Almost time for convention ...

We're doing a day-by-day countdown to the MAGIC convention. Henry asked me three times this morning how long until we go to Chicago. How many days is that? Is it today? Is it tomorrow? He is sooooo excited. I think we'll get out our suitcases tonight and start putting in the essentials.

We'll be flying out Thursday afternoon and returning Saturday, I hope with lots of new info!

Henry is 5 :)

Henry turned 5 on Saturday!

With the help of Granny and Boopa, we had a lovely quiet celebration at home.

Henry really enjoyed his robot cake (not R2D2, exactly, but a hybrid -- fondant, even the cheating marshmallow kind, is tricky to work, and this was my first go at it).

We all went to an afternoon movie together, which was super great.

The funny and the far-fetched

So, Henry has to have surgery on his finger. June 17, two days before his birthday. We don't exactly know what's going on in there, and the hand surgeon says there's no way to tell without cutting the infection and growth off and repairing the nail and ligaments, etc., underneath. It's outpatient surgery in Omaha. Not too funny, definitely far-fetched -- I mean, who gets a bony tumor/infection on his finger at age 4?

Ok, here's the funny. Henry is telling all the children and teachers at school he's having his finger AMPUTATED. His words: "They are just going to cut my whole finger off, totally off. Amputated." I found out when a teacher asked when his surgery would be, and how he might be affected by losing a finger.

The MAGICal details

Henry, Auntie Erin, and me, in Chicago
for MAGIC convention 2006.
(Henry was 2 years old
at this time, and pre-treatment)

Here's a bit more information about the educational sessions I'd like to attend about Henry's disorder: (from the MAGIC convention program)

Treating IGFD is not always straightforward, there are many different options. Dr. Midyett will talk about the various options available and why different treatment plans work better for some children. Developmental delays can be very common in children with growth disorders. For the next segment, come learn about the common delays for children with these disorders and how we as parents can best help them. After lunch, Dr. Miller will give us straightforward information to help guide us through the transitional time of growth. Puberty can be tough enough for the average preteen or teenager, but it can be a very different challenge for children with growth disorders. It comes with decisions like whether to delay it, how to delay it and for how long to delay it. IGFD is new to most of us, including doctors. It is a learning process that we are all going through together. Dr. Miller will be talking about what steps should be taken to come to an accurate diagnosis, causes of IGFD and the future of IGFD. To end the day, come talk to other parents going through the same struggles and challenges. This journey is confusing and can be quite lonely with no one to talk to. Share your stories and learn from each other.

More about MAGIC and Henry

Thought I'd share a little more about the convention that Henry and I would like to attend in July in Chicago. It's put on by a group called The MAGIC Foundation, which stands for Major Aspects of Growth in Children. You can read more about this group here.

You can also read more about Henry's specific disorder on the MAGIC web site. The best part about this group is that it is run by parents and family of affected children. You can call the MAGIC help line or email the office, and another parent whose child has problems similar to yours will call and help answer questions. It's such a comfort.

The convention happens every year, and the children can get together and see that they are not the only ones who have a rare disorder, and the parents can network and get answers from top doctors in the field of their children's diseases.

If you would like to help Henry get to MAGIC this summer, I've added a donate button (over at the right) that will allow you to make a donation to Henry's expenses. Whatever money is not used to pay for the convention will be given to MAGIC as a donation for the great help they've given our family.

Ch-ch-ch-changes ...

The Starlings and the Fox is changes courses a bit. One of the starlings, my little Henry, has some ongoing health and medical issues, and the time has come for us to share his struggle, and maybe get a little help.

Here's the scoop: Henry has a rare medical condition, a growth disorder that not much is known about called Severe Primary IGF-D. Henry's liver and pancreas can't process the growth hormone his brain sends out, and so we give him two injections a day of a drug called increlex. It has helped his growth and immune function so much, but since December, our insurance has denied coverage of it. We're getting help from the company that makes the medication, but that help will run out in a month or so. We're working on an appeal to the insurance company, and keeping our fingers crossed that we can make it happen in time that Henry doesn't have to go without his medicine. (It costs $4,000 a month.)

In the meantime, Henry has developed another bit of trouble, and that's with his pancreas. We just got some test results that indicate Henry's body is attacking insulin receptors in his pancreas, and eventually, all the cells that process insulin will be destroyed, which is a long way of explaining type I diabetes mellitus. The good news is that his current medication has an insulin-like action, and it's helped keep the diabetes at bay.

There's one doctor in the United States who specializes in Henry's medical condition, and he's speaking at a convention for parents and medical professionals in Chicago in July, and may be giving informal consultations to parents and children at that time. He's also doing studies on new medications that could help Henry's combined problems with diabetes and growth. It's a newly discovered growth disorder, and treatment's only been available since 2005 (the year Henry was born, how crazy is that?!).

So .... we'll be doing some fund-raising in the next couple of months to gather up the money we need to get to Chicago, pay for the convention, and get some good information about Henry. We may also be looking at paying for treatment somehow. Stay tuned if you think you could help.

Ouch, allergic to thought?

So, New York University President John Sexton on Bill Moyers Journal says Americans are allergic to thought .... and universities (and professors) should be at the forefront of turning that tide. That's something to think about, unless you're allergic!
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