Thursday, August 27, 2009

The Future.

Tonight I had a wonderful dinner with a bunch of my friends from high school. It was great to catch up and talk about our lives now!

There were about 13 of us and just about every one of them I was very close to in high school. There was one person, who wasn't part of our "group" but part of another "group" that often mixed with ours. I always saw him and we've talked a million times, but we don't really know each other. We never got close, but we're always friendly. I remember in high school was when I noticed that he held his arm differently he held it curled, behind him, and he never used it; he also walked with a bit of a limp. In high school, I never cared or paid much attention to it...I noticed and moved on. I never, ever thought to ask him about it, or to even question what had happened to him.

I saw him again last year, at a friends wedding, for the first time since high school and when I saw him, it hit me...he for sure has hemiplegia. The rest of the wedding, I couldn't help but watch him. I, of course, never want anyone to ever stare at Leah, but I couldn't stop watching every move he made. I wanted SO badly that night to ask him, and I even asked one of my friends (who is a special ed teacher, that knows about Leah's hemi), she said he had CP but that she didn't know much more about it. I didn't know how to approach him, although my friend said he's very open about it, so that night I went home wishing I had talked to him.

The year passed and there he was tonight at dinner. I again found myself watching him, and then watching Leah. Things were so similar. After dinner, we went to get coffee and there, I was talking to my friend about Leah and he over heard and asked about her! I told him that she has left hemiparesis and he said he has right!

I knew it!

Here I am sitting across from someone that I've known for probably 8 years who has the same diagnosis as my daughter! We talked about how far therapies have come, he told me that he wasn't even able to get botox until he was 16 years old. He also told me that it hurts like hell and that he would NEVER recommend doing it on a 2 year old! He is much more involved then Leah and has no use of his arm from his shoulders to his fingers, nothing and you know what he told me!? He said it's ok. He said that sometimes people stare and sometimes people ask about it, but he said that after 25 years of it, he's used to it and ok answering questions. He said he can do just about anything, because he is so well adjusted with his non-effected hand. He was always mainstreamed and in school, he obviously always had friends. He is just a typical man, and he definitely does not let his hemi stop him!

So as I sat there talking to him, with tears running down my face, I just realized that no matter what, even if Leah never gets that perfect grasp (or even no grasp at all), she's going to be ok. I've met (or "met" virtually) a lot of wonderful hemi-mommies and I really feel like I have a wonderful support group...but everyone that I've met has young children. We don't get to hear how they will do in elementary school, or junior high, or high school etc. We talk about the different treatments our little ones are getting now, but we have no way of knowing how our kids will look in the future. I know for me, it's one of the scariest things to know that Leah may be looked at as different. But, sitting there talking to this guy knowing that he's been ok, was almost as if I got a small glimpse into the future. I know that God put this guy in my life as if to say, see this is not the end of the world, Leah is going to be JUST FINE!

Friday, August 14, 2009


We have been talking about doing some E-Stim once Leah turns 2. Her OT wants to do it in her hand/arm and PT would like to so some in her calf.

Has anyone ever done E-Stim before? Or heard anything positive or negative before?

They basically said they hook up the "tickle machine" to Leah and send small electrically currents to her muscles. They said that I would be able to try the machine on me before, so that I know how it feels.

I'd love to hear of any experiences with E-Stim! Thanks!

Monday, August 10, 2009

OT Struggles

Lately OT has been quite a struggle for Leah. She is really at a standstill as far as what she is doing with her effected hand. We still have NO active grasp and we are fast approaching two years old. My biggest fear from day one was that Leah would never have a grasp and everyday that goes by that fear gets stronger.

This past weekend I ran into a lady I know, who happens to be a well known OT in my community, and we got to talking about Leah. I asked her if she had any magic tricks to get Leah using "lefty" more and she basically went off about all these different things she would be doing. She went on to tell me that hemiplegia/hemiparesis is her favorite diagnosis and that when she was in school she wrote her final paper on hemi. She said she would love to start seeing Leah since she doesn't often get to see kids with her diagnosis.

Sounds great, right? Right!

Except, I LOVE Leah's OT. She has been seeing Leah every week, twice a week since Leah was 4 months old. She was the one who was there when we got the diagnosis and she was the one who always told me it was going to be ok. I hate thinking that we might not be with her, because she has really done so much with Leah. But, I think as this point we need to do something different because OT is just not working lately. Lisa (Leah's OT) is so wonderful, but we are at such a standstill that today she said she thinks we should cut down OT to once a week. I know that through life Leah is going to have times where she does great and she is going to have times where she doesn't do much, the latter is now.

I'm excited at the idea of getting a new pair of eyes and hands on Leah. I think that it will be good, but at the end of the day I can't help but feel like I've questioned Lisa's ability as an OT. I really do think she is fantastic at what she does, but I need to do what is best for Leah. I think both Lisa and I have gotten so close to Leah, that we need to remove ourselves a bit. Kind of like watching a kid grow, you don't realize really how much they've grown until you don't see them as often. So, maybe we'll use these next couple months (to a year) for Lisa and Leah to take a step back. We can only see this OT for the next year anyways, because she only takes EI, which Leah ages out of in a year, where as Lisa's clinic takes our insurance. In the end, we will still see Lisa every week, just once a week and then we will see the new OT once a week. I just hope everyone can work together for Leah, because in the end she's number one!