Tuesday, May 27, 2008

Busy Day!

Busy Day! Tuesdays are always are busiest day! We go to Gymboree Music in the morning and then therapy in the afternoon, by the time we get back to the house we are both exhausted! Leah loves Gymboree Music--she's so funny, she dances the whole time! Therapy today, went ehhh ok. I keep telling Lisa (OT) that we really need to find a different time for Leah's therapy. It's at 3:00 now and she usually naps around 2/2:30, so I am always waking her for the session. She never gets a good enough nap and therefore half way through therapy she is not happy! So, today we had to end our session almost a half hour early! :( I'm hoping we can switch the times--I would hate for Leah not to be getting 100% out of therapy every time. Other then the, middle-of-the-session melt down, therapy went well. They are very impressed with her ability to get up on all fours and rock! They think in no time she will be crawling! YAY!

On another note, I have been really struggling with something. I'm struggling with what and when and how to tell people about Leah. See, we recently moved to this community and we have started to make really great friends--all with little kids. At this point, none of them are able to tell that there is something "different" with Leah. But, lately they have been asking me what I do during the week and therapy twice a week really takes up a lot of my time. Up in till now, very few people know what it going on with Leah, we felt as Leah's parents we needed to accept and be ok with it, before letting everyone else in on it. So, this weekend I told one of my friends that I take Leah to therapy twice a week and her response was, why? I then kind of freaked out and didn't know what to tell her, my mind was racing a mile a minute--do I take the easy way out and tell her that Leah has weak muscles on one side or do I go into detail and tell her Leah had a stroke in utero and she has hemiparesis. Well, I took the easy way out and now I'm kicking myself for it. I'm not ashamed my daughter has this--so, why do I feel the need to hide it? I should have told her. Maybe, it will make people more aware--strokes do happen to little ones. I think another part of me, is that I don't want people to look at Leah differently. She's no different then any other child--she just needs a little extra help. At this point--she isn't even that far behind (if at all). But, my fear is that once I say there is a cause and a diagnosis that they will think something is "wrong" with her. I am going to keep on pondering over this. My head says tell the whole truth, but my heart says to keep it in a little longer.

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1 comments:

Kiera Beth said...

Amanda

First of all - we have the 28 min joke with our OT. We do 30 min appointments and Reichen always fusses at minute 28. If we do 60 minute, it is minute 58. Silly kids.

As for the second question, this is something that I really struggle with. I am not ashamed of Reichen having a stroke at all. I do admit that I give different messages to different people. Some days I am just feeling emotionally drained and do not want to talk about it -- then I might not say anything at all. For the people who are just passing through, I usually say right side weakness. For those who express interest, I will go more in depth. For a long time, my hubby did not want us to tell anyone in real life because this was Reichen's medical history and he had a right to keep it quiet. As Ike has gotten older, we get more questions. Now that we have Reichen in a cast, we get people asking "what did he do?" all of the time. To be honest, I usually just say he has right side weakness. I do not feel that this is a cop out because that is what it is. If people ask why, then I can go into more detail. So far I have only had 3 people in 2 weeks ask why.

I will also tell you that I use hemiparesis, CP and right side weakness depending on the situation. To get services through the school, I used CP because they knew that term and could relate that to a bucket. For dr appointment and nurses lines, I use stroke.

I will say that this constantly evolves. I am feeling more comfortable with this diagnosis and can talk about it now without wanting to cry which was not as easy a couple of months ago.

I do not believe that helped much, but I thought I would share what we have done.

Long and short, do what feels right to you, your SO and Leah. Trust your instincts. You are doing great so far!