Tuesday, September 27, 2011

2011 Run of Hope

This past Saturday, we walked in our second Run of Hope, a fundraising event benefiting Seattle Children's Hospital and the Pediatric Brain Tumor Research Fund.

We owe a huge thank you to everyone who helped us raise so much more than we hoped! Team Summer raised $8,599 - much more than our goal of $5,000! The event raised $199,070 total. For more information about the PBTRF and what this money goes toward, visit their website: http://www.pbtrf.org/

Here are some photos from the big day:

Thursday, September 22, 2011

Growth hormone update

Summer's growth hormone results finally came back and the numbers were low, as expected, so we are moving forward with the growth hormone process. It sounds like it's pretty much a done deal other than the hoops we're required to jump through to get insurance company approval.

The endocrinologist knew of one additional test the insurance company would require at this point, a growth hormone stimulation test, which I just scheduled for November 10th (the earliest available!). The test will be similar to the cortisol stim tests she's had before - they'll inject a medication to stimulate growth hormone production and then draw blood at several intervals to measure her body's response. The tests can range from 1.5 to 5.5 hours, depending on the stimulating agent they use, and the scheduler wasn't sure which one applies for Summer. Let's hope 1.5 hours...

After that test, assuming the results still indicate we should move forward, we'll hopefully get approval from the insurance company and Summer will start growth hormone about a month and a half later. The growth hormone will help her body grow properly, but it also has other benefits. Most people report that it helps with energy levels (like Summer really needs any help in that area...), and it's also expected to increase her strength and help with progress in motor development. It's certainly worth it, but we're definitely not looking forward to the daily injection it will require!

Tuesday, September 13, 2011

New blog layout...

Today was Summer's first day of preschool! When I gave her teacher the blog address the other day, it got me thinking that after almost a year and a half there's a lot of information on this blog. It's been my way of keeping track of all of the details and sharing them with anyone who is interested. But, it's not exactly easy to get up to speed.

I've added a new tab to the page called "Get caught up," which gives the short version of what we've been through so far for anyone who is new to Summer's story. I'll try to keep it updated as I update the main blog.

Thursday, September 8, 2011

3 month MRI update

Well, we made it - after an entire three months without an MR, Summer had a scan yesterday morning. It went without a hitch, and the results were good. There was no change from her last scan in June.

They also did some blood work today, some of which we were able to review with the Endocrinologist yesterday afternoon. Lately, Summer's been sleeping horribly (much worse than her newborn brother, Archer) - taking an hour to an hour-and-a-half to fall asleep at night, and waking up three times on average each night - so I had been a little concerned about her thyroid levels being off. They were on the high end of normal, but still within the normal range. The Endocrinologist suggested a slight modification to her medication to see if that will help, but if we don't see a change over the next couple of weeks, we can assume it's probably something else.

Everything else came back normal so far, although we're still waiting on the growth hormone results which is the one we expect to see a problem with. Her height, although she is growing, has decreased relative to other kids her age and she is now in the 10th percentile. We expect a call from the Endocrinologist in the next few days to go over the results and figure out next steps.

From prior conversations, we know that there will at least be an X-ray of Summer's hand to determine expected bone growth, but there may be other tests too depending on what the insurance requires. We've been told that growth hormone is often a hard sell for the insurance companies and we might have to bend over backward to prove she needs it. Our insurance company has been very accommodating so far, and I'm hoping that trend continues.

Overall Summer is doing really well. She is very happy to have a brother (and a mom that can more easily crawl around on the floor with her again). We haven't seen even the slightest trace of jealousy from her, which has been a pleasant surprise. The first thing she asks for every morning is to "look at baby Arch," and we often spend the first 30 minutes of the day all cuddled in bed together.

Right now we're preparing for her 3rd (!) birthday on Saturday. Next week, things will be getting busy as she starts preschool two days a week, and ballet starts up again next Saturday. I'll try my best to get another post in next week when we know more on the growth hormone front.

Also, don't forget - the Seattle Run of Hope is coming up fast! The date is Sunday, September 25th, and we'd love to see you all there! If you can't join us for the walk, please help out Team Summer by making a donation here. We were in second place for a while, but have been bumped down to fourth. Help us make it back up! We can't think of a better cause, AND first prize is a trip to Boston, which would take care of our trip for follow-up next summer.