It's been a week since I've written and it seems like no time at all - everyday has been filled from the moment I wake up until I manage to crawl into bed at the end of the night. Finally, our records for Atlanta are finished. Now I am in the process of sorting our clinic notes by specialty and putting together a binder of each girl's history, including a detailed family history and timeline of the onset of their issues. Hopefully this will really start to make our appointments more productive.
Audrina will be 8 months old tomorrow. I spent some time looking at pictures of Addison at 8 months and wow, what a difference. Its bittersweet and nervewracking at the same time because despite our belief that her diet is partially what led to her regression, Audrina is approaching the time when that happened. Part of me is still scared that Audrina is suddenly going to get worse too. Luckily, this isn't really based off of any medical facts and is mostly just the product of an overtired brain belonging to a scared mommy.
Audrina does not seem to be making progress toward sitting, which stinks. She shakes hard and throws herself so strongly that even if she could sit, it would be dangerous. A couple goals I have is to have her sitting alone by Christmas and crawling by her first birthday. When I put it that way - we have a lot of work to do! :) I wish I could feel her getting stronger but I remember how tough and strong she was when we brought her home 7 months ago and I just don't see a ton of improvement there.
We asked to see a new neurologist to evaluate the arching and develomental concerns and still waiting to schedule. I hope Dr. K will be able to touch on this while we are in Atlanta and maybe help me brainstorm as to what the best route is to tackle Audrina's complex issues.
Nephrologist called a while back and said at the time he saw Audrina, everything clinically looked great and he can't pinpoint what is wrong with her kidneys. I guess he would have to catch it on labs when its happening - like everything else with her, the function stabilizes when she's not having an 'episode'. The problem with that is that its not uncommon to wait a month or two between the time you are having a problem and when the doctor can see you. Now that we are patients, if it starts up again, we should be able to call and get labs done right away. Hopefully that was just her adjusting to the increase in calories in her formula and won't happen again. She is peeing good right now and little to no protein in the urine, so she seems to be doing okay in that regard.
One of our nurses at the Colorectal Center in Cincinnati passed away unexpectedly, that was very sad news this week - she was a very sweet lady who genuinely cared about the patients (like everyone at the Colorectal Center!). I'm sure she will be sorely missed.. please say a prayer for her family, especially her husband and twin sister.
While we are on the subject of poop - Addison is doing the best she's ever done in that regard, she's even going on her own most of the time the past few weeks, which is absolutely HUGE for us.. The longer we are on the elemental diet, the better things are getting! Audrina is backed up and not stooling again so she is needing a bit more aggressive regimen - I can't be having her going every 14 days now with the tube feeds, she starts throwing up after just a few days.
Audrina's tube is growing some funky stuff today that came on very rapidly so looks like we will be getting that checked out tomorrow. It's red and swollen so I am really praying hard its not going to get infected - we can't afford a hospitalization this close to our trip to Atlanta. Just 6 more days..
Finally, to update on myself (thanks to those who have sent messages asking about me - it was very sweet) My bloodwork came back that my hemoglobin, hematocrit and iron and ferritin are all very low, but everything else is normal. So at least we know why im so exhausted (besides the fact that my life is insanely busy and stressful!). I'm still throwing up a lot and having nausea almost all day along with some other GI concerns. Going to treat aggressively with iron and zofran. and see the doctor to decide on a plan at the end of the week. Its been very difficult taking care of the kids when I am feeling so awful all the time...so hopefully someone can figure something out soon so I can get back to being myself.
A few thank you's:
We've had some fabulous artwork, cards, gifts, and treats in the mail from our friends lately :) Thank you, especially to those who specifically reached out to support Brooklyn and Lily. They really were proud of the mail they received and have been bragging about what great big sisters they must be if even strangers know it. :)
We had some good friends drop us off a yummy homemade dinner tonight, and with me not feeling well, this seemingly little act of kindness was a very significant gift to us. Thank you!!
Thank you to those who write messages of encouragement, of hope, of prayer, or just to say "hey I read this somewhere and thought of you!".
Thank you for reading this. Even if you've never commented, never done anything but simply read it. You are participating in our struggles whether you realize it or not and just seeing you as one of the 140,000 page views here means a great deal to our family.
Kim & Adam & Family