I started going to a physical therapist this week and starting next week I will go thrice weekly for the month of May. The most helpful part of my first session was having the therapist tell me I didn’t need to be scared of my hip and new hardware breaking so I could expand my range of attempted movements. He encouraged me to start going for walks and to practice short distances without a cane when I’m at home. I haven’t yet gone out for a walk just to go for a walk, but I have started going on more errands and parking farther away instead of trying to get the closest spot. When I’m in the kitchen I often leave my cane dormant, and it is so nice to be able to carry things in two hands. Whenever I start lurching around as I did before my hip surgery then I know it’s time to get the cane again. The good problem that I sometimes now have is forgetting where I left my cane if I have done a few things without it. One day I noticed I accidentally came down a couple of steps normally, as in bending my right knee. Then I realized I could do the whole flight of stairs that way, with each leg taking a normal turn, while holding support on each side with my hands. Then I realized I could go up stairs in a similarly normal way. My outside steps are too high and if I’m tired or haven’t been moving around enough to be limber then I can’t, but still. This was super exciting and halves my time for using stairs.
Carl has been biking and playing basketball to help prepare for some bike races in the summer and fall. He also helped get my bike into the Kickr Snap stand that Sarah used to use for Zwift biking (but hasn’t in a while). I managed a minute of very gentle biking. Then I had to call for Carl to help me because I couldn’t figure out how to get down! It was a very strange feeling to be stuck. I didn’t actually need him to lift me off the bike. I just needed him to help me think through a different strategy for dismounting. As with all new movements and abilities lately, this was exciting and humbling in equal measure.
My headaches unfortunately did what they always do and have me questioning if everything that seemed to work in the past few weeks was just due to the headaches being mild. I think I go through this every cluster, where my confidence in my new abilities to calm the beast is high at the start and then the headaches ramp up in pain to such a degree that none of the previously effective coping strategies work. Twice I tried the nasal spray that sometimes can stop a headache and neither time did it seem to work, aside from giving me a sore throat from the chemicals going up my nose and down to my throat. Carl woke to hear me crying and was able to rub my back until I could settle and the headache could abate. The second night I just woke him directly to ask for help. I don’t know how I would manage without his help. When I had reached out to my headache doctor a couple of weeks ago she said I couldn’t get the nerve block injections when I had a cold. I wish she had suggested that I call to make an appointment though! I now do have an appointment but for May 17. In the meantime I started prednisone yesterday and last night I did have a headache-free night. I woke often and had the sense that I barely slept, but I know I must have slept.
Amy has been focused on fairies all week, her love of sprites possibly rekindled by seeing Tinker Bell in Sarah’s production of Peter Pan, Jr. What this means is that whenever Amy is at home she probably has wings, whether she is doing homework to make a math board game featuring fairies, or just coming to have a meal. For Friday, though, she was not a fairy. She and one of her best friends spent hours on Thursday planning and exchanging items of clothing to set up their identity swap on Friday. Amy wore her friend’s clothes and backpack and shoes and cloak, while her friend wore Amy’s corresponding items. The challenge for such an exchange is that Amy is several inches taller than her friend and wears the next size up in clothing and shoes. I think that is what took so long in the preparations because they had to find just the right clothing pieces to trade. Then again, each meeting to swap things also turned into play and races down the sidewalk.
Last weekend when Sarah was sick she basically didn’t eat for two days aside from gatorade and applesauce. She stayed home on Monday for an extra day of rest. All week she ate much less than usual to the extent where I had to take in her adjustable waistband on Friday morning because her pants were so loose. This freaked me out a bit and reminded me of the very early years of stress about her lack of gaining weight. However, this weekend her appetite seems back to normal so maybe her system has finally beat whatever bug she had. We are also trying a different allergy medicine for her seasonal allergies. We used to do Claritin but her doctor said Zyrtec would be stronger. I double checked with her neurologist to make sure it was ok with regard to seizures because things such as Benadryl and Sudafed lower the seizure threshold. Zyrtec is approved but maybe sometimes makes her more tired. I’m not sure if it is helping her excess phlegm situation, but maybe it is. I’m also working to increase her water intake, since that will help everything work better.
We are having a wonderful weekend visit with Grammy and Granddad. Sarah is sharing her love of the Turning Red movie with Grammy, and yesterday I showed the short clips I recorded from Sarah’s Peter Pan Jr dress rehearsal. Amy, Grammy, Granddad, and Carl played a game yesterday that was similar to Dungeons and Dragons. My favorite part was overhearing the dismay about a particular direction when Granddad commented, “That stinks out loud.” I think I may borrow that phrase.
Amy has delighted in some new coloring materials and an Exploding Kittens puzzle furnished by Grammy, just as Sarah was thrilled by the gift of a crocodile puppet backpack that Grammy happened to find at a rest stop on the way to see us. Carl delighted in the gift of Fritos and I received a wonderful book called The Rodent Not Taken by Jennifer McCartney. It is an adaptation of famous poems as if they were written by cats. For one poem I was directed to wear a beret and snap as I read it. Lacking a beret, I put my napkin on my head, and Carl captured a picture of me being very serious while wearing a napkin on my head, as one does. As always, the visit feels too short and we wish it was longer.
Wishing you crocodiles, fairy wings, and napkin berets when you need them.
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