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.
Aug 3, 2004
Jenny had her trache taken out yesterday and she is so very happy. Our family had a great party for her where everyone but her had to wear a trache of some design and Jenny would be the only one without a trache. Jenny got a kick out of our traches. Dustin had a speaker mounted to his that played “Celebrate good times…”, Melissa had the only trache that looked like a real one (but was rigged to spray water for paybacks of all the times Jenny sprayed us). I had a long tube that wrapped around my body. Jessie had an elephant head. Zach had a pez dispenser strapped to his neck that looked like it had a trache with the little pez coming out of the neck. Jordan, our neice, had lip gloss that was strapped to her neck for easy access. Finally, Sophia had a pacifier (her weakness) on which she tried to suck, but it was strapped to tight to her neck, so all she could do was put the tip of her tongue on it. We later had a ceremonial trache burning and various party activities related to trache removal.
Jenny is doing well and has good breathing and clearing of secretions. She tells me it is much easier to breath without the trache. She swallows/eats better. Daily activites are less painful because it does not bump her trache. Her head turns more because it does not irritate her. I could go on, but the bottom line is that Jenny is getting better and overcoming. We wait to see what this will do in relation to regaining speech. If anything, Jenny has to pass air by her vocal chords at all times now and she has more time to practise.
Out of the blue, Zach has began to cuddle with his mom again. He does not say anything, but will lay down next to her in the mornings and place her arm over his body. Jenny has missed this so much. Zach was her biggest cuddler. It just seems that life is good right now despite the large obstacles we have to face (especially those Jenny has to face). I have really noticed how much growth Jenny has made these past couple of weeks. I have always admired her, but she has definately began the process of becoming the extraordinary person Heavenly Father has seen that she can be.
July 31, 2004
Jenny use to like mail and UPS deliveries, but now, the mailman delivers too many hospital bills/ test results and UPS people just deliver therapy and medical supplies. The kids love all the therapy equiptment and think that our house is like a playground now. Jenny would relate it to a torture chamber. With all of Jenny’s new abilities, it becomes our task to see what she can do, in a practical sense, with her movements. By seeing herself manipulating her environment, Jenny becomes more positive and feels like she is really getting better. Today, we went to a few stores and tried out a couple gaming joy sticks for fun. Jenny played her childhood favorite, Ms Pacman. She could move her player, but not fast enough to be good at the game. I also placed her in the front seat of the van, instead of her wheerchair, to see how she could do. Jenny sat better in the seat than her wheelchair. The only problem is that I have to lift her in each time (which she demanded all day long) rather than pushing her wheelchair up a ramp to the van.
We also went to the scrapbook store that she use to teach classes at. This was the first time I went in that store with her where we bought nothing and we were in less than 5 minutes. I guess it had to do with me running her through at lightning speed. I’m sure Jenny is looking forward to controling her own wheelchair due to experiences like this. Jenny has also met the decannulation (trache removal) requirements by plugging her trache for 24 hours. She actually kept the plug on after meeting the goal. So, as far as it looks right now, she will still get rid of her trache Monday. I promised to stay by her bed last night to watch her (she was obviously a little anxious about not breathing) but she actually breathes better with her trache capped while sleeping than when conscious. I feel good about her progress and after the last 48 hours, Jenny is confident in her abilities too.
July 29, 2004
This is truly the best day so far. Jenny keeps improving and getting stronger each day. As I did therapies with her today, I realized that Jenny could easily do all the movements needed to use a computer mouse. I put the mouse in her hand and off she went. Jenny cried tears of tremendous joy as she once again met another mile marker on her journey. It is my luck that just yesterday, I asked if I could unsubscribe her from all the e-groups that she was on because her e-mail box is always full of 100 e-mails or more. It surprised Jenny that she could move a mouse. If she can move a mouse, she can definately move a joy stick and control her own wheel chair.
We also went to the ENT today who changed Jenny to a smaller size trache. We also set a date to have the trache totally removed Monday!!! Jenny must meet the requirment of having it capped for 24 straight hours, but that is not a problem (he did make us promise not to try tonight, but we can do it tomarrow). Appearantly, it was an easy process of just taking out the tube and putting a peice of tape across the opening to close it up until it sealed on its own. He asked if we wanted our nurse to do it at home or if we wanted to come all the way to his office for a 5 minute procedure. Jenny opted for the office visit. That is alright, I was out of duct tape anyway. Jenny has officially decreed that she is getting better based on the events of the day. She has always been a hard worker and faithful, but she was pretty discouraged at her limited progress (based on the fact that she assumed she would be back to normal by now). After re-evaluating her situation, she is doing quite well in progressing. So, I assume Jenny will be able to read e-mails more often so her address is jenannlynn@aol.com if you wish to send a private message. Otherwise, I try to read postings to her regularly from this web page. Now I am off to re-subscribe Jenny to all her e-groups again- and find some way to disable e-bay.
JENNY LYNN'S NEWS 