Random Gustiness

Saturday, August 1, 2009

Day 4

I was actually gonna post a few more pictures today but since I am still in my pj's and my camera is in the car, I guess you will have to be satisfied with a few words. Last night Kira and I slept at the Hospital so we wouldn't have to be here at the crack of dawn. On certain days they need extra blood draws so it's just easier to sleep here.

What else I have learned...

I still feel like Kira is getting real medication
4am spontaneous vomit the other morning is a good sign that she is getting medication
apparently children under the age of 21 are NOT allowed to be at the Aurora Mall without being in direct supervision of a parent, or they will be detained by mall security till a parent comes to claim them! That was fun.
Kali's recommendation about the Proposal being a good movie was correct
Computer geekiness is a genetically passed trait. Visible in both Kira and Kyle as they fight over the laptop and whose turn it is to be online
Kira is my hero because she still has not used the word "BORED" yet to describe this adventure. I think I succumbed on day 2?
Even facebook loses some appeal when you have unlimited time for it.

Wednesday, July 29, 2009

Medication Day 1- Again

The highlights of what I have learned today...

Kira is highly sensitive to Benedryl (just like me, if it "might make you drowsy" then it knocks her out.
Denver can have tornado warnings (and we have really big windows with an amazing view from the 9th floor)
Today is actually day 1 because yesterday was day zero and the picc line day was -1. So why does that matter? It maters because on day 14 we can go home.
Kira is #41 in this study and there will be 60 participants.
The "coolness factor" of the long term implications of this study drug gave me goosebumps today. This drug works, it helps protect your beta cells. It has been proven in several studies. Next it will be tried on people that are in the "will become diabetic within 5 years" range. It means that for the few people who have been tested and know that their body is already attacking their beta cells maybe this drug could get them to stop? Maybe they never develop full blown diabetes. This could change the whole protocol of treatment for these people.
So how can you get tested, or why should you? Glad that you asked because there is another study I would encourage anyone who qualifies for to participate in. It's called the "Natural History Study" being run by Trialnet. It is as simple as a blood test that checks for auto antibodies (they are present only if your body is already attacking the beta cells). This study calls for relatives of people that have been diagnosed with type 1 diabetes to get their blood checked to assess a risk factor. I myself was checked since my dad was diabetic. Kali and Kyle were checked because of Kira. We all tested negative for now. Kali and Kyle will be checked yearly till they are 18. All of Kira's cousins should be checked if they are under age 21. Here is the link for you to know who to contact about getting your loved ones checked.
Lastly, I think Kira is getting the real drug and not the placebo. Of course I reserve the right to change my mind later but as of today I think she is.

Tuesday, July 28, 2009

Medication -Day 1

Well I can tell these posts are going to get really boring really fast. So I will sum up what we expect of the next 13 days as a summary of today. We arrived at 9 AM and they took a ton of blood for tests (establishing a baseline to compare with after medication is given). Then we waited for results, and waited for the medication to be sent up to the nurse and waited for a Dr. to do a quick physical, and you guessed it WAITED some more. What do we do while we wait? We watch TV, sleep, watch movies, eat, sleep, surf the Internet, sleep, repeat. They have a children's activities center that you can play in, or check out board games from. There are lots of hospital people who come and ask us if we need anything. Everyone here is nice. I have been looking up things to see while we are here and have found lots of exciting stuff going on. We should be able to leave in about another hour to go back to Pace and Matt's house for the night. Tomorrow looks about the same except maybe a little less waiting.
I couldn't even take tons of pictures today because I forgot to charge my camera battery last night. So I will post a picture or 2 if anything exciting happens.
Kyle and his friend James are here with us today, they add a little comic relief. Kira is doing amazing. She is such a trooper and I admire her courage. Till next time.

Monday, July 27, 2009

Fast forward to Denver

There are sooooo many blogable things that I have not shared with you. I have tons of pictures I want to post from the many fun things we have done this summer. The problem is when life is happening at warp speed, who has time to blog? Yeah, me neither. So for now we will fast forward to today and I can at least be current for our happenings for the next 2 weeks. As I have mentioned previously my daughter Kira was diagnosed with type 1 Diabetes in February of this year. She has qualified for a research study that aims to "save her remaining beta cells" (the ones that produce insulin). Without this investigational medication her body will continue to attack her pancreas till she has virtually no ability to produce any insulin on it's own. Right now she is still in the "honeymoon phase" so her body still produces some insulin that we supplement with insulin shots. So as of today we are in Denver to take part in a double blind study (crossing our fingers that she is in the 50% that receives the actual medication and not the placebo). Today is considered day zero because she has a PICC line placed but has no actual infusion of medication. So here are pictures of this morning to prove how brave and amazing this little girl is!