This is Caden’s Page and not Josiah’s page just in case you were wondering. Much fuss has been given to Josiah in recent weeks, but business is picking up for Caden. During the month of October we will see more specialist in one month than Caden has seen in over a year. This week we see ENT, Endocrinology, and get a MBS (Modified Barium Swallow). The big one are the ENT and MBS. This is the package deal we talked about a few weeks ago. Caden will go in for an outpatient UES dilation on Wednesday followed by a MBS on Friday. You can read the story behind this on the Plans for Swallowing post at the end of August.
Before I go into the details of the coming week, I want to share some fun I had with Caden a few days ago. I may have mentioned this before that Caden likes the taste of Coke. A few days ago I stuck my finger in my glass and let him lick it. He proceeded to reach for the glass after that. We know that the last MBS showed his swallowing was not quite ready to turn up a Coke, but you can bet your bottom dollar that I would let him drink a case of Coke if I thought he could swallow it at this point. Anyway, I decided to pour a little Coke into a small bowl so he could get his fingers in it. Boy did he ever. He got a finger on each hand wet with Coke and sucked on them simultaneously. Then he went back for more. He absolutely loved the flavor of the Coke. Normally I would not recommend giving a two year old Coke, but in this case, it was priceless just to see him enjoy the rare taste of anything. We did get a little video footage of the event and I will post that later.
Now back to the appointments. The Endocrinology visit this week is nothing to sneeze at. Caden has been lingering at the same weight for several months now. We want to get some guidance on his growth expectations and maybe some adjustments to the tube feeds. We are also interested in lowering the calcium supplement if possible. Calcium causes loose stools and loose stools make for difficult potty training issues. Need I say more?
A big event of the past week was that Caden finally got his live vaccines (MMR) along with a Synagis shot. On Thursday of this week we will all be getting flu shots, with the exception of Josiah. Having an infant and another child diagnosed with a compromised immune system warrants flu shots for the whole Osborne clan.
So Caden’s schedule this week looks something like this:
Monday: Pre Op – MUSC
Tuesday: Meet new speech therapist
Wednesday: UES Dilation – MUSC
Thursday: Flu shot
Friday: MBS and Endocrinologist – MUSC
Keep in mind we still plan to attend First Wednesday Service, begin a Preparation for Parenting Class, and have to feed 7 week old Josiah 7-8 times per day. Can you feel the stress level?
Anyway, this week is only the beginning. Caden will visit OrthoPeds next Monday the 8th. We have scheduled this appointment due to a concern for Caden’s back/spine. Caden’s physical therapist asked Sherry recently if Caden had seen the orthopedic specialist lately. The answer was, “not since June 2oo6 when Caden was diagnosed with a 40 degree curvature of the spin.” The therapist said that it looks to her like it may have gotten worse. We want to get Caden in to see the OrthosPeds folks before his cardiology appointment later this month. If an x-ray and review confirms what the therapist thinks, then there could be a renewed interest in getting that non-functioning pacemaker removed. If you remember, the pacemaker prevents an MRI which prevents a more certain prognosis for the short term in relation to the scoliosis diagnosis. If you are wondering what forty degrees looks like then imagine that in June 2006 when Caden was standing straight up for the orthopedic doctor that there was a place in his spine where if you drew a clock with the minute hand pointing in the direction of his spine, it would have been pointing to 7 1/2 😳 6 1/2 minutes past the hour.
With all this said, please pray specially for the following this week:
- Complete healing of Caden’s back and spine
- Caden’s sinuses to remain clear
- Caden to remain free from fever and infections
- Normal lab results for calcium and phosphorous levels in particular
- Safe travel for the entire family to and from these appointments
- Protection for all of us from the illnesses and diseases that live in the hospitals
A cardiology appointment is scheduled for later this month. We will post on that later. The rest of the family as a whole is doing pretty good. Josiah weighed in at over 13 pounds this weekend. Yes he is a little pudge ball for a 7 weeks old.
I mentioned to pray for Caden to be fever free. Caden has had a few more of those spiked high fever episodes in the recent weeks. (i.e., 103 or more) This week is not good timing for that sort of thing given the ENT procedure is on the schedule.
Blessings!