Wednesday, May 13, 2009

Long day…..of appointments

Yesterday Ava was seen by two of her doctors. Dr. Brophy who is her bladder /kidney doctor. He thinks she is doing fabulous from his point of view. So he told us that unless she has problems he didn’t need to see her for a year. YEAH! 


We also saw her surgeon, Dr. Shilyanski. He really cares deeply for Ava. He listens to my concerns….that is why I like him. He is still very concerned about her partial obstruction. She has a narrow spot or a few of them that are causing problem. Even when her tummy “appears” smaller she still has extra air in her intestines. He wants to wait this out and see how she does on her own. So the plan is if she continues to have these “spells” where she gets distended and throws up about every week or two we will have to think about surgery. Sometimes partial obstructions can resolve themselves…….sometimes surgery is the only option. However I am VERY concerned that surgery will only cause more problems, as I have said before, surgery= adhesions, which in turn cause more obstructions leading us back to surgery again. I have a strong sense that God is going to heal her insides. He already is! Dr. S was shocked to see her looking so well.


He is worried about her weight. (I am too!) She is 25 pounds but is up a bit from her last appointment a few weeks ago. She is in the 10 percentile for her weight. SO I asked if I could switch to a more natural formula. One that contained real food. I asked for Compleat Pediatric made by Nestlee. They agreed and I picked up a case at the home health care place before we left town. I’m excited about giving her this slowly at night to boost her weight. Well that is my hope!

I took Lexis with us I need an extra pair of hands especially if it is more than one appointment. During the wait of the next appointment we went up to the 8th floor. They have a outdoor patio and it was just gorgeous yesterday. It was so peaceful and gave Ava a chance to relax and just be!   The birds would come right up to us and beg. I couldn’t resist so we fed them some of Ava’s crackers. We stayed there until the sun got too hot and then I was worried about sun burns.



This is a few angles of the view from all the way up here.



Next we went in and saw their medical museum . It was So interesting. Here are a few pictures of Lexis with a skull and her next to a very old ventilator. They used to put the kids in the tube. So happy for technology!



I will have to admit it was a very long day but we made the most of it! After all that adventure we still had about an hour and a half so I told Ava that it was time for her to take a nap. I covered the stroller. (She can barely fit but I still feel the need to keep her very protected while we go anywhere especially the University.) Lexis and I walked everywhere. We went from the new building to the old building back to the new one again. Needless to say we were exhausted at the end of the day. We stopped by McDonald’s and I debated what to get for Ava. I got her a cheeseburger and she ate it ALL! Plus 4 fries and she was still hungry. Can you believe that? I told Dr. Shilyanski that this to me was a good sign. If she wants to eat than this assures me that things are working the way they should.


She did have to have her blood taken and she was a trouper. She wanted to keep the elastic thingy…..well Lexis did and then Ava thought it was a toy. I also had them check for Celiac disease. This will relieve my mind a bit if I just know.

Her tummy this morning was down even further.I started her new formula and she did great with that. I only set the rate at 20 ml’s an hour and ran it after I got up at 2 am to give her the antibiotics. It is great to see her tummy look normal. It hasn’t looked this good in about 3 weeks! See God is healing. He is the “Great physician” as my Mother is always reminding me.

So we are strongly praying Ava’s insides will heal on their own and NOT cause any worse obstructions. We are continuing the two antibiotics until I feel she can trail off. Thanks for all your support and prayers. Oh to those of you that were concerned about my Mother she is doing a lot better. Funny thing….she will kill me for saying this but she was “full of crap” just like Ava!



CureSMA4Stella said...

Hello Terri,
Thinking of you guys and wishing I had known you were in Iowa City!!! How crazy is that that we were both there?
Sending you big hugs and hoping we meet again!
Sarah and Stella

Lacey said...

She is a skinny little thing. Hopefully this formula gives that girl some meat.

Our Family Blog said...

God bless that cutie pie - I am glad she is doing better. She deserves a long dry run of healthiness. And good for her having a cheeseburger and fries!

Fer said...

Hey Terri, just stopping by and see how you guys and Miss Ava are doing. I'm always thinking of you.