Tag Archives: grandparents

“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.

photo-92

photo-93

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.

photo-89

photo-90

photo-91

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.

 

Magic Mike, wi fi, iPhones and other such things we can’t live without…

People Magazine’s Sexiest Man Alive edition arrived the other day. Channing Tatum. Thoughts, ladies? I have to say I wasn’t really a fan until Magic Mike. That is embarrassing for me to admit because Magic Mike is one of the dumbest movies of 2012. Plus, and I hesitate to say this as a mom, but it wasn’t gratuitous enough. I mean it’s a movie about strippers clearly targeted at women wanting a girl’s night out, the majority of which, I assume, consumed alcohol beforehand. That’s what everyone did right? We did. And we went to a matinee. Yet, I think we can all agree that too many chances were lost with the other strippers. Joe Manganiello and the dude from White Collar were wasted opportunites. Just saying. I haven’t read the article yet. I don’t want him to ruin it by talking.

Chris, Connor and I spent the weekend with my parents at a cabin in Fort Mountain State Park in North Georgia. My parents do the whole cabin thing a little differently than Chris and I do when we go to the mountains with friends. Our cabins typically come equipped with pool tables or air hockey, a jacuzzi, satellite TV and more bear themed paraphernalia than you can stuff in an 18-wheeler. You know, just enough away from civilization without being too Deliverance about it. My parents like to roll rustic. No air hockey, a few basic channels and GASP no wifi or even much of a cell network period. I suppose I can’t deny it anymore. I’m a hardcore addict to my phone. I’m not like those freaks on MTV that sleep with their phone or anything (that’s ridiculous, clearly the bedside table is close enough) but take away my wi fi and 3G (yup I said 3G, lame Verizon) and you’ll find me desperately pressed against a cold window trying to simultaneously update my Facebook and Instagram feeds. We went into the town of Blue Ridge for the afternoon and I was like a crack fiend in a police evidence storage unit except instead of drugs I was getting high off access to technology. I’ve always been a fan of instant gratification, but the smart phone has ruined me. If I take a picture that I want to post, it’s not sufficient to post it tomorrow….I have to post it NOW! Some of you might be thinking, “Well that’s strange. She NEVER answers her phone when I CALL.” Yes, that’s right. I’m part of the new school of anti-talking phone addicts. I don’t want to TALK to you. But if you wanna text or Facebook me, I’m down. I’ve never been a phone person, even as a teenager. I remember how badly I wanted my own phone as a kid. I loved that phone, too. I was 11, and it was one of those phones with the giant buttons. I used it to call the theater for movie times. I wasn’t planning to go to the movies, I just wanted to dial the big buttons without actually talking to anyone. I’m pretty sure once people read this they won’t be trying to call me anymore anyway.

Maverick in Blue Ridge. Goose already bailed.

Something else I noticed at the cabin was that even though Connor is about to be 8 months old, I still can’t get used to my parents being Grandma and Grandpa. I still catch myself referring to them as Mom and Dad on Connor’s behalf, as if he’s my brother and not my son. “Oh, look what Da- I mean, Grandpa is doing!” I figure I’ll be able to comprehend that my parents are  grandparents just as soon as I start comprehending that I’m responsible for the well-being of a small human.

Connor’s eye rolling incidents continue. We’re pretty sick of them at this point, especially since we don’t have confirmation of what they are. I’m thinking about calling the neurologist this week and requesting a take home 24 hour EEG, something that the EEG tech mentioned was a possibility last time since Connor declines to have these episodes when electrodes are on his head. Even though he is doing well in spite of them, I’m tired of wondering and obsessing. I look at the clock every so often and think things like, “It’s 2:16. Can we make it to the end of the day without any?” Then I get over eager to get him to sleep at bedtime so I can officially end the count of episodes for the day. Since these started he was having 0-2 a day. Very rarely did he have 0, sometimes 2, and usually 1. Just the last couple weeks we started seeing more 0 days, which is good, but the 2 days increased and suddenly he had three random days with three. WTF? Yet, many of the events are shorter, so I guess it’s sort of a tradeoff? It’s so irritating.

Anyway, I want to share some links to some other TSC blogs I follow. I encourage you to check them out as long as reading mine remains your priority. 🙂 haha. Every individual’s experience with TSC is different, so you can read and share your experiences with others in the TSC community and have stories that are nothing alike. I interact with adults who have it and are doing very well, living normal lives (not to diminish the medical issues they do have to contend with. It’s a disease you must always remain watchful of), but there are those that need a lot of care because they are so severely afflicted. And it’s always in the back of my mind that though we assume Connor is a spontaneous mutation, as are 2/3 of TSC cases, without genetic testing, I cannot say with certainty that I don’t have it myself.

My friend Wendi just started her blog. She was the first person in the TSC community we met and talked to. When we found out about Connor’s TSC and that he was facing brain surgery, we came across her son Hudson’s experience on a couple websites and immediately contacted her with questions. Check it out here.

Another one is my friend Tina. I’ve actually never met Tina. She lives in California and we met online through our wordpress blogs, then FB. Check her out here.

One last blog for now. I do not know this family, but they appear in some of the TSC literature, so Facebook stalker that I am, I located Laurisa’s blog. Find it here.

And if you’re not sick of clicking links yet, please check out this video that discusses some of the reasons that TSC research can benefit everyone, not just those with TSC. Click here.