I've decided to set up a blog to help keep everyone updated on Lynn's progress. I want to thank everyone for their prayers and kind thoughts. Since I haven't always been able to answer each of your calls and texts, you can get updates on the blog. Please feel free to comment as I will be sharing this blog with Lynn as he recovers.

Also, posts before March 28 will say they were posted by my daughter because we set up the blog under her email address.

Wednesday, April 21, 2010

OK, sorry I haven't been on in a while. First of all, I have had a very bad cold and just haven't felt like doing anything when I've returned home from being with Lynn. Second, not much of significance had been happening and it's kind of depressing to keep saying that there is no change. I hope you all understand that when there is not much change or when he has very sleepy, quiet days, it is kind of hard emotionally on me because I am not seeing the progress I want to see. Between being sick and not much going on last week, I just wasn't in the mood to update the blog. I would like to report however, that a few good things have happened. Last week on the 12th and 13th, Lynn had good days where he was making eye contact and trying to follow verbal command. He has been able to make his hand and arm move. Unfortunately, when he finally gets it moving, he can't get it to stop, but that's OK. Last Wednesday, the 14th, he received his second dose of Remicade for his neurosarcoid. They have to premedicate him with Benedryl and so he was sleepy not only that day, but the next as well. On Friday, I was so sick, I couldn't go see him and his parents reported that he had his eyes open a great deal of the day, but when I saw him the next two days (Saturday and Sunday), he was very sleepy. I was getting discouraged. The next day on Monday, when we finished showering him, he had his eyes open and all of a sudden he started some rythmic movements with his mouth, then in his face. Then those stopped and he had jerking in his arm and then it moved to the face again and then to the other arm. My first thought was that he was having some kind of seizure activity. That really bummed me out because we have not had that problem. I was so worried that he would not show any improvement that I knew he had made when he had his appointment with his neurologists the next day. The next day was his appointment. When I got to the hospital, he was again sleepy. We loaded him in the South Davis Van and he slept the whole way. When we got there, they rolled us into a room. Lynn was on a stretcher. When the doctors came in, and we were talking, he opened his eyes and looked at them as they were talking to them. When I told them about the possible seizure activity, Elaine, the doctor, explained to me that it was not a seizure but rather his basal ganglia starting to wake up and fire impulses. Right now, the movements are abnormal. Hopefully, the movements will become more normal. She said that worse case scenario, this is as good as it gets. But hopefully, things will continue to improve and he will get better. She admits that it is going very slowly and that it's baby steps, but she said that he is doing more than when she saw him three weeks ago. At that time, he wasn't even exhibiting congugate eye movement (moving his eyes together). As he rode home in the van, he was in a semi-upright position and he had his eyes open the whole way. You could see that he was looking out the window. Of course when we got him back into bed, he was exhausted and slept the rest of the afternoon but I was very glad we went. Today he had his eyes open quite a bit more. I did learn some things today about not overworking him and only giving him stimulis for about 15 minutes at a time. So I tried that today and I don't think he was as tired out. You could see him watching the TV. So I will continue to be patient and let him take things at his own pace. We have a long road ahead of us, but we will do it together. Please continue to pray for us both.

6 comments:

AlexFam said...

I'm sure his progress feels very slow when you are with him day in and day out, but after not reading an update for a week, it all sounds very encouraging! When he wakes up, it will be so interesting to hear his side of the story. I'm praying so hard for that conversation to happen!
Cindee

Unknown said...

Tina, my heart aches for you. You have a lot on your plate. I want you to know that I have appreciated you putting the information about Lynn on a blog so that I would know how he is doing. I am sorry to hear that you have been sick. If at any time there is anything I could do for you or your family, please let me know. I understand how you feel when you're discouraged about his progress and then to try to write about it so medical dummies like me can understand what is happening. Thank you for going the extra mile for us. You deserve a gold medal!

Unknown said...

WOW! It worked for me. I have tried to do this every time I get on to check the progress. Finally I became lucky. You are awesome Tina!!!

The Bates' said...

Tina, thanks for the update. I so agree with Cindee, to you it seems his baby steps are just that, baby steps but when we read about what happened during the whole week we are encouraged. I too hope the his side of the conversation will take place...sooner than later. Thanks for taking the time to let us know how our friend is doing. Melissa

Connie said...

Tina, you never cease to amaze me. The whole Kraaima family is blessed to have you, especially Lynn. You are such a great example and I admire you in so many ways. We do continue to pray for both of you and the rest of the family. Love you all!

Haley Kraaima said...

Hey Tina, glad things are going well for Lynn...we really miss him so much, our family is not the same without him. We hope everyday for the best outcome, we love you guys!
Love Neil, Haley, Nicki, Evan and Cy Kraaima!