If you have followed our blog for any length of time, you are aware that our middle son, A, has some challenges. The problem is, we don’t yet know what the problem is or how to deal with it. As a result of the medical journey we’ve been on, A is undergoing a serial casting process for physical therapy, to re-stretch his leg muscles and tendons that had contracted for some unknown reason. He has now stretched from -3* to 17*, with the ultimate goal of 20*. We are almost there. At that point, (probably about a month from now) he will most likely be put in AFO’s (leg braces) to keep him stretched until we find a cause, or until he can maintain the stretch on his own.
In addition, this past week, A and I found ourselves admitted into the hospital for a greatly anticipated, long-awaited test. We were scheduled for a 3 day/2 night video EEG test, to find the severity of what was believed to be seizures discovered during a short-term EEG test about 2 months ago. We got to Denver Children’s hospital around 10:30 in the morning, and were eventually seen by an EEG tech who got A all wired up.
First, the tech had to measure and mark the appropriate locations for the sensors. A was content to lay there and watch a movie.
Next, she applied the sensors with a terribly smelly glue. There were around 24 sensors on his head, and 2 on his chest to monitor heart rate.
To prevent him messsing with them, she then covered the sensors in cotton and a gauze head-wrap. The wires were zipped into a sheath of fabric, and the box that the wires connected to was placed into a kid-sized backpack. This allowed A to move around the room. Of course, it wasn’t really that simple. A was also on video camera for the duration to see if he did anything that could be physically seen while having a seizure. This meant that, although he was free to get up and move, I had to try to keep him in a specific location for as long as possible so the camera could see him. And the docs wanted him to watch as little TV as possible, so his day would be as normal as possible–except of course that he had a head covered in sensors and his day was confined to a 10×10 foot space. Normal? Right!
Thus, we did our best to improvise and settled in for the long stay. A was entertained by the occasional cartoon:
Then he got to move over to the chair or sit on the floor where he could play with his Alfie robot or color:
Or he could move to the couch and look out the window. Then, before the energy exploded out of his little body, he was given a boundary within which he could push the rolling tray table around–back and forth, back and forth, while mom placed bets on whether the dragging power cord trailing from his backpack, or my sanity, would snap first!
Of course, it wasn’t REALLY that simple. Remember the fact that we do have 4 other young children? S had to take off work for 2 days to take care of them during this hospital stay. Well, as it happened, the night before we were scheduled to start, R wasn’t feeling well. She was awake and crying the entire night. I wound up taking her downstairs to the basement and “sleeping” with her on the futon so S could get some sleep and drive to Denver the next day. I figured she must be teething, as she was very out of character for herself. We were so tired from the long night, S and I both slept in, then, when we couldn’t sleep in any longer, we jumped out of bed, threw the kids together, did the farm chores, bundled the kiddos into the van, and headed to Denver. Meanwhile, R was continuing to be cranky. About 45 minutes into the drive, R angrily grabbed her socked foot, ripped her sock off and started crying. Again. I turned around and caught a glimpse of her bare foot….covered in ugly red and white blisters! OH NO!!!! I reached back and began frantically checking her body, not sure how we missed it when we dressed her that morning. Her head, torso, arms, and legs were actually not too bad, having a few “bug bite” type bumps on them. Her hands and feet, however, were covered in white-headed pimples, angry looking blisters, and just plain looked painful! No wonder she was crying all night!! (Though I don’t think they had developed the night before, I think their development is what made her so miserable.) So, while S continued to drive, I called the nurse hotline to find out what to do. After dropping us at the hospital (where I told the nurse, but we all knew we would be isolated in our room anyway), S took R in to the base clinic, where she was diagnosed with “Hand, Foot, and Mouth Disease.” At least it wasn’t chicken pox, which is what I had feared. As it turned out, A had gotten it several weeks ago, but it presented as a couple of unexplainable “bug bites” (we really don’t have any biting bugs in our area–especially this time of year) and disappeared within about 3 days. Then, N and M likely got it, and complained only of a sore throat and mild fevers for about 24 hours. JR never complained of anything, then apparently R got it last. This photo is not R, but one I found online that looked like her hands and feet….
So, as it turned out, I’m not sure who got the best end of those days–me stuck in the hospital room with A, or S stuck at home with a miserable, quarantined toddler. The good news for R is that, like the others, she seems to have had a VERY mild case of it. After what the pediatrician had prepared S for (which includes blisters throughout the intestinal tract and everywhere in the mouth as well), S took her home, gave her a thoroughly fermented kefir smoothie and some vitamin C, which seems to have prevented any intestinal problems. Within 24 hours of the appearance of the blisters, they stopped developing, and now seem to be healing. She never stopped eating or got bad diarrhea, and only missed sleep that one night. The doc prescribed ibuprofen and tylenol on an as-needed basis, but S never even had to give it to her. She is still a bit fussier than usual, and I suspect the blisters on her feet are a bit painful, but overall she seems to be on the mend. We praise God for both the health of our children and the ability we have to feed them nutritiously in a way that encourages their healing.
A on the other hand, was released from the hospital after only 24 hours. The GREAT news is, they found no seizure activity. The not so great news is that, since they found no seizure activity, we are still at square one of having no clue what is wrong with our child, only we have ruled out yet another possibility. Next on the agenda is a follow-up appointment with the neurologist almost 2 months from now, a possible opthamology appointment to check on an eye problem he has begun complaining of, continued physical therapy, and the start of occupational therapy. They are also considering sending us to a metabolic geneticist to look at some metabolic factors more in depth. For now though, we’re starting to lean back on the in-utero drug theory–which still doesn’t explain the neurological regression of his body that has been happening. At this point, only God knows what’s going on still, so we can only pray for wisdom in raising this child and trying to maintain the peace in our home with his continual antics.
There is certainly never a dull moment in parenting this household!!