Well here we are. The end of 2018. The years just really seem to fly by, don’t they? If anyone has figured out how to slow down time, please let me know.
Before I get started with this last post of the year, I wanted to take a moment to say thank you. Thanks for following our story. Thanks for your love and support. Thanks for everything you have done for us—big or small—over the past year. As you know it hasn’t been an easy journey, and many times we don’t know what lies around the next bend, but knowing that there are so many people out there that care makes it a little bit easier.
Christmas
Okay, so let’s start with Christmas since this will probably be the bulk of this post. We had a lot of Christmas events this year, starting with Breakfast with Santa at James’ school on Saturday, December 1st.
The following day we took James to see Caring Santa for special needs children at the mall.
A week later the organization that we use for James’ palliative care had their holiday party.
In the first nine days of the month, James saw three different Santas. I wonder if kids ever question that. Like, “wait, I just saw you last week. You look different.” We don’t think James has the mental capacity to question it, but we always tell him that the Caring Santa is the real Santa. All the others are just his helpers.
Then there was a bit of a lull before Christmas arrived.
I don’t know why, but we didn’t take any Christmas pictures this year. We didn’t do many gifts this year, because there are only so many clothes or DVDs one kid needs. As long as we have each other, remain healthy, and can pay our bills, that’s all we really need.
Don’t worry, though. James did have a few presents to open. We also collected a few gifts to drop off at the hospital like we normally do. A few weeks prior to Christmas, there was a surprise donation to the kids at the hospital James normally goes to. After watching the video, it re-emphasizes why we do it. Just look at the smiles on the kids’ faces.
Santa and the Grinch surprise hospitalized kids with presents
One more thing before I finish up this Christmas section. Stacy ordered us a new ornament for our tree:
School
Just a few things to report on the school front. If you have been following James on Facebook for a while, you may recall that there used to be lots of videos of James working hard at school several years ago. After some personal issues between James’ one-on-one nurse and his teacher, we were asked to no longer take videos at school. After four years, a few one-on-one nurses, and a new teacher, the district has allowed us to take videos at school again. Here he is working with the physical therapist:
We’re so proud of him. We’re also very happy that he seems to want to roll again. We blame a lot of that on the seizures. He was never a normal kid and struggled to do something as simple as lifting his head. But once he got it, he got it. Then the seizures took over and robbed him of that seemingly simple thing.
I was reminded earlier this month of how awful things were when James was a baby—just a few months old—and he started having these weird “quirks”. That’s what we called them because we had no idea what they were. After visits to several doctors over the course of several months, and some of them saying that it was “just reflux”, we got a diagnosis: infantile spasms, which is a form of epilepsy. We’re always going to wonder if James was diagnosed earlier, and started treatments earlier, if he would have lost so much of his physical function. We know he would never be even remotely close to normal, but having one of the few things he could physically do by himself taken away is heartbreaking.
Child Neurology Foundation posted the video below on their Facebook page on December 2nd. This is what reminded me of how awful things were. Please take a couple of minutes and watch it. If you know of any children that may possibly be showing signs of infantile spasms, please get them help as soon as possible. I think one of the things that helped with the diagnosis were a couple of videos we took of James doing those “quirks” to show to the doctors.
https://www.facebook.com/CNFoundation/videos/309881236288154/
I went off on a little tangent there, but I thought that was important to share. Back to school. Actually, there’s not much else to report other than he had two consecutive three day weekends. For the first one, he was off on a Monday because his one-on-one nurse had a minor health issue that she was dealing with. Then that Friday he must of woke up and said “hey, I’m going to see if I can get another three day weekend.” These were his numbers when he woke up:
Sats in the high 80s or low 90s with a heart rate above 150 is usually a sign that he’s sick. Okay, so keep him home from school to keep an eye on him, call palliative care to request a nurse stop by if he doesn’t improve, and a possible trip to the ER for a chest x-ray. That’s the usual drill. Well, by 9:30 am his sats were in the mid-90s and his heart rate was down to 115. At 2:30 pm, he was still satting in the mid-90s and his heart rate was in the mid-80s. Nicely played James. Nicely played.
Sleep When Your Baby Sleeps
You know the old saying, “sleep when your baby sleeps”? For some special needs parents, their child never stops being a baby mentally. For other special needs parents, their “baby” has medical issues that require around the clock care. I think James falls into both of these categories, but it’s the around the clock care that throws that “sleep when your baby sleeps” out the window. His pulse ox alarm has been going off in the middle of the night so much lately that Stacy decided to take a picture of the clock every time his alarm went off for one week.
5:15 am is when her alarm goes off in the morning to start the day. During that one week period, James only managed to make it through the night without a drop in his sats twice. The other five days his pulse ox alarm went off due to low sats any time between 2:13 am and 3:42 am. Sleep when your baby sleeps doesn’t work in this house.
A Note to Delivery Drivers
And finally, a Public Service Announcement to delivery drivers. If you are making a large delivery to a house with a ramp to the front door, please don’t put the boxes in front of the ramp. We had a delivery of medical supplies a couple of weeks ago and the driver stacked the boxes right at the end of the ramp in such a way that Stacy couldn’t fully open the door to get James up the ramp and into the house. To the driver that delivered the Target box, we’ll give you a pass this time. You were probably just following the previous driver’s lead and just placed the box on the stack.
Thank You
Thanks again for everything you have done for us this past year…no matter how big or how small. We wish all of you a happy and healthy new year.
