The Hoover Family picked Butler to win the NCAA championship because Butler is Lauren's middle name.
Butler just knocked off Kansas State to earn a spot in the final four! Not only that but they will either be playing Michigan State or Tennessee in their home town of Indianapolis.
In this year of upsets, we all know who to root for now!
Saturday, March 27, 2010
The Golden Period
Yesterday, Sandra and I attended Lauren's 2 pm physical therapy appointment to review spotting and transfers in preparation for Lauren's visit home.
We practiced getting up out of the wheelchair and onto the walker, walking down the hall with her walker, and we went to the stairwell to practice going up and down one step (for going up the one step at the front door). Lauren wears a blue Velcro belt around her waist that we can loosely hold on to, but also use to catch her if she starts to fall. Then Lauren got back in the chair and we went down to the parking garage to practice getting in and out of the car. It all went pretty well.
Afterwards, we went back to the PT gym and watched Lauren do exercises with her Physical Therapist Ashley. They took her to the parallel bars where Lauren would put her right foot on a 5" high wooden box then take it back down, then she would do the same with her left foot (the weaker one). This is called mirroring. By doing it with both the right and left sides, the brain will make new connections. They do it continuously and repetitively to build strength and make these neuro connections. Ashley turned her sideways then and put down a foam block that was 5" square and about 2' long. Lauren would have to side-step over it with her left leg, transfer her weight and then bring her right leg over next to her left one. Back and forth, over and over. The next exercise was walking along the parallel bars and high stepping, like a Clydesdale, and the last exercise was called "kicking your butt", where you swing your heel up high towards your buttocks. This was my first observation of her PT and I found it very interesting. The physical and occupational therapists here are remarkable.
A 3 pm, Lauren went off to music therapy while Sandra and I had the family meeting. We met with the Dr. Kim's nurse practitioner Danielle, the social worker Wanda, physical therapist Ashley, occupational therapist Kate and psychologist Rebeca. Dr. Kim was supposed to be there but had a conflict. We ended up meeting with him later, one on one. We are still on track for an April 13th release, but we found out that she will still be treated here daily for another 4 weeks after that. So, another three weeks as an inpatient, then four weeks in what they call the Day Hospital. They do this for several reasons. The first is that now is what Dr. Kim called the Golden Period. The most progress is made in the first three months after a brain injury, which is what Lauren is effectively recovering from now. More progress is made by working intensively now than would be achieved by working more moderately for a longer period of time. The brain is healing, making connections, and if we do not facilitate them now we will lose the opportunity. Lauren was disheartened by this, she was thinking that on April 13th she would go back to school. Instead she will be coming back to the Seashore House daily until mid-May. They also offered Lauren to go to Camp Cranium (http://www.campcranium.org/) which is in early June, so if she makes it to school this year, it will probably only be for 3 weeks.
Kate and Ashley both said that Lauren is a remarkable girl and they both said they loved her. They noted that she is making great progress. Ashley said that Lauren will walk, run, swim, and ride a bike again (not that she ever rode a bike much). It is also quite likely that she will wear an ankle brace for the rest of her life. Kate said that her fine motor skills are coming back quite well. Remember the exercise where she finds the beads in the silly putty? It was a quite intensive therapy then. Now, Lauren and Kate chit chat while Lauren makes beaded friendship bracelets for both of them. Which they both wear and of which Ashley was jealous and asked for one too. Kate said she literally uses a mirror when they do mirroring exercises so that Lauren can see how the right and left side of her body move differently and make the adjustments necessary to move similarly (bi-laterally). Kate said she is working on getting Lauren's core strong as sometimes she will slump to the left. She said with conditioning and mirroring that can be eliminated. I was thinking today about the quality and quantity of conditioning and exercise that Lauren is benefiting from, she has two personal trainers focusing on her all day long.
We practiced getting up out of the wheelchair and onto the walker, walking down the hall with her walker, and we went to the stairwell to practice going up and down one step (for going up the one step at the front door). Lauren wears a blue Velcro belt around her waist that we can loosely hold on to, but also use to catch her if she starts to fall. Then Lauren got back in the chair and we went down to the parking garage to practice getting in and out of the car. It all went pretty well.
Afterwards, we went back to the PT gym and watched Lauren do exercises with her Physical Therapist Ashley. They took her to the parallel bars where Lauren would put her right foot on a 5" high wooden box then take it back down, then she would do the same with her left foot (the weaker one). This is called mirroring. By doing it with both the right and left sides, the brain will make new connections. They do it continuously and repetitively to build strength and make these neuro connections. Ashley turned her sideways then and put down a foam block that was 5" square and about 2' long. Lauren would have to side-step over it with her left leg, transfer her weight and then bring her right leg over next to her left one. Back and forth, over and over. The next exercise was walking along the parallel bars and high stepping, like a Clydesdale, and the last exercise was called "kicking your butt", where you swing your heel up high towards your buttocks. This was my first observation of her PT and I found it very interesting. The physical and occupational therapists here are remarkable.
A 3 pm, Lauren went off to music therapy while Sandra and I had the family meeting. We met with the Dr. Kim's nurse practitioner Danielle, the social worker Wanda, physical therapist Ashley, occupational therapist Kate and psychologist Rebeca. Dr. Kim was supposed to be there but had a conflict. We ended up meeting with him later, one on one. We are still on track for an April 13th release, but we found out that she will still be treated here daily for another 4 weeks after that. So, another three weeks as an inpatient, then four weeks in what they call the Day Hospital. They do this for several reasons. The first is that now is what Dr. Kim called the Golden Period. The most progress is made in the first three months after a brain injury, which is what Lauren is effectively recovering from now. More progress is made by working intensively now than would be achieved by working more moderately for a longer period of time. The brain is healing, making connections, and if we do not facilitate them now we will lose the opportunity. Lauren was disheartened by this, she was thinking that on April 13th she would go back to school. Instead she will be coming back to the Seashore House daily until mid-May. They also offered Lauren to go to Camp Cranium (http://www.campcranium.org/) which is in early June, so if she makes it to school this year, it will probably only be for 3 weeks.
Kate and Ashley both said that Lauren is a remarkable girl and they both said they loved her. They noted that she is making great progress. Ashley said that Lauren will walk, run, swim, and ride a bike again (not that she ever rode a bike much). It is also quite likely that she will wear an ankle brace for the rest of her life. Kate said that her fine motor skills are coming back quite well. Remember the exercise where she finds the beads in the silly putty? It was a quite intensive therapy then. Now, Lauren and Kate chit chat while Lauren makes beaded friendship bracelets for both of them. Which they both wear and of which Ashley was jealous and asked for one too. Kate said she literally uses a mirror when they do mirroring exercises so that Lauren can see how the right and left side of her body move differently and make the adjustments necessary to move similarly (bi-laterally). Kate said she is working on getting Lauren's core strong as sometimes she will slump to the left. She said with conditioning and mirroring that can be eliminated. I was thinking today about the quality and quantity of conditioning and exercise that Lauren is benefiting from, she has two personal trainers focusing on her all day long.
Rebeca said that while Lauren gets frustrated at times, her overall attitude is good. She is positive and motivated. Lauren seems more willing to participate in activities now, prior to her surgery she would not attend Epilepsy Foundation meetings or support groups. She wanted to just be normal, denying her condition. I was shocked when she was so enthused by Camp Cranium, I think Ashley did a great job of selling it.
So, all in all, it was an educational day. Learning about mirroring and the Golden Period.
Friday, March 26, 2010
Time Together and to Reflect
Lauren had a field trip yesterday. The whole crew from our floor went to the Penn Museum of Anthropology and Archaeology. Its only a block away, but it got them all out of the hospital for a while.
Sandra and I got to spend the night together last night. Drank wine, went out to dinner, James was at a school dance. Tonight is James' basketball championship game. We are both looking forward to attending that too.
We ran together this morning and afterward made some observations.
First we both feel guilty for running while Lauren struggles to walk. We decided we were going to see what her therapies are going forward. Maybe we will become walkers or swimmers.
The second thing is how much I/we miss Dr. Storm. Here is a person, in whose hands we put our daughter's life and future. That creates a connection, as least for me. He was there for us for a month and now he's gone. Not that I would expect anything else, and I am sure we will see him again, but I have a little feeling of abandonment. I wonder if they tell them about that in medical school or their fellowship.
Sandra and I got to spend the night together last night. Drank wine, went out to dinner, James was at a school dance. Tonight is James' basketball championship game. We are both looking forward to attending that too.
We ran together this morning and afterward made some observations.
First we both feel guilty for running while Lauren struggles to walk. We decided we were going to see what her therapies are going forward. Maybe we will become walkers or swimmers.
The second thing is how much I/we miss Dr. Storm. Here is a person, in whose hands we put our daughter's life and future. That creates a connection, as least for me. He was there for us for a month and now he's gone. Not that I would expect anything else, and I am sure we will see him again, but I have a little feeling of abandonment. I wonder if they tell them about that in medical school or their fellowship.
Wednesday, March 24, 2010
So...Where Are We?
I am starting to wonder if daily updates are necessary. So tonight I will wrap up with a synopsis of where we are, as in what Lauren can actually do. Then going forward, if there is something newsworthy to report, I will. Otherwise...
So Lauren is doing well. The reports we get back from the people that work with her are all good. This morning she woke up, ate the bagel I ordered for her and dressed herself in bed. She cannot dress herself out of bed yet as she cannot stand long unsupported. As I said earlier, she can move some of her left leg independently but frequently she will need to pick it up with her hands. She still wears a padded turquoise boot on her left leg in bed, but switches to the slimmer and lighter lavender (with hot pink straps!) leg brace for action. She wears regular socks and sneakers on both feet, so when she has long pants on you cannot see the much of the lavender brace.
Once dressed she sits upright on the edge of the bed, lifts herself up and pivots into the wheelchair. She is getting good at driving the chair. She moves herself into the bathroom where she reverses the bed pivot only this time onto the toilet. The sink is HC accessible so she can wheel up to it too and wash hands and brush her teeth and hair. And that's it! She can also do those things with a walker, it just takes longer and requires more spotting. Of course, I think they prefer her to use the walker as it builds her strength and balance, but they also know they are working her hard the rest of the day so they cut her some slack.
So Lauren is doing well. The reports we get back from the people that work with her are all good. This morning she woke up, ate the bagel I ordered for her and dressed herself in bed. She cannot dress herself out of bed yet as she cannot stand long unsupported. As I said earlier, she can move some of her left leg independently but frequently she will need to pick it up with her hands. She still wears a padded turquoise boot on her left leg in bed, but switches to the slimmer and lighter lavender (with hot pink straps!) leg brace for action. She wears regular socks and sneakers on both feet, so when she has long pants on you cannot see the much of the lavender brace.
Once dressed she sits upright on the edge of the bed, lifts herself up and pivots into the wheelchair. She is getting good at driving the chair. She moves herself into the bathroom where she reverses the bed pivot only this time onto the toilet. The sink is HC accessible so she can wheel up to it too and wash hands and brush her teeth and hair. And that's it! She can also do those things with a walker, it just takes longer and requires more spotting. Of course, I think they prefer her to use the walker as it builds her strength and balance, but they also know they are working her hard the rest of the day so they cut her some slack.
In general, Lauren looks good and her spirit is good too. She commented to her mom that it had been several days since she got sad at night. She is sleeping well, no seizures, and no complaints of headaches.
This morning she complained that she was having vision problems. So that continues to come and go. The Neurologist, Dr. Clancy said he feels it is from the mega dose of Dilantin they gave her after the seizure she had following the last surgery. Dr. DiLuna (Good Fellow Mike) also said he did not feel their was any type of infection. Sandra clarified that Dr. Liu was non-specific about his mystery infection. So, like everything else, we will have to see.
Beyond that, Sandra and I are getting lessons on administration of emergency anti-seizure meds, car-wheelchair transfers, etc. in preparation for Saturday's home visit. Friday we meet with the Rehabilitation Team for a Pow-Wow to review progress (eat your hearts out 7W nurses!).
This morning she complained that she was having vision problems. So that continues to come and go. The Neurologist, Dr. Clancy said he feels it is from the mega dose of Dilantin they gave her after the seizure she had following the last surgery. Dr. DiLuna (Good Fellow Mike) also said he did not feel their was any type of infection. Sandra clarified that Dr. Liu was non-specific about his mystery infection. So, like everything else, we will have to see.
Beyond that, Sandra and I are getting lessons on administration of emergency anti-seizure meds, car-wheelchair transfers, etc. in preparation for Saturday's home visit. Friday we meet with the Rehabilitation Team for a Pow-Wow to review progress (eat your hearts out 7W nurses!).
Tuesday, March 23, 2010
Are you with me Dr. Liu?
Sandra had a busy day with Lauren yesterday. The capper at the end of the day was the visit with the Opthamologist, Doctor Liu. Sandra said it took a long time, 2 hours and they didn't even dilate her eyes. The doctor was perturbed, saying that a spinal tap was not done after the last exam. He intimated that she may have had an infection and that the spinal tap may have led to an antibiotic treatment that could have avoided scarring. Sandra wasn't very clear with me about what was scarred or what the long term consequences of such scarring would be. Lauren appears to be seeing 20/20 and she is on Facebook, which has a small font, as does her telephone text messages. Overall, the whole eye thing is resolving itself. He didn't even remember seeing Lauren previously, so maybe he thought he ordered something, or maybe he was covering up an oversight. She was being treated with antibiotics prophylactically anyway. We have a follow up appointment with him in 3 months.
I'm at the hospital now. Since I worked today I had to get briefed by Lauren. OT started in the pool. Lauren said she practiced lowering herself into the pool and swam freestyle while using a noodle. She then had PT for half an hour, which consisted of doing work on the parallel bars. Practicing walking, stepping over obstacles, uneven and soft surfaces. Lunch was next, followed by an hour with the teacher, who reviewed her schoolwork. Then more time in PT doing work with weights and other exercises. Last activity of the day was community art therapy. I looked for her work but could not find it. They certainly are working her hard.
When I arrived, Grandma was there. She hung out for a while but Lauren fell asleep. Aunt Leslie is coming into town tonight from Washington state. She will be here about a week to bond with her neice and help out.
I'm at the hospital now. Since I worked today I had to get briefed by Lauren. OT started in the pool. Lauren said she practiced lowering herself into the pool and swam freestyle while using a noodle. She then had PT for half an hour, which consisted of doing work on the parallel bars. Practicing walking, stepping over obstacles, uneven and soft surfaces. Lunch was next, followed by an hour with the teacher, who reviewed her schoolwork. Then more time in PT doing work with weights and other exercises. Last activity of the day was community art therapy. I looked for her work but could not find it. They certainly are working her hard.
When I arrived, Grandma was there. She hung out for a while but Lauren fell asleep. Aunt Leslie is coming into town tonight from Washington state. She will be here about a week to bond with her neice and help out.
Monday, March 22, 2010
Clowns and Clonus
Thought I was going to miss a day didn't you?
More PT/OT today, like everyday. When I left Lauren, she was peddling the bicycle with her hands. Not a real bike, just a machine on the desktop that resembles bike pedals. We got a late start though, due to ablutions, knots in pant drawstrings, meds, etc. Kate the OT was patient though. Everything takes twice as long.
DK came by and caught us in the room. His exam showed that she is getting stronger in every facet. With all the exercise she is getting, she is definitely going to rock the beach this summer. We need to put some skin back on her bones though. She lost 10 pounds over the surgery month. Every girls dream right? Well when you are 5'8" tall and 107 pounds it is not good. Lauren said her hip-bones look like daggers. She called them gross. Like everything else, we will make this right.
McDonald's gift cards kindly accepted. If Ronald can't put some meat on your bones, who can? (see Super Size Me)
DK's tests showed her arms are both strong and her left leg is progressing nicely. She is doing well at independently lifting her knee towards her chin, and is also doing well at lifting her whole leg off the ground. She cannot lift her toes off the ground and when you do it manually she has Clonus, which is an involuntary twitching caused because her calf muscles are too tight (too much tone they call it, which seems a contradiction to me). DK said if they cannot resolve the Clonus through exercise, it could hamper her progress. If that were to be the case they will inject her calf with Botox, which will relax the muscles and allow the other muscles to become stronger. I know, Botox? I thought people used that to tighten things. I guess it tightens skin, but loosens muscle. Anyway, I think the goal is to loosen the overworking muscles (which the brain has put into panic mode) and allow the muscles that are being dominated to do their job.
She got into the pool today too. With flippers! 5 weeks ago she was working towards her lifesaving certification.
Went to see her friends on 7W today and had an Ophthalmologist appointment today too.
Sunday, March 21, 2010
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