Wow, I think I have a new record for the time between updates! Probably because Jin set up Kim Kim Fight on facebook to keep everyone in the loop and I’ve sent updates on major happenings like my trache procedure. Still, this is definitely overdue and it occurred to me that not everyone has a facebook account. So. . .
I’ve actually been doing pretty well. I still have bouts with staph infections, but the doctors seem to agree that I’ll never be completely rid of it, so we’ll just continue to treat it with antibiotics when it flares up. I’ve gotten fairly comfortable with the trache, and we have settled into a routine for my care. It’s about time, since September 16th marked one year with the trache.
As a random aside about something I will probably never grow accustomed to, I miss water. I miss the feel of drinking ice cold, refreshing water. My mouth is always so hot, and I frequently have a lingering bad taste. I fantasize about guzzling a huge glass. It’s such a simple thing. I sometimes miss food when I see something I used to enjoy, but that’s easy to dismiss. But water? Cold, clean water? I really miss water.
As for progression, I can still bear weight for transfers, which is wonderful, but it’s definitely getting more difficult. I noticed recently that my calves and shin muscles are almost entirely gone, and that my shinbones are starting to look razor sharp as a result of the atrophy. I’m worried I won’t be able to bear weight much longer. It has definitely become much harder to reach the alarm with my foot if it’s not close enough, and my ankles turn inward when I’m standing almost every time. We are learning how to use the hoist to prepare for when it’s needed, and Abbie has started to use it to get me into my power chair for outings, but we will avoid the hoist for trips to the bathroom for as long as possible. Also, my shoulders and upper arms are twitching and contracting like crazy. And my core and neck muscles are significantly weaker.
But I am still able to do everything I could a year ago, which is actually pretty amazing. I’m still using SmartNav to navigate my computer and have complete use of all the programs. I’m still breathing on my own during the day only using the vent at night in place of the bipap, and I am so grateful to be rid of that mask! I can still get out and about with the help of my power chair, van, and the travel suction kit. The only major change took me entirely by surprise. I have always had perfect vision, but constantly looking at a computer screen has taken a toll and I have had to become accustomed to reading glasses. Ironic, since it was the one thing I wasn’t worried about losing! Wearing them was pretty aggravating at first since I couldn’t push them back up when they slid down my nose, but I had the idea to use a strip of duoderm on the bridge of my nose and it has solved that problem beautifully. It’s nice to be able to use my Georgia Tech problem-solving abilities.
I’ve actually begun to get out of the house quite frequently in the last few weeks for Luke’s after-school activities and church. We have started to attend Alpharetta Methodist on Sunday. I want us to be a part of a smaller, more traditional church and have always favored the Methodist doctrine. The main service is at 11:00 with Children’s Church being held at the same time. It’s extremely easy to navigate my power chair around and we found a good spot in the sanctuary to park where I have a clear view but don’t have anyone behind me. It’s absolutely perfect. There’s also a children’s choir that Luke practices with every Wednesday. He really seems to enjoy it, and the directors say he’s doing great. Goodness knows the boy likes to sing! Luke has also started to take piano lessons with a woman who comes to our house on Thursdays and says choir and piano compliment each other very well. She’s doing a good job of making it fun, so I’m hopeful Luke will stay interested.
During the first service, I figured out why I wanted to go to a more traditional church. It’s sweetly nostalgic for me. I remember walking up the aisle as an acolyte with Kathy nervous something would go wrong. I remember an older church where Kathy and I actually got to climb up a ladder into the steeple to ring the church bells. I remember practicing with the children’s choir and being an angel in a Christmas pageant where I had a one-line speaking part that was apparently funny to the adults, but I never understood the humor. It makes me happy to think Luke might make similar memories to mine. It makes me feel more connected to his future.
As Luke’s last new current venture, he has also started to go to Tae Kwon Do twice a week. It’s the one thing he actually asked to do, and he loves it so far. During his first class, Master Chung had the boys sitting on their knees at attention then standing when called and answering questions with “Sir!” tagged on the end and bowing. Luke did well but tended to run his words together rather than speaking with a military-like cadence. The class also practiced different stances while shouting in Korean and did some punches and kicks with and without a target. Since they also did push-ups, jumping jacks, races, and crab walks, Luke was pretty sweaty at the end. He seemed to have a really good time, and I had fun watching him in his cute uniform. Luke would look over at us every so often during the class with a happy smile and a proud expression that made me smile back every time. It’s definitely my favorite activity to watch.
School has gone pretty well so far, but Luke frequently gets in trouble for talking too much. At least confidence doesn’t seem to be an issue! Luke is doing great academically, though. He knows almost all his sight words for the year and seems on the cusp of reading. Simple math is also coming pretty easily. I know I’m biased, but I think Luke is incredibly smart! He’s been going for over a month now and loves riding the bus. Even on Luke’s first day, he walked right on without once looking back. It was a big milestone for us both, since according to the doctors, I wasn’t supposed to still be around to see Luke off on his first day of Kindergarten. What do they know?
Luke’s teacher is Mrs. Weiermiller, and she has been fantastic! Parents we know whose kids have been in her class absolutely rave about her, and I can see why. Summit Hill is also pretty amazing. During his first week, Luke came in to see me after school with a cute little husky stuffed animal. I didn’t recognize it, but he has so many, I assumed I’d just forgotten it. But during curriculum night at the school later that week, the principle told us she had given all the kindergarteners huskies after explaining why it was the school mascot. What a great tradition! Luke obviously loves his. Our neighbors were also great about agreeing to change the bus stop to the end of our driveway. The change made things much easier since Abbie can wait inside for the bus to drop Luke off in the afternoon if necessary, so I won’t be unattended for too long. Our community really is pretty fabulous.
I was especially appreciative of our support system over the summer. My biggest worry is that Luke will miss out on things because of my limitations. There’s nothing that would cripple my positive outlook faster than feeling that I was responsible for making Luke’s life less in any way. Thankfully, we have wonderful friends and family who are willing to help make sure that doesn’t happen. This past Summer, Luke was able to go to two weeks of VBS and a week of day camp because friends picked him up to take with their own children. He went to Florida with Abbie and then again to the beach with Michele and Ryan. Luke had a wonderful Summer break even though I was pretty miserable fighting infections. It may have seemed a little thing to those who helped, but it was incredibly important to me. So, thank you!
We recently decided we needed a second level of help during the week to allow Abbie to run errands and to guarantee that Luke would be able to go to his after-school activities regardless of whether I was well enough to join him. At Sarah’s suggestion, our respiratory therapist at Shepherd’s, I posted an advertising for an ALS caregiver on care.com. I found some potentially good people and had even set up a few interviews. But when Kari, our visiting nurse, came by, she told us she might have the perfect candidate. Kari works with another family whose son was diagnosed with MD when he was six. He’s now 30 and has a sister who is a single mom and has helped care for him all her life, which means she already knows most of what is necessary to care for me. I think she’s going to be a perfect fit for our family. She’s even a Star Wars nut and is a pretty amazing costumer. She’s been over to help a few times already, and I’m insanely excited to have another option for coverage when needed. I think it will lower everyone’s stress level significantly.
Luke can be so incredibly sweet. If he thinks I’m in distress, he’ll come sit beside me and pat my cheek or rub my arms and ask, “Are you better now?” And I really do feel better. The fact that I have such a loving, kindhearted little boy, reminds me why I’m determined to deal with all the ALS crap. He is my reason why I face each day with the best attitude possible. Getting to watch him grow up and try new things constantly reminds me why I’m committed to staying around for as long as I can and makes living with this damned disease more bearable.
All of you do the same. We are incredibly lucky to have such wonderful people willing to help and offering up prayers.