Today we start our journey anew, heading back to the Fairview Children’s Hospital in Minneapolis. We are working with a little more knowledge, a little more confidence, a little more optimism, but still with the spectre of time and uncertainty watching over us. As much as we have gotten done in terms of diagnosing, fundraising, investigating, rehabilitating, and just living, we still have more of everything to go.
Yesterday morning the little man woke me up with a big hug, then looked around, finally staring at the kitchen. Then at me. Then back at the kitchen. Yes, Daddy, I would like some breakfast thankyouverymuch.
I don’t think I could love his personality any more than I do. Even when he’s being, as I term it, “tiny”, crabby because he’s either tired or frustrated, it’s the most adorable thing ever. His adventurous nature, exploring, and even trying new things and new experiences. A few days ago I had the fortune of a day off from work with him, so we spent some time at the swimming pool. He wanted to climb out onto the ledge, so I helped him; he turned around, and by the look on his face you could tell an idea popped into his head. He crouched his legs just a little bit, gave a big smile, and “dove” at me. I say “dove” since a) he doesn’t have a lot of leg strength to propel him into a dive, and b) my hands were about 4 inches away from him in case he fell. But it was a dive nonetheless.
So I’m hoping that this willingness to explore and try new experiences will continue into trying new treatments and a new diet (the miglustat requires him to basically be on an Atkins diet — no more cookie nights!). And I’m hoping that willingness rubs off on me as well.
- If you have not found us on Facebook, please do, it’s a good place to get updates, share your thoughts or hopes, and see really really cute pictures.
- On August 11th, Dairy Queen celebrates Miracle Treat Day, where funds raised from Blizzard sales will be donated to Children’s Hopital. If you live in the Dayton area, visit the Dairy Queen in Centerville, where every dollar donated to Children’s will be matched with a donation to Armand’s Hope. Additionally, with an individual donation of $5 made that day, the Centerville Bronze Salon will offer you one free tanning session with no restrictions. Once we get back from Minneapolis, we hope to add some more offers as well.
- The help we have gotten from all over has been a blessing, and we can’t thank our friends, families, and even strangers enough. We found out that we were denied help from BCMH(Bureau for Children with Medical Handicaps) and the coverage we thought they would offer for things like therapies and his hearing aids. So now, even moreso, we need all the help we can get.