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!Just outside the Children's hospital
They had her room all ready for her.

Look at my big room!
security around here is tight

hurry up and wait
ahhh free Internet, makes me smile
My cute nurse

Kira's only IV she should have this trip

They have a "transportation specialist " here

in the surgery room

They put me totally out to place the Picc line

eating and recovering

Sunday, July 19, 2009

Newport, Oregon and all it's splendor

The Darlings
What it looked like most days.

What it looked like the day we did family pictures. (some prayers are answered)

We even brought my pampered pooch, Bella. It was a family vacation and she counts.

Benjamin & Quinn

Playing in the waves

Rex & Mom

Niklas- the cool surfer dude

The distance from our rental to the water. Ours is the little blue one.

Kira & Anthony wave jumping

The Schulze family

poor jellyfish

Anthony & Kira

bonus question: name this little critter?

underside of said critter. I don't know what it is?

The whole crew. (not bad for using a timer, huh?)

Wednesday, July 1, 2009

Ahhhhhhh.... another teenager!

Today Kyle turns 13!!! Happy Birthday!

At 6AM when Kyle returned from the shower, look who he found...

Shae & Alysann.

Lime green ballons and presents too!

Good friends are priceless!

Missoula, Missoula, Missoula

Montana that is. Yep I just returned from the annual swimteam excursion to that far off destination. This year all 3 of my kiddos went so it was almost a family affair. It was fantastic! Good friends, long bus rides, plenty of sunshine, excellent coaches and several "best times". Here are some of my favorite pictures...

Kira, Kyle and Kali

The lovely Splash Montana in the background

Saturday morning was a bit chilly till the sun was on the whole pool

Lisa and her amazing skinart

Team spirit


Dippin Dots- highly overpriced but a summer must-have

Kali doing the backstroke

Ken, that sure is a nice vest to go with your suit

Hyrum & Kali


Luke, Brad, Talon, Ken & Hyrum...Seniors now... need I say more?


Coaches Tim, Lisha, and Shawn

Bored? at a swim meet?

Kira's breaststroke

Kira, Hyrum & Kali "did you guys match on purpose?"

passing the time till your next event