It has been a couple of busy weeks for us as I am sure it has for you. I wanted to take a moment to share the results of the Modified Barium Swallow (MBS) done two weeks ago today. The short version of the story is to say that the MBS showed no signs of increased swallowing functionality. This is certainly not the result we were hoping and praying for, but we will press on.
I have been pretty successful at getting Caden to take things by mouth so the therapist let me feed him while he was strapped to the x-ray machine. The picture here was taken in June 2006 just before the heart surgery that Caden went through on June 15, 2006. That was the “before surgery MBS” and then there was an “after surgery MBS” once he healed. That was the surgery where they severed the artery that was protruding in on his esophagus. That was also when they implanted the pacemaker that was found to be malfunctioning at the six week follow up for the surgery. ARGH!! We should have never got thing in the first place.
Anyway, Caden will continue being fed and hydrated with a feeding tube for the time being. Everyone’s still scratching their heads to find an answer. Caden’s ENT is supportive of us going to CHoP for the 22Q clinic or to the Feeding and Swallowing center in NJ. Oddly enough, the speech therapists have not been very supportive of this idea. Even more odd is the fact that we are on our 6th speech therapist in about as many months. They all feel confident hat they can handle Caden’s case, but none of them stay around for long. They all end up moving on to bigger and better things that take them out of reach from working on Caden’s case. One moved, another retired, etc… It just seems to be a very high turnover field in this area.
I want to share with you a rare video. I took the following video clip from Caden’s most recent MBS on December 17th. I hope this gives you some idea as to what we are dealing with concerning Caden’s swallowing functionality. In this video, Caden is being given a form of barium that is about the consistency of water. I gave him about a teaspoon (5 ml) in this instance. You will see my hand tickling his chin trying to get him to swallow. I even took a little task to demonstrate to him what he needed to do. He did go through the mechanics and motions of swallowing in this, but the liquid hit a brick wall at the top of the esophagus and just pooled up. There was a little trickle of fluid that got down right at the about the 38 second mark in this video, but after that there was nothing. I cut the clip just before suctioning out the barium residue. Then we went to a thicker form of barium and that was delivered by spoon. We saw the same results with the thicker stuff. This video demonstrates why we have had to carry a suction machine to help Caden clear secretions and nasal drainage. When he was an infant this was life threatening because he did not have the strength to cough any of it up like he does today.
The rest of the Osborne gang is doing pretty good. Our big boy Riley came down with something last week that actually required an antibiotic, steroids and breathing treatments. I can not remember the last time he had an antibiotic. He is doing much better now. Josiah, our little linebacker, is weighing in at 17 lbs at 4 1/2 months of age. He is sleeping about 11 hours at night uninterrupted…YEAH!!! Thanks Gary and Anne Marie Ezzo for your wisdom in Preparation for Parenting and Babywise!!! Josiah has also been started on solids and he is loving it. Sherry is making her own baby food and she is loving that. I think I saw her actually eating some of Josiah’s food the other day. Mommy and Josiah have a passion for acorn squash. 😉
I took my first trip to DC the week before Christmas. Sherry and the boys actually dropped me off at the airport after Caden’s MBS on the 17th. “First trip” does imply more to come. I took a new assignment that will have me traveling about a week per month, mostly to DC. Sherry and I have talked at length on the subject of travel for about a year now. We…she feels that she can tolerate me traveling up to a week per month. Traveling does come with some perks that softens the affects on our family not to mention this assignment has a ton of potential for me from a career perspective. As for the perks, Sherry will travel to Arkansas next week on a ticket purchased using flyer miles. Riley’s reaction after my third night away tugged on my heart strings most. Sherry said that he prayed and asked God to not make me travel anymore. She tried to soften it with some explanation of the perks and he seems to like the idea of free airplane rides even though he has little concept of money at his age.
Update: As we click off the last couple of hours of 2007 here in Goose Creek, SC I decided to update this before emailing everyone. Most of this post was drafted last night. As of this morning we found out that our big boy Riley is doing much better with the illness that popped up last week, BUT he decided to share it with Caden and Josiah. At the present time, all three of our boys are on antibiotics. This bug is definitely contagious and was bad enough for us to cancel a New Years grilled pizza party. We were having a few friends over for a BYOC (bring your own Coke) family friendly New Years celebration after work today. We planned to celebrate a Zulu New Year together so all the kids could get into bed by a decent hour. Oh for all you non-military types, Zulu is the equivalent of Greenwich Mean Time. And if you have never grilled pizza, then you need to check out the recipe we use for these occasions.
Happy New Year and many blessings from the Osborne family!!!