Saturday, April 24, 2010

He's Bweeding!!!

For those of you in the neighborhood who might have heard Josh yelling yesterday... The story goes like this: the kids were riding their bikes on our driveway - walk way and back porch when Dima literally bit the pavement - helmet on head didn't do much when his chin went down before the rest of him and he bit through his lip and slightly chipped a front - and permanent - tooth... before he could get up Josh was hollering HE'S BWEEDING!!! ... so Dima spent some time sitting around with his ice pack while dinner was being prepared and he seemed okay while we ate. Today he mentioned that the tooth feels loose so we'll keep an eye on it over the next few days. Maybe the hockey helmets with cages should be used for more than hockey... but how's the visibility with those things on? What are you gonna do... bubble wrap them??

Friday, April 23, 2010

Andie's cane

At therapy on Tuesday Andie graduated to a cane. They let her keep the walker for crowded situations where she could be jostled by other people but officially she's allowed to use the cane for most places. She had a follow up appointment with the physician at Good Shepherd on Tuesday and her meds were tweaked a bit so she needs to see how that goes but in general she's moving right along - literally.
Now she's to the point where she needs to get on waiting lists for apartments where she can have some access to help if needed but still be free to come and go on her own. Well, via the Lanta bus system for now. If anyone has ideas about that sort of place in the Allentown area please let me know - I'm probably going to make a trip up there next week to help get some applications submitted and we have some in mind but are open to suggestions.


Josh, Dima and I were riding bikes yesterday afternoon when one of the ladies who works in the office at Josh's school stopped in to visit our neighbor and said hello to Josh. His " job" for this week has been to take an envelope down to the office with another kid so as she was leaving he said something like "see you tomorrow" and she said "Ok, see ya Sweetie" Then Josh goes - "don't call me that" and I asked what he thought she called him - he said Teeny. So I explained that she said Sweetie and it's a compliment cause she thinks he's sweet. I had no idea that being called Teeny was offensive.

Monday, April 19, 2010

monthly aphasia meeting

Last week my parents and Andie went to a meeting of people who have had or are still effected by aphasia that's held monthly at Good Shepherd. I'm not trying to be mean when I say this but when I think of a meeting of a bunch of people who can't communicate it sounds like a plot for a sit-com episode.
Anyway, apparently most of the people that were there were alot worse off than Andie is; comparatively, she's communicating pretty well compared to what things could be like. There was one guy at the meeting that has to use a box to touch pictures to say what he wants to say. They also had a speaker come in who had a stroke four years ago and can now speak well but it took him some time to get his brain re-wired to get the words out. As far as Andie, she's getting around pretty well physically and she can talk but it sometimes takes a while to get out the words that are in her head. She does stick with trying to say but also gets frustrated when the wrong thing comes out. She's aware that by taking so long and stumbling over words that she looks like she's not smart but her intelligence is still in tact, just not the verbalization.
We went to Mechaniscburg on Saturday to go to lunch with our aunt and then visit an uncle in the hospital there and it was strange to be walking into another hospital and thinking about all the families and friends behind all of those patients lying there who are now going through what we just did. Even then Andie didn't want to use her walker but I think she should since some walking surfaces can be uneven.
These days she's still going to out-patient therapy at Good Shepherd two days a week for Speech, Physical and Occupational therapies and once she's done with those she's pretty tired. She does take the bus over to Good Shepherd and that can be frustrating to work with their schedule but at least she can do it herself. She's still within the six month period where they expect lots of improvement before she'll reach a plateau where she's gotten about as good as things will be. The meds she's on and the fact that she's still in recovery from the brain injury make her tired pretty quickly. So on non-therapy days she just takes it easy.

Thursday, April 8, 2010

"This was hell!"

This morning I drove up to Whitehall to take Andie to out-patient rehab, am back in Chester county now; we had a very nice day together. I called to let her know I was almost there as I got close and she asked if we could stop in at the salon where she usually gets her hair done to schedule an appointment. We had time to spare so we went over and one of the girls there also had Dr. Li as her neurosurgeon - more and more we meet people who think this guy is great. Andie really lucked out that he happened to be the one on call while she was in her hour of need. She met him - for the first time that she remembers... this past Monday during a post - op appointment. Today she was trying to describe meeting him and for lack of words she uses a lot of gestures so for him indicated bowing down!!
We made our way to the Good Shepherd Brain Trauma unit and even though it was lunch time we got to see some of her therapists and her old room mate who is still there recovering from a stroke. First we saw the case worker who was a huge help through the days spent there and with getting things set up for her to go to our parents' house while still getting the outpatient therapy. The physical therapists came to see Andie in the dining room where her room mate was eating and then the nurse who she most wanted to see was in her old room with a patient and we waited for her to finish so we could talk to her. The staff seemed happy to see that she's doing so well while Andie tried to describe how she looks over at their windows while she's in the out patient building.
While Andie did her OT today she wanted me to feel free to go back to a store I talked about on our way so I did - she likes a certain hair care smoothing balm that I'm on a quest for now - and so I missed most of OT. Once I got there she was going into Speech Therapy and laughingly telling the therapist "This was hell" - about having to do her homework. She's still overcoming the aphasia and it makes it tough for her to get her thoughts together. The assignment was to complete sentences like "I wish..." or to name parts of a car or tools and things like that. Well, I didn't realize it but the earlier therapists got me in the habit of giving her word choices which makes the thought process easier but if the question is open ended she's still got the thoughts in her mind but can't really get them sorted and get them out of her mouth.
Even names... she said today that she just calls everyone Lyn - works for me... but she's still got a lot to overcome communication - wise. If you see her out and about - the key right now is to just be patient and listen and watch the gestures while thinking about context. I've gotten pretty good at figuring out what she means; she does look to me like I'm her translator when I'm with her and as much as I'd like to I don't always know what she wants to say so then she gets frustrated and there are also times that I do know what she's getting at and I just let her take a minute and try to get the thoughts together. The point of the therapies is to get her brain to re-wire itself around the problem area.
After Speech she had PT and seems motivated to to well there. She's looking forward to getting rid of her walker but I think it might be a good idea to use it out in public. If someone bumps into her in a store while she doesn't have the walker to hold onto could be a bad situation. Plus, if she has the walker people will realize why she's moving slowly and might be inclined to give her more space.
Since I'm not up in Allentown so often and to not fill everyone's in-boxes I'm doing the updates less frequently now. Andie's also kind of in a holding pattern now while she's doing the current therapies. If any of you want to contribute to this blog send me an email with your okay to make the info public and I can cut and paste to give you an entry as a guest - blogger.

For the Friday's crew: Andie was really touched by your thoughtfulness - I've been reminded again and again what great family and friends we have through all of this.

Thanks to all of you for your support.

Thursday, April 1, 2010

Macy's flower show

If you'd have told me I'd be driving into Philadelphia to do to a DEPARTMENT STORE about a week ago I'd have thought you were crazy. Okay, I must be the crazy one cause that's exactly what I did. I heard a commercial for the Macy's Flower Show including a hot air balloon on display loaded with flowers and since that includes two of Dima's favorite things - he loves, loves, loves hot air balloons (we see them regularly from our house in the summer) and he loves flowers, and well, natural stuff. So... on Sunday we did indeed make the trek to Macy's. We got there and looked around and it was nice but he was like -" this IT?". Yup, that was it - The hot air balloon and flower displays on the downstairs sales floor and some stuff strung up in the air and some displays elsewhere in the store. We went up to higher levels and from there we looked down at the stuff and saw the organist playing. We were there early enough that we got to go on the first "tour" of the day where they take you from the "Wanamaker eagle" to go to the various displays and they point out the types of flowers used and what they were supposed to represent. He did listen and I asked him later on if he remembered any new types of flowers that he'd like to try to grow and of course he didn't. I'd loaded some geocaches into my GPS so to have something more to do we walked to the area of a cache and as we wandered around we sound it. It was one of those hidden - in plain- sight ones that lots of people must pass every day but have no idea it's there. We also stopped at a little place for pizza, went back through Macy's for one last look and then headed home.
At the end of the day I asked what the best thing about his day was and he said " I like caching!" Great, we could have done that practically in our back yard!


Andie's now off the waiting list for out-patient speech therapy so she had three hours of therapies at Good Shepherd rehab on Tuesday and that should continue on Tuesdays and Thursdays from now on. She takes the handicapped equipped bus to get there since she doesn't want to intrude too much on my parent's lives. The problem with the bus is that you have to go when and where you're told. I think we really lucked out last week when I went with her since we were the only people on the am bus and then we were also the first stop on the bus coming home. They sometimes have other patients that need to get places and then you have to be prepared to sit on the bus and wait til you get to your destination. They told us from the first day there that she should be prepared with a protein bar so she's prepared. It's just the way those things work.
This coming Monday she's got an appointment for a follow up with the surgeon whose skills saved her life back in January. She doesn't remember him and doesn't remember much about being in the hospital at all.
She does remember being visited by our relatives in he first week or so that she was in rehab which is interesting since she doesn't remember her own behavior around that time. She doesn't remember being adamant about not wanting to go the "therapy gym" once she figured out we were going there, or not wanting to do anything but sit in her room, or about trying to get out of bed the one morning while she was supposed to be only in the wheelchair to move around and getting really mad at the aide who was with her at the time for trying to keep her from getting up.
She's also got an appointment next Monday with the family doctor to review her overall health and her bloodwork. She's on nine different meds and supplements right now (taken at different times through the day) and I'm wondering if some of those can be reduced now that she's obviously getting better.