Hello blog. Poor, neglected blog. If only your owner would stop sleeping at night and start typing. I mean, seriously, how much sleep do I really need? Oh wait, that's right. I need a lot. Just ask the husband. This girl isn't exactly a ball of sunshine on less than 6 hours of sleep. I don't think anyone in this household really is for that matter. For real. Don't even look at me like that Jason. You know what I'm talking about!
Let's be honest. Most anyone that reads this is also friends with me on Facebook. So, for the most part you know what's been going on at la casa Smith. I haven't spilled the beans on everything, but you've been clued in to most of it. At least the pictures anyways. I feel like I can get away with not posting as much if I keep you occupied with pics of the kiddo. He's very distracting that way. ;)
Let's see, where did we leave off? Oh yes, October. So, I'm only 7 months behind. It could be worse - I haven't touched the baby book in FOREVER! I'd say I don't even know where it is, but I ran across it and it's blank pages last week while I was going through the closet looking for all of documentation Jackson related. I keep saying it, but dang I really need to get all that organized. It's only going to get worse. At least it's all contained in one area. Much better than it's prior status of "who the hell knows where it is".
I'm going to try and give you a reader's digest version of the past 7 months and try to expand with more details later. Who the heck am I kidding? I should probably under-promise and say this is all you're going to get. That way, if I do decide to neglect other things like the laundry and housework in order to blog, you'll be pleasantly surprised. Yup, that's the game plan. And go!
Hmmmm, drawing a blank here.........when am I ever going to learn that my ability to remember things is horrid?
Here's the highlights from November through May (in whatever order I just happen to remember it all happening):
- Jackson was finally approved for the Medicaid Waiver program. Ya-freaking-hoo! So excited about this! What does this mean? Jackson now qualifies for Medicaid as a secondary insurance. We are extremely grateful that Jason's job has great health insurance coverage but this added assistance is even more of a blessing. However, this also means more opportunities for billing errors. But, that's my jam. I live to point out when they incorrectly bill something, so BRING IT ON!
- Jackson has been adjusting well to the new TLSO and HKAFOs. I know I talked about them already but this TLSO seems so much more comfortable than his first one. We go back for a follow up in a couple months to see how well it's doing at keeping his scoliosis from worsening. He is still primarily using his HKAFOs during PT sessions. We are borrowing a reverse walker from the TRAID closet in Rochester, but Jax has no real desire yet to attempt walking. He's still learning to stand. And we're okay with that. He needs to build up some more muscle tone before he's able to put all the pieces together. In the meantime, we're thinking about trying out a gait trainer to see if that will help with some core strength.
- We had lots of fun celebrating the holidays with family and friends - Thanksgiving, Christmas, Valentine's Day, Easter. You name it, we celebrated it. ;) And pictures were taken, so you know it happened.
- Jackson had a follow-up with his ophthalmologist and needed to get a new pair of glasses. The doc said that his prescription changed. It didn't get worse, didn't get better. Just changed. Unfortunately, he wasn't eligible for new glasses yet through insurance, so those came out of pocket. But what are you going to do, right? ;)
- Jackson has been doing really well in therapy and preschool. He's been using a lot more words both at school and at home. He loves, loves, loves to tell us what cars he sees. His favorite game in the parking lot of Wegmans is to point to every car and tell us what it is. Let me tell you, if you haven't heard this kid say Mitsubishi or Chevrolet, you are missing out. Because it's adorable! He can count on his own to 10 pretty regularly and can sometimes go up to 20. And he knows all of his letters and numbers. Another easy way to distract him at doctors appointments, restaurants, etc is to just start writing letters/numbers asking him which one it is. Works every time! And we've def. entered the "What's This?" phase - hard core.
- The last time we were at the Kirch Center we brought up Jackson's auditory defensiveness. We had thought it would've been something that he'd have grown out of by now, but it only seemed to be getting worse. Loud, sudden noises always caused him to cry - dog barking, baby crying, loud public places, etc, etc, etc. We had him evaluated by Strong OT for sensory processing disorder and it was found that he does display the typical signs of a person that has issues with sensory processing. We started on a 12 week therapeutic listening program with Strong OT and it was very successful. We were given a CD player, specific headphones, and a CD that had modulated tracks on it (parts of the song were randomly made louder or softer throughout the entire CD) and Jackson was supposed to listen to the CD twice a day for 30 minutes each time. Not an easy task. Every two weeks, we'd switch to a new CD. We've seen some great improvements. He's been to several functions with large, loud crowds and he was able to enjoy himself and not cry. He also doesn't cry much when the dog barks anymore. I'd love to go into this more later and this is the one thing that I probably will as there was so much more to this that really helped Jackson out. His OT at Strong has also been assisting us with some feeding therapy too. Good times!
- We had our last IFSP meeting. :'( Jackson will age out of EI at the end of this month when he turns 3. <----Seriously!?! I can't believe he is going to be 3! Crazy!!! He will stay in EI through the summer and then transition into Marcus Whitman's CPSE program (more on that later). I have all the reports from this too. Long story, short - he's been making steady progress on all of his goals, but is still considered to be delayed across all fronts - PT, OT, Speech, Spec Ed. This is nothing that surprises us and we're totally fine with continuing on his current plan. We're extremely proud of the progress that he's made in the past 6 months and can't wait to see what the next few months will hold.
- Speaking of CPSE, we had our meeting with the school district last week. Jackson qualified for services with no problems. He was evaluated earlier in the day and as expected was considered developmentally delayed for all aspects. The plan for the fall will be:
- Continuing at Happiness House preschool, but moving from the Purple Room to the Yellow Room. It's an integrated classroom and will be 5 half-days a week. While he's at school, he will be receiving his therapy - PT three times a week, OT two times a week and Speech two times a week. So, that's the main difference. Instead of the home-based therapy he receives now, he'll be receiving it at school. That, and he'll be followed by the school district and not EI.
- We'll also be transitioning from our current Service Coordinator whom we love to SKIP of NY for Medicaid Service Coordination. They were extremely helpful in getting us the Medicaid Waiver, so I hope that level of service continues. Because if it doesn't, you can bet your bottom dollar I'll be finding someone new. Been there, not doing that again!
- Jackson has been attending Rookies practice this Spring. For the most part, he's very interested in participating. He loves to throw the ball and javelin and chase his buddies around while they race. He even got to try out one of the racing chairs last week! He also surprised us by actually doing the warm-up exercises with the group. Usually he will just hang out and watch everyone do them. But this time around he was all in! He's had some great couches this time around. I hope some of those students come back!
- We've snuck in some fun things here and there too! We went to the zoo in November. That's right, I said November. We were already in the city for some appointments and it was a pretty decent day out so we stopped in and killed some time there. It was the best time to go. We pretty much had the place to ourselves and because it was a little cooler, a lot of the animals were actually outside and active. We played outside and got to actually go sledding without it being 30 below zero with wicked wind chills. That was a lot of fun! We baked cookies, played with our new toys we got for Christmas, watched movies, got hair cuts. We even got in some indoor water play. We went to an adaptive sports expo where Jackson got to try out basketball, soccer and golf. He also got to meet Spikes - the Red Wings mascot. We checked out Jackson's buddy Chase play basketball when his wheelchair basketball team took on the Canandaigua Bankers. Jackson had a blast - but was a little irritated when we wouldn't let him go out and play too. Let's see, what else? Oh, we went to a lovely spaghetti dinner fundraiser for Jackson's other buddy Amanda. She raised tons of money for the Rookies team as part of her senior project! We also went away to Syracuse for a weekend and went swimming at the hotel and shopping at the mall. Fun, fun! And birthday party season has begun too!
- And the last thing I'm going to mention (and can remember without pulling out the planner) is Jackson's newest buddy - Karen! We signed Jackson up for a running buddy through whoIrun4.com. IR4 matches families with special needs members to runners and athletes who will dedicate their workouts, races and miles to their buddy. It's a great group of people that provide motivation, support and friendship. Jackson and his buddy Karen take turns posting the things that they've done for each other - like Karen completing her fitness test with an amazing score and Jackson doing his stretches at Rookies practice. I've got more I want to post about this too! But, it's almost time for bed. If I don't go soon, you all know what will happen. Mrs. Cranky Ass in the morning. Ain't nobody got time for dat!
I know as soon as I hit publish and share this with you all I'll think of 10 more things I wanted to say. Because that's how it goes. Maybe tomorrow I'll do just a post of pics to help counteract all of the reading you just had to do. Guess you'll have to tune in to find out.
Peace and sweet dreams!
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