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Wednesday, November 11, 2009

The Left Side

I guess you don't know how well something works until you take it away and bring it back again.

I'm talking about HBOT. We were on our oxygen break last week. Christian seemed to check out for the week. He wasn't as alert and he has these episodes (that may or may not be seizure activity) that make him want to turn to the right. He would not turn his head from the right side all last week. He had more of these episodes and all I kept thinking was - I can't wait to start HBOT again.

When you're watching the treatment and progress it's hard to determine what exactly is working. Is it the brain recovering on it's own? Oxygen treatments? Both? But then you take it away, and it's evident. The oxygen treatments are helping the brain in it's recovery. And as soon as we had our HBOT session on Monday, he was alert, his head finally started coming out of the right position, and he seemed all together better.

This week we're working on holding our head up. Christian can now hold his head up on his own while laying flat on the floor and propped on his elbows. And he can do it for about 20 seconds at a time. And get this...with his head turned to the left! The left - the side he will sometimes not venture over to. It is so hard to get him over there and while he's holding his head up on his own, he looks to the left! Crazy kid.

Christian has been holding his head up for short stints for three days now, every day of therapy this week. And he's actually had four therapy sessions in three days so he's consistently holding his head up. Did Mom get a picture or video this time? Nope. But I'm determined to get it on camera by the end of this week. And if the past few days are any indication of the next few days, it should be easily caught on camera. Mom just needs to get on the ball with the camera.

We also met our new in home OT. She's very nice and has been recommended by the outpatient therapists Christian already visits. She also has a lot of experience with feeding, which is super helpful. Perhaps the best thing I heard today was that she's worked with a lot of different children with a lot of different issues. She said something to the effect that for a near drown child, Christian looks really good. He looks alert and tolerates therapy really well. I guess he has to because I've shoved it down his throat since we left the hospital. So therapy is something he's used to. I don't know how I managed it, but he's getting a type of therapy every day of the week, on Wednesdays now it will be twice a day. Many people don't know how I've managed it either. I guess it's just that I won't take no for an answer, severe determination, and the mentality of ask and you shall receive.

His tone (tightening) is continuing to decrease and he's becoming more and more flexible. Which means it was time to reduce meds again. Not by a drastic amount, but enough to see a difference. So we'll see how this goes.

So all in all it's been a more positive week with some positive change. However, I am concerned about possible seizure activity. It's always this looming subject that could pop up at any moment. Could be benign, could be harmless with the right medication, and could erase months and even years of progress. I see things in him that look seizure-ish. The neuro doesn't seem too concerned because she says that children like Christian will have a lot of movement that looks like a seizure but isn't. And then if there are seizures we have to determine which heavy medication will work best for him. Ugh, medication. I'm really not a fan of seizure medication so far from what I've seen, read, and heard. This ain't your drugstore's Tylenol. It's strong stuff with other side effects that cause more serious side effects. I'm really hoping this all can be avoided.

Moving along. I'm really proud of my boy. He's becoming stronger, yet more limber and I think about where he was in the hospital...then in Phoenix...and now and I get excited about what's to come. I'm hoping he'll venture over to the left a little more because I don't want him to miss anything over there. Whether he chooses to position his head to the right or to the left, I'll be right in his face and ride by either side.


Tracy said...

My son was a 27 weeker (I'm friends with Krista on FF) and has had EI for 2.5 years. When I asked one of the therapists about how to tell when he was having a seizure, she said a neuro told her that one way to see is to pinch them during the behavior. If they react, then it isn't a seizure, and if they don't, then it may be a seizure. She also told me to try to video anything I felt was different so I could show the doctors later since you can't guarantee they will do the behavior in front of the dr. I'm not sure if this will apply to you all with Christian's injury, but I wanted to share just in case. :)
At times we had 4 therapists a week plus 1 or 2 dr appts. I don't know how I did it, I JUST DID. That's just what you do when you are in the battlefield for your child. :) And I kept a master calendar to keep it all straight. lol

Suzanne said...

WTG Christian! He's making such great progress Shauna and you're doing a fantastic job of making sure he's getting the therapy he needs. Keep it up, both of you!

Rochelle said...

Hi Shauna, I haven't posted in awhile and just wanted to check in and say hello. I'm glad to hear your back at HBOT this week and that Christian is responding so well. Keeping Christian in our prayers, and you and your family, and enjoying following his progress and improvements. No matter how small or big, each one is a reason to celebrate! Hope you all have a Happy Thanksgiving.

Tara said...

So glad he is coming along and yeah for HBOT!!!

Brooke said...

. Many people don't know how I've managed it either. I guess it's just that I won't take no for an answer, severe determination, and the mentality of ask and you shall receive.

You've managed because you're an awesome mommy and an awesome woman Shauna!! You have TONS of people that are continuing to pray for you and Christian and your family that things will continue to progress as they have!! You haven't waivered or faltered ONCE along this path and for that I hold you in the highest esteem!!! I am often in awe of you still at your strength and determination as well as the fact that you are currently also "housing" a whole other entire being inside your uterus right now and you STILL haven't lost your stride!!

This is the reason that your baby boy is doing SO well!!!

Much love and strength!!

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