First of all, I am embarrassed at how long it has been since I have been able to post. Anyone who is close to a teacher knows that this past year has been a tornado is craziness, in Florida anyway. I am so glad to be off for the summer and have no major plans except hanging out with the best girl in the world everyday.
Luckily Teryn has been very healthy lately and we have not had any hopitalizations since November, Praise the Lord! We met with the geneticist from Shads last month and did some further testing. He was the one who evaluated her at only a few days old. She has had testing twice with no evidence of gentic or chromosomal abnormalities. We, along with doctors, are still looking for a more definitive diagnosis. Cerbral Palsy is so broad. Pierre Robin Sequence does not explain any of her conditions other than her cleft palate (now repaired) and small jaw. We are looking for more information so we know more about the best way to care for our girl. It will also offer insight into genetic counseling should we decide to have another child down the road. We should be meeting with the genetic team again next month for results. They will be reviewing the genetic testing as well as her most recent MRIs.
Last week we also conducted a sleep study. I will be interested to see the results. It was not a typical sleeping situation for Teryn. 1) We had to make a 3 hour drive to the center. 2) She was at the tail end of a sinus and ear infection. 3) It was a strange place and she never sleeps well in a strange place.
The test was to determine any seizure activity while sleeping, heart rate, breathing rate, and oxygen level.
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| Mommy, what are you going to let them do? |
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| Alright, just one, I can handle this. |
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| Nevermind.....I don't want to do this anymore. |
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| Big girl sitting up and checking out everyone who goes by. |
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| Hmmm, I think I could escape through there. |
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| What in the world are they doing over there? |
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| Hey Everybody! |
After a year of waiting, things are finally lined up for us to begin feeding therapy again. Last year we did not get very far before we had to stop do to illnesses, surgeries, and the very frightening
aspiration incident last summer. We were supposed to begin last week but had to postpone dure to her having a sinus and ear infection. Yesterday was her official first feeding therapy. I had inservice so it was just James and the speech therapist with her. I spoke with her ST later on the phone and she was very optimistic about how things went. We will be doing therapy at home once a day for a week and then move to 2-3 times a day. Here are some shots from her practice with me today. She only eats maybe 1/2 teaspoon a time right now. But we are thrilled with being able to begin.
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| Okay I am ready to try this eating business again. |
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| Where is the food, already? |
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| Put it right here on my tongue mommy. |
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| Applesauce dribble and a tear from trying to coordinate the increased saliva and swallow. |
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Yesterday GG came by and brought Teryn a gift right after feeding therapy. It was GG's when she was a baby. (I am not allowed to tell you how long ago that was.) It was perfect timing and now has even more significance.
I am so proud of this amazing girl. No matter the challenge she keeps on going. She is so persistent and has shown lately to be quite a problem solver and she is exploring around the house. Thank you Lord for your continued blessings. |
