Wow, so it really has been two months since I posted?

 

I sincerely apologize that it has been a while since I have posted. I have heard from several people that they want an update and have been meaning to for quite some time. Have no fear though, I have found that I only feel like writing/posting when I am stressed out. The last two months have been going really well. Little stress= no posting.

Last week Anya had an appointment at the CDH clinic and there was a lot to talk about. She had weaned of Lasix entirely a couple of weeks before. The next step is weaning down on oxygen! She weaned from one liter to ¾ liter, which may not sound like much but is really good. We are not sure how long to get her off oxygen completely, but Dr. Najaf thinks in six months she will definitely be off. I would guess earlier.

Occupational therapy with First Steps had voiced concern about Anya’s scoliosis, and she had never been worked up for it. We saw the orthopedic nurse practitioner. The good news is that Anya’s scoliosis appears to be muscle weakness related; it should improve has her trunk muscles get stronger. At some point they may prescribe a soft brace to use with therapy, but she may not even need that since she can sit up independently now.

Unfortunately there was some bad news with that appointment. There was a bubble on the x-ray that showed Anya has a hiatal hernia. She had been having more gagging, retching, and then her g-button started leaking. She had stopped taking baby food as well.  So today she had a study done where they inject contrast in her button to evaluate the stomach. Part of her stomach has pulled through and entered the chest.

Everything works, and the surgeon doesn’t think that it should have anything to do with her retching or feeding issues. As long as everything works, she doesn’t need surgery. I am happy no surgery is needed but bummed that there wasn’t a good explanation for her feeding issues. It also sucks that there is another possible surgery on the horizon. She is a lot healthier than when she had her other surgeries, but there is still a lot to be concerned about.

Going back to better news. Her breathing is much better; dare I say we have been two months without a hospitalization? Like I mentioned earlier she has started sitting up independently! Shortly after that she was able to pick things up while sitting. This is a big accomplishment since her upper body was so weak from her medically complicated first months. She can also stand for a short time.  Anya is rolling over partly and scooting all over the place. The big goal with therapy is to get her to push up on her arms, and teach her how to lie down from a sitting position.

Anya on Easter; such a big girl!

 

Feeding has stagnated. She was taking baby food but is not as interested. Occasionally she will take a sip from a cup. She enjoys chewing on all sorts of vegetables and meat when it is put in a mesh teether. Her favorite food is Cheetos, and it feels extremely odd for me to allow her those. It has been a goal of mine to keep snack foods out of day to day life for my girls. Still, they are the best thing for her to learn how to manipulate food in her mouth. They break down after being wet and break off in large pieces she can handle.

Seeing the girls play together is a treat. Anya has become more interesting, so Arwen is playing with her more. Arwen’s favorite is ‘reading’ Anya a book, and showing the pictures. Often she will set the books upright and puts toys in front, creating a little diorama and putting on a play. Anya’s favorite toy right now is a simple shape sorter. Taking shapes out to chew and banging the lid against the bucket=good times!



You can't tell because of the flash, but this is a picture of the girls looking at 'stars' projected on the ceiling in the dark. Anya loves being with her big sister!

I think that is about it for updates. The past two months we have finally been able to spend time together as a family of four, and not Adam with one girl and me with the other. Now that RSV season is just about over we can GO OUT IN PUBLIC as a family! Watch out! We have to make up for a whole winter without activities as well as last summer without Arwen. Looking forward to summer!