Things were a little bit better with the pain today, but he has vomited quite often. It's my personal belief that all of this is due to too much fluid being drained off his head too quickly. He literally went from a bulge on the top of it to it being sunken in about 3 inches or so within the last few days. The prosthetics dept also fashioned a 'sling' of sorts for the sac of CSF that is right above his left ear and that has been shrinking as well leaving a lot less fluid around his brain than he has been used to. Of course, we aren't sure about this, but it's something to consider.
I did leave the sling off today (it pushes the bulge upward forcing the fluid to move up into the recessed area and drain off) and we didn't have an episode like we did last night. I am going to hold off on using it over the weekend and see if all goes well. I will then try again on Monday and see what happens.
I am also proud to tell y'all that Kevin sat up by himself for a full 23 minutes today. Yeah! He went from 1 full minute the other day to 23 minutes today - astonishing, huh? The only thing that worries me is that he can't hold his head up at all when sitting like that or when standing. It is dropped down with him looking at his toes. It's not due to the neck muscles or anything like that, I think it's the vertigo. I'm not sure though and we are just going to have to work on that.
And yesterday he did stand up on this machine and he was able to for a full 7 minutes. He was in a lot of pain while doing it, but he managed it. I will have to wait to post those pics as I forgot to download the pictures earlier and Kev is trying to go to sleep so I don't want to get up and grab the camera and cord.
I also had a long talk with the doctor yesterday because I was concerned that we have seen no true signs of his right side working in the 5 months since the attack. He did admit to me that he feels Kevin may be hemi-paralyzed. Meaning one sided. He stressed the fact that Kev is young and has great family support, but it concerns him as well that he hasn't really moved anything yet.
So I then went to the physical therapist with the same question and she doesn't agree. She thinks he will be weak on the right side, but that he should have some movement. We did start that electro-stimulation on his shoulder (as it is pulling out of its socket) and hopefully that will make a difference.
I guess time is going to tell on this one, huh? I have to admit that there is always hope, but being realistic - the outlook isn't too great. You typically see movement within the first 6 months if you are going to see it and we are near the end of that window.
But hey - we can deal with it! As long as we have what we have mentally...what's a little bit of paralysis? Shoot - Kevin will just be racing his wheelchair around instead of a skateboard, right?
First 2 from the Nov kit!
12 years ago
6 comments:
Hi Les,
Good to hear you both are doing better today and in a little better spirits! I have been wanting to call you the last couple days, but know you have so much to deal with and didn't want to bother you. But I am glad things are a little better!
Sounds like Kevin is going thru alot of different changes right now. So much so they are making him sick. Hopefully everything will "level out" soon and he will start feeling better. You are such a strong woman and amazing mom. Kevin couldn't have gotten this far without you and Breezy.
Stay positive about his right side improving. Remember awhile back when you told us Kevin was moving his right arm when he thought no one was looking? He might suprise you one day....
Kevin, CONGRATS on standing up! Great job kiddo!!! Can't wait to see the pictures! Keep fighting kiddo, keep fighting! I am proud of you!!!
Leslie, I hope I am there the day Kevin races around in his wheelchair for the first time!
Quick question, did you get the package?
Here is to a great and improved day tomorrow!
Healing and positive thoughts for Kevin.
Strength for Leslie and Breezy.
Safe thoughts for all military personnel and strength for their families.
Big hugs and all my love to all 3 of you!!!!!!!
Andrew's Aunt Jodi
Despite all Kevin's setbacks, he's still making progress! He must have felt so proud being able to sit by himself and stand up. That's got to increase his confidence and hopefully give him hope about using his right side. I feel bad about all the pain he's been in regarding the CSF. I'll be praying about that. He's so brave to keep pushing on, thanks to your encouragement and positive motivation!
Great article in the butler eagle on wednesday! Have you seen it? I know you have had alot going on the past few days. Hoping the pain and vomiting subside. Always thinking about you three, and praying that it keeps getting better. Kevin has come so far, it wont suprise me a bit if the right side improves too!
Glad to hear that today was a better day, even if things are still a bit 'bad'. And that is great news that he sat up for so long! I cannot even imagine how great that must be for his confidence.
Thoughts and prayers your way!
Alison
Glad today was a better day. Hope tomorrow is even better. That boy of yours has overcome sooo much.. he's not going to let anything stop him. Hang in there girl... you guys are doing great!!
Leslie and family- I went back and read again your beginning. I have been reading from the very start but had to re-read your first couple days. Things were so grim then, so raw, so hard....Kevin has come so far. I remember thinking in the beginning that Kevin had such a slim chance of survival, much less of a chance that he would be able to talk, sit, stand, travel to your house and eat, laugh, smile, ham it up for the camera, and all the wonderful, wonderful things he has accomplished in 146 days. Like his recovery has always been, a couple steps in the right direction and a step back. i see that in this whole amazing transformation. There are soooo many people saying prayers, lighting candles, and holding you all in their thoughts. You have been riding the rollercoaster with your emotions and I have no idea how you have managed to stay sane, but you have; and you have also managed to write this blog superbly.
Kevin has come so far. He is not the "textbook" case. Doctors are doctors and may be the extension of God's hands but they do not KNOW for sure what will happen. Time is not Kevin's enemy; time will tell what happens. Hard work and diligience will get Kevin where he needs to be and all our thoughts and prayers will help him along the way. Keep your chin up .. .you do have an amazing son. You have a lovely daughter who has stood beside her mom and her brother and you are more than amazing . . . keeping the prayers coming. Hallie
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