Family

June 30, 2004

Jenny has definately changed from constant crying/emotional outbursts to laughing fits. Both are typical effects of her stroke, but the laughing is so much more enjoyable. Jenny is getting stronger in her trunk and neck. I sat her in a rocker and a glider chair and she sat so well. I moved the glider down to the main floor so she could use it more. She also is able to sit and support her trunk and neck for several seconds if not more. Jenny is working so hard that by evening time she is truely wiped out. The physical therapist took her wheel chair leg supports off and Jenny began swinging her right leg from side to side with quite a bit of force. It appears that Jenny discovered this movement and had been waiting for a chance to show it off, She can also lift her knees a little, when helped. She pretty much can move anything with a little help.

I took Jenny on a date to see Harry Potter in the theatres. I was well prepared, but a few obstacles popped up. This was one of the first times we went out where we were totally by ourselves. I had to use the restroom, but realized I did not know what to do with Jenny. I could not take her with me, and I did not want to leave her in the hall alone. Aside from waiting to use the bathroom until I was home, it was a great date. I was greatly aware of how accessible buildings were due to my social work background and having a double stroller for all these many years. It is just a bit more difficult because Jenny and I had each other to hold doors and help over curbs.

June 18, 2004

Just when I thought there was a stop to progression, Jenny burst out of the gate today with a bunch of new movements. She feels better today for the first time in over a week, due to infections, and this most likely is a contributer to the improvements. Jenny was lifting legs, moving toes, holding her neck and moving it, and supporting her trunk. Jenny’s brother, Steve, had located a bed that has really improved what the therapists can do in therapy. Jenny also got out of the house again today and went to the community pool to see the kids swim. She seems to want to be more active and up in her chair. On occassion, Jenny has had long stretches of crying and extreme emotions (which is par for the course), but she has been in good spirits with family visiting this weekend. I think Jenny did a little showing off today with her visitors. In that case, I will have to rotate visitors in and out during therapy times.

June 5, 2004

It seems like the really big improvements come after the biggest struggles. Jenny looked and felt so good today, maybe since she slept almost 8 hours last night. Her spasms are gone and she was working hard in therapies today. Jenny has resisited eating in the past since she could not do it perfectly. Well, she figured out how to finally stick out her tongue (as she is asked to do in most exams) last night, so she practiced all night and the next day. Unfortunately, there is a bit of a different motion needed for eating, but she must have assumed she had control of the tongue and that was all she required. Jenny was demanding to eat, and she was specific. She had a finely cut soft taco, part of 2 puddings, and an entire cup of yogurt. Since she was daring, we tried spooning liquids. She was perfect at it until I poured it in her mouth with a cup- which was a bit too optimistic. She was amazing.

I also picked up a massage table to allow Jenny to lay on her belly since the table has a hole for the face (and thus her trache). She was thrilled to let her back feel the air again. I gave her a massage and then let her lay there until she was ready to return to her back. I think I just unknowlingly added 30 minutes to our already busy daily routine. Finally, Sophia has been hanging out with Jenny much more lately by just talking to her and being silly. Sophia is also her mom’s biggest advocate when we forget to put Jenny’s glasses back on. Anyhow, Sophia came up to me with a T-vent (a humidifier device that is 1 1/2 inches and fits on the end of the trache in a t-shape) and asked me to put it on her. I stuck it on Sophia with medical tape and showed Jenny. Of course Jenny got a huge laugh, but then Sophia probably did the sweetest thing someone could do for Jenny. Sophia said, “Look at what I’m wearing mom- I’m beautiful.”

May 27, 2004

We have had a great day with Jenny. Sophia has been asking to sit on Jenny’s lap, so we gave her a chance while they watched tv and Jenny had her hair brushed. The kids love to climb in bed with Mom and they get excited when they see her body move. Jenny asks for the kids to come hug her and she loves the contact. On the flip side, it is difficult to hear the kids get hurt and the instinctive reponse is to call for Mom. Jenny wants to comfort them so bad. The kids are sometimes allowing us to bring them to Jenny when they are hurt- especially when they just need hugs.

Jenny complains about not being able to sleep much. She does not appear to be sleeping ever. She states that she has not slept more than 1-2 hours at a time since her stroke. She also reports that she tends to not sleep at nights. She doesn’t sleep days, so I’m not sure what is going on. Her muscle spasms are still gone. I really think the Botox shots were wonderful. We worked on head movements today and Jenny was able to lift her head back and forward, left to right, and truning left to right. I held the back of her head for minimal support. She gave more than slight movement. I let go several times and she could move completely by herself! I get all teary eyed when these things happen. Jenny still is not pleased with her progress, but I think she feels good deep down.

May 25, 2004

Jenny is looking so very good. She feels very discouraged and is fighting the idea of therapies at home, but she is really getting better much faster, even though she has not done much physical therapy. Her body is not experincing spasms and she was able to hold her head for several minutes without support today. Her body thermostat is becoming more normal all the time. Jenny reports that her double vision is pretty much gone and her eating/swallowing/mouth movements are better than ever. Jenny would not agree to there being improvments, but she has numerous. We are working out the bugs with nursing and routines, but I think things are going well.

I carried Jenny upstairs for a chance to see our new painted walls and our bedroom. She napped with me on our bed and the kids all joined in to hug on their mom. It felt good to have this type of experince as a family again. I feel good about the future of Jenny’s rehabilitation.