Saturday, October 18, 2008

Speech eval , Tiarra and Tea - living with Spinal Muscular Atrophy Type 1


Lizzy had a busy week.
She had PT with Monica on Tuesday and then she had a speech eval with a new person in her life Allison on Thurday. Allison her a new speech pathologist. She said Lizzy talks very well and thinks I have done excellent with her exercises her mouth and keeping her muscles moving. Lizzy is 5 and has lost minimal facial movement. She did quick sort of IQ test on her and after some questions to Lizzy she determined that Lizzy is right on track for her comprehension levels and knowledge for a 5-6 year old. She was quite shocked Lizzy is a Type 1.
Allison was upset we have more or less slipped through the cracks and no one has (here) has thought Lizzy needed speech therapy. It is sad the life expectancy (Which was 1 1/2 -2 years old) has held up so much. Its like no one wanted to help us at times because they thought she was not going to be here any way. BUT GUESS WHAT ??? LIZZY is still here and going strong. Allison is going to help me with Lizzy's stimulation in her mouth. She said she will help me maintain her facial muscles and maybe even be able to help her more than I can do. I have worked for years keeping those muscles moving and making sure she uses them. Lizzy still does the Elvis lip curling imitation also. She made Allison laugh.
Lizzy and I agreed we think Allsion is going to work out just fine.

Lizzy got all dressed up in her tiarra with Rachael and had tea today. It was too funny. They had tiarras on, all the bling you could imagine they both cracked me up. Lizzy was talking in this strange little pretend voice.

Hopefully this week we will be going to Madison and get Lizzy fitted for an arm brace. We will get to see Charlie his sisters and Sophia. They both have spinal surgery this week so please keep them in your prayers.

Time to go do some baking.

Its actually been so chilly here that the heat has been on at night.

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