Good morning! I realize it may appear as though I am falling down on the job as far as updating this blog goes, but in reality we have been running almost non-stop this week with therapy sessions, filling prescriptions, school, JV away games, and, of course, church! I'm sure I don't need to play the busy-mom-with-five-kids-and-a-husband-who-expect-to-be-fed-frequently-despite-the-long-and-hectic-day-that-won't-end card in order to get sympathy. LOL! Truly I'm not complaining, just relating the facts. :-D
Dale was supposed to have PT on Tuesday, but the therapist called in sick. This gave us a tiny bit of a break in an otherwise busy schedule. Dale stayed at school until Bible class got out at 12:20, then had to wait for me to finish up some paperwork, and then we headed home. I've been helping other teachers in my spare time (!) by grading papers for them, and I wanted to be sure I didn't leave anything undone, so we left school later than I intended. I was thinking Dale and I could both get a short rest after lunch, but somehow this never happened. Wednesday followed the same pattern of school, grading papers, and a late lunch, followed by church at 7:00 p.m. Dale gets to bed at a good time each night, but I tend to stay up late doing "stuff", which makes for some very tired mornings.
Thursday morning, everybody had to get up extra early and get to school early because the JV teams were going to an away tournament. My second daughter, Katie, is on the JV team (her last year), so she had to be at school in time to get on the bus which was due to leave at 8:00 a.m. (In actuality, it didn't leave until 8:30 which had me grumbling to myself about the injustice of having to forgo some of my much-needed beauty sleep to wake up still-sleepy kids and drag them to school just to sit and watch the team bus pull out five minutes after school started anyway! But I'm not complaining, just relating facts.... :-P Just kidding!) That morning, Dale got to go to PT at 10:45. He didn't get to attend much school beforehand since he spends 1st hour in my classroom, working on various speech and math worksheets. He has certainly come a long way in these last few months. We have been finishing up some papers that SP gave us that have, frankly, taken forever.....mostly because he couldn't get his brain to work quickly enough or focus strongly enough to answer correctly. In this last week-and-a-half, Dale has done great with naming relationships between words, correctly answering which word goes with which phrase, and retelling stories. At PT, the therapist worked Dale pretty hard, showing him some core exercises to do to help strengthen his stomach muscles. She sent home the explanation sheets so that we can do these same exercises at home---kind of like having a mini-PT session each day, not just twice a week. (We did these exercises Friday afternoon; Dale whined a bit and struggled a lot, but he got through them. He realizes the need for these work-outs and is, for the most part, willing, just not always fully able.) By the time he left PT Thursday, Dale was sweating and flushed! These are good signs; he is making his body respond.
We stopped by the Group Health pharmacy on our way home to get those prescriptions filled. Somehow I parked too close to the curb, so Dale got some extra PT trying to negotiate the narrow space between the van and the curb. He actually stepped up on the curb (with help), balanced there for the brief seconds it took me to close and lock the van, then stepped down and (literally) put one foot in front of the other to get past the van to the street where he could walk normally. He didn't like this idea, but doing it was good for him; it proved to him that he could do it, and it used those still-weak ankle muscles. When we got inside, the pharmacy was not too busy; I was able to get to the counter within a few minutes. The clerk said, "I'm not sure we have the Diastat in stock, but I'll check on them both." When she returned, she was smiling. They had the Diastat but not the correct dosage of Trileptal. We were able to pick up the Diastat but had to wait until the next day to get the other. It's a good thing the clinic/pharmacy is on our way to and from each therapy! By the time we got home and had lunch, it was about 1:30. I have been remembering to bring a small snack to school with me for Dale, so he was not starving---but I was! There was just enough time to eat, put together Legos with Dale, and take a few deep breaths before I had to head back to school to get the girls. And the rat race continued.......
On Friday, Dale had SP at 11:00, so, again, he didn't get to attend his other classes (just 1st hour with me). Plus, with the JV teams gone along with several teachers/coaches, many of the classes were combined or sent to study hall, so Dale didn't miss much teaching time. At SP, Dale pleased his therapist by relating the same Grimm fairy tale that he had looked up and told to her on Monday as homework. He got about 3/4 of the way through without much help, then began to get the story muddled. She then gave him clues to help him finish the story. Some of the worksheets she gave us for Dale to work on require him to read several words and cross out the one that doesn't fit into the same category as the others. He used to struggle with this, needing much help and many reminders to stay on task. Now, he breezes through them with little problem. The SP therapist used similar lists to read to Dale and have him listen and tell which word did not fit. He did great, especially since these word lists were on a higher level of difficulty than the ones we have been using. (I had a hard time telling the difference with some of the groups of words; the compilers were being a bit picky with their definitions of "different.")
Dale, however, listened and performed well. He still needs to work on sitting still, listening the first time, and blocking distractions. Lisa said we will work on that on Wednesday.
Again on the way home, we stopped at the pharmacy, this time to pick up the anti-seizure medication. Dale has been unsteady with consistency until Friday when he seemed to calm somewhat. We are careful to help steady him when he asks but never give more assistance than is required. As Chad explained to me (for the umpteenth time---it takes me awhile to get it sometimes), giving Dale assistance when he is shaky is not enabling him to remain unsteady; it is giving him the assurance that we will always help him when he needs it, which will, in turn, help him gain the confidence and desire to try things on his own. As of today, it has been 1 1/2 weeks since his last seizure. We have not started any meds yet; we are trying to help Dale find ways to work through shaking and fear when falling first. If Dale has another seizure, we will probably begin the medication. Dale has actually experienced several falls this past week when his legs have buckled and he couldn't catch himself or when he catches his toe or heel on something. None of these falls have incurred injury, not counting the two times he fell out of his chair at home while trying to put on his pants. Each of those instances resulted in rug burns on his poor face! We have since changed his pants-putting-on technique. These falls have occurred at school, home, and therapy, and each time we waited a minute or two for Dale's limbs to steady before helping him to his feet. On Thursday, coming out of PT, Dale's foot got tripped up on the threshold of the doorway to the parking garage. I had hold of his hand and was able to kind of swing him down to the ground. (When he feels himself falling, Dale can't seem to stiffen his legs or put out his arms like we would to prevent or break the fall. He has said that he can't even hold onto the stair railing; his reaction is to let go and fall!) A very nice older man was right near us and waited with me while Dale got his breath. He heard me telling Dale that he was all right and just to breathe, that he wasn't falling now. The man leaned closer and quietly said, "Seizures?" I responded, "Yes, not now, but there is the fear of them." He helped me get Dale on is feet, then did the nicest thing. He patted Dale on the back a couple of times and said, "I have seizures too, all my life. You keep going; you'll be okay. You can do it." I felt my heart swell with gratitude to this stranger for his encouragement and to our God for His guiding hand. Dale looked at the man with some wonder; I think he was surprised to see someone with the dreaded "seizures" looking and acting so normal. The man walked down the other aisle to his vehicle and we proceeded slowly to ours. Dale's legs were a bit shaky from the PT session, and he was still unsteady from the near-fall, so our progress down the aisle took awhile. In fact, Dale and I began laughing because he would walk from one giant cement support column to the next, sometimes putting a steadying hand on a car as he would pass by it and pausing at each column to take a mini-rest. He complained in mock dismay when he realized there were no cars in between the last two columns before our van's parking slot! The same man who helped us at the door stopped by in his truck to ask if we needed help; I guess he had had time to walk down the aisle to his truck, get in, back out, and swing around to our side of the garage before we had even gotten to the van!!! I thanked him again but told him we would be fine---and we were. Please don't think that Dale was about to fall over the entire way. He just wanted to take things nice and sloooooow. Eventually we reached the van where Dale got in just fine. Remember when I would report that Dale was having difficulty climbing into the van? He has definitely outgrown that particular trouble. All that to say......we have yet to begin any medication but are prepared to should the need arise. (Fancy talk for "If we hafta, we will!)
I don't want to close this update for there is so much more that happens each day than I can hope to relate......so many little blessings, small discouragements, precious moments, and regular family events (code for so-and-so got in trouble for such-and-such). I have yet to tell about my conversation with Mr. Damian Mullinix, the photographer who took those amazing photos at the beach that day, but that will have to wait til the next time.
To those who have Monday off work/school, enjoy sleeping in (maybe) and catching up on odd household chores (what?). To those who have to work anyway I extend my deepest sympathies and will pray for you after I wake up......late! Sorry---couldn't resist teasing! Have a wonderful weekend; God bless you all; and go Saints, Broncos, and Giants/Packers (it's a toss-up)!!!
Malachi 3: 16 - 18 "Then they that feared the LORD spake often one to another: and the LORD hearkened, and heard it, and a book of remembrance was written before Him for them that feared the LORD, and that thought upon His name. And they shall be Mine, saith the LORD of hosts, in that day when I make up my jewels; and I will spare them, as a man spareth his own son that serveth him. Then shall ye return, and discern between the righteous and the wicked, between him that serveth God and him that serveth Him not."