Monday, March 16, 2009

Day Eleven – Prayer Request

It's been a rough day.

At the end of last week, I noticed Elijah do some startles right before he woke up in the chamber. I didn't think too much of it at the time. It seemed that Elijah was lying on me a bit cock-eyed and so I thought he just felt like he was falling and startled himself awake (we've all experienced that haven't we?). But then, he did it again today and I freaked out. It doesn't seem right that he'd keep doing this while we're in the chamber (this is the third time) and I'm afraid that what I witnessed were seizures. My mommy radar is going off.

Seizures terrify me. It's kind of my worst nightmare. Elijah isn't acting any different and seems to be completely fine. That doesn't mean that we aren't taking this seriously. We are. Andy and I have been talking on the phone a lot today trying to figure out what to do. At this point, we're postponing any further hyperbaric treatments, but will be continuing with the physical, occupational, and speech therapy. I'll be watching Eli like a hawk.

I've been feeling so stressed, worried that we've done the wrong thing for Elijah. Then I remind myself that HBOT has been good for Elijah. He's made so many positive changes and he's still making positive changes. He's still splashing in the tub with his hands and seems generally happy. Other than those little twitches, he seems to be our same happy boy. Please, please, please pray for us. I'm so worried about seizures. Still not positive that is what happened, but I need to trust my gut and gut tells me something isn't quite right. It seems that what Elijah is experiencing is most likely a result of oxygen toxicity. By taking away the oxygen, we shouldn't see anything else that looks like seizures. Pray for our little man.

This isn't life threatening and Elijah seems completely fine. It's been a bad day and we'd really appreciate your prayers. Please pray for our health and safety, especially for Elijah. He also seems to be fighting off something and has a bit of a runny nose (the kid has NEVER had a cold). The odd twitches I saw in the chamber could also be a result of him fighting off some sort of a cold. I've heard children with seizure history can have more seizures or start having seizures during an illness. Argh. I am so sick of worrying.

I do still believe in the effectiveness of HBOT and I hope I don't scare anyone off from trying it. I think the gains Elijah has received from the therapy are priceless and I don't think it has harmed him. He has done startles while waking at times before we ever did HBOT, so it's possible that those were also seizures. It's just so hard to know sometimes, but I think it's important to follow our gut instincts. Oxygen is great, but too much oxygen can be not so great. It's important to pay attention to the cues of your child and we're trying so hard to do the right thing. Why does being a parent have to give me high blood pressure?!

Anyway, I know I've asked about five times already, but I'd really appreciate the prayers. I know that God is watching out for us and that everything will be okay and that everything IS okay. Thanks again for all of the support.

(The picture is Elijah playing with markers and apparently trying to wear it as lipstick. Look how tired the poor guy looks.)


Jim Buckmaster said...

We will pray earnestly Lisa that God will ensure that the HBOT is nothing but good for Elijah. I might also ask Him to make sure that Elijah grows out of that whole lipstick thing too!
We love you!

Jim & Shirley

Anonymous said...

Lisa, said a prayer for you and Elijah immediately. I know that God will help you and Elijah no matter what, and I'm praying for that. We are all thinking of you and pulling for Elijah to keep making good progress! - pete mcnair

Anonymous said...

I would check with your HBOT doctor. Seizures can be triggered may a variety of things... some even good things. The way to look at it is HBOT may be 'waking up neurons' and that is triggering activity in the newly functioning area of the brain--hence the aeisures. There is also documentation by Neubauer and Harch where they noiced the same thing but then the seizures dissipated and they patients did VERY well as a result of the therapy.

It is also known that intense physical therapy can trigger seizures because again, you are excersizing neurons in a way that they have not in the past and that new activity is not bad. Just watch the seizures and make sure they are not intensifying.

This happens with excersise... if you have not excersized in a long while and you start, your muscles would 'jitter' for the next few days but that would go away in time. The same thing with the brain.

Don't worry is the advise for the day, but do talk to your hbot doctor.

Michelle said...

I will pray for you. It is truly distressing trying to figure out the right thing for your child, and particularly when you feel that something isn't right... and when there are no obvious answers. I thought the last comment was really helpful, though, and I am confident that you will be guided to know what Elijah needs.
I just know everything is going to be okay. (easy for me to say, right?)
I'll be anxious to read your next update...

Anonymous said...

Not all men can wear lipstick and still look manly. Good job my little guy. I firmly believe all is gonna be ok. I also thought anonymous in comment # 3 had some good advice.
Love from Grandpa Dennis

Anonymous said...

Hi, Lisa,

How can a Mom comfort a Mom? The anquish and worry about your children is ongoing for the rest of your life. Lean on others. We are all here for you. And we are continuing to pray for you. Love, Mom

Ellen Seidman said...

Hi, Lisa. My heart felt heavy when I read this, only because I know the exact fear you are feeling. I hope, I hope it is not seizures, and that the HBOT doctor has had some insights into this. You should also call your neuro and relay what you have seen. Mine has always been helpful and reassuring, in this regard. But you do know best, and if something isn't right, it isn't. I just hope they're not seizures. And if they are, well, then, they're just passing brain hiccups in response to the HBOT.

That picture of Elijah is priceless, look at it often to keep your spirits up.

Anonymous said...

Hi Lisa, Elijah could be showing the effects of being so tired. I know that sometimes when I'm overtired, I get a falling sensation and jerk myself awake. My prayers are constant for all of you. Linda

Lisa said...

Thanks everyone for the comments. It really means a lot to me (us) that we have so many people cheering us on and praying for us. The comments get me through the day.

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