Our Trip to ABR…
May 28, 2010 | Updates
We took a whirlwind trip to ABR in April. We caught the red eye flight (11:45 pm) from Salt Lake to Burlington, VT on a Friday evening. We arrived in Burlington about 11 am on Saturday. Then we rented a car and drove 3 hours to Montreal. We got there just in time to check into our hotel and take a quick nap before meeting with Leonid for Samuel’s evaluation at 8 pm that night. Whew!
The evaluation was good. Leonid saw a lot of good changes in Samuel that were encouraging. It always helps to have the evaluations because it tends to give me a good push to keep doing what we’re doing!
Sunday and Monday brought 3 hour training sessions where we were trained by Leonid himself (the inventor of ABR). What a treat! Listening to him talk always intrigues me as he is so knowledgeable about the body. We learned the new ball rolling technique and some ”old-style” exercises as well. The only down side was there was just too much information to fit into the 2 training sessions that we had so we were really rushed in the end.
Tuesday morning, we drove back to Burlington, VT and flew home - getting here about 11 pm. The trip was completely draining for me, but it was nice not to be gone for very long. Samuel did fine the entire time and slept on the red eye flight so I don’t think he suffered much on the trip. The only real excitement we had was the guy in the Burlington airport who claimed he “accidentally” forgot that he had 3 POCKET KNIVES in his carry on bag! What the?!! He was on our flight, of course. And the plane was so very, very tiny. We all had our plans mapped out of how we’d take him down if he tried anything funny :)! Luckily, the flight was uneventful.
We also had several flights where we walked right out to the plane and had to carry Samuel up the steps to get in. Quite the production, really. But I guess we chose an airport with not much traffic and, thus, smaller planes. And we only had a fe instances of extreme handicapped inaccessibility while in Montreal - one being the lady who told me I couldn’t take food from the breakfast buffet back to my room (where Tom was waiting - and starving - with Samuel). So, I went back upstairs…
got Samuel…
hauled him up a small flight of stairs to the buffet room…
ate my breakfast…
and then asked that same lady if she had any suggestions of how to get back since the room is completely inaccessible to those in wheelchairs.
The dropped jaw and lack of words on her part told me I’d made my point.
Otherwise, great trip…FINALLY! And again, what a treat to have Leonid train us himself!
Here’s to hoping we get a bunch of ABR hours in over the next 6 months and see even more great changes in Samuel!
Teresa
Um, where were we?
May 21, 2010 | Updates
My last post that actually had to do with our daily life was about Christmas. Ugh, it’s May! We have some catching up to do…
So here’s the quick version…
January was pretty boring as we filled out application after application for colleges and scholarships for Tanner.
February’s biggest event was Tanner being involved in the We the People competition. His class took 1st place in their district and 2nd in state (loosing by only 3 points). It was so fun to watch since most of the questions asked were over my head and all the answers the kids gave definitely were. Listening to them cite cases and quotes to back up their knowledge of our government was pretty humbling!
That same month, I caught cute pictures of Nathan sitting on the side of Samuel’s bed watching TV with him. So cute. Sometimes I find him IN Samuel’s bed ignoring Samuel’s flying arms and legs and simply enjoying being with his brother.
Until next time…
Teresa
BIG News!
May 13, 2010 | Updates
Well, Tanner is graduating in just a few weeks. I’ll be getting out the announcements hopefully today or tomorrow, but wanted to post them online as well. I can’t believe he’s old enough to graduate!
Family and friends can come to the graduation. They said there is a ton of room in the Spectrum. And, family and friends are invited to an openhouse that day from 4:30-6pm at our home. We’ll have some yummy food if you want to stop by.
Or, if you want to send him a note or card, I’m sure he’d love it (P.O. Box 319, Paradise, UT 84328).
He’s working on being ready to leave on his mission in August or September, so we don’t have too much longer before he’ll be gone for 2 whole years :(. Not sure what we’ll do without him!
CONGRATULATIONS TANNER!
Posted by admin @ 2:48 pm | 5 Comments
New Things with Samuel…
May 7, 2010 | Blogroll
Just a few random things I wanted to pass along about Samuel.
This past summer (yes, nearly a year ago), for 2 months, Samuel didn’t have any seizures - not one. I was thrilled thinking that they had mysteriously disappeared and hoping against hope that they would never return. But, a week before school started, the seizures came back.
I was completely boggled as to what could have caused them to return. We hadn’t changed food or meds or anything. The only thing I could figure was that he wasn’t in the sun as much as he had been the prior two months. So, I added 1500 IU’s of vitamin D3 to his daily diet and within a week, the seizures were GONE! Seriously gone.
I have since taken him off the vitamin D supplement twice for a few days each time and both times, the seizures have returned. In addition, after being on the supplement for 2 months, I had his blood drawn and his vitamin D levels checked and they were still just below the lowest acceptable range. So, for awhile, he’s getting 2500 IU’s a day until we get his levels where they should be and then we will just continue to give him a daily supplement of it because he clearly doesn’t get enough sun to get his daily dose of vitamin D. (We actually just had it checked the other day and he was on the high side of normal but only after bumping his dose up to 5000 IU’s a day for about 3 months. So, we’ve backed off a little and will keep checking periodically.)
But the seizures…we haven’t seen them since we started giving the supplement in September. Amazing that such a little thing could bring them under control. He is still on low doses of Keppra to help control them as well. But he has always been on that and we have always battled them. To say I am thrilled that they are gone is a massive understatement!
A prior post told about how Samuel has started laughing again, so I won’t touch on that much except to say that the return of his laughter came just after we began controlling his seizures with the vitamin D and just after he had a 6 month bout with “laughing seizures” or seizures that actually caused him to laugh. At the same time, he has been doing much better in school. I think the seizures were probably slowing him down a bit, but maybe also may have helped to bring his laugh back. I don’t know that we’ll ever know.
And last of all, Samuel can now recognize our house. Well, maybe he always could, but now he can laugh when he sees our house and does so every single time we pull into the driveway. Actually, he has gotten to the point that he recognizes where we are about a mile from home. So, I guess now I know that he knows where our house is. Either way, it’s a pretty cool thing to know.
That’s the short of things for now.
Love,
The Jewkes
Too Tired…
April 28, 2010 | Updates
I’m tired.
Really.
Really.
Tired.
The kind of tired that makes you tired just thinking about how tired you are. You know the kind I’m talking about…
Second, being so behind when we got back. I feel like I’ve been running for a week straight and I’m not any closer to being caught up than I was when we got home.
Third, our help being sick for the last 10 days. And now Samuel is coming down with a cold/cough and I’m a bit concerned about it. So, we’ll add a doctor’s visit to the list of things to do tomorrow.
Fourth, computers that decide not to work out of the blue and require extreme measures to fix them - along deadlines that all seem to show up at the same time - Medicaid annual reviews, college scholarship acceptance deadlines, quarterly payroll reports, April 15th.
Fifth, training a new employee to help care for Samuel when my sister leaves in just a week :(. This is a much larger part of my stress than I think I even realize. Having someone I can trust to care for Samuel is one of the biggest blessings I’ve had the last 5 years. I’m praying hard the new girl is exactly what I’m looking for.
Sixth, 5 kids. I love all of my kids. But, all of my kids love to talk - at.the.same.time. Most of the time I enjoy it. But sometimes…it makes my head hurt and incurs pleadings for bedtime.
Um, yea, this is pretty much how I feel…(minus the superhero part, of course).
Wesley filing 18 months worth of paperwork for me. (Not completely out of the kindness of his heart as he is working to earn something from it, but it’s saving my butt nonetheless.)
Samuel giggling when I do the new “ball rolling technique” that we learned at ABR on his chest. Who knew therapy could be fun?
Ben and I going on a “date” as we took a trip to the doctor for a tetnus shot and some antibiotics after he stepped on a rusty nail. (Some kids will do anything to get some alone time with their mom…just kidding.)
Tanner making me laugh out of the blue or doing tasks out in the cold without complaining because he knows I hate being out there.
Tom rubbing my back right between the shoulder blades where I apparently carry all my stress.
And days like yesterday when it was 73 degrees outside and I wore flip flops and a short sleeved shirt. (Today it snowed and was 33 degrees. It all would have made sense if yesterday was April Fool’s.)
And so, I’m thinking that tonight I will go to bed a little earlier because dragging myself out of bed tomorrow morning with less than my required amount of sleep - yet again - is just not in the picture.
But I’ll leave you with one more cute story before I go:
Yesterday we went through the McDonald’s drive thru and Nathan wanted a Happy Meal - with the toy - of course. He was hoping for another dragon. (It’s clear we do this way too often lately.) But all they had were hot wheels…until he discovered they also had Barbies! So, for the first time in my adult life, I requested a Happy Meal with a girl toy. And two minutes later, I was ripping open the Barbie for my 3-year-old who has no sisters and no dolls. He is completely obsessed with Buzz Lightyear and Superman. And they each have their own tag lines…
Superman: “Up, up AND AWAY!”
Buzz: “To infinity…AND BEYOND!”
It wasn’t but a few seconds before Nathan gave Barbie a tag line of her own. His Barbie is dressed as a Mermaid and her new tag line follows the tone and inflection of Buzz’s just with different words…
Barbie: “To swim…IN THE WATER!”
You can give a boy a doll, but you can’t make him act like a girl. Nathan’s Barbie is a superhero (and Buzz’s girlfriend, apparently). I’m thinking next time, I’ll get him Electra!
Until then…
