10/20/13 - Elliot's Next Steps (cont'd)

As the best and most sought surgeon for bone dysplasia, the earliest Dr. Mackenzie could perform surgery is February. We asked for some details on what this might mean and were told that we should plan for one-week in DE to prep, do surgery, 3 days in the hospital post-op and a cast. In 4-8 weeks, we return to DE to remove the cast and begin physical therapy with the DE staff, who has expertise with children in similar situations. We would then continue PT back in Milwaukee for whatever is needed. Even Dr. Mackenzie said we cannot predict next steps until the initial surgery is performed. So, here we are:

Anticipated February Surgery

Following our visit to Madison, we plan to contact Dr. Mackenzie's wonderful assistant, Colleen to schedule the surgery in February. Once scheduled, our preparation begins. As you can imagine, the medial bills are mounting. We have the audience of the medical providers, but need to address the very critical financial need to ensure Elliot can continue to get the care he needs in the years to come. A couple of months ago I approached my sister, Christine, with an idea for a website. A site for Elliot where I could share all the information, pictures, updates, and ask family, friends, community, even strangers, for help to support what Elliot may need now and in the future. Coming soon, we will have www.elliotsroad.com. A dedication to Elliot and his journey ahead and the means to help him not only walk again, but do all the things a 9 year old boy should do – run, play baseball or simply take the stairs. Elliot is one of a kind – he never complains..he simply adjusts. When we walk, he crawls – "Mom – look how fast I can go!!' as I watch him zoom across the floor of our home. I purchased knee pads for him last week and he was excited, but per Elliot, they are really comfortable but slow him down. Still searching for the right knee pad "fit" so he can zoom away crawling, with a bit of cushion ( and less holes in the knees of all his pants), until surgery early spring of next year. He can't run, and can barely walk, but Elliot is so excited to be the fasted crawler you ever saw. "Isn't it cool that it sounds like a horse?" he says to me. "Sure is! That's so awesome!" I say with pride as I look upon this wonder of a child.

Thankful for the Support

Before I end this update, I want to share how proud I am of my other children and their support of Elliot and his needs. Micah has been with us on all trips and Jessica and Nick have stayed home on their own - genuinely interested in how the trips went and the details of what's next for Elliot. I can't imagine how hard this must be for them – Jessica, Nick and Micah. Elliot never asks for special attention, and quite frankly, doesn't want it. They are each an amazement and wonder in their own way. I'm very blessed. A very special Thank You to Kaile for a wonderful phone call before our trip to Wilmington. We are so very proud of you and look forward to the visit we are planning soon here in Milwaukee.

Thank you all for your kind words, thoughts, and prayers for Elliot and his challenges. Without your love, support, and prayers, none of this is possible. Until next time….

Janet