1, 2, skip a few...months that is...

It does really feel like that to me at least. This month, well actually last month, zoomed by at super speed. Things are holding steady here though. We had a wonderful birthday party, and yes, I was surprised with some gifts of my own as well! We had fun making our pumpkins this year although Noelani was being grouchy and wouldn't let me get any photos of her (I did sneak some but won't post them so she doesn't have a tissy-fit).


Alana's party was rocking and she was a skeleton-bat-girl and she was amazing. She did great overall and Noelani and Shaylin looked wonderful! Shaylin was a "glamor" witch and Noelani was a nerd. The funny thing with Alana was that she was actually an x-ray, not a skeleton. Go figure, my radioactive girl wanted to be an x-ray!

Halloween was a bit of a bust as Alana didn't feel well and then as we go to leave Shaylin threw up on the front porch...wonder-freaking-full lol. It was such a comedy of errors that I was ready to just go and hide under the bed myself. But being the fantastic parents that we were we went ahead and took them for a quick 30 minute trip to get some candy and at least try and have fun. It worked and they did have fun so all was right in the world of candy land. For Shaylin it seemed to be something she ate because she was fine later on that night and from then on. Alana has been in a perpetual state of unrest lately. Not bad but not good either. Confusing is more like it but again, if that wasn't the case around here then things would really be messed up right!

She is adjusting to her feeds, slowly. McDr cranked her down even more, she's now at 78 mL/hour for 2 hours. Oh and she is also on a pump now in order to do that. We had been pushing her 4 ounces via a bolus feed but she was having so much pain with that we had to come up with a better plan. We then tried 118 mL/hour and that still was hurting her so here we are. She's uncomfortable to some degree but it's better so we are going to try and just hand onto this and see if she can work through it.


We did also have her 6 year check up and even though we knew that she was FTT (failure to thrive) and was struggling with her height as well but here's the break down: On November 4 2008 she was 45.4 pounds and 42 inches tall. On November 3 2009 she was 43.8 pounds and 43 inches tall. Now if she was a 18 year old that might not be a cause for concern but being 5-6 it's a huge bummer. It's all good though, this is why she has a feeding tube now--we've just got to figure out her GI system and we should be golden!


There's been more going on, isn't there always, but for tonight I am going to wrap it up. On I will go over the rest of her appointment and what's been going on at PT & OT (increase hypotonia) and what we are doing in preparation for her care conference and what the deal-eo with the mitochondrial testing is. No I didn't forget to tell you about it, I've just been keeping it close for right now until we have some information we've been waiting on. I am getting sidetracked though so let me stop while I am ahead!

I'd also like to thank Rattles for her kind words and warm heart. She has honored Alana's site with an award and I wanted to sincerely thank her for that. She herself is an amazing young woman struggling with what life has challenged her with and she's doing this all with grace and laughter.