Ian has now been at home for over 5 months straight!  I know some people follow the blog for updates on how Ian is doing, so I apologize for the lack of updates, but there really hasn’t been much to say – except that we are busy playing and having fun as a family.  We are fully enjoying the spring weather – maybe even too much as it seems to bother Ian a little bit if he is outside too much.  So – we’ve just had to start paying attention and using our outside time wisely.

As many of you have seen Ian has become quite the little star.  UofM – C.S Mott Children’s Hospital, the hospital where Ian had his airway splint surgery, did a press release last month because the doctors who developed the splint were published in a medical journal/magazine.  We knew there was going to be a press release because UofM contacted us for updated pictures and some comments, but we really did not expect the extent of the coverage.  The day of the press release we received phone calls from just about every local news station and the two Pittsburgh Newspapers.  Then, the articles started getting re-run just about everywhere.  It was really exciting.  I will say, I have/had no interest in being on the news.  Especially this version of me that is up about 40lbs from my normal chunky self (no worries, I forgive myself – and I’m working on it).  But – there are two very important reasons that we agreed to do the stories which are very tied to each other.

1 – While the airway malacia (floppiness) that Ian has is very rare, there are other kids out there that have it and are struggling to find an answer.  We felt hopeless.  The solutions that we were presented with weren’t great and Ian had already come so far – we didn’t want to give up on him or put him in a situation that could cause him more problems in the future.  It was scary and really difficult to see Ian struggle everyday to breathe.  I am in some facebook groups where I see other parents struggling with the same issue.  The problem is, because this condition is rare, and it is even more rare for it to be so severe, there are very few doctors that have seen these very severe cases, and even less who have seen kids actually get better.  There is very little money invested in a solution, because quite frankly, there is very little money to be made with finding a solution.  We felt hopeless.  Until I happened to see an article about a little boy who was saved with a 3D printed airway splint.  Thank God for hospital boredom and my addiction to my phone.  Garrett’s story saved Ian.  And Kaiba’s story saved Garrett.  So – we will talk to anyone who calls and wants to tell Ian’s story.  Because if it saves one child it will be worth it.

2 – A pair of doctors (and the team they were working with) decided to invest their time and research dollars into a solution that saved 3 kids and could help SO many more.  They need to be able to do a clinical trail to help more kids.  When we were presented with this solution it was a very difficult decision for us to take Ian to UofM.  Our doctors were cautious because there is no data to back up an experimental procedures.  These are doctors that we trust who were split on whether we should try it or not.  The reason – there were only two previous cases.  Not only would a clinical trial help other kids like Ian, it would open the doors to other uses for similar devices and research.  Media attention will help get the funding needed for a trial.  So – we will talk to anyone who wants to hear Ian’s story.

Ian is probably the happiest kid ever.  I can’t even begin to express how well he is doing developmentally.  He still has big hurdles to overcome with feeding and gaining strength to stand and eventually learn to walk.  But there is no part of me that doesn’t believe that he will do it all.

As always – thanks for all of your love and support.

And – as a reminder – if you are interested in walking with us in the Pittsburgh Congenital Heart Walk – please join us!  And it would be great if you could register ASAP so that I can include you in our count for team t-shirts.  The walk is on Sunday, June 28th at North Park at 10AM.  It is a Sunday.

http://events.congenitalheartwalk.org/site/TR/Walk/General?team_id=3565&pg=team&fr_id=1110
And – as always – some pictures: