Avery's Adventure: November 2014

A lot has happened since my last update. The day after we went for the consultation for hearing aids, the audiologist from UH called and said she checked with my insurance (which is through the Cleveland Clinic) and they wont cover anything if we don’t go to a Cleveland Clinic audiologist for the hearing aids. If we do, they cover half of the $3000+ cost. I then thought maybe BCMH(her secondary insurance) would pay for it. I called them and they said they wouldn’t pay if we don’t go somewhere where my primary would pay for some of it.

This makes me really upset

1. I really liked the audiologist at UH and now feel like we wasted her time

2. It was sooooo much easier to get an appt at University Hospitals than at Cleveland Clinic. Cleveland Clinic was booked 2 months out and I could get an appointment the next day at UH.

3. Her audiologist at UH is like 3 minutes from my house and I know Avery will have to go for multiple follow-ups when she gets the hearing aids

4. We are delayed now. We don’t go see the audiologist at Cleveland Clinic until Nov 26. Even if we order the hearing aids that day, they still won’t be in for a few weeks. We could have had them by now if we were allowed to go to UH.

At one point, I was ready just to pay the $3000 out of pocket because I am sick of dealing with this. I don’t know why everything has to be so difficult all the time.

Avery had her yearly follow up with the nicu clinic this past Thursday. They completed the Bayley development test that they did last year. Overall, she has come a long way and Tim and I feel like she did great. Dr Peterson said she has shown such great improvement from last year.

She scored great on her fine motor skills. Her speech was very low and I believe she scored around a 12 month old. They said her gross motor skills weren't great because she wasn't walking up steps. I informed them that she crawls up them and they said that she should be walking up them. I got defensive because she just started walking less than 3 months ago and plus she is short! She physically can't walk up the steps. I probably couldn't walk up them either when I was two.

At the end of the appointment, Dr Peterson gave us her suggestions regarding who we should follow up with.

1. She wants us to see Gastro to possibly start an appetite stimulant for Avery. We all know Avery isn't the best eater and needs to gain weight. We have an appointment with gastro in January. We would go earlier but that's the soonest appointment we could get.

2. She wants us to see a dietitian to possibly start duocal. Its a powder that you put on foods that just adds extra calories. Dr Peterson thinks that if Avery can gain some weight that it would help her development greatly.

3. We are to see Neurology and Ophthalmology since she was due back in October.

4. She wants Avery to start getting speech therapy once a week because she is so delayed.

5. She wants us to follow up with Genetics. She and Dr Hopkins (ENT) think Avery shows signs of Treacher Collins syndrome. I do not see it at all. They said that she has some of the characteristics such as recessed chin, small head, flat top part of nose and overall small stature. I have previously googled it and if she would have it, there is nothing you can do to treat it. Also, if Tim and I were to get pregnant again, there is nothing they can do to prevent that baby from getting it. Maybe I am just in denial but I feel like these doctors just want Avery to be a guinea pig and test her for everything. I don't see anything wrong with her. We had a lot of stuff on our plate right now and I will tell you that we will not be taking Avery to genetics in the next year or anytime soon.

Riding along in my automobile....