So, I just have to put this down for us to remember on the really tough days….
When Jackson was born in February 2007, we were given the name of a family in BR that had a child with Arthogryposis. When we brought him home at 8 days old, I called this family and spoke with the father. It was not a very supportive conversation, but none the less, he gave me the name “Dr. Judith Hall” at Seattle Children’s Hospital and the number there. I wrote it all down in a little note pad. About a week before we left for Conference in KC, I found that little note pad, which had all our information (who Jon was to call after the baby was born, how much I pumped, how much he ate, etc.so, I’m a little OCD) and that information! I thought in my head “one day, maybe we will go to Seattle”. Over the past 4 years since Jackson was born, we have “toyed” with the idea of going to Seattle, but it never quite worked out or we didn’t think we could gain new knowledge by going there.
One such instance, was when we met Dr. Judith Hall at the AMC Conference in Philly. She took down all our genetic history and then looked at us and Jackson and said “He puzzles me!” At that point we decided we were receiving great treatment here and that if the one and only Dr. Hall couldn’t explain our miracle, then why put in the time and resources to travel over 2000 miles!?
Fast forward to the Conference in KC just earlier this month. We met Dr. Kit Song from Seattle Children’s. Sitting on the BOD of AMCSI, I don’t get to sit in on many sessions, but I was able to sit in on this one. I took lots of notes (see an OCD pattern?) and then when Dr. Song was done speaking, I texted Jon to bring me Jackson. We took Jackson up front and Dr. Song graciously gave him a once over. He told us that he wasn’t sure if Jackson had knee caps and if he did, he wasn’t sure if they were in location. Dr. Song also added that he thought we needed to do a soft tissue release on Jackson’s knees and/or hips.
When we arrived home from KC about 2 weeks ago, I called Seattle again. I hadn’t heard back from them on that Thursday, so I called again. Sharon, the intake person answered the phone and told me they needed ALL of our medical records and a referral from our pediatrician and that they had openings for the August 31st clinic (unheard of!). I ran around like a crazy person and got all the information and sent it to her. I called on Friday to follow up and she told me they had everything they needed to schedule us and they still had openings on for the August 31st clinic! We scheduled and I hung up the phone and freaked out! How in the world were we going to afford to fly to Seattle!? I contacted Angel Flights, but they only fly 3oo miles, so that was out. In that moment, I just said God, if this is your plan, then you’ve got to make this work. Well, don’t you know, HE DID!!! Someone blessed us with plane tickets on Friday NIGHT!!!
We leave in a little over a month and we are believing that this was all His timing and that we will come away from Seattle with a lot of answers! We are also believing that this will be our answer to walking! Please join us as we pray over the next few weeks and BELIEVE for our bumblebee!