Avery's Adventure: June 2017

Avery's last day of school was June 6. Her teacher showed a power point presentation and each child held up a sign of what they wanted to be when they grow up. Some kids' signs said doctor or builder. One of the student's said tooth fairy and everyone laughed. Then Avery's picture popped up and her's said "I want to be a Mama". Everyone said "Awwwwwwww". I had a tear in my eye. It was so sweet. Then Tim turns to me and said "not too soon though!". After the presentation, we were talking to her teacher and they said they didn't have to prompt her to answer that at all.

A few months ago, Kohls had a deal on these inflatable pool/slides so we got one. We finally were able to use it last weekend because it was in the high 80's low 90's. Avery and Reagan both love it. Reagan likes to sit in the pool section and splash around.

On June 15 we went to the Cleft Palate clinic. It the the day I dread all year. Every year I tell you its like trick or treating with doctors. You go to one specialist's office and then move on to the next. We saw 6 specialists in one day and were at the clinic for close to 5 hours.

We saw ENT and it turns out one of her ear tubes was falling out and the other was completely blocked. No wonder Avery has been having so many ear infections. We agreed to schedule Avery's 8th surgery and get new tubes. When she is under anesthesia, she will have a sedated ABR hearing test. It measures the reaction of parts of the nervous system that affect hearing. She last had a sedated ABR over 2 years ago when she got tubes. It showed she had normal hearing in one ear and mild hearing loss in the other. I can't wait to see what it shows now.

Next we saw audiology. We are idiots and forgot to bring Avery's hearing aids with us. I am sure they thought we did it on purpose but we didn't. They tested Avery's ears to see if there was fluid and each ear had fluid in it. Then they performed the behavioral test. She always fails this part and they think its because she can't hear them. I told them I could shout the directions directly in her ear and she wouldnt do it. Not because she can't hear but because she is so stubborn. I told them that her teacher said she doesn't notice a difference in Avery's reactions/responses when she forgets the hearing aids compared to when she is wearing the hearing aids. I really don't think they help her much. We will see what the ABR shows in August.

We declined the appointment with psych like we do every year. She doesn't talk, we don't need her to see psych. After that we saw pediatrics. She recommended that Avery see endocrinology to possibly start a growth hormone. Tim and I looked at each other and both said no. The doctor said based on my height and tims height, Avery should be 5'2"-5'3" but at the rate she is going, she might only be 4'8". It still didn't sway my decision. Those hormones make me too nervous. Its funny because they say how small she is yet they failed to get her height or weight when we were there.

We then saw the speech pathologist. We decided to start Avery up in outside speech services. She is going to be evaluated and then it will be determined if she will go once a week or every other week. I told the speech pathologist that we have gone in the past and Avery is very shy and would just sit there and not say anything during the sessions so they were almost like a waste. Hopefully these sessions will go better than a few years ago. Depending on how good/bad it goes, I may discontinue them once Avery starts up in school in the fall.

After that we saw dentistry and the plastic surgery team. Dentistry said she needs to schedule a 6 month follow up/cleaning so we got that scheduled. Plastic surgery then looked at the roof of her mouth. They said the fistula is in the hard palate and that the surgery is going to be pretty extensive. They need to cut the muscles in the roof of her mouth, pull them together and then use fat cells from her cheeks to close the gaps. I asked if we could wait on this surgery and they said its no problem if we wait. She said that the fistula is not preventing her from speaking. It may make her sounds a little different but it doesn't prevent her from speaking. They said they are more concerned with getting her ears taken care of. I also don't want to do the surgery right now because she is skin and bones. She weighs 23 pounds and is not gaining weight. If we do that surgery and she has 50 stitches in her mouth like she did last time, we will have another set back and she may lose even more weight and we can't afford that right now.

We hope you had a Happy Father's Day! The kids were at Tim's parents the day before the holiday and I didnt get a chance to get a pic of them with Tim's dad. On Sunday, we stopped at my parents and my sister brought her kids over.

I want to be a Mama when I grow up