If you saw a woman walking down the sidewalk with an empty stroller, what would you think? Would you be concerned that maybe they left their kid somewhere? Or would you feel sad for them because maybe they lost their child (as in passed away), and taking the empty stroller for a walk is part of their grieving process?
I really don’t know what I would think if I saw that, but that is what Stacy did a couple of weeks ago. It was a nice day, so she decided to get some exercise and walk to pick up James from school instead of driving to pick him up. He has a wheelchair that we keep at school for him to use while he’s there, so in order to walk him home, Stacy had to bring the stroller.
Did I mention that it is a mile and a half from our house to the school? That’s three miles there and back. I don’t think I could do it! I mean I probably could if I had to, but having to do something and wanting to do something are two totally different things.
Is it just me or does James look big in that picture? He just turned four. Are four-year-olds supposed to be that big?
Even though we’ve been navigating this world of special needs for four years now, we’re still learning stuff. The physical therapist at school has recommended a different chair for James to use at school other than his wheelchair. She wants to see him in a different type of chair. Something that is a bit more positional. Our insurance denied it because they had just bought him his wheelchair last year. The physical therapist got involved and even spoke to the insurance company on our behalf, but they wouldn’t budge.
We thought that was the end of it. It wasn’t. Stacy got a call on September 24th from the physical therapist telling her that the school district is going to pay for the new chair. Seriously?! We had no idea that the district could or would do this. Stacy had mentioned this on Facebook, and someone had commented that if the chair was going to be for school use (which it is), then the district should be paying for it, and not our insurance company. I don’t know if that is true or not, but it does make sense.
Time for some more proud parent videos. James is continuing to work hard during physical therapy at school. Here he is rolling to the right:
And rolling to the left:
Head lifts:
James’ Runner Sent Him a Shirt
That’s all I’ve got for school, but there are a couple of other things I want to share. Remember about a month ago how I said that there is an organization that pairs runners with those that are unable to run, and that James now has a runner? Well, she sent him this cool shirt:
Patch for Secretions
It seems like the patch that the new pulmonologist prescribed for James’ secretions is working. At least for the first day. Per the prescription, we’re supposed to replace the patch every other day. On the first day of the patch, James can go hours without needing any suctioning. So far, his record is in the neighborhood of five hours between suctioning. This is a huge improvement from the thirty-minute or hourly suctioning that we’re used to. On the second day, as the patch starts to wear off, he requires more frequent suctioning, but still not as bad as he used to be.
Having a Rough Day
This afternoon James started to make a bad turn. It may have actually started a couple of weeks ago when he had a low-grade fever that only lasted about a day or so before it was gone. A couple of days after that fever he had a very cranky day. He was very upset about something and couldn’t stop crying. That was about a week ago. He’s seemed pretty fine since then. As a matter of fact, the videos I posted above were taken just this past Thursday and Friday. He was working hard in school, and everything seemed normal.
Then today he took a rather drastic turn. Tonight, he’s been doing the whole double breathing thing, his sats are in the low 80s, and his heartrate is around 150 beats per minute. We’ve been thinking about taking him to the emergency room, but we’re going to wait to see if he comes around overnight on his belly in his bed with some oxygen. If you’re not following James on Facebook yet, please consider doing so. We will post updates on his condition over there a lot sooner than here. And please say a few prayers for James tonight.
