Summer Fun

Mason & Great Grandma snuggling on the 4th of July

Bath time in the kitchen sink!

Mason & his buddy Noah at the ECMO picnic in June. I love this picture because it looks like Noah is devising a plan to get his toy back!

Mason listens intently as Noah explains how eating really isn't as bad as it seems...

Surgery & Recovery

Sorry it has been so long since we last posted. It has been a busy couple of weeks with some new happenings.

I have been talking extensively with Mason's OT regarding the suggested feeding programs. At this time she is very against it and advised that it should be our last option if nothing else works. Especially in Mason's case since he seems receptive to food, but his gag reflex is preventing him from eating. We both agreed that we really need to give him some time to resolve it with home and weekly hospital therapy. Right now we are working with toothbrushes to try and help desensitize his mouth. We also agreed that we needed to know how is esophagus functioning and if this is contributing to his oral aversion. We agreed to schedule a swallow study to check it out.

The swallow study took place Thursday of last week. It is basically a test done with x-ray fluoroscopy where Mason sits in a special seat and drinks a barium liquid. It is usually done to see if babies aspirate any into their airway while swallowing. Since we already know that Mason does not do this, we were just concentrating on the motility of his esophagus (or how well it pushes food into the stomach). Getting Mason to drink was near impossible, so we ended up squirting some into his mouth for him to swallow. We were presently surprised when we saw the food traveling down into his stomach. The one issue we did find was that not all of the liquid traveled into his stomach. There was a little that sort of "sat" on top of his Nissen wrap. After reviewing the test, our surgeon decided it was worth while to dialate his wrap one more time.

Mason has had an outpatient surgery scheduled for some time to do some maintenance work that was not an emergency before leaving the hospital last year. The surgery was scheduled for July 21st when Mason was over 1 year old and over 20 pounds. Mason's team of docs agreed that we should do the wrap dilatation at the same time so that he would only be under general anesthesia once.

Mason had both procedures on Monday and they went well. He actually weighed over 22 pounds when they took his pre-surgery vitals! He came home a couple of hours later and did great that night. Yesterday he had a tough day coping with the pain from his originally scheduled surgery and was breathing pretty shallow. This is common after a surgery and it was his way of trying to protect himself from more pain. Since he was also running a fever, we called the pulmonologist and she suggested to take him to the ER to get a chest x-ray and to make sure his sat's were ok. By the time we reached the UofM ER, we had managed to get his pain under control and he was taking a nap. His sat's were 97-100% and his x-ray looked good (they wanted to rule out pneumonia). Today he has been back to his normal self.

A couple of weeks ago we purchased a front facing car seat and he has been using it this past week. He found the first one we bought to be uncomfortable so we ended up exchanging it for a different one and he loves it! Mason is also getting a little closer to crawling. He does really well when we give him a little support under the chest. When we take the support away, he has a hard time keeping his knees under him. He has the motion down and hopefully with a little more strength and stretching, he will be crawling after Buster! We are also working a lot with trunk rotation and getting him to transition from laying down to sitting. This one is proving to be a bit more difficult than we anticipated. Mason is also doing better standing against furniture and has learned to fall onto his butt, where all of the padding is :) He is also starting to cruise a little when he sees an object he wants, like the remote or the phone. We have given him a bit of a break this summer with his PT and are hoping to start back up at UofM in August and then with Early On when school is in session.

I will post some more updated pictures in a few days...

As some of the other CDH mom's have mentioned, there has been a CDH full moon this past week. Some of the kiddos that were home doing well have ended up in the hospital for unplanned surgeries and illnesses. Please say an extra prayer for Ethan, Sofia, Cadenne and Zach.

Big Boy

I have lots to update, but I have to start with Mason's ped. surgery appointment yesterday. He weighed in at 21 pounds 2 ounces! I was just hoping for anything over 20 and he blew right by that. It was a gain of 2 pounds in just under 4 weeks. We are hoping that it was a true gain and not fluid retention. He also had a chest x-ray and it looked good, everything is where it is supposed to be. Our surgeon was comfortable telling us to come back in 11 months! WOW! She also suggested the possibility of looking into an intense feeding program for Mason since he is still struggling with oral feeds. We are just starting to research what is out there but are not sure if Mason is really old enough to handle such an intense program. Thank you to all of the other CDH moms for your input and advice so far!

Last weekend was the UofM ECMO picnic. We went and had a blast. Mason was reunited with his ECMO buddy Noah and they even had a chance to play. It was great seeing everyone that took care of our little guy when he was so sick. We even had a chance to see Ethan, another CDH buddy that was discharged on the same day! It was great to see how many lives ECMO has touched.

We started our fourth of July by giving Mason his first haircut! It was getting pretty long and he was growing a mullet. He handled it well and now looks very handsome :) We spent the 4th of July at Grandma and Grandpa's house. It was a chance to celebrate Mason's birthday and summer freedom with everyone (since we decided to keep his 1st birthday party small). Mason even had a chance to hang out with his Great Aunt and Uncle from New Mexico.

Pre-Haircut - "Do we have to?"

Post Haircut - What a handsome boy!

On Sunday, Travis and I took Mason to a petting zoo. He has shown a complete love for animals, especially dogs. He loved it! When we were paying our admission, there was a donkey that was just wondering around freely and Mason thought it was so funny. He got a chance to see some pigs, cows, goats, etc. He even tried to pet a few. Of course I was standing by with my antibacterial wipes :) I was worried that the smell would get to him since he has some sensory issues, but it didn't seem to bother him at all. Before we went to the petting zoo, Mason had his first out to eat experience at Jimmy John's. He didn't want to eat anything, but seemed to enjoy flirting with the staff.

My First Eating Out Experience

Check Out Those Horns!