Avery's Adventure: More doctors appointments

Avery had a gastro appointment last Friday. The reason we were going was because Avery has not been gaining weight. She has been stuck at 16/17 pounds for months now. She was given the dreaded “Failure to Thrive” diagnosis.

The appointment didn't go very well from the start. Her appointment was at 8am and we weren't taken back in a room until 8:30. Trying to keep a 2 year old occupied in a waiting room is tough. Then we were taken back and they told me since they were running behind (which I believe we were the first appt of the day so I don’t know how they could be running behind) they would get her height and weight after we saw the doctor. We then saw the resident and I explained Avery’s extensive medical history. The resident then said she was going to get the doctor and then be right back. After 20 minutes of waiting with no one coming back to tell me what was going on, I have had enough. I put my coat on, Avery’s coat on and texted Tim, telling him I was waiting 3 more minutes and leaving. After 3 minutes, I got up, put Avery in the stroller, started pushing it out the door as the doctor and resident were headed into the room. They asked where I was going and I explained that I had no idea what was going on, it was already 9am (an hour past our appointment) and we hadn't even seen the doctor yet.

I was quite bitchy to the doctor, so much so that I even contemplated emailing her afterwards and apologizing. She remained nice to me, despite my behavior. She had a few recommendations.

1. Avery should see the dietitian. I said I thought that’s why we booked this appointment here at main campus, that I was told they sometimes pull the dietitian into the room when you have a gastro appointment. They said the dietitian wasn't here today. I also said that we tried the feeding clinic and they kept wanting us to force feed Avery through her tube every 3 hours. I explained that Avery couldn't handle that much food, that we were stuffing her and she would just get so fussy and cry for hours that she would burn off all the calories that we just forced in her by crying.

2. They recommended we follow up with genetics. I explained to them that last time we went to genetics, they tested her for some random Kabuki syndrome and that it came back negative and we were billed $3000 for the test. I had to fight with billing and the genetic doctor to get it re-coded. If she does have something genetically wrong with her, most likely its something that cannot be corrected or prevented if we would have another child so I personally don’t see any point in getting her tested for these uncommon disorders.

3. They want her to have another swallow study done. She had one done last year and it showed she possibly aspirated once (when liquid goes into your lungs). I explained to the gastro doctor that she already had it done and that there were no diet restrictions because her test came back negative

4. They are starting her on an appetite stimulant called Periactin. She takes it once a day, in the evening because it supposedly makes her drowsy.

5. They want her to get a bunch of blood work done to make sure all of her numbers look good.

The doctor said she wants to do all these things to prevent Avery from having to get another g-tube. I told her there is no way we are getting another gtube. Yes, Avery isn't gaining weight but she has {eventually} been meeting every milestone. Yes she is small but she has my genes and was premature. I never expected her to be big.

We decided we are going to start with the blood work and appetite stimulant and take it from there. I realized after we left the appointment, she was never weighed or measured so I am not sure how they are going to tell if she is growing or not. They are so concerned about her weight yet they didn't even weigh her?!?

We gave her the appetite stimulant on Friday night. It’s a liquid and we put it in a syringe. They wanted her to take 5ml of it. Luckily she doesn’t mind the taste so she did really good. She woke up at 2:30am that night/morning screaming like she was in pain. Tim said she was up for over an hour. We decided to decrease the dose the next day because we believe 5ml is too much. Normally you give 5ml of medicines for babies who are 24 pounds. She is only 17 so I don’t think its going to hurt her to decrease the dose.

On Monday Avery had an audiology appointment. She has been pulling her hearing aids out for a few weeks now. They looked at her hearing aids to make sure they fit well. They also testing her hearing with her hearing aids in and also with her hearing aids out. First they tested them with it in. I think she did pretty good. Then they tested them with them out and I think she did better with them in. Though she was getting very fussy and tired when they were testing her without them in. It was during her usual nap time so she wasn't very happy or cooperative.

After the audiology appointment, we were near the lab so we decided to get her blood drawn. She had orders in for 12 different labs. Tim went back with her and I waited in the lobby. Ten minutes had gone by and I didn't hear any crying yet. I started pacing because I thought something was wrong. All of a sudden Tim and Avery walked out. She didn't cry at all even after 6 small vials were taken from one arm and one large vial was taken from her other arm. I couldn't believe it. She is a trooper.

I just noticed that Avery's blog has over 70,000 page views! I feel so fortunate that so many people care enough to follow what's happening with her. We appreciate your support.

I love brushing my teeth. Really, I don't but I do love playing with the water used to rinse my toothbrush off.

Yep, Still brushing

I love this picture! These are some of my favorite people in the world. Daddy and his best friend, Chuck. And there is little Greyson who I might marry someday. And then my favorite person of all is Auntie L! (Chuck's mom). They threw a surprise birthday party for her and we were there to help celebrate!

Here is another one of my favorite things, butter!

Eating a grilled cheese sandwich before my audiology appointment

I had to get multiple blood tests done for my gastro doctor. I was a champ! I didnt cry at all. Daddy said I even watched as they put the needle in my arms