Saturday, June 30, 2012

Collin's Favorite Things: Summer Edition

All the cool blogs do product round-ups from time to time, and Collin felt like his should be no exception. So here are Collin's top 5 must-haves for summer:

1. Because he's so sensitive to light, Collin doesn't go anywhere without his Julbo sunglasses. They stay on his head without needing a strap, but they don't squeeze or hurt. They have no right-side-up, which simplifies things for the younger crowd, and they look very, very cool. Thirty-plus dollars seems like a lot to spend on sunglasses for a 3 year-old, but they have been worth every penny (of Nana and Grandad's money - thanks guys!). We've been using the heck out of them for 3 months and they still look like new.

2. Another thing that goes everywhere with us is Collin's iPad. It's great for afternoons that are too hot to be outside and makes his stander time or tummy time more bearable. His favorite app currently is called Baby Rattle - 123. Personally, I think it's pretty freaky. The music is weird and ominous and it makes outer-space noises when it switches screens. Whenever Collin touches the screen, another number appears (sequentially, from 1 to 10) and a very serious, echoey female voice says the number. When he gets to 10, he gets a round of applause. All the while, a picture of a sun bounces slowly around the screen. Bizarre. But Collin loves it. Loves. It.

3. We've got to protect that strawberries-and-cream complexion, but we live close to one of the more awesome pools on the face of the earth and Collin is a water baby, so we use a lot of Kiss My Face SPF 30 Sun Spray Oil.  Nearly every sunscreen we've ever tried has made Collin break out in a nasty-looking rash, but this one is gentle and natural enough that we've had no problems at all. And since it's oil-based, we don't have to worry about it interfering with his ketogenic diet if he absorbs it through his skin (that really does happen).

4.  One of our best buys this year (and maybe ever) was this camp chair that I found in the Walgreens seasonal aisle for $9.99. With Collin's low tone, it is extremely difficult to find good seating options for him, especially options that are easy to transport. He sits wonderfully in this little beauty - it has just enough of a bucket seat and just enough head support to keep him in a good position for a reasonable period of time. And all we have to do is fold it up, stick it in its carrying bag, and throw it over our shoulder.

5. If you ask Collin, no summer is complete without muscle tees. And you can see why. Check out those guns. If you've got it, flaunt it, right?

Friday, June 22, 2012

Talk About a Milestone

Today marks two years since Collin's seizures stopped. He has not taken an anti-seizure drug during that time.

It's something that, given Collin's start in life, seemed unlikely to say the least. But here we are, with a healthy, happy 3 year-old whose seizures are fully controlled by the food he eats, and we can't stop thanking God for it. If it's not a miracle, it's pretty dang close.

In honor of his special day, Collin requests that you do something strictly fun or eat something purely delicious today and enjoy it fully. Our day will consist of swimming, cherries, cuddles, books, friends, and more swimming. And probably lots of smiling.

Friday, June 15, 2012

Ride 'Em Cowboy!

This week was Collin's first time actually riding Fauna at hippotherapy. He is hardly supported at all in the saddle, so he has to work very hard and hold up his own head even though it has the added weight of a (snazzy) helmet on it. This week, he was able to ride for 15 whole minutes with only one break! I was surprised that he made it that long and can't wait to watch him improve!

Collin's First Time Riding Fauna from Annie Kratzsch on Vimeo.

Tuesday, June 12, 2012


At our last appointment, Dr. Awesome had recommended that Collin see a pediatric orthopedist since tone as low as his can cause various issues and because we want him to be in as good a position as possible to pursue standing and walking since he seems to have the desire.

Last Friday, we got in with the physician Dr. Awesome referred us to. He was nice enough and asked lots of questions about Collin. He noted that Collin's hamstrings are tight and his joints are hyperflexible, both things one would expect in a child with low tone. Then he took a baseline xray to check his hips. We had had an xray back in 2010 and everything checked out fine, but the doctor felt like this one showed some dysplasia in Collin's right hip. This means that his right femur isn't fitting quite right into his right hip socket. Since it wasn't there in 2010 and seemed to be there on this xray, the doctor felt that this is a developing condition. He wants us to come back in 3 months and that if it gets any worse, we'll need to do surgery right away.

Whoa whoa whoa.

Collin's right leg is the one he does the best job bearing weight on. It's the one he steps with first and the one he kicks with the most. It is totally functional and he shows no signs of pain. That doesn't seem like a situation that would warrant surgery.

I asked what might have caused this and what we could do to help it.

He basically answered nothing and nothing. It's developing just because and the only answer would be surgery (he's an orthopedic surgeon). Being in the stander more has no effect (WHAT?!). His muscles on the outside of his hips could be weak (oh really?!), which would allow the hip to slip outward, but with his low tone, there's probably nothing we could do about that. Says he.

I know not all medical doctors are like this because we have encountered several along the way who are very open minded and critically thinking when it comes to prevention and treatment. But it doesn't take too many appointments like this to make you feel justified in a bit of stereotyping. (Anyone remember Dr. Snarky suggesting a tracheostomy and ventilator because of Collin's sleep apnea?)

He did end up sending us home with a brace for Collin to wear at night that holds his legs in a frog position to direct his femur head into the hip socket. But the doctor didn't seem particularly hopeful that it would really do anything and said that if Collin doesn't tolerate it well to just forget about it. (Luckily, Collin has been sleeping GREAT in it, because I admit that after seeing him in it I cried a little bit over the miserable state of his sleep situation - BiPAP post to follow soon.)

Luckily, we have a wonderful team of therapists I've been able to talk to since then who heartily agree with Kyle and me that there is NO WAY we would consider surgery for possible slight hip dysplasia any time soon and helped us come up with a plan to get him standing more (which many studies show does help to form the hip sockets), strengthen his hip and butt muscles, and stretch some places that could be pulling him out of whack. I also had a super interesting and helpful conversation with Sky Medical Inc. (designers of the TAOS walker), who explained in detail the mechanics behind Collin's hip and had some great, practical suggestions that we can implement everyday.

I don't want to give the impression that I didn't like this doctor. He was a good listener and he seemed to genuinely care about Collin's well being. I just don't agree with his approach. It will be good to have his expertise on Team Collin and we'll definitely consider what he has to say, but I can guarantee we won't be rushing into surgery for this issue.

Tuesday, June 5, 2012

A Wonderful Trip

Last week, we took an incredible trip to the east coast to visit friends and family. We had contemplated it around the same time last year, but then Collin retched for five months and we changed our minds. This year's trip, though, went even better than we had hoped. Collin was truly fantastic almost the entire time (there was one I'm-too-wound-up-to-go-to-sleep night). He stuck with his potty routine, took naps, never shut down like he sometimes does in new or stressful situations, and really just seemed to enjoy himself the whole time.  We had the perfect mix of sight-seeing and relaxing, both in Philadelphia, where we visited Uncle Tim, Aunt Jeanne, and Cousin Elise, and in Maryland, where we stayed with our special friends the Clendenins and also visited with other almost-family friends.

One of my personal favorite experiences from the entire trip was watching the Clendenin girls with Collin. At 16, 14, and 12, they could easily have chosen to do other things with their time, but instead there was usually at least one by his side, and sometimes all three at once. They never acted remotely uncomfortable, asked all of the right questions, and adapted to his needs and preferences beautifully. By the end of the four days, they knew his cues and would come get me when Collin needed to go to the potty. There are few things I love more than watching other people love Collin, and they loved him well.

Here are a few highlights:

One of the coolest things we saw: Longwood Gardens
Collin listening to a fountain at Longwood Gardens
Collin's first slip-n-slide!

The slip-n-slide guys congratulating each other.
Our favorite bakery: Isgro's in South Philly
Collin at Mama's favorite monument.
Taking a break on the porch of the
Lincoln Memorial.
Collin loved the fountains at the WWII Memorial.
Couldn't quite fit the Washington Monument.
One afternoon we had an impromptu
sombrero party.
This is how Collin spent a lot of his time
at the Clendenin house.