Tuesday, September 18, 2012

Tuesday Sept 18

Just got home from our G-tube consultation with Peds Surgery. They said the biggest risk with Audrina is just the anesthesia itself, they don't believe she will have problems with aspiration. They agreed this is a good positive step forward and will give us a better way to continually meet her nutritional needs - plus get that darn tube out of her nose, which I'm sure will help her feel better.

The PH probe was quite unremarkable, which means we will proceed to G-tube without the Nissen procedure. But what it means more than that, is that Audrina's screaming and vomiting and arching... is not reflux. We've always wondered if it was a neurological thing but our doctors have always said its reflux - well this test and every other one has indicated that reflux is not a problem. So it may be time to get a neurologist involved again.

We had a rough day at therapy today. Audrina yanked her tube on the way there so I had to do a tube change on the side of the road - fun stuff. We were late because of this, but our therapy team knows  the challenges of getting anyplace on time with kids like ours.. they are always understanding and kind about it. I still hate being late though!

Audrina had PT and we talked about what is going to happen when she is eventually able to sit up on her own... if she continues the ridiculous amount of arching that she is doing, she will throw herself right over. She is doing it multiple times a minute, over and over - the only time she stops is once she's finally asleep. She does it happy and does it crying. Its not coming and going in episodes, it is pretty constant. Right now, Audrina's big goal is getting some trunk strength. We have a little bit more head control, but still a long way to go for someone who should be almost 5 months adjusted.

Addison had speech and didn't even make it through the session - she spent all of last night pounding the walls in her crib and jumping up and down in the middle of the night. She doesn't cry, doesnt' ask for me to come get her - just plays. For hours and hours and hours. She seems to have lost her ability to clap and is having more hand trouble over the past 2 weeks. I hate the cold weather - things get so much worse for her. Not sure what to do about her sleeping problems, we've tried Melatonin with no help this time around. But obviously its an issue - think about how we feel after a poor night's sleep. Its even worse in a kid whose body is already compromised working so hard to control autonomic functions.

We are in the process of applying to get a seasonal handicap parking pass so the girls are able to be taken to and from all of their appointments without spending a lot of time out in the snowy weather - We have GOT to find a way to keep Addison's hands from experiencing more damage this winter. For those of you who are new to the blog, cold is a trigger for Addison's circulatory problems - its not the only reason it happens, but it definitely contributes. She has long-term nerve issues in her hands and loss of strength because of it. This is what her hands look like during an episode. Her fingers swell and turn purple and it causes her hand to lose oxygen.... which is harmful to the muscle/tissue in her hands. We can't find a doctor who seems knowledgable in this, but I'm still actively seeking help and treatment for it.

Tomorrow is our LONG awaited Nephrology appointment for Audrina at U of M.
Expect to see me present a lot more, I feel like so many things are slipping through my recording of whats happening, so you will be seeing multiple little short posts throughout the day in between the big updates. This will better allow me to capture whats going on as it happens rather than trying to remember everything to write about later.
Please continue to be in prayer that Audrina stops vomiting!


  1. Hello! You don't know me but I have been following your blog since the Nov. 2010 birth board on BBC. I wish the best for you & your family, & hope your appointment goes well tomorrow! Ypure a great mother and such a good advocate for your children. I'll also be at U of M tomorrow with my 3 month old little boy with CF for a check up.

  2. Praying for you all.Hope you have a great app tom.Sounds like todays one went well.

  3. Hi, I was reading your post and its heartbreaking to see you going through that with your children. I pray God may give you strength. Your children are beautiful. I read a blog from a girl Ramee whos daughter has almost the same diagnosis your daughter has. Her blog is rameelinlarson.blogspot.com. I hope you are able to connect with eachother and have someone else to talk to that know s what your going through. God Bless You.