This is one of those days that the term “roller coaster” really applies to.
Hannah got in a good nap early this morning after waking up at 3 am “just because.” She had gone back to sleep at 5 am finally until 8 am. She then got another nap starting at around 11 am and woke up just in time for her therapy session with her Early Intervention coordinator.
They had their best session ever, and it was so exciting seeing Hannah really get into her therapy for the first time in MONTHS! They worked on taking animals in and out of the “barn” (felt barn box), and Hannah really made a strong effort to do it.
You can see how the neuromuscular part of this disease along with the chorea movements really has messed her up. She knows in her brain when she needs to do but she just can’t seem to get her body, especially her arms and hands, to do it. It is heartbreaking sometimes watching her because you can just see how hard she tries to do something yet her body won’t let her, especially grabbing at toys.
But that was a great morning with a great therapy session. Couldn’t ask for anything better!
We had the PTA meeting at the kids’ school tonight. I was able to introduce them all to Hannah, share our story, and explain why this World Rare Disease Day is so dang important to our family (and to all kids with rare diseases). They seemed for attentive as I shared the information, and the feedback I received back from them was that there was definitely a positive energy to do our “Jeans for Genes” day (all kids and teachers wear jeans) in recognition of WRRDay. The only drawback we found out was that the school is actually closed on 2/28, but we would recognize it the Friday before.
Along with everyone wearing jeans, I shared the 7000 bracelet project with the Global Genes Project. How amazing would it be to have the entire school create bracelets for this initiative? 850+ kids, all creating one special bracelet, in honor of another child suffering from a rare disease that most likely has very little research, very little awareness, and possibly not even a foundation attached to it?
It has to be approved from the principal, and I am keeping my fingers crossed she says it is okay. Also, I have two wonderful people who are very well connected with the local media who will do their best to get our local (and possibly national) news to cover this story. Positive thoughts she says yes!
As for Hannah, she did what she does best. Cling to mommy, laugh, smile, and just be adorable.
It wasn’t even an hour after we returned home from the PTA meeting that Hannah spiked a fever of 101.8. Out of nowhere. Her nurse always monitors her temperature every couple of hours, especially with Ethan and Abigail being sick, and it never went over 99.1 today (that was just one time).
Out came the Motrin and the cool washcloths. She also started acting very cranky, tired (even after two great naps), and just not herself. She acted exhausted all night long, yet she did not actually fall asleep until just now at 1:00 am.
What really made us nervous and on edge was the fact she was just so uncomfortable and making those similar types of twitching movements she used to make in her sleep (which we later found out were seizures). But thankfully, once she really started getting tired, those movements completely stopped. Since she, at this time, really only has seizures while she is asleep, then she was just really not feeling good.
So, even though we kept the kids away from her completely for the past day and a half, Hannah may have still caught whatever Ethan and Abby have. Abby seems much better now, but I am bringing Ethan to the pediatrician tomorrow because he has been dealing with fevers and a rough cough for almost 3 days now.
Hannah is finally comfortable and asleep. I hate the fact she has a fever now, especially since she is already on the Cipro for the trachiitis. Whatever bug is going around should have been nipped in the bud with the Cipro, as it is a powerful antibiotic.
Hopefully she will sleep for more than a few hours tonight and get a good night sleep. Even more so, I hope that the fever was just a fluke of some sort and that it disappears tomorrow.