Author: jenannlynn

In March 2004, I suffered a severe brainstem stroke, & was "locked in" for several months". I have been married to a wonderful man, Mark ever since 1994, & we have 3 kids: Zach, Jessie, & Sophie. I have been blessed in so many ways by God, so I wanted to keep a blog to share my recovery, life, & answer questions.

June 13, 2004

Yet another mile stone has been met as Jenny attended her first day back at church. I did not realize how difficult it would be to get Jenny ready for church compared to any other day. First of all, there is this skirt and panty hose issue. I almost put a pair of Jessica’s tights on Jenny that were somehow placed in Jenny’s dresser by mistake. The real stockings did not seem much bigger, but I was aware of the “dance” and stretching that is involved with putting these things on. Despite my deficits, Jenny still looked beautiful by the time we were done. She and I only attended the first of the three hours of meetings. I knew it would be overwhelming to be back to a place she has found such support and strength by means of friends and gospel message. I appoligize to those who hoped to speak with her since we left early. Jenny was emotional the whole time and struggled to compose herself. I helped her take the sacrament, which is something she looked forward to doing despite having it brought to her in the hospital on occassion. She also loved to hear the choir, despite her tears and emotions. She looks forward to returning next week.

Jenny has demonstrated more movement in her body. I noticed that her toes were moving in a rythmic, fluid motion as if she was tapping to a beat. When asked to stop, she stopped, and would continue when asked to do so. Her right hand has also began to move all its fingers and bend at the wrist when Jenny is asked to move it. She has not been able to repeat these movements that all appeared last evening, but I assume it is normal to have the ability to come and go. I can get movement in her left hand too, with a new therapy that I invented called, “booger therapy”. It is simple and plays on Jenny’s dislike of other people’s snot. I simply hold her hand out and slowly move my nose close to her hand and she either bends the threatened finger out of the way or the whole hand. I guess this could be a reflexive movement, but at no time do I touch her fingers (even though I tease her that I will put her finger in my nose). She usually laughs and enjoys seeing movement as much as I do. Jenny also is able to make movements, upon request, better when she laughs. I’m not sure how that works, but I tell Jenny that she will take her first steps at a comedy club if this is the case.

June 12, 2004

Jenny has had a couple infections these past few days, but is still going strong. She sleeps at nights, but does not need naps during the day, which allows for more time to be up and moving her muscles. Jenny went grocery shopping with me, against her will, but she seemed to like it because when I asked why she was crying when I came home with the kids from another errand, Jenny stated she was sad because she wanted to go, and we did not ask. I guess she is getting used to the idea of going out into public. Jenny tells me her eyes having trouble focusing, so it keeps her from reading or watching movies. We got Jenny’s permanent wheel chair, which is so supportive, I went on a drive with her without needing somone to help support her head. Jenny also had a ceiling lift system put in to help with transfers from bed to chair. All Jessie and I know is that we can fly anywhere in the room, like Superman, without touching the ground. Maybe we will let Jenny try it since it is for her and all.

June 8, 2004

Most of what Jenny has been working on the last few days has been breathing around her trache opening that we plug for several hours at a time. It is more difficult than what it would be without a thrache since the tube is still blocking some of the air flow. Jenny is able to sit up in her chair longer and longer each day. She seems to be free of the severe pain and discomfort. All she has now is the constant moderate discomfort- which is still a huge improvement.

Sleep appears to be good as well. Our plan is to get Jenny out every other day for drives or trips to the park. She refuses to go to stores and the such still.

Jenny has been reluctant to watch videos/dvd’s, or even tv, since one little reference to hospitals or illness causes emotional distress. As it turns out, most of her favorite shows were hospital based (like ER). The recent illnesses of friends and family are also difficult for her. It just reminds her too much of her experience and she feels bad since she knows what suffering others are experiencing.

As for other improvements, Jenny is surprising herself. Therapists and ourselves always ask Jenny to do things she has not been able to do. Every now and then Jenny does something new and it can be seen in her eyes that she was unaware that she could do it. Then, she will pracise until she is sore.

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.”

June 3, 2004

Jenny had her first Dr appt away from home today. The idea was to go to the ENT who saw her at the hospital and get the trache removed. For a while, Jenny has been doing everything that seems to be recomended prior to decannualtion (trache removal). As for our experinece, the Dr said that she was not going to remove the trache, despite the fact that Jenny is doing what she needs to do, and the Dr did not even look at Jenny before she said this. In her mind, a person with a stroke like Jenny’s has a time limit to fullfill. Trache removal is a huge step for Jenny. It is a major moral boost. It is something that assures she is getting better. It is one less open wound or source of infection. The trache is a major source that requires frequent care. It gets bumped frequently, which is painful, and its placement hinds head movement to her right side without causing discomfort. Any pain or discomfort is what throws Jenny into a cycle of painful spasms.

I want to feel that this Dr has some credibility and that in some way Jenny is being spared from possible harm, but the whole experience with setting dates of 6-12 months and stating Jenny is not ready prior to examination tells me she is not the type of person Jenny needs. Jenny more than agrees. If anything, Jenny is so set on working harder than ever before to prove everyone wrong who said she could not do- well, anthing. She is going to everything she use to do and there is no stopping her now. I’m not sure if I liked the old Jenny who fought rehab therapy and wanted to lay in bed, or the new one who demands constant therapy. I think the new one is pretty good.

The trip to Jenny’s appt did demonstrate her ability to go places. Jenny should be returning to church soon, which has been something she really wanted. She is reluctant to go into public, such as places like the malls and stores.

The whole med concern with Jenny’s involantary muscle movements that cause pain seem to be coming under control. Her doctor changed the meds to address neurological pain again. Jenny initially stated pain was not an issue, but I don’t think she realized the neurological pain was causing most of her discomfort.