Tag Archives: aquatic therapy

Connor started walking!

I’ve been doing a terrible job of updating on Connor lately. This post on medical marijuana went viral a couple months ago, and then a few weeks ago, this post on Athens, Georgia was even bigger with more than 9k shares just on Facebook and 50k views. So if you have been wondering why I have been mostly absent from the blogosphere, it is because I was attempting to ride the wave of popularity for the rest of eternity. Also because I was being lazy.

IMG_0441Connor’s been doing really well in spite of the fact that we’ve been seeing a few more breakthrough seizures on the modified Atkins diet. He took his first independent steps in the pool at aquatic therapy and about a week later, he was standing at the ottoman and suddenly marched away getting in a good 4-5 steps. I wish I had a recording of my reaction–looking up and rubbing my eyes thinking I was seeing things.

He is doing amazing at putting puzzle pieces in the correct spots and putting objects into containers. He has long had a love of destruction, but lacked any desire whatsoever for reconstruction. I’ve now seen him, in the course of two separate evaluations, doing a most spectacular job of putting things away, leading me to conclude that he has been keeping this skill under wraps so that he won’t have to assist in cleaning his playroom.

He found his music therapist’s wooden train whistle  quite enjoyable so my mom bought him one, which led to another milestone of bringing us objects in order to get a desired result. He drops that whistle in our laps and makes us blow it until we are dizzy. He has also started bringing us books and dropping them in our laps, then climbing on the couch next to us to hear them read. He’s awesomely relentless. Yesterday I was dozing off when he dropped Little Blue Truck on my stomach. When I didn’t respond immediately, he plopped it on my face.

It’s so great to watch his cognitive growth. Although he still has no words, he is understanding more and more. We can read books and he will point to objects on the page if we ask. We were working on a puzzle and were missing the lion. I was able to verbally instruct him how to go get it from under a piece of furniture in the room. He’s really into cars and trucks and I’ve noticed that he typically plays with two at a time, always choosing two that are similar in scale, which I find very interesting. I find it positive that he notices differences like that, as if he knows that a Mustang will never be larger than a fire truck! I was excited the other day when he was playing with his wooden hammer to push balls through the hole of the toy and, for the first time, when the ball came back out of the toy, he picked it up and put back on top to repeat the process.

We are dealing with a bit of separation anxiety. He does well when I drop him at Mother’s Morning Out, but phasing me out of the room at music therapy isn’t going so smoothly. Yesterday he had an OT evaluation and I watched through the mirror as he banged on the door to get out and find me. I hope he never notices how boring I actually am.

He’s still eating more pureed food than I would like, but every so often he surprises me by coming over and wanting to eat off my plate. We were late to aquatic therapy once because I was so overjoyed he wanted to share my salmon at lunch one day.

He had a one-hour EEG last week which showed improvement from the last one he had months before we started the diet. Results were still abnormal, which isn’t unusual for TSC. He had spikes coming from a couple of places that have shown activity before, but his left occipital lobe was quiet in contrast to his last EEG. Also, there was no subclinical seizure activity this time around.

IMG_0168Several of the families that worked to try and pass HB 885 here in Georgia have been interviewed for a documentary on the efforts to pass the medical marijuana bill. The filmmakers also recently traveled to Colorado to meet with families that have relocated there to treat their kids. I don’t know if my portion will make the cut, as undoubtedly someone else will voice similar concerns much more eloquently, but I enjoyed the process.

In the meantime, two more Georgia families I met during the legislative session are getting ready to make the move out west to save their kids from unrelenting seizures. The three Georgia families I know that are already there are already experiencing tremendous results. Rep. Allen Peake, champion of HB 885, has started a non-profit called Journey of Hope to help these families get the funds to go. Personally, I hope Sen. Renee Unterman has donated considering she played a pivotal role in killing HB 885 and devastated so many families to tears. I look forward to the 2015 legislative session, though I probably won’t waste much time on my own state senator, Judson Hill, this time around due to this

Since we bought a zoo membership this year, I will leave you with some pics from our two trips so far this season.

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Go, Grandma!
Go, Grandma!

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First time on a carousel.
First time on a carousel.

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How I Do This.

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…as long as he cares that I’m there. Maybe not like David, newly adopted, possessive. But he looks for me at swimming, tearful, crawls up and grabs my legs, clutches my face with his wolverine claws, clings to the gate demanding I come get him. Maybe he doesn’t call me mama yet, or reach for me when someone else takes him. But if someone else has him and he’s fussing–sometimes…sometimes if I take him he stops.

Sometimes when I have something to blog, I jot it down on my phone’s notepad to remember it for later. But sometimes I jot it down somewhere else and forget about it. I just found this on my laptop. It must have been written this summer, since I mention a mild jealousy that my friends’ newly adopted son showed more outward attachment to them than we necessarily saw from Connor. It made me feel good to read this today because it helps me remember that he is continually progressing, the details of which can be missed when you’re with him every day. Still no “mama” per se, but he does think I’m increasingly awesome, so maybe when he just goes on with his muhmuhmuhmuhmuhmuh, he actually IS referring to me, but I’m far too great for just two syllables.

His attachment now borders on problematic. I have to hide from him during aquatic therapy so he doesn’t watch me and cry for me the whole time. The first time after I moved he kept looking for me in my usual spot. He chases me around the kitchen island and has nearly taken me out multiple times getting under my feet. He has sibling rivalry with the dishwasher because when I’m emptying or filling it, I am unable to pick him up. Sometimes he throws his drink around until I sit down with him and let him drink it on my lap. The last two times we left him with my parents, he wouldn’t eat until we got home. It’s a problem I love to have (minus the eating–sure hope that resolves before we take some long-awaited, adults-only trips next year). He pulls himself up at the kitchen table or couch — wherever we might be sitting — and does not like to be left alone in the playroom out of sight.

And he reaches out for me. He reaches out for me.

People ask, how do you do this? That’s how.

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“You’ll feel more rested if you get up at the same time every day.” LIES!

I’m having a terrible time keeping up with the blog now that I’m doing some other writing for meager pay to support my eBay habit. I’m trying, I swear! If I could just become a morning person, I could get so much more done. But almost 17 months of consistently getting up at 8 a.m. and I still can’t function properly until 10. Grover taunts me every morning with his chipper, go-getter attitude.

The big news is that Connor just started crawling the other day while we were in Blowing Rock, NC with my parents. He’s not doing it consistently, still doing a lot of commando crawling, but at least we know he can do it now. We are very excited. The cats are not. He’s also now demanding far too much attention after having Chris’ parents stay with us for the half a week leading up to the trip, and then another half week with my parents.

I think Connor would really enjoy having pet ducks in our backyard. Chris disagrees.
I think Connor would really enjoy having pet ducks from Blowing Rock in our backyard. Chris disagrees.
Swinging with Grandpa in Blowing Rock.
Swinging with Grandpa in Blowing Rock.
Meeting the giant doggie at Mast General Store in Boone, NC.
Meeting the giant doggie at Mast General Store in Boone, NC.
The dog makes a great rug.
The dog makes a great rug.

He also just added aquatic therapy to his regimen.

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We are so loving how attentive he is to what is going on around him these days. He had a delightful meeting with the Chick-fil-A cow recently, and also cheered up some not-so-enthusiastic waitstaff at Texas Roadhouse during their obligatory hourly line dance. His clapping and enthusiasm had the embarrassed, Man-I-really-need-the-money staff smiling.

I like ladies. I like music. This is some sweet line dancing.
I like ladies. I like music. This is some sweet line dancing.

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We had an appointment with his neurologist this morning and I requested we try name brand seizure meds (Trileptal and Keppra), in place of the generics since we continue to have breakthrough seizures. Many people swear by them as generics can vary in potency so much, so I’m hoping it makes the difference. I’m sure insurance will be delighted. But after they just sent me the private info of three people by accident…well, let’s just approve it, seeee (in gangster voice).

In other awesome news, as Connor was approved for the Katie Beckett Medicaid Deeming Waiver, we were then also able to apply for HIPP. which is a Medicaid program that helps pay your private insurance premiums in cases of serious health issues, as it is in their better interest to make sure you keep you private insurance, than lose it and resort to full Medicaid. We were approved, and this allows us a lot more income to put towards any other needs we want to meet for him. And my wine. I’m so thankful that Connor’s Early Intervention program people have been so good at making us aware of these programs. So if you have a kid in EI, make sure you have applied for Katie Beckett, and if you have done that, make sure you apply for HIPP (I don’t know what the variation is from state-to-state. I know we are lucky that such services are easily attainable here in Ga compared to what I hear about some other states, particularly in the midwest).

As for the house, I kid you not, we told our realtor toward the end of the month that we were taking it off the market July 31. We finally got an offer on July 27. So this house is under contract and we are under contract on our new house, as well. We will finally have a room we can dedicate to Connor’s mess–I mean, toys.

Don't feel bad! You've been a good house.
Don’t feel bad! You’ve been a good house.

I swear this has been the most humid Georgia summer of all time, but others have told me I’m insane and it’s always this bad. At any rate, I’m ready for fall and to wear my new scarf that my sister-in-law Donna made for me from Chris’ old shirts.

The King of Izod has some extra space in his closet now.
The King of Izod has some extra space in his closet now.

Also, two events I want to make sure TSC families are aware of in the area:

298465_187704037963818_1579148_nOn Saturday September 8, we are having a family bowling event. Cost is $10 per person, which includes shoes and unlimited bowling. Food will be provided. Details here.

On Thursday October 10, we are having an educational meeting on financial planning for your children with special needs. Details here.