Updates (April 22-28, Scans Week)

Ian has scans again on Thursday. This week’s major prayer request is for CLEAN SCANS!

I’ll do my best to update this page throughout the week…

Sunday (4/22)- Again, we stayed home and layed low. We enjoyed a big french toast brunch, and a lot of relaxing family time, just enjoying being together. We’ve become rather protective of our weekends together as our weeks have become so crazy full of appointments and just being gone what seems like all the time. We’ve missed out on some things lately, because everything seems to be scheduled on a weekend, but I’d rather miss out on things away from home than time together at home anyday.

Monday (4/23)- We started out today pretty ok. Everyone seemed to roll out of bed on the right side, which is always a blessing of a way to start the day, and all of the kids worked together to get some morning chores done and a good start to our homeschool day underway before it was time to get ready for a quick lunch and heading out the door for our afternoon of therapy appointments.

Ian got a new camera last Friday, and one of the things his Occupational Therapist is having him do is to research some accessories that would help him make the most of it. His assignment was to look up lens filters, tripods, and remote shutter releases, which I thought was a pretty brilliant assignment. I wouldn’t have thought of it right away, but for Ian, using a tripod and a remote shutter release would be so helpful, because with his ataxia, he is still able to work the buttons on the camera, but he shakes an awful lot, and if you know anything about photography, you know that shaking is no way to get a good picture.

Tuesday (4/24)- This was our only day with no appointments this week, so I guess it was good timing that I would wake with a horrible migraine headache and spend most of the day in bed. Ugh. I was really hoping to enjoy today, but, the bright side is that at least I didn’t have to cancel any appointments, right?

The weather has been lovely the past few days, and the children were able to spend a good chunk of time outside getting some fresh air while I rested, listening to them run, & laugh, & squeal outside my bedroom window (well, the younger kids, Ian, in typical teenager fashion, stayed inside and watched a movie ). I love those sounds, and I wish I was out there with them. Jaron and Liberty are excellent babysitters, and really do well playing with the younger children, but I’m really praying that I’m feeling good on our next day off!

Wednesday (4/25)- On the schedule: Speech, OT, PT, & chiropractic neurologist

Thursday (4/26)- On the schedule: Audiogram (to test for hearing damage from the Cisplatin), full brain & spine MRIs, LP, and follow-up appt with nurse practitioner to discuss next step of treatment plan…

Hearing test went great. The ringing in his ears has mostly subsided and he didn’t show any high-frequency hearing loss, so that was some good news to start our day with!

Then it was time for the 2 1/2 hrs of MRIs, and the waiting for results- which were CLEAR! Praise the Lord!!

Our meeting with the nurse practitioner went well. It was a little surprising that Ian’s ANC had dropped to 880 (on Day 25) after being 2,300 on Day 9 and already rebounding to 3,000 on Day 16, so we definitely need to get another blood draw in next week to make sure he rebounds (again?) enough to be ready for another round of chemo in another couple weeks.

Friday (4/27)- On the schedule: Speech, OT, & PT

Saturday (4/28)-