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These last few months seem to have been all about equipment, which means Jin has been overloaded with research and phone calls to vendors. He ordered a manual wheelchair in late June as a backup to the power chair and for travel. We’ve been warned that power chairs should not be taken on a plane, since airlines tend to mishandle them. The new chair is a lot more comfortable than the transport chair we’d borrowed from MDA, and I continued to use it even after the power chair was delivered in early July. I think I fought the transition because the power chair sits so high off the ground. The extra height makes me feel further removed from Luke and makes it harder to work at the computer in the office. They had warned me that the lift function would make the chair higher, but I am glad we included that functionality. It enables me to be near eye-level when people are standing and talking, which is wonderful.
At this point, I spend the majority of my day in the power chair except for a few hours in the afternoon when I rest in bed and work on my laptop while Luke is napping. Since my neck cramps after a few minutes at the office computer, I now almost exclusively use my laptop while propped up in bed. The setup is pretty comfortable! I definitely think the over-the-bed table Jin fought to buy has been a very good investment. Since I’m getting to the point where I should start using my laptop to communicate, through, we’re going to order a laptop mount for my power chair. We’ll see how that addition changes my routine. I’m also trying out a new system called SmartNav to control the cursor on the computer with head movement. There are still a few issues to work through, but I’m using it to type right now. If I could just get dwell clicking to work, I’d be thrilled with the system! I can still use a traditional mouse, but it is getting more difficult so I thought I’d be a little proactive.
Once we had the power chair, Jin ramped up his search for a van. It was a very frustrating process. One company told outright lies about available features to try and sell existing inventory. Jin narrowed it down to two companies he trusted: R&R Mobility (http://www.rrvan.com/) and A+ Mobility (http://www.apmedical.com). A woman from R&R drove a wheelchair accessible minivan to our house in mid July so we could try it out. We decided to get that type of van, but since they weren’t able to get a van with the features we wanted in a reasonable timeframe, we purchased the Toyota Sienna from A+. The only downside was that A+ is located in Augusta and we had to take my power chair along when we picked it up so they could install the hardware to secure the wheelchair base to the van floor. We drove down on a Friday morning in early August, waking up at 4:00 to be in Augusta when A+ Mobility opened at 8:00. Mikey was nice enough to drive us down with the power chair loaded in the back of his Sequoia, and we were actually a little early. When they opened, we were told the part they needed to install in the van to secure the chair had not arrived but should be there soon. By 11:00, the part still hadn’t been located. Jin was aggravated, but he has unfortunately come to expect that dealing with something for me will always be a huge hassle. The van wasn’t ready until after 1:30 and, even then, we had to leave my chair behind. They installed the latch in the van successfully, but the hook that needed to be attached to the bottom of the chair wasn’t installed, since they didn’t order the right part. We drove the van home hoping they would install the hook onto my chair correctly and deliver it to our home in working order. Thankfully, my chair was safely delivered that following Monday and secured in the van perfectly.
Having the van has been wonderful. It is a little strange sitting up so high, but I’ve gotten used to it. Also since the middle seat was removed to allow the wheelchair to roll in and out, there’s a lot of room between the front seat and Luke. I worried he wouldn’t like being so far away and that the distance would make caring for him in the car difficult, but the exact opposite is true. Luke loves running around in all the open space, using the ramp, and pushing the button to shut the door. And all that space means Abbie can stand in front of Luke to buckle him in then slide into the driver’s seat without leaving the van. It also makes changing a diaper less challenging, or so I’ve been told. I think we’re all very happy with how well it has worked out. Having the van makes getting out of the house and running errands so much easier. Abbie never complained and was always willing to push or pull me along in the manual chair, but I didn’t like making every single trip so difficult. Now I can even be a little helpful; the handles on the back of my power chair are great for carrying bags! And it is wonderful being able to power myself around the store. Luke was a little confused at first when we wouldn’t let him hold on to the chair while walking around a store, since he had become accustomed to that rule, but it wouldn’t be safe with the power chair. I would like to avoid running over my son, especially with a chair that weighs over 300 pounds.
One concern I’d had about a ramp van was whether parking would become a little tricky; there seem to be a limited number of van accessible handicap parking spaces and sometimes the room allotted for the ramp is a bit small. One day when we got back to the van, we saw that the car parked next to our ramp door was parked way to close for me to even attempt to get in. Since I was expecting that to happen sooner or later, I wasn’t terribly surprised or really even angry. I’m sure I used to encroach on handicap parking without thinking about whether I would be in the way. Abbie loaded Luke into his seat while I rolled towards the back of the parking lot to find enough space to load. I felt a little silly sitting in my chair surrounded by empty parking spaces waiting for Abbie to drive the van over, but the process wasn’t too much of a hassle. At least now I know there’s a simple solution.
The only drawback of the van was the price; a handicap accessible minivan is over double the cost of a standard model. Andy Petzinger generously offered to coordinate a fundraiser in mid October to help offset some of the cost, and it was an amazing success. We have such incredible friends! I was fighting tears when I saw how many of you had come to support us. I wish I could have talked more to everyone, but I’m hard enough to understand in a quiet room. I have almost no chance in a crowd. It’s hard for me because I have questions I want to ask and comments to make, but I know that an attempt will lead to frustration in a loud environment. Please know that I want to talk to you! In fact, I would love it if you’d volunteer answers to the standard questions: how’ve you been, what have you been up to, how ’s the family, etc. That would be fantastic! I had fun watching the donut eating contest, though. And Luke had quite an introduction to Krispy Kreme. Andy was able to raise over $8,000 with the fundraiser! Thanks so much for the donations and to everyone who participated in this entertaining event.
At the end of August, we all went to Hawaii for a week. Luke was amazingly good on the flight down especially considering that we woke him up at 6am and he only slept an hour on the 9-hour flight. For the most part, Luke was perfectly content playing with the two new cars Jin had given him when we boarded the plane. The flight wasn’t nearly as difficult as I had thought it would be. I had to move carefully to my seat and using the bathroom was tricky with Jin and I crammed into that tight space, but I expected worse. I just wish I’d been able to sleep more! I held Luke on my lap as we were landing so heard him whispering ‘whoa’ as he watched the scenery zip by. I think everyone in our section heard him shout it when the wheels touched down! Luke was thrilled when we took a shuttle bus to pick up the rental car. Once we had picked it up and were on our way to the hotel, Luke kept saying ‘I wanna ride school bus’ every time he saw a bus. That continued for the rest of the week.
We had a great trip. We went to a beautiful wedding, were able to visit with friends and family, and simply relaxed. Jin and Abbie even went surfing! Michele took an unbelievable amount of pictures, which gave Luke plenty of opportunities to practice his new smile-for-the-camera phrase: ‘cheese, crackers, and turkeeeey’. He decided his favorite lunch sounded better than the standard and it has stuck. I definitely missed my power chair, though, and desperately wanted my shower. There were a few dicey moments when I was sure we were going down. I also got pretty tired toward the middle of the trip, since I wasn’t able to use my BiPAP. We had an entire carry-on dedicated to this piece of equipment, and I wasn’t able to use it because we had forgotten to pack the power cord! Jin was slightly irritated. Overall, though, it was a wonderful experience.
As for me, there have been a few changes. For one, I stopped seeing my chiropractor in late June. I’m sure the stretching was beneficial, but since I now spend the majority of my day rolling rather than walking, I didn’t think it made a noticeable difference in how I felt. Plus, it had become more difficult to get to the appointment and I wanted to reclaim my mornings. Having appointments three out of five mornings made planning anything else pretty challenging. I also now only see my massage therapist once a week, so we have a lot more free time.
Jin and I went to the ALS clinic on October 10 and got some good news: I’ve put on an impressive amount of weight! Unfortunately, I’m fairly certain it has all gone to my belly. Oh well. My respiratory numbers dropped a little to 53%, but since I had feared it would be worse, I was actually relieved by the results.
Now for the rundown on my current status:
- Continuing to use the BiPAP consistently at night.
- Using the cough assist at least once a day even though I’d prefer to throw it out the window.
- Taking Rilutek, Quinine, Lithium, and Arimoclomol prescriptions.
- Muscles in lower legs and feet spasm more frequently.
- Legs shake more frequently when they bear weight and are more difficult to control.
- Hips collapse more often when they first bear weight.
- Can walk unassisted for short distances if very careful.
- No longer attempt stairs.
- Talking is noticeably more difficult.
- Mouth fatigues quickly when eating.
- Meal sizes are very small; supplement with Ensure quite a bit using the feeding tube.
- More difficult, and sometimes impossible, to sit up without assistance.
- Arms, hands, and legs sensitive to pressure.
- Moving and lifting arms takes considerable more work.
- Shoulders very tight with poor range of motion. Cause considerable pain if over-extended.
- Neck muscles have more trouble holding head up when leaning forward or back.
- Lower back aches from constant sitting.
I know that all sounds a little dire, but we have a pretty good system in place. Abbie has been fantastic and my only worry is that we’ll ask her to take on too much. I hope she isn’t regreting her decision to move in! As for Luke, he’s definitely asserting his independence! A few of his favorite phrases are ‘let me do it’ and ‘don’t help me’. He is talking so well! You would probably have better luck understanding Luke than his momma! He’s also beginning to help me with doors, will give me bites of food if he doesn’t see someone else helping, and will try to put my shoes on. It’s adorable how he’ll answer ‘ok, sure, sure, I’ll do that!’ when we ask him to do something like let the dogs in. Luke’s such a good helper and an incredibly caring two year old. He’s also all boy: daredevil, explorer, and pro wrestler wrapped in a hard-to-resist package.
Here’s a very short list of what Luke has been up to:
- Answers ‘daddy go shopping’ when asked what daddy does at work.
- Complains about being ‘itchy’ when lying in my lap and resting against my unshaven leg then states ‘daddy fix it’.
- Cries ‘I want medicine’ when his raw bum is being cleaned off.
- Says ‘delicious’ when eating something he likes.
- Has become very curious about sounds and will say ‘I hear something!’ or ask ‘What’s that noise?’
- Says ‘I need tissue’ when his hands or face are dirty.
- Will play with cars for hours and recreates scenes from the Cars movie complete with dialog.
- Likes to help read along with books he has partially memorized.
- Repeats everything we say and, unfortunately, everything daddy says as well.
It’s incredible to watch Luke become a little boy and so much fun to know what he’s thinking about. Even though it’s impossible to keep myself from wishing I could take a more active role, I do love the show. Well, I think that covers most of it! We’re looking forward to seeing everyone at the walk tomorrow. It should be a little chilly but not too terrible, and I know all the other teams will have t-shirt envy. As always, you guys have shown amazing support! Thank you!