Meeting Amos and Madi!!

Nash, Amos, and Madi
Iowa PFFD kids

When I first contacted Dr. Paley's office to schedule an appointment, they told me they had been treating two other kids from Iowa with PFFD.  I was surprised and kind of excited to know there were other kids and families nearby going through the same thing we were!  The said both families lived in Des Moines and the kids had both just finished the Superhip procedure.  We exchanged information and I got in contact with the moms, Heather and Lori.  I was so excited to talk to them and ask A LOT of questions. Thankfully, they have both been absolutely wonderful families and very willing to share their experiences with us. We have kept in contact through Facebook over the last year so I have been able to follow their journeys as well. 

We all decided to meet a couple weeks ago in Des Moines. We were SO EXCITED!!  The kids' names are Amos and Madi and they are absolutely amazing.  They are now both finished with their second surgeries.  Amos had his first leg lengthening this summer. He was in Florida for about 2 months for the lengthening and is very close to getting his fixator removed!  Madi had another hip surgery this summer because Dr. Paley wasn't satisfied with the bone growth from the first surgery so he added a little more.  She will have her first lengthening a year from now!

It was so nice to hear about all of their experiences and how they have gotten through it all.  To say the least...its not gonna be easy.  But now we have a better idea of what to expect.  From the surgeries and after care to where we can stay and which people to talk to about certain questions we have while we're there (insurance or medical).  Not to mention all of the "things" we will need... like a special car seat, a very tiny wheel chair, and special pants that are easy to put on and take off (in Amos' case, they just use a kilt :).  The kilt is actually a great idea when you have a large fixator you have to work around! 

The best part for me was to watch them play with the other kids.  Amos has 2 brothers and Madi has a sister.  We also had Aidan and Nash with us so there were a lot of kids!  You would have never known Amos had all those pins in his leg (I think there were 11 to be exact).  He was playing right along with everyone and so was Madi.  It was nice to see a glimpse into our future.  Especially since it was an encouraging one.  I'm so thankful for meeting these kids and their families and I hope we get to be each other's cheerleaders for a long time. :)