So I need to catch you all up...

Six months! I can’t believe it has been six months since I posted anything!

Anya had a great summer. It was a milestone summer for the whole family, really; Anya was a year old and off oxygen, Arwen was getting ready for kindergarten, and Adam and I have been married for ten years. Add to that the general feeling that we should make up for lost time from the previous summer! Anya felt less like a medical experiment in baby form and actually was like a real child, once she was off oxygen and her tube feeds were stopped during the day.

Yay for no oxygen!! She came off completely in early August. My fantasies of burning all of the disposable oxygen equipment though are premature. Anya did have a few illnesses at the beginning of the fall where she needed a small amount (o.2L) to make her more comfortable. It is likely if she gets ill this winter she will need it, so all the equipment is waiting. The first two winters are supposed to be the hardest, and it gets easier from there. Next winter she should be fine.

We went with Dr. Kays recommendation to stop tube feeding during the day, it is remarkable how that has improved Anya’s life. Before we had to feed her every three hours on a schedule, and run a feeding over an hour. Her stomach couldn’t handle that much volume and she would retch a lot. Somehow in the two hour window we tried to get a feeding therapy session in, but when you retch all the time, do you really want to try to eat? She was getting the equivalent of a milkshake every three hours, no wonder she wasn’t motivated.

No overfilling of the tummy meant less retching, and she actually wanted to CHEW, how novel! About a month after we stopped day feeds she started eating measurable amounts. She became pretty hungry by the end of the day, but she finally learned what hungry was. Up to that point she had never had an opportunity to get hungry, with scheduled feeds and TPN before that. Weight gain is such a priority and often so difficult for these kids, a schedule for feeds is a requirement. Thankfully Anya is a weight gaining champ.

This is my favorite picture: right after we found out about Anya's CDH I felt like she was falling away from me, and I needed to catch her. I caught her!

Right now her favorites are meat and casseroles. Any meat really will do, as long as it is tender enough. She loves chicken and dumplings, pot pie and broccoli rice. Bread and bread like foods are also good; she is working on cereal and fruit. Strange kid, to prefer meat to fruit, but I am not complaining, since all of the food is nutritious. I was worried all she would eat was snack foods!

Drinking is more difficult for her, because it is more difficult to control liquid in your mouth and throat. There are many things that have to be working together to making eating and drinking possible. Anya’s problems are not just the desire to eat and drink, but the muscles to do it well. She wasn’t using all those muscles for her NICU stay, and then wouldn’t or couldn’t all last winter because of more breathing issues. It takes time.

We have been working with an orthopedic physician group for Anya’s scoliosis and her crazy thumbs. She has a vest she is wearing to support her muscles so her scoliosis improves. I don’t remember if I have posted about her thumbs before. Instead of resting in her palm naturally, her thumbs rest on the heel of her hand. It was the first thing I ever noticed about her but up to this point it wasn’t a priority. Now at eighteen months old Anya doesn’t have a proper pincer grasp, so we had it looked at.

The orthopedic hand specialist (how do you choose that for a specialty?!?) thinks that some of her thumb muscles are too small or not there at all. There is no treatment right now, we are going to watch her develop and possibly do surgery before she starts school. The good news is she does use her thumbs, and is figuring out different ways of picking up small things, using the sides of her fingers instead of the tips. Oddly enough she really loves to play with a magna-doodle pen, and holds it correctly!

It has been about nine months since Anya’s last hospitalization, and she has been busy! Being well means she finally has been able to work on some milestones. With lung issues come weak arms, so we knew she would probably never crawl, so instead she scoots around with most of her weight on her right side. She is surprisingly quick, and moves around the whole house. She can finally pull herself up and is cruising the furniture. PT thinks she will be walking independently in the next six months, but I would guess earlier.

I had never realized how quiet Anya is until she started babbling in the past few weeks. Given how much of her first year she was struggling to breathe it is understandable that she is just now getting to this point. She definitely can understand speech; she will follow directions, or not depending what I want her to do. (She is a toddler after all!) We have been working on baby sign and she has learned a few: more, eat, and all done. She also has an inflection to her voice that gives you an idea of what she is thinking: questioning, excited, curious, sad, etc. She does say mamamama and dadadada, but I am not sure if she knows what they mean yet. Adam and I can’t wait to hear her talk and find out what is going on in that little head of hers.

My girls!

To use a ‘five dollar word’ as my sister would say, Anya is tenacious. She can also be very defiant, sweet, and funny. Very normal little girl!

I also must mention how beautiful it is to see the relationship between Arwen and Anya grow.  Arwen is going to be a wonderful mommy someday, she is so careful of Anya. Since she is learning to read and Anya has discovered books, Arwen will ‘read’ books to her. Anya adores Arwen and they play together independently very well. This has been one of the best experiences of being a parent. I know it won’t be like this forever, I know they will fight and hate each other on and off, but right now I am just enjoying the moment!

Since it took me six months to write this post I doubt I will get to another one soon, so Merry Christmas everyone, and a Blessed New Year! Ours already is, praise God!