Fall Update

Sorry to keep you all wondering...again. Time is seriously slipping away from me. We are still busy, busy, busy but doing great!

Mason is almost 2 and a half now! My how time flies!

Mason is still a really great big brother. His sister is now 6 months old and Mason gives her kisses and tries to tickle her. He also brings her toys to play with and it is great to see them really get to interact with each other!

His lungs continue to stay healthy since our last post. We are keeping our fingers crossed that they are able to stay that way this winter! Overall, he has been pretty healthy since our last post with only 1 cold and a short intestinal virus. He just recently had a visit with his Pulmonologist who was thrilled at his progress and won't need to see him for another 6 months. This will be Mason's first winter without full lock-down! We are excited to have a bit more freedom this winter!

This fall, Mason is continuing with the IPSEP (infant and preschool special education program) through our school system. This year he is done with PT! Yay! He has almost physically caught up to his peers. Right now the only gross motor things he struggles with are jumping and walking up/down stairs while holding the wall or railing. He has started to walk up and down the step from our kitchen to our family room this past week, so we hope that the stairs will be right around the corner. He has started OT with the school system and we LOVE his therapist Norma. She has really taken the time to understand his quirks and is devoted to helping him learn to eat and to diminish his behavorial issues that are associated with food. She understands how important it is to make his therapy sessions fun.

We have also enrolled Mason into a program called Stay and Play. It is also through the school system and is basically a playgroup of normal 2 year olds. It can be a struggle for me to see Mason next to all of the healthy 2 year olds, and see that he still has a long way to go, I just get so hearbroken when I see this. I thought it would be easier, but it's not, it is really hard to muster the motivation to take him there. I do it because I know that he LOVES it and it is good for him. He is such a social guy and just gets right in there and starts playing. He has come soooooooooo far, but still has quite long way to go in many areas. He has worked so hard to get where he is today! There are about 8 kids in the group and I have only talked to a couple of Moms about what Mason has been through, the rest have no idea. This program is really good for him however, and helps him get over some of his sensory fears by watching other kids do certain activities. He is also picking up speech from some of the other kids and has learned "NO! MINE!" and says it pretty well :) His teachers are great and know exactly what he has been through and they are completely supportive.

On to other news....Mason had his evaluation by the Intensive Feeding team at DeVos Hospital in Grand Rapids. It was a long and comprehensive vist with a team of doctors and therapists. He has been accepted into the program, but will not start until early fall of next year. They are the only feeding program in Michigan and the waiting list is pretty long! In the meantime, they are working with us to decrease his gagging and retching. They have added a couple of meds back to his schedule and are planning on switching his formula to see if that will make a difference. We are just waiting on insurance approval before we can start the new formula.

Next month, Mason will have his yearly CDH clinic appointment at UofM. He will see his Pediatric Surgeon, Pulmonologist, Cardiologist, Dietician, OT and PT. It will be a long appointment, but great to have everyone together to discuss his plan for the next year.

In other non-CDH related news, many of you know that we have been cloth diapering our kids. I have always dreamed of owning my own business and recently decided to open up a internet retail store for cloth diapers and accessories. Great Lakes Diaper Company opened for business last month! Stop on by and check us out! Mason is our "testing" department supervisor :)