Sunday, October 28, 2007

The Bumbo: Parental Intelligence Required

In various posts, you've seen Soren sitting in this great seat. It's called a Bumbo.

It's actually meant for babies once they can hold their head up. However, Physical and Occupational Therapists of Special Needs Kids have been using them because they position bodies really well.

When we first got it for Soren, he hated it because he had to use his neck and trunk to sit up. But then as his strength grew, his tolerance for it grew. Now he can sit in it for an hour to two hours.

The thing is, the Bumbo is being recalled. Why? Because parents are putting the Bumbo on tables, counters, chairs, etc. and leaving the room. The children, being children, then takes headers out of the Bumbo and onto the floor. Now, if the seat was simply on the floor, as it should be, the child would only be taking a minor tumble. But from on top of a table, this ends up being a big fall.

I know from experience that the folks at Bumbo specifically put in a note telling parents not to do this (not that parents should need to be told). But these parents are claiming that there are photos provided by the company of kids in the seats on tables, etc. And while this may be true, parents must then take responsibility to NOT BE FRICKIN' DING-DONGS!!!!!

This is a great product for typical and special needs kids. It makes me sad and angry that these parents don't have the common sense to use it properly. And then, when they don't, they don't take responsibility for their poor parenting choice. They blame it on the product!

Well, I'm just here to say the product, if properly used, is really wonderful. For us, it's a great way to sit Soren up. I actually sent it to Soren's school for his picture day so he could sit properly. They ended up using it for every kid in the class who needed it. It worked so well, they bought some for the class.

And it's portable! We went to the park today for a pumpkin carving party. I set Soren in the chair (ON THE GROUND) and we decorated pumpkins. He was able to sit up, look around, and be as social as he can be. He wasn't flat on his back, not part of the party. And since it's not a "special needs product" it doesn't draw attention to itself.

So that's my rant, my plea. Don't let this product be recalled. It's simple. It's harmless. It's needed for many children, and let's face it, they're all special.


Friday, October 26, 2007

Karis Update

I was emailed a note from my cousin Brad on Karis' surgery. He said, "Everything went according to plan. It took a couple of hours. Now she has a cut below her left armpit and on the left side of her neck. Karis has been feeling pain and is very grumpy after the surgery. We keep praying for no infections. Christy [Karis' mom] is staying with her overnight in the hospital, and I came home since we didn't have double accommodations. The VNS device will be activated in a couple of weeks by her neurologist. The first step was just to get it implanted with no infection."

Christy then sent a further update when she and Karis got home. "We recently arrived home from the hospital. We had a rough night, with Karis waking up every couple hours crying (and even when she was sleeping, the stupid monitor alarms kept going off for random reasons and waking me up.) But this morning she has been fine, no crying and not even any pain medication. The trickiest thing is that we can't pick her up under her arms for several days, so we don't hurt the incision. The device is not turned on yet. We have to wait 2 weeks to make sure there is no infection or problem, and then go to her neurologist and he will turn it on and adjust the level. So we are praying all will go well. Now we are just trying to recover some sleep."

They thank you for all your prayers and well-wishes!


Tuesday, October 23, 2007

Prayers for Soren's Cousin Karis

Karis Keating needs your prayers. She is the daughter of my cousin Brad and she also has Epilepsy. I've written about her before and that the doctors do not know about a genetic link between their conditions. Karis, like Soren, has struggled with seizures. And tomorrow she will go in for surgery to try and gain control.

Tomorrow afternoon, Karis will have a Vagus Nerve Stimulator implanted in her neck. The VNS is like a pacemaker for the brain. It sends pulses to try and stop the seizures before they become full blown. Karis needs your good thoughts and prayers as she goes through the procedure, which will hopefully result in seizure control.

Thank you all!


Friday, October 19, 2007

Noah's Ark at The Skirball Center

Soren and Moira had the day off from school today so we went to the Noah's Ark exhibit at The Skirball Center. It was amazing. It's bascially this interactive play place for kids. There are things to climb on, wheels to spin, cranks to turn, things to touch, and a craft project.

I'd like to say that Soren had a great time, but today was a day when it overwhelmed him. There was a lot of noise and tons to look at, so I can't blame him. Still, on another day, I could see him totally digging it. He did complete the craft project with me, which was nice.

Moira, on the other hand, had a blast. We were there for an hour and a half and she could have stayed longer. Regardless of Soren's reaction, if you have a special needs kid or a typical kid, I would totally recommend it. The space is all wheelchair accessible (granted, if your child can walk and climb, there are a few more things to do). But it's easy to get around and quite inviting.

The staff was great getting kids involved in stuff. They even have fake poop to scoop. That cracked me up. But that's the reality of the ark. At one point, they called a musical circle time where we all got instruments and played games. This is when Soren shut down completely. Rather typical for him (well, not typical typical, but you know what I mean). I got him out of his seat, sat with him on the floor, and he was bucking like a bronco into my chest plate because of the noise. Then he conked out and slumped over through 95% of the activity. At the end, he woke up and actually tolerated me hitting his hands on the drum.

But really, if you're here in L.A., you should go. And take your time. There is more to see than you realize. The animals are all made out of cool, recyclable materials. It's fun to see what they did. I have no idea if it's a permanent exhibit. You have to get reservations ahead of time to enter. You can do this online or by phone. I had Soren touching and doing various things so it was a stimulating learning experience (albeit a frustrating one). He talked all the way home. Probably saying, "What the hey was that, Mom!" But still, better to get a reaction, even if it's a negative one.


Thursday, October 11, 2007

Catching Up!

Whew! It's been a busy time. I'm sorry I haven't posted in a bit. My 20 year high school reunion is this weekend and I'm on the committee, so I've had that. Then Soren's 2nd IEP was last Friday, so I had to prepare his binder. And Soren's been having a bit of a rough time with seizures. So, finally, I'm here to catch you up on all of that (well, not my reunion, though that's been quite a to-do!).

The IEP went VERY well. We had our advocate there, which was really good because, as a parent, it's hard to be objective and think of all the questions you should ask. I had put Soren's binder of information together. That was much easier than last time, but still time consuming. I even wondered whether I should bother. Last year, nobody knew Soren. This year we were just trying to get him to continue with the same services.

But, as usual, I'm glad I did the binder. While they had all the PT and OT reports, I have been keeping a log of Soren's medical stuff (testing, seizures) so I was able to give them that update. And then there was his Feeding Therapy Report, which they didn't have because it isn't one of their services. It's paid for by the Regional Center. So it was good to be prepared.

We got everything Soren needed. Since they now know him well, we were able to set realistic goals for his progress. It all went exactly as I'd hoped.

As for Soren's seizures, last Thursday he had two, then Friday had one, Saturday two, Sunday one, Monday one. So it's been a roller coaster. They've only been Tonic seizures. And they seem to be knocking him out for less time. The Friday of Soren's IEP, he had a seizure in the morning, but then went to school and had no others. We haven't had to give him Diastat because he hasn't been looping. Still, it puts me on edge. He (knock wood) hasn't had any seizures since Monday.

Soren also had his 4 year pediatric check up yesterday. Besides his brain, this kid is healthy is a horse. Good heart, good lungs, growing (and growing, and growing).

Next week (after the reunion is done) I begin to tackle new Soren projects--getting ramps for the house, getting the van retro-fitted for a wheelchair, getting his tests off to different hospitals, getting him into the Clobazam study. Whew!

So I'm going to whoop it up this weekend to prepare for my next battles.


Monday, October 01, 2007

20 Days

As I noted earlier, after Soren's last round of seizures on September 8th, we increased his evening dose of Zonegran. We then went 20 days without seizures. I commented to Aaron about this. Shoulda known better, hunh?

Saturday morning, when Aaron went to check on Soren, he was really pokey. He was sleeping WAY past his usual breakfast time. And sure enough, when I finally got him up, he had a seizure during breakfast. Thus, we are quite confident that he had a seizure before Aaron went in Soren's room.

So once again, we had to give him Diastat. And then we increased his morning dose of Zonegran the next day. That brings him back up to the original 50 mgs twice a day that he was on when we first started the Lamictal. Let's see if that does the trick.

If not, we may check out a drug called Clobazam. It's not approved here in the US (it is in other countries), but LA Children's Hospital is doing a study on it. Soren may be a candidate, so we're going to give a call.

Clobazam is a derivative of Diazapam, which is the drug in Diastat. Diazapam is commonly known as Valium. The problem with Diazapam and thus Diastat is that a tolerance can be built to the drug. Thus, it can't be used every day because it loses its efficasy.

However, in Clobazam, part of its "derivative" nature is that they have removed this tolerance-building element. That's good! The other good thing is that kids who respond well to Diazapam tend to respond well to Clobazam. Soren responds great to Diazapam, so if he's a candidate, this may be a new option for him.

On another note, I want to thank everyone who has been donating money to Soren's Fund. I don't know if it's because it was his birthday or just because everyone is wonderfully generous. Either way, the money is coming in VERY handy for this next trip to the DR. Our funds are running low and every little bit (or big bit!) helps!