted paperwork to open enroll the boys into the Pewaukee school district. We are in the 'TOWN' of Brookfield, and zoned for the Waukesha school district instead of the Brookfield school district (which is much closer to us). There are no open enrollment spots in Brookfield, so the boys would have to go to Waukesha unless we open enroll them elsewhere. We have to do public school because of their IEPs and all their special needs academically.
Well, the Pewaukee campus distance is similar in distance from Waukesha, which is much smaller with much more impressive academic stats at the high school level. So I put in their names for open enrollment to see if they could get in, but we won't find out until JUNE.
Well... here we are making the boy's kindergarten plans in May with all their new teams and goals and complete plans to cover all their special education needs, therapies and/or adaptive devises etc. We LOVE their current 4k program in Waukesha, but they won't have the current teams they have now. So, we've been thinking, we should just keep them in Waukesha for the next 1-3 years since their special needs services seem to be going great and try for Pewaukee later in elementary school.
The only problem...
The later the grade, the harder it is to get into the school systems (and we have two for the same grade). What a dilemma!
So... this has been topic of convo up in here lately.

In Jax news, I submitted a 4 page meal diary to Jax's feeding therapist to turn in with reports to try and get more therapy sessions from insurance. I feel like our 'approved sessions' go by so quickly before it's time to resubmit everything all the time! He has a feeding team followup at the hospital in about a week where we'll get an official weight and progress with the dietician. My hopes are up a bit to start taking some of his tube feeding away at night and to start the official wean, but you all know how I've learned to not do that to myself too much!

The boys have been so healthy lately (knock on wood) and it's been fabulous! They always wash their hands upon entering the house now no matter what, and I think that's been helping a lot, and of course, I think the tubes and adenoid-removal has helped too. Brady had a 3 day runny nose with a lingering cough last week, and we thought Jax was going to escape it, but I noticed a little runny nose on him he woke up today, so we'll see how that goes, but wow, it's been nice - no complaining here!

Tigger and the boys at the circus. Brady wouldn't go near a clown. I get it buddy, I get it.

Jackson, Brady and Jaxon loving the circus.

Patiently waited for the camel ride.

Pretty much what the 3 boys did after the circus for about 3 hours.
Total hams!

Brady wanted to look like Daddy as he worked in the attic!



2 comments:

Momma Bird said...

So glad the boys are doing well. Busy Busy! Just wanted to say don't worry about making plans with the school's team to only possibly switch at the last minute. As an SLP in the school system, we see it all the time and it is no big deal. It will actually be easier for the new school as the "old one" will have done all the initial work and the new one should be able to start right up where the "old one" left off.

On another note...any tips for dealing with insurance and requests for more visits? My oldest with his sensory and fine motor issues cant even hold a pencil, write his name, sit up for lessons, etc. but he school wont pick him up because OT cannot be a stand alone service so we go through our insurance. Wet get 20 visits a year but we go once a week! I asked about getting more, the appeal process, etc. and was told "there is nothing you can do" and "we can make a note of it" even when I asked for supervisor she said the same thing! So frustrating. They said there is nowhere to contact for appeals (I do not believe that). SO frustrating!

Annie and Jason said...

Hey Momma Bird, insurance for therapy is mind numbing sometimes. I wish I had a trade secret to share with you, but unfortunately, I don't. Jax is really delayed with fine motor and even WITH an IEP already in place, they only have him observed by an OT at school rather than getting officially therapy sessions. I didn't think that was right, so I had him tested at the hospital and had the therapist submit her test results with his IEP. The insurance agreed he wasn't covered enough and we get (I think) 24 sessions in a 6 month period approved, but we have to resubmit each 6 months with specific goals set. That's all I know so far of that particular process. Gosh, it doesn't ever seem fair does it? I have to FIGHT sometimes for Jax to having feeding therapy. It BOGGLES my mind! I wish you so much luck.