I just have to continue with the number titled posts. Yesterday’s trip to KC went just fine. We went ahead and made it a day trip, choosing to save the money that we would have spent on a hotel.
500 miles, 10 hours away from home, 8 hours in the truck and 1 doctor appointment later… we were very glad to be home. Alex did awesome. I was actually surprised at how well she tolerated the trip. She is tired today, but not painfully so.
Answer me this… how can a little girl who gets at least 50 ounces of fluid a day hold her bladder longer than I can? Beats me. Regardless of the reason, that child held her bladder all day long. FYI, she thought it was hilarious that I had to make a dash to the potty when we finally got home.
As for the neurology appointment, it went just fine. We took Alex’s computer so she could talk and/or answer any questions and she really chatted up Dr. LePichon. In fact, before we were even called out of the waiting room, he came out to sit with us and visit. Alex asked him how he was, what he did this weekend, if he had a good weekend and more. He answered all of her questions and as soon as he answered one she would ask another. When he asked her how she was, she said, “I feel happy.” I must admit, I was proud of her for being so conversational. That therapy time is working, Ms Heidi! She just loves nurse Jamie and the last thing she told Dr. LePichon was “I love you.” I’m pretty sure she had her arms out because she wanted to hug him, but he didn’t realize that. I could have said something, but figured that perhaps we shouldn’t let Alex put the neurologist in a head lock!
Medically, the appointment was fine. She has gained 1.5 pounds in the last year, putting her at 41.5 pounds. I will take any increase, as it is way better than a decrease. Her medications are all being left the same and I did ask about what our approach will be if the current medications can’t keep up with the next decline. His response is just one more reason that I trust and respect him so much. He has always been completely respectful of the fact that Drew and I have chosen no surgical treatments. Deep Brain Stimulation has been an option for quite some time, but we have never had to apologize for being unwilling to put our child through multiple awake brain surgeries to place electrodes in her brain and a battery pack under her skin. She has taken oral Baclofen for several years and some believe that a Baclofen pump that delivers medication directly into the spinal cord can be effective. Again, that is a surgery that would put her body under the stress of anesthesia, surgery, recovery and require frequent trips to find/maintain the proper dosage. Dr. LePichon knows this and has never pressured us into anything. He stays in touch with other specialists and experts to take the best care of Alex (as he also did with Emma). He assured me that, while any other child would never be prescribed the amount of medications that Alex is currently on, we have plenty of room to go up. The main reason it was important to see him yesterday was because it is not cold or flu season and he needs to see her periodically so that we can maintain her care over the phone as needed. We will go back in late September, before cold/flu season returns, for another visit.
One more thing. I told him how helpful the patch has been for her drooling and breathing, but that we are having problems keeping it on. Guess what? Simple solution. It doesn’t have to be behind the ear to be effective, it just needs to be on a hairless area of skin. He said to put it on her back, between her shoulder blades where she can’t reach it. I did that this morning and she cried like I ripped her heart out. On one hand her response makes me giggle, but I really can understand it a little bit. Putting that on her body takes one more bit of control away from her. I’m trying to be respectful of that, but also have to make sure we are doing what we can to keep her healthy. She forgot about it quickly and I know she hasn’t picked it off because she can’t reach it.
Now that the KC trip is over I am feeling an urgency that I’ve felt a few times in the past few years… the urgency to do something fun. Alex tolerated the trip so well that I feel like we need to capture this exact moment to go somewhere and do something special. Her health, pain, discomfort and tolerance can change so quickly and that is why it feels urgent to do something NOW. Just a month ago we turned down a weekend in Branson with friends because we knew Alex couldn’t handle it. The small windows of opportunity in advanced PKAN can leave this momma feeling frazzled and hurried to enjoy what we can, when we can.
Even if we had a small fortune to hop on a plane, I don’t know that Alex could fly. Perhaps a car seat would make it a bit easier, but I don’t know. Yesterday’s trip gave me the feeling that perhaps she could handle a reasonable road trip. Pushing the limits of ‘reasonable’ puts the beach in mind, but that’s probably a 12 or 13 hour drive, just to get to Gulf Shores or Ft. Walton Beach. That’s a lot. It might be doable, but I don’t know. It is probably an idea that we would entertain if there was a vacation fund laying around. Sure, hotels can be pricey, but gas is expensive, too! Just a day trip to Kansas City took a hundred dollars in gas. Hmm… maybe something closer? I don’t know.
I’m trying to calm the urgency and be rational. We have the pool set up in the back yard and that will be fun when it warms up enough for Alex. It’s fun, but it’s not really an escape. The biggest lure of a vacation is taking my family, escaping the norms of our daily life and just being us. The beauty of the beach is that you really just have to get there. Once you are there you can just enjoy. I can do without roller coasters, big attractions and all the fuss. A blanket laying in the sand beneath an umbrella sounds lovely. You are probably wanting to remind me that Drew & I had a trip just 2 months ago. Yes, that’s true and it was wonderful. What I’m talking about here is a family escape. The three of us. JUST the three of us… living it up and not thinking about therapy, doctors, work, etc. for even just a few days.
We’ll figure it out. Branson is only a few hours away, so maybe that is an option. Maybe I’ll think of something else that we could do. Maybe, maybe, maybe.
As for today, it’s a do nothing sort of Saturday. Drew is piddling and Alex and I are hanging out in the floor. It’s quiet and I just have to appreciate the calm & quiet moments while we have them.