Day 1142 - Cardiology

We went to Cardiology for Ava's annual appointment. She had an EKG and echocardiogram done in the office today. The doctor said that her heart looked normal in both tests. In fact, he said that if was to look at those test and not know her history, he would have never known that she had problems in the past or was even on a vent. Praise God! We don't have to go back for 18 months and then that could be her last visit with him. The progress that Ava has made in over 3 years is certainly miraculous. I have been updating this blogs' photos from the early days and I can't believe what Ava has went through and how she is now.

Tonight in fact Ava was yelling to me to come upstairs and cuddle. Her sisters were laying on my side of the bed watching "Little House on the Prairie" and she was telling them to move so I could get lay there. Ava wouldn't stop and was demanding them to move. I don't think her sisters have realized the prima donna that they have created by always giving into her.

I spoke with the Nutritionist from GI this week and faxed her the 5-day food study. She said she was 2 weeks behind in analyzing patients studies'. She did say that Ava could just have a high metabolism. My poor girl eats until she can't stuff anymore in her tummy and she still doesn't gain much weight. She also said that they like to have a child not have anything going in their feeding tube for 6 months before they take the gtube out.

Thanking God for Ava's heart and praying for Ava to grow strong & healthy lungs and body...

Day 1133 - Pediatrician

Today I spoke with Ava's Pediatrician and gave him more up-to-date information on how much Ava is eating. We are also keeping a five day feeding journal which is extremely hard to keep when you have no idea how much she is exactly eating or drinking. We will send to GI for the nutritionist to review and calculate how much she is eating. But I can tell you that Ava eats more than any 3 year old I have seen. We also don't want to keep giving Ava so much "bad" food like ice cream and milk shakes all the time. If we did that constantly we could possibly end of with a child that has weight problems and thinks that is what people should eat. Ava is super smart and she learns so much every day. It's more important for her to love fruit and veggies than junk food that is high in calories. Doesn't healthy food grow lung tissue?

Ava's pediatrician has been fine with her weight and height progress at her January appointment but we are going to make another appointment for him to get another look at her. We will also go to GI probably in May or June.

Thanking God for Ava's ability to eat and praying for her to be healthy...

Day 1132 - Lung Center

Today we went to Lung Center with hopes that we were only going to have to go there maybe once this summer and we would be done. Instead we were told that she lost weight and she wasn't growing any lung alveoli. I'm not quite sure how she can't be growing lung tissue since she is growing and there isn't a definitive way to tell. But what I can tell you is that Ava eats a ton of food and is very healthy with no signs of asthma. I forgot to mention to them that Ava was sick two weeks earlier with vomiting. We also want to go down in QVAR soon since that is typically what the protocol is. So we are going back three months from now. They also spoke of testing her when she is 5 for her lung capacity. We are really hoping to not be seeing very many specialists once Ava has her feeding out. Ava actually fluctuates weight between 28 and 30 lbs. She was 28 pounds today. She also is 3ft tall. In addition, she never runs out of energy and pretty much is running or walking all day long.

Thanking God for Ava's growth and praying for Ava to gain weight and eat healthy...

Day 1119 - Immunology

Today Ava had her 6 month Immunology appointment. She has a new doctor that is just learning of Ava through her case history. Because the doctor is new, she doesn't want to get rid of her azithromycin until May when hopefully the cold season is past. Our pediatrician doesn't feel she still needs to be on it and that it isn't good for a child to be on long term antibiotics. The new immunology doctor also said that maybe we would get through this next winter and if Ava was healthy we wouldn't need to come to Immunology anymore. So we shall see if we can keep Ava healthy this summer except for a cold here and there (which I'd rather not even get that), then she can stay off azithromycin.

Thanking God for Ava's progress and praying for Ava to stay healthy and grow...