Saturday, July 31, 2010
We just got back this afternoon from a whirlwind, 8-day trip to Ontario that included 2 flights, 4 hotel rooms, 1 rental van, countless hours in said van, too many meals in restaurants, and many, many hours spent with friends and family. I'm exhausted. And way behind. On blogging, on commenting, on voicemails and on emails.
Three good things have come about though that need to be followed up on ASAP:
1. Conductive Education in Halifax has another child enrolled with similar abilities as Ben that is interested in doing classes with us. That's exciting...just hope we can manage to coordinate our schedules!
2. Ben got his Botox appointment (for his hamstrings). It's on Aug 9th. I just hope they haven't given the appointement away because we haven't called back to confirm.
3. A good friend of mine who currently lives in Vietnam (She's South African and we originally met in 2001 when we both lived in Bermuda) is actually just a 2 1/2 hour drive away! I so hope we can manage to meet up while she's so close.
It's a long weekend here in Canada...so we have two whole days left to recover.
And to my bloggy friends. I AM reading your blogs...as much as I can anyways. Sorry for the lack of commenting, but I will be leaving comments shortly!
Wednesday, July 21, 2010
Tuesday, July 20, 2010
It was a great appointment considering it was from 12:30 to 3pm (yep, you guessed it...naptime). Ben was awesome. Fredericton is a 90-minute drive away for us and although he didn't nap on the way up, he did rest and I think that made all the difference in the world.
We met with the PT, OT and the Physiatrist. They were all awesome and I have no doubt that Ben is in the best hands when he's there. These people know what they are doing. And they are nice too. Love them.
My goal for this appointment was to get Ben on the list for Botox injections. I wanted them for his ankles / calves...they are just way tighter than they used to be. I also wanted some advice on what we need for AFO's / braces now since the ones we have are getting too small and probably aren't sufficient for his needs anymore.
In the end, they were more concerned with his hamstrings then his ankles. Which surprised me. I need to talk with his regular PT's to understand it more. Their recommendation is botox for the hamstrings and serial casting for the ankles / calves. And then of course, new braces after the casting is done.
I'm not sure when the botox appointment will be. There is quite a wait for the OR (like January 2011) if we do it under general anesthetic...which is just way too long. So we're going to do with it with oral anesthetic in September (hopefully). Casting starts in September too.
I'm still digesting all this information. It's alot to take in at just one appointment.
Sunday, July 18, 2010
Well....I immediately sent Janet a cheque and a photo of my boys. This is the photo I sent her. They are playing with a decorative garden frog from my Mom's garden.
And Janet just emailed me a photo of the finished product! It takes a few weeks to dry so I have a little while to wait before I get to see the original but I'm thrilled with the photo!
My favourite thing about the painting? If you look closely on Ben's shirt, just where over his heart, there is a small green CP awareness ribbon. Janet puts one somewhere in each of her paintings now. How cool is that? It brought tears to my eyes when she told me about it.
Thursday, July 15, 2010
I don't have the energy for a full-blown post on CE, but suffice to say that after 4 days of sessions (between 1.5 and 2.5 hours in length), I definitely feel that Ben has made progress. I don't feel that what he's been doing in his sessions is all that much different from a physio session, but I do think the intense (i.e. longer and frequent) sessions as well as a change of scenery (i.e. new place, new person, new tasks / toys) has made some difference.
Because the Halifax CE group is pretty new and Halifax is a fairly small centre, Ben did not participate in a camp or class. Instead he had one-on-one sessions with the Conductive Educator. I think he would really benefit from a class / camp. He is really motivated by other kids and I think that would be a huge plus for him. The next closest CE Centre is in Toronto and I am considering taking him there next summer to participate in a camp. It's not that big of a deal for us, since my husband's family is in that area and we would just tack another week on to our summer visit there.
Some improvements that I "think" I see:
1. Very much improved at pulling to stand. Ben has always pulled to stand by using his arms and upper body, instead of putting one foot flat and then rising onto that foot. He now puts his foot flat almost spontaneously and only needs a little assistance / prodding to get into standing. We will certainly be working on this more at home since he is doing so well with it.
2. Learned to use his hands more to get down to the floor (or even fall). Ben does not have the reflexes that typically-developing children have. Part of this week's work focused on having him "reach his hands to the floor" when getting down.
3. Climbing up ladders! We worked on climbing up and down ladders quite a bit. I'm not sure of the all of the benefits of this, but he did great at it! (I've loaded a video of him climbing below.)
4. Not so much on his toes when walking. I don't know why this is, but all of the sudden, he's walking WAY better in his walker. He's still on his toes, but his heels come down farther and more often.
5. Improved sitting. Sitting on his bum is still a challenge for Ben. He can do it, but it takes alot of effort and he still can't get into the position on his own. The w-sits very well and that's his preferred way to sit. This week we spent a lot of time working on "long sitting" - sitting with his legs straight out in front of him. To keep him occupied while sitting this way, he would blow bubbles. He could sit like this for at least 10 minutes.
6. Walking with canes. Ben tried walking with canes for the very first time today. He was very reluctant to try it but we managed to convince him eventually. He did really great. (See video below).
I think my personal feelings on CE are that it's not all that much different from Physio. I would really like to get him into a CE camp with kids his own age. I think the real reason that it works is due to the intensity of the sessions.
For more info on CE in Canada, check out the March of Dimes.
Video 2: Climbing!
Wednesday, July 14, 2010
Sunday, July 4, 2010
Janet is a painter. You can see her work here. All monies raised from selling her paintings go towards Hailey's therapies. Isn't that cool? What an awesome grandmother!
In her most recent post, Janet posted some paintings that she did OF Hailey. I personally think they are beautiful. Janet is currently trying to raise money for Hailey's Conductive Education fund. In order to do so, she is offering to paint a 16 X 20 canvas of your child for just $100!
I've already been in touch with her to get one done of Ben and Daniel. I can't wait to see how it turns out! And don't worry, I'll be sure to let you all know once it's done.
So...basically what I'm saying...is get your butts over to Painting for Hailey and get one for yourself!