Pigeon Pose

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Back to School

It is back to school season for everyone, including Kathy. Her first day even reminded me of when my parents saw me off to the first day of school. I stood in the driveway as she drove away, returning to one of her favorite places. (Kathy teaches Health and Physical Education for K-4 students)

For months Kathy's goal has been to go back to teaching this September. Her doctor's and therapists were very non committal about this goal, almost as if they did not believe that she would make it. Of course, she made it and has already comfortably completed her first classes of the year. In turn her therapists are impressed by her determination and how far she has come in the past months. There is still much improvement for Kathy to make and she will be continuing therapy in West Orange three days a week after school.

The return to teaching was a positive and emotional event for Kathy. She had the first opportunity to see kids, parents, other teachers and friends that she had missed since March 27th. This seemed to open up some feelings and emotions that she was not necessarily prepared for but were all positive. Ultimately, Kathy was warmly welcomed back with open arms by the entire SPF school district and McGinn School and is excited for the 2010 - 2011 school year.

New Developments

Strength gains for Kathy are continuing on a weekly if not daily basis. The coolest thing that I have seen in the past week is downward dog, upward dog, childs pose, and some cat cows from table pose. It was very exciting to see Kathy begin to do some of things that brought her tremendous joy prior to GBS.

In addition to these new physical developments Kathy has also continued to develop her independence. Yesterday was Kathy's first fully independent trip outside the house, driving the car and getting into her sister's hair salon for a color and trim. Additionally, today Kathy did some grocery shopping and ran a couple of errands!!

She is still planning on returning to teaching in the fall and is very comfortable that she will be ready to do so.

First trip behind the wheel!!

This was a big one!! Look out for a Blue Jeep Cherokee!

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Friday Pizza Night

Home made pizza courtesy of Kathy. It is great having a wife who loves to cook, and can!!
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Off the walker and on to the Cane!

It is official - as of today Kathy is off the walker and onto the cane only! She got this news today from her PT therapist at Kessler. Progress continues for Kathy everyday. It seems as if it is exponential and progress compounds on progress. We have been really happy about this for the past 3-4 weeks. The next major milestone will be driving the car. This should help her regain a large part of the independence that she has lost. Right now the steering wheel is no problem as the strength and dexterity in Kathy's upper body is very good. Her legs are still lagging behind a bit and she is not able to move from gas pedal to brake (important item!).

Kathy wanted to try the bike on the trainer

She looks good on the bike!!

Kathy pre DMB show

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Update

Kathy's progress is still very consistent. She is making gains in strength and coordination every day. The progress remains very slow in relation to where Kathy would like to be. However, her ability to function on her own inside the home is now almost fully intact. When Kathy initially returned home she needed support with every aspect of life including simply getting out of bed. All of this is now done completely on her own. Out of bed, shower, eating, preparing meals, dressing, shoes and socks etc. Kathy even made me a chicken and asparagus dinner yesterday night. The walker is no longer necessary for moving around the house and in most cases only comes with us in the car. Any walking that Kathy does is still short distances and we typically still use the wheelchair for any extended distances or days away from the house.

Yesterday was a follow up visit to Kathy's inpatient doctor at Kessler. We found this to be a bit underwhelming of a visit. Her doctor felt that she was still making progress and was able to physically measure and show us that progress. However she made a comment that some GBS patients do not always get back 100% of what they lose. This was the first time that we heard this from her (although we have read it in other patients accounts). I think that both Kathy and I understand the reality of what types of deficits GBS could leave a person with. Although, any energy focused in that direction is not positive energy almost as if those types of thoughts are self fulfilling prophecies. I feel as if Kathy is an athlete training for a specific goal, a goal that she will achieve. Right now that goal is resuming normal day to day activities (she is almost there), later in the summer that goal will be resuming a normal work week and returning to teaching. I look forward to supporting her in this and know that she will do what she sets her mind to.

Out and about for some Groceries

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New Walker

Here is a picture of the newest weapon in Kathy's walking arsenal. Thank You to Kathy's mom for bringing this over yesterday. The best thing about the new walker is that Kathy can now easily walk laps around the neighborhood! Right now the laps are short Dudley to Trenton, Trenton to Phillips and back home. The plan is to do these two - three times per day until Kathy is totally comfortable at that distance then increase the distance bit by bit. The new walker also allows Kathy to get in and out of the front door totally under her own power, then easily up and down the ramp in the front of the house.

June 9 - Update

It has been a while since the last update and fortunately in that time Kathy has continued to make great progress. She is now walking from the car into the house (with help) and vice versa. Today Kathy did the steps in the back of the house instead of the ramp in the front. Hopefully within the next couple of weeks Kathy will migrate from the wheelchair, as the primary long distance tool, to a walker with a seat. This will allow her to walk but stop and take breaks when she needs them. Kathy is also now off of "contact guard" allowing her to move around the house on her own. Her stability and gate when using the walker looks very good, almost normal. As the walker is slowly becoming the primary support, she is already working on the use of a cane in therapy.

Kathy's biggest challenge continues to be her strength. Her right upper body and left lower body seem to be much stronger than their counterparts. Additionally, she is stronger distally than proximally. This is all coming along slowly but the advances in her strenght are noticeable on a daily basis. Today we had two doctors visits. The first was to Kathy neurologist who had treated her in the critical care unit. He is very pleased with Kathy's progress and reassured us both that her condition and recovery is purely a matter of time. However, he was sure to remind us both that Kathy needs to eat 2500 to 3000 well balanced calories per day, commit fully to her daily therapy routine, stretch, get massages, see her psychologist and most importantly remain patient. I am certain that the two obstacles from this list will be the calories and the patience!

The second doctors visit was to our family doctor to get him up to speed on Kathy's condition in case we need any additional help going forward. This was a quick visit and after meeting with us he also reassured Kathy that time is what she needs.

Treadmill Work!

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Weekend Update

The Memorial Day weekend holiday was a great opportunity to relax on Kathy's first weekend back. Of course Kathy still had to do daily training work with stretching sessions and upper / lower body strength work. Twice a day we did stretching and added in strength for the upper body in the morning and strength for the lower body in the afternoon. We have also been closely monitoring Kathy blood pressure and heart rate as these are still slowly coming back to normal. She is still on two medicines to control them. We will ultimately need a doctors consent to release the meds, but the goal given to us by her therapy team at Kessler is to slowly wean her off them at home. As long as her blood pressure and heart rate fall within certain parameters she can take less and less of each medication. This has been going very well, and the meds are needed less often today than they were the day Kathy came home.

This past Thursday was Kathy's first day of outpatient therapy at Kessler. She will be working with two new therapists so thursday was a bit slow as both therapists did assessment of Kathy and got to know her. Additionally, Thursday proved to be a difficult day. Kathy told me that she woke up "pissed off" that this had happened to her. Being home and in her own space is good but seeing her family, friends, and neighbors outside enjoying the weather and season was upsetting because she can not fully share in that yet.

Of course Kathy proves daily that she is making great progress. Two key transitions already took place over this weekend. First, we decided to not use the walker inside the house, provided that someone is with Kathy to hold her hand and grab her belt area if she loses balance. Second, Kathy walked under her own power from her car, down the driveway, up the ramp to the front porch then into the front door! This was awesome for Kathy and it was obvious that development made her feel good about her progress.

We are looking forward to more gains over the next couple of weeks.

First Full Day Home

Kathy's first full day home was very busy. The house needed some attention with laundry and putting away some of the items that had accumulated over the past 2 months. We also had multiple stretching sessions and had to return to Kessler at 1:00pm to begin an outpatient therapy. Kathy will again have both OT and PT. She met with both therapists who do their own initial assessment and start her on a newly customized therapy plan. Other than the travel, the outpatient therapy room at Kessler seems to be much more active than the inpatient therapy room. It seems likely that the inpatient therapy had reached a point where it no longer was challenging her to the extent that she needs to be work.

One of the benefits of being home is that there are no longer any restrictions on how Kathy moves around. Now the wheelchair just stays in the doorway and is pretty much only for the times when we leave the house. Inside the house Kathy walks using the walker and sits normally on the couch or at the kitchen table. This new amount of walking and moving around will be great for her strength gains. We will still be monitoring her blood pressure and heart rate as she is still on medications for both.

Kathy's appetite is still very small and getting good food in meaningful amounts is difficult. Kathy's first night home she was able to do her first grocery shopping in 2 months using the PeaPod service. PeaPod allowed us to select all of the groceries that we want online then schedule the delivery - for just six dollars extra! This was great and allowed Kathy to really select what she wants to eat. This should be good for getting appetite back. The weekend is going to be filled with relaxing, yard work and hopefully some walks outside.

The official going home picture!!

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New Developments

Everyday brings something new! Yesterday Kathy called me very excited that she had walked without the walker! The only support was holding the therapists hand. At my visit today, I spent sometime in therapy with Kathy and was able to walk with her holding just her hand. This was awesome and everyone in the therapy gym was checking her out!

The next steps on Kathy's agenda are figuring out outpatient therapy times and a support structure for her time at home. Kathy is still in a phase called "contact guard" which requires her to have someone present with a supporting hand on her when she transfers, walks, or moves in anyway out of or into a chair / bed / walker. While she is in this phase and at home someone will need to be with her at all times. Even though she could likely do most things on her own the risk of additional injury is still high without the support.

We have a good idea how we are going to staff the house to support Kathy and will firm this up next week. We also decided what times will be best for her to travel back to West Orange for therapy. Hopefully these times will also work for Kessler. Last on the list is adapting the house to Kathy's needs. There will be a ramp for the front door and front porch. Also, additional railings in the stairwell and well placed chairs in the house. The throw rugs will be taken up for easy wheeling / walker use and we will likely move the kitchen table to create a bit more space to move around.

Six more days then into the next phase!

Kessler last day finally determined

Kathy's stay at Kessler has been extended by one week. Her final day will be next Wednesday 5/26. Over the past few days Kathy and I have gotten into the idea of her coming home, so an extension of her stay at Kessler is nothing monumental at this point. However, it will give us additional time to make arrangements for care, plan her outpatient therapy, and most importantly give Kathy extra days to make strength advancements prior to coming home.

Kathy's original goal was to be home by the end of May with the ability to walk and function fairly easily within our home. She will certainly make the time goal that she set for herself, however Kathy feels that she is behind on the functionality side. I think she can make the functionality goal as well since she can easily walk 75+ feet and our house requires no more than half that from end to end. I believe that once Kathy is home, she will discover that moving around the house and functioning independently is achievable. This may include some strategically placed items ie. drinks, snacks, computer, and chairs for resting.

We are almost certain that Kathy will travel back to West Orange to do the outpatient portion of her rehab. This will be three days a week for two hour sessions. Additionally, there will be home stretching and strength exercises (we practiced some of these today). In preparation for coming home, tomorrow afternoon Kathy and I will be doing additional training for transfer and support scenarios that could come up in real world situations.

Good Week

This has been a very good week but definitely had its stressful moments. Kathy has made many improvements in strength and stamina. Her walking distance has improved to about 75 feet with the walker and she told me today that her legs feel similar to how they felt the day she walked into the hospital on March 27th. She is also doing some of her transfers totally under her own power, in fact getting out of the car today I did not even need to spot her. Earlier in the week (Tuesday) her catheter was removed and apparently this can present problems where people have trouble regaining the same level of control that they had prior to the catheter. Of course, for Kathy this was not the case and once it was removed it was as if the catheter had never been there.

Friday, Kathy and I learned that she will likely be discharged from Kessler either Wednesday this coming week or potentially a couple days later in the week. This will be determined sometime on Tuesday. This did come as a surprise and initially both Kathy and I were very apprehensive and even a bit shocked about this as we felt that she needs more time. However, the determination is made based on whether or not Kathy needs medical support ie. a doctors care 24/7. Both Kathy and I have a substantially more holistic idea of what medical means but it seems that in the doctors and insurance companies eyes medical has to do with medicine. How a body functions and an individuals ability to be independent is not a medical issue but a social issue.

Since Kathy truly no longer needs the support of a medical doctor and medicine (as defined), we both understand that coming home is probably for the best. In fact, the idea of Kathy coming home has grown on me over the weekend and I am now feeling that this is the best thing. She is ready to be back in her space and with her family and friends. This will allow her the fastest progression through the next few months of strength building. Outpatient rehab will be the next step along with strength building and stretching at home on a daily basis.

I will be very excited to have Kathy home!!

Day Pass

Yesterday was Kathy's first day outside of the hospital since March 27th. We started with a plan to go for a drive and then a walk in the local park. We drove north a ways passing the park we hoped to return to and then west towards the Caldwells on Bloomfield Ave. The drive quickly became goal oriented and we never made it to the park. About 45 minutes into our ride Kathy suddenly wanted to go home and see her house, street, and take a nap in her own bed. I was more than excited to oblige this request. I have found over the past few weeks that it takes almost exactly one hour to get from the Oranges back down to our house. Yesterday there was a bit of traffic so an hour and ten minutes later we were in the driveway.

Kathy was a bit nervous the entire way down. She wasn't exactly sure what she was nervous about, maybe seeing the house or her wheelchair not fitting properly in the house. However, all of this worked out and soon Kathy was napping in her own bed and had "Bravo" on the TV instantly. Being home for a even a short amount of time was wonderful for Kathy and myself. It created a brief sense of normalcy at an otherwise very strange time in our lives. I can't wait for her to come home again.