Thursday, May 16, 2013

May 16, 2013 (8 months old, 5 months corrected)

Avery had her first appointment with the Cleft Palate Clinic today. My friend Anne pretty much sums it up by saying its like Trick or Treating except you visit with different doctors/specialists. Avery say A LOT of people today. She was a trooper and did really well the whole day.

You go around and see doctors/specialists in the morning and then in the afternoon, all of the doctors/specialists get together and talk about who they saw today. They all work together on a plan for your child.

This is everyone we saw today...

Speech Therapist- There wasn't much we talked about with her. I am sure once Avery starts trying to talk we will have many questions to discuss. She mentioned about possibly having us go back to trying bottles special for cleft palate like the haberman or pigeon. Tim and I said that's not happening. Why should we use one of those when Avery can suck from a regular bottle and has done the best on the Dr Browns bottle?  Sorry but that won't be happening.

Audiology- They told us today that they believe Avery's hearing loss is only temporary which is great news. Supposedly they told us that after her hearing test right after her surgery on April 23 but I guess too much was going on because Tim and I don't remember that. Anyways, that is good news. They think it's just a lot of fluid blocking her ears. (more on that when we talk about ENT)

Pediatric Psychologist- Again, we will probably speak with her more once Avery is more developed. She told us the reason she is included in the group of doctors/specialists we see is because in order for Cleveland Clinic to have this Cleft Palate Clinic, they are required to have a psychologist as part of the program. She basically asked the story about Avery and how we have been handling everything. We proceeded to tell her that we think Avery has been doing great lately, especially considering everything she has been through. We are happy with her progress. We told her that things were super hectic at first, with Avery being born so early, being in the NICU so long, Tim starting his own business, etc. and we are happy things are slowing down a little and finally falling into place.

ENT/ Dr Anne- Avery was having issues/infections after her ear tube surgery and we saw Dr Anne probably 3 times since April 23. Avery's left ear looked good today. Her right ear still had some gunk/infection. She said they did a culture on her ear last week and there was a yeast infection so she decided to prescribe another oral antibiotic and a different ear drop for her right ear. Hopefully that will clear things up for her.

Pediatric Surgery- Normally this isn't part of the Cleft Palate Clinic but we decided to make it part of it today since we would be at Main Campus anyways. They ended up changing Avery's g-tube out for a larger one. She did really good during this process. It is a pretty simple procedure. They drawn out the water from the balloon in her g-tube, pull the tube straight up and out, place a new one in and then fill it with water. The whole process took less than 3 minutes. She said everything looked really good regarding it and we might not have to get it exchanged again for another year.

Pediatrician- We have a pediatrician at Independence but they have you see a pediatrician as part of the cleft palate team. Avery ended up weighing 10 pounds 13oz. She is still very light but the pediatrician is happy she is gaining again and not plateauing. I did also mention that she probably would have gained more weight had she not had surgery and been sick with multiple ear infections for awhile afterwards. I then asked her about starting solid foods like rice cereal and vegetables. We have tried in the past and Avery would try it but she wasn't very interested. This doctor said not to push it, that she is still very young and not to worry about it. She said Avery will soon be interested in it.

Plastic Surgery/Dr Doumit- Dr Doumit will eventually be performing the cleft palate repair surgery on Avery. He said she looked really good. He said that he now wants to do the surgery about 6 months from now, when she is about 14 1/2 months old. He said her cleft palate is very small and expects everything to go perfectly. He said a few days after surgery she will be able to drink from a bottle. He said no sippy cups because they don't want anything hard/plastic in her mouth with could puncture the spot they just fixed. He also said no solid food for 3 weeks. (I had all of this wrong before so ignore my previous posts..lol). I will be happy when that surgery is finally done. They said the recovery is pretty rough for the first few days. She will spend the first night in the hospital. We follow up with Dr Doumit in about 3 months and will get the surgery scheduled 6 months from now so most likely the middle to end of November. I guess Avery will not be eating Thanksgiving dinner this year.

My cousin, Kaitlin, came over and visited today! 

I love TV.  I even watch it while waiting for my appointments.

Mommy and I went to Target the other day. I did really well until we were about to check out.

I got to hang out with my family outside today after my doctors appointments.

Chewie was interested in sitting by me but I was much more interested in my bib.

I look super cute!

I got to play outside yesterday and Scarlett was giving me kisses

 This was when they were exchanging my g-tube. That red spot on my belly is actually the hole that goes to my stomach. This was when the old one was taken out but before the new one was put in. That hole is where they put my new g-tube in. 


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