In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Monday, October 11, 2010
APPOINTMENTS GALORE!
These last weeks have been filled with assessments, assessments, assessments... I enjoy the trips but sometimes it seems that there is no point for the final outcomes are zero. In the end, Mommy and Daddy find the answers on their own... Now what do you think of that...
Last week I visited my old physician for a recap on how I am doing. I got a hip x-ray to see how my hips are. Just as expected, my hips are displaced. This translates to caregivers having to be extra careful when handling me, so I don't get hurt. I don't get too worried, I know that my personal team takes care of every detail. I got prescriptions for the changes my equipment need as well as for a special pillow so my hips are kept aligned.
From the dermatologist I got the same cream that my pediatrician had prescribed in the beginning of my face rash woes... I have used it religiously for two weeks straight and at least the rash is a bit more tame. Still the problem remains: It just won't go away. I know that for my next dermatology appointment they shuld have the results of the culture they did, so I can finally know what is going on in my face. At least the complete freckled tomato look is a thing of the past. I'm back to my porcelain self... with some reddish hints.
Last Friday I went to Valley Health and got acquainted with the PT there. What a nice surprise! I loved how the PT talked to me and handled me without any fear. That is exactly what I need. I hope I can go back soon, I am certain that she can help me a lot.
During the weekend my stye woes came back. Mommy found a way to treat styes using special goggles. Now, my eyes have been very red and getting styes because I have extreme hydration problems in my eyes. The main reason is that I cannot close them completely at night when I sleep. This is called lagophtalmos. Main problem is the cornea can get affected. So, a way of treating is hydrating the eyes with GenTeal or Refresh. This is good during the day, but at night I need a bit more help. Mommy found out about the special goggles in which you can do heat or cold treatments. They allow for the eyes to keep humidity while I sleep. Here's me using the goggles (yes, they are pink):
I have a set of goggles and eye patch, so the stye can get treated while I'm awake. Everyone was so proud of me the first time I used them, as I was not scared to try them on. Of course my parents were concerned, but after they put them on I signaled with my thumb that I understood the purpose of the goggles and that I would call them if I needed them... No need, I slept like a baby for the whole night. And so far, I love them. My eyes are no longer gremlin red. And the stye is getting what it deserves.
I thank God every second for all the good stuff that happens in my life, and for all the right people that he send my way so I get help and so I accomplish everything that I put my mind into. I trust He will keep on protecting me and allowing me to give others as much love as I am receiving. I always have so many reasons to be grateful, and to smile!
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