Health Update

Tuesday, February 10th was a bit busy with doctor appointments. We had pre-scheduled back-to-back-to-back (yes that’s three) doctor appointments with GI, neurology, and neurosurgeon. These were all just follow-up appointments and fortunately they were all at the same hospital.

GI was a follow-up to see how James has been doing with his digestion. We expressed our frustration with not knowing what was going on with him but were thankful that he seemed to be on the right path. She unfortunately didn’t have anything further to offer us and also agreed that we seemed to be on the right path.

I found a video online a few weeks ago that discussed digestive issues in people that have scoliosis. We talked about this, and she said that that’s absolutely a possibility. Because of the curvature of James spine due to the scoliosis, the digestive system is shifted a little bit which could be part of the problem. She recommended that we talk with our orthopedic doctor about this. James already has a TLSO (thoracic, lumbar, sacral orthotics), which we refer to as a turtle shell. It is used to help keep his spine straighter, but it is a bit cumbersome to get on and off so we don’t use it as often as we should. We may try to use it to see if it helps with his digestion.

After we got done with got done with the GI appointment, we headed over to neurology to meet with the neuro and neurosurgeon. This was a follow-up to go over the at home VEEG (video EEG) that James did back in December. There was a little bit of a change from the previous VEEG, and the neuro wanted to make another adjustment to James’ VNS. We told him that we would rather not make an adjustment at this time because we were currently dealing with the digestion issues. We didn’t want to make a change until we had that under control. He respected that and wanted us to schedule another VEEG for some time in May…this time in the hospital.

The day after that busy day of doctor appointments, he started to have his digestion issues again, so we slowed his feeds back down. The following evening, we ended up taking James to the pediatrician after I got home from work. James’ one-on-one nurse at school had said that his left lung sounded diminished earlier in the week. He wasn’t showing his normal signs of respiratory distress, so we weren’t overly concerned about it. When his palliative nurse popped in after James got home from school to check on him, she said that the left lung still sounded diminished. We decided it was time to take him to the doc to get checked out.

Between the digestion issues and the diminished lung, we wanted to get the pediatrician’s opinion. He said that his diminished sounding lung appears to be positional. It sounds great when laying down on his back or his side but sounds diminished when sitting up. As for the GI issues, the doc said that his might be James’ new normal, and he’ll have his good days and bad days. What is this, “Forrest Gump”? “Life is like a box of chocolates. You never know what you’re going to get.”

“Life is like a box of chocolates. You never know what you’re going to get.”

~ Forrest Gump

James is not the only one that has been having health issues lately. Stacy has had a rough couple of weeks, too. This past Thursday she had some pain in her neck and shoulders. She thinks she slept on it wrong. Then on Friday she was trying to step over something on the floor and stepped on one of the caster bolts on the bottom of James feeding pole.

Hopefully whatever is going around in our house isn’t contagious, or I’m next!

Valentine’s Day

Our little heart breaker hopes you all had a wonderful Valentine’s Day.

Look how much he has changed in five years:

The Perfect Sign

Stacy and I had a date night tonight. We grabbed a bite to eat and went grocery shopping. I know, grocery shopping is probably not how many people spend their date nights. But hey, it was a nice break from James. We love James to pieces and would do anything for him, but we just need a little break here and there to reset. While we were shopping, we found the perfect sign and had to buy it. Now we just need to figure out where to put it.

“You’ve got to take the good with the bad, smile with the sad.

Love what you’ve got, and remember what you had.

Always forgive but never forget.

Learn from mistakes, never regret.”