1 Year Home - Aug 20th

I know...I haven't posted in a while. It has been a busy couple of weeks again. Now that Mason is crawling around, it is next to impossible sit down at the computer for more than a couple of minutes. Our mobile little guy doesn't spend more than a few seconds in each spot and then he is off to the next. He usually crawls right past his toys in search of some trouble spots like the dog dishes, electrical outlets, curtains, stairs, etc. I guess they look more exciting :) He has also learned how to pull himself up on the couch and chair and is starting to cruise around. I can't believe how fast he is developing physically.

We had the chance to celebrate Mason's homecoming anniversary on August 20th. I can't believe he has been home for 1 year already! Time has gone by so fast! Mason has far exceeded everyone's expectations and has healed and progressed so quickly. The only piece of medical equipment we have left is his feeding pump. I look at him today crawling around and it is hard to believe that just over a year ago he was fighting for his life. We want to thank everyone for their prayers and warm wishes over the last year. We also want to thank everyone involved at UCSF and UofM for giving us hope that one day we would be able to bring our little boy home. It has been such a wonderful and rewarding year!

Mason on his first day home, 8/20/07

Mason 1 year later!

Since our last update, we had the privilege to participate in a CDH dinner at the UofM Ronald McDonald House.on Aug 12th. There were about 6 CDH families that joined together to cook a summer dinner for the RMD House guests. We volunteered to grill the hamburgers and hot dogs at our house since we lived close. Travis was such a trooper and he grilled 60 burgers and 30 hot dogs when he got home from work. It was wonderful to have a chance to help out the residents at the RMD house. Although we didn't stay at the house (since we live so close to UofM) when Mason was in the hospital, most of the families that we met had stayed there. UofM is a major center for CDH and heart defects, so many families come from great distances to receive care. The RMD House provides them a home away from home so that they can concentrate on their loved ones.

Travis hard at work grilling

In other news, Mason has started to take a few steps forward with oral eating. He is now drinking some water, about 1/2 ounce per day. For most I am sure this won't sound like much, but for Mason it is HUGE!! Just the fact that he is willing to drink is a big step forward for him. He is also willing to put some things in his mouth to lick. The most popular items are animal crackers, puffs, and goldfish. This is also a very big step for Mason. It shows that he is now willing to experiment and taste a little. Hopefully he can continue this upward trend :)

Test Results & Crawling!

We had a very busy week last week. Mason had 5 appointments at UofM for various follow ups and tests. We received some pretty good news from the tests.

Mason started out the week visiting his Physical Medicine doc who is keeping track of his physical development. She usually sees him every 3 months just to make sure everything is on track. Initially when she first met Mason, she was very concerned that he might have Cerebral Palsy. The last two visits went great and she sees no evidence of CP! Mason is just starting to crawl (more on that later...) and he is also good at standing and is even starting to try and cruise. She said that Mason is within the range of "normal" for his age! After all he has been through, we didn't think we would hear that term until he was 2 or older. Mason continues to amaze us with his strength and growth.

After this appointment we visited his OT for some feeding therapy. This appointment was business as usual, although Mason has learned to give the stink eye to his therapist. He tells us loud and clear that he does not appreciate these appointments. The OT and I agreed that we need to get Mason off of night feeds. The stomach and digestive system was just not made to get a continuous drip overnight. After much debate with the rest of his care team, the decision was made to remove Mason from night feeds for about 7 hours. This reduced his overall calorie intake, so we will watch his weight closely to make sure he is still growing appropriately.

Wednesday was our biggest day. He had a Pulmonology follow-up and then a PFT (lung function test). Mason weighed in at 23 pounds, 3 oz. The Pulmonary team was impressed at his new size and thought that he should be able to handle the winter months pretty well (with lock-down of course). Next was the big test. He was sedated and the lung function test was performed. Are you ready for this? Mason's lungs are almost normal for his size and age! He falls just below normal and is categorized as having only "mild restriction". After winter, the docs feel that he might be able to shed some of his breathing meds! This is absolutely amazing to us. For those of you who don't know his whole history, Mason was born with severe right sided CDH. He was born with almost no right lung and a severely compromised left lung. It is truly amazing how the human body can recover from something like this.

We ended the week with a hearing test. Mason passed this without any concerns to follow up with. He will continue to be tested every 6 months until he is 4 years old. CDH and ECMO have a strong correlation to progressive hearing loss. It can happen at any time and progress to be moderate to severe in many kids. Before these tests, we always prepare ourselves for the possibility. We will see what happens next time...

This week, Mason started to crawl! It was so exciting to watch and he is so proud of himself! He started by getting onto all fours by himself and a couple of days later he was propelling himself forward. Last night he was trying to crawl everywhere! He has also figured out how to get himself into a sitting position. I left him on the family room floor (lying down) so I could put a pot of water on the stove and when I turned around he was across the room sitting down with a huge grin on his face.