News

Aug 13, 2004

Jenny was very ill today. I have been cautiously wondering what would happen if Jenny ever threw up – especially now that her trache has been removed. I now know. It was a mess, but Jenny did great with handling everything respiratory related. She now feels much better and I think it was something she ate. Many of her meds were reduced that help with pain and involuntary movements. She seems to be doing well with it, but we should know in a couple days if she can tolerate the reduction. Jenny would prefer to be off all meds, so she will deal with some pain if she could.

Aug 12, 2004

Jenny got rid of a few more medical related things today and did some aqua therapy indoors today. The weather has been cool in Indy this summer – which happens to be the first year we try to get to a pool more often. Anyhow, with just under 2 weeks’ break from aqua therapy, Jenny was able to demonstrate new movements in the water with her left leg, as well as right arm and leg. Many times, Jenny surprises herself when she is asked to try something and she ends up doing it. I have learned that it does not hurt to ask. I ended up getting Jenny’s face in the water, by accident, and she did fine – despite my error. Her biggest problem was laughing too much.

Aug 10, 2004

Jenny enjoyed her birthday last Sunday and is most positive that now she is 31, things can only get better. She really liked 2 parts of her party. The first was the lasagna that her sister made (with plenty of leftovers). The second, which was a surprise to me, was a simple watch that speaks the time on the hour. It appears that we have erred when it comes to keeping Jenny informed of the time and date. I did hang a large wall clock, but I guess that is only good if I also placed her so she could watch it when she needed to know the time. It appears that this simple gift was another way to lift one more barrier.

We have been slowly getting rid of medical related equiptment which the act of doing so serves as a symbol of her progress. The trache is obviously gone (the hole seems to be completly closed now), I have removed head and trunk supports form her wheel chair. The medical rental company removed medical equiptment from her room. There are also various plans to removed or reduce other medical related things in her life. At times when progress has slowed, or she has experienced decline in her vision, it tends to be a positive boost to have these medical things removed.

Aug 8, 2004

Jenny is on a streak of having really great days lately. Last night, her sister kidnapped her and they were out late buying the mall out. Today was Jenny’s birthday and she was in good spirits all day. She was dressed in a new birthday outfit for church and looked beatuiful. We had a birthday celebration and opened gifts with her. The kids have been overly affectionate with her to the point that we have to limit their love giving now, or watch to see that they do not get too aggressive with her. Going to church (one of the more emotional places for Jenny) was uncertain since Jenny’s vocal chords were fully accessible. She cried good and long during the opening hymn “Because I Have Been Given Much”. It is a favorite song that has lots of meaning for her. The rest of the time Jenny had laughing spells, but was generally reverent and able to limit the outbursts. I have to admit that it would be nice to laugh or cry when you want and get away with it.

Aug 7, 2004

Jenny is still doing great with not having a trache. Our theapies are more aggressive since we are not limited to doing activities that will not aggitate her throat. I gave her her favorite choking food (rice), at her request, and she does a great job coughing it back up. She eats other foods much better though. We have not been doing water therapy while the neck heals and I see how much it has helped her. Jenny has a tiny hole in her neck right now, and I assume it will be totally closed up by a week from the removal date.

At his moment, Jenny is birthday clothes shopping with her sister. As a matter of fact, Jenny pretty much wants to go somehwere any time she has the chance. We have a great routine now where we get ready, do therapies, relax and cuddle on the couch as we watch a movie or tv show, Jenny tries to get me to go someplace with her (and demands that I lift her into the front seat), therapies, eat a lunch of pasta, read together, do more therapies, and get ready for bed. All the while we do med stuff, interact/play with the kids, and clean up our huge messes. At this moment, our home is in disarray while we get an addition placed on. Anyhow, things are looking good despite some setbacks.

Jenny has complained that her eye sight is bothering her again and her left side is not as active as it was, but her right side continues to get stronger and she has much bigger movements.