Avery's Family

Avery's Family

Saturday, March 23, 2013

Some things are not what you expect

Last Thursday was Avery's appointment at the vent clinic. Things did not go as I had hoped. The pulmonologist explained the sleep study and showed me where it shows that Avery still has central sleep apnea as well as obstructive. They are going to do another sleep study in June, but feel she needs to keep her trache for now. They will talk about decannulating between the ages of 4 and 5. This is so frustrating, to have one doctor tell you one thing and then be told something completely different. It's exhausting having to figure out which doctor is telling you the truth and who to believe.  One of the reasons I was pushing for Avery to get rid of her trache was because she was doing so well at home and I will be starting school soon. We can't get nursing for her because she is not on the vent during the day. To pay for someone to come into our house and trache train them would cost too much. So I was hoping if she got rid of her trache we could put her in a preschool.  I talked to the vent team about my concerns and they think they can get the insurance to cover nursing during the day while I'm at school. If this is the case, that will be great! After Avery saw pulmonology, she saw the rehabilitation doctor. This particular Dr. isn't happy with us doing ABM therapy with Avery. Since it's not traditional therapy. She keeps pushing orthotics, standers and anything else I could strap to Avery so she can bare weight. Again it's frustrating when you are doing everything you can for you child, but keep being told its not enough. Needless to say I cried the whole way home. I feel so defeated. It seem to me that I have one good cry about every 6 months and then I'm good for awhile. Having a child with special needs is challenging not because of the child, but because everyone around you is telling you what your child can't do.

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