Well, we have been home for a little over a week and things are continuing to evolve on a daily basis. I didn't think I could be any busier than I was before, but I am busier than a three legged cat in a litter box (you'll have to use your imagination to get the picture).
We have completed the initial Home Health speech, occupational and physical therapy evaluations. We tried as much as possible to pick up where we left off at Walton. In some cases it was not possible to continue specific therapies at home (e.g. standing frame), but we were able to come up with activities that accomplish essentially the same goal. The Home Health program will continue until she is strong enough to participate in an outpatient therapy program. I suspect that will be 4-6 weeks and we'll keep the same focus areas that we had at Walton.
Judi is eating very well and hopefully the next swallow study will show some significant improvements. She is feeding herself, but the technique needs a lot of work. Meal time is a true test of patience, but you have to let her do it if she is going to learn. Much of it is continuing to develop her eye/hand coordination again.
We have made significant gains on the mental front since being home. Judi will essentially follow any command that she understands. She has become very inquisitive in many areas, but anything mechanical in nature totally intrigues her and she has to figure out how it works. As you can guess, she usually figures it out pretty quickly. She is very good picking colors and now we are working on numbers and letters. She is also starting to recall memories from the past. I talk to her almost constantly when we are together and as mentioned before, I believe she understands all of it. Today I asked her if she remembered what she did to me the first time we went to the beach together (that was 30 years ago), and she busted out laughing. As previously stated, I won't tell you all our secrets, but that was clearly the right response. I can't tell you how uplifting it is to hear her laugh. Jessica also comes running when she hears her because it just validates to us that Judi is there and we just need to help her come back.
We have had some very emotional days as she continues to absorb what is around her and where she is physically/mentally. I don't think she remembers what happened to her, but I think she realizes that she has a serious brain injury and some associated physical limitations. She gets very frustrated at times when she is not able to get her body/mind to do what she knows it should do. I will admit we have had some good cries together and it usually does both of us good. Those are usually followed by a little quiet time holding her close and praying with all the energy I have for the strength to carry on. Those prayers have been answered every time and it seems that the spark in those brown eyes of hers gets a little brighter when we work through these. Although these are emotionally draining, they are all good signs that her cognitive side is returning.
As far as talking, I expect her to start at any minute.
I need to thank all of you for your continued support and prayers. I need to give special thanx to my brother and some very generous members of his church. They are all builders by trade and are providing the labor to build a sun room on the back of our house to give Judi a wonderful place to recover since all of our bedrooms are upstairs. I also need to give a special thanx to Mary Ellen and Christine from Judi's Weight Watcher's group for the wonderful meals they brought for us last week. The food was awesome and I am signing up for the program if this what they get to eat!
Steve
Sunday, September 27, 2009
Friday, September 18, 2009
Home Again!
Well, after almost 5 months, Judi is back at home!!!!
I know that both of us are tired of staring at hospital walls and dealing with the routines inherent to those types of facilities. Although Judi was doing very well in rehab, she had reached the point where it was no longer necessary to be in the hospital environment while receiving therapy.
She will continue to receive therapy in our home until she is strong enough to participate in an outpatient rehab program. We still have a long way to go, but she continues to make steady progress and we want her to keep that momentum. We will continue to focus on the same core areas since they open so many other doors for her. Hopefully I can get her to eat more with some home cooking and finally transition from the feeding tube.
The biggest thing we hope to achieve with bringing her home is to allow her time to heal mentally in a familiar environment. She had a difficult time yesterday as we went around the house. She was constantly rubbing her head and very agitated. I suspect that it was just a huge rush of electrical energy in her brain as everything came rushing in. I did remove all the things that would make her think of motorcycles before she came home. I really want to be able to talk with her and understand how she feels before she gets exposed to those things. We'll continue to take it slow and easy and give her plenty of time to heal. I continue to remind people that Judi's last brain surgery (bone flap ) was just a month ago and she has made huge progress since then. Once she begins to talk, I suspect we can make a lot of additional progress. She has already shown the ability to "learn" things that she is exposed to. I continue to have faith that she will recover fully in this area.
If you would like to come and visit, just let me know before hand. She still tires easily (physically and mentally), but the visits are great for her. I am finally starting to put our house back together after five months of leaving things where they landed. Hopefully Judi won't remember the mess when she comes around or I'll be in deep trouble.
Several people have asked what our plans are now that Judi is at home. I plan to stay at home with her for the next couple of weeks as we get all of the home health and other logistics in place and running. I also want to be with her to ensure that she gets the "TLC" she needs as she deals with being home and the rush of old memories she may have to deal with initially. I have hired an agency (Right at Home) to take care of her during the day when I go back to work. They will provide Certified Nursing Assistants (CNAs) who are experienced with people in her condition and have the medical knowledge to monitor for problems and deal with emergencies. It will be the same couple of people so that they can build a relationship with us. I believe this is critical for Judi so that there is a stable environment instead of sea of constantly changing faces. I'll stick with the weekly updates unless something dramatic occurs.
Thanx again for all the prayers and support,
Steve
I know that both of us are tired of staring at hospital walls and dealing with the routines inherent to those types of facilities. Although Judi was doing very well in rehab, she had reached the point where it was no longer necessary to be in the hospital environment while receiving therapy.
She will continue to receive therapy in our home until she is strong enough to participate in an outpatient rehab program. We still have a long way to go, but she continues to make steady progress and we want her to keep that momentum. We will continue to focus on the same core areas since they open so many other doors for her. Hopefully I can get her to eat more with some home cooking and finally transition from the feeding tube.
The biggest thing we hope to achieve with bringing her home is to allow her time to heal mentally in a familiar environment. She had a difficult time yesterday as we went around the house. She was constantly rubbing her head and very agitated. I suspect that it was just a huge rush of electrical energy in her brain as everything came rushing in. I did remove all the things that would make her think of motorcycles before she came home. I really want to be able to talk with her and understand how she feels before she gets exposed to those things. We'll continue to take it slow and easy and give her plenty of time to heal. I continue to remind people that Judi's last brain surgery (bone flap ) was just a month ago and she has made huge progress since then. Once she begins to talk, I suspect we can make a lot of additional progress. She has already shown the ability to "learn" things that she is exposed to. I continue to have faith that she will recover fully in this area.
If you would like to come and visit, just let me know before hand. She still tires easily (physically and mentally), but the visits are great for her. I am finally starting to put our house back together after five months of leaving things where they landed. Hopefully Judi won't remember the mess when she comes around or I'll be in deep trouble.
Several people have asked what our plans are now that Judi is at home. I plan to stay at home with her for the next couple of weeks as we get all of the home health and other logistics in place and running. I also want to be with her to ensure that she gets the "TLC" she needs as she deals with being home and the rush of old memories she may have to deal with initially. I have hired an agency (Right at Home) to take care of her during the day when I go back to work. They will provide Certified Nursing Assistants (CNAs) who are experienced with people in her condition and have the medical knowledge to monitor for problems and deal with emergencies. It will be the same couple of people so that they can build a relationship with us. I believe this is critical for Judi so that there is a stable environment instead of sea of constantly changing faces. I'll stick with the weekly updates unless something dramatic occurs.
Thanx again for all the prayers and support,
Steve
Wednesday, September 9, 2009
Rehab Update
Judi continues to get better day by day. She will be staying at least another week due to the progress she is making.
She is still struggling with talking where we can understand her, but she is very vocal and has started laughing at times as well. I can't tell you what it does to my spirits to hear her laugh after all we have been through. I can also tell you that without a doubt, Judi understands at least part of what we are telling her. I won't tell you what I said to her, but it was an old joke between us and she started laughing when I said it. Just another reminder she is in there and ready to come back to us.
She is following commands much better and has become VERY active in exploring things around her. I made a mistake and showed her how to unbuckle her wheel chair seat belt (What was I thinking????). I have to keep a close eye on it now because she can do it pretty quickly. She is also intrigued with different textures and loves to touch everything that comes within reach. These are all good signs.
She continues to have difficulty processing information that requires multiple brain functions and being able to establish a clear method to communicate "yes/no" responses. This has us a little perplexed because she is doing so well in other areas. We continue to believe this is just going to take time. Unfortunately, this is one of the most critical areas since it inhibits our ability to really communicate with Judi and start focusing on specific issues that she can tell us about.
PT continues to go well. We continue to focus on standing in the "standing frame" and sitting up without support. You can tell this causes her a great deal of discomfort, but she does her best to "suck it up" and get stronger. Sometimes though, she just needs to lay down and take a rest. Her left side is still very weak, but seems to be getting slightly more responsive. We'll keep working on this as well. My admiration for Judi continues to grow as I watch her fight her way through these things.
Eye hand coordination (right side) getting much better. We believe she is having some trouble with her vision field which may be contributing to some of her difficulties. This is not uncommon and often resolves itself by getting her to look away from her "strong view" and the recognition by the brain that she can see over there as well (that may not be the anatomically correct description, but you get the picture).
Swallow study today went OK. Still struggling with regular liquids, but did fine with a cookie (go figure). This will allow her to eat ground meats/veggies instead of pureed and hopefully they will retain a little more flavor. She is not eating as well as I hoped she would, but we believe it will just take time since it has been so long and she had already become a pretty small portion eater as part of her weight loss program prior to the accident. It is kind of a "Catch 22" because if she doesn't eat, we have to feed her through the PEG to ensure she doesn't become malnourished which causes her to be full when the next meal rolls around. I am working with the dietitian to come up with a plan to get her on a path where she can be successful.
We had her follow up doctors visit at MCG yesterday and all was well. CT scan shows things heading in the right direction. She got all of her sutures removed and now we'll be able to let her head heal (it has been through a lot!). We have our next follow up in three months. It dawned on me as we drove from Walton to MCG with her in a wheelchair, this was the first time since her accident that she had been able to sit up and see the world around her. She was taking it all in as we passed many familiar landmarks in the area and just the amount of motion she could view was almost overloading her senses.
Several of you have been to visit and she seems to enjoy it very much. It seems to be good for the visitor(s) as well. Just shoot me an e-mail if you would like to come so I can make sure you don't waste a trip (in rehab, asleep, etc.). If you want to wait until we are back home, that's OK too. I already promised her she could have "girl's night" anytime she wanted when we got back home and catch up on all the news. Thanx again for all of the prayers and support.
Steve
She is still struggling with talking where we can understand her, but she is very vocal and has started laughing at times as well. I can't tell you what it does to my spirits to hear her laugh after all we have been through. I can also tell you that without a doubt, Judi understands at least part of what we are telling her. I won't tell you what I said to her, but it was an old joke between us and she started laughing when I said it. Just another reminder she is in there and ready to come back to us.
She is following commands much better and has become VERY active in exploring things around her. I made a mistake and showed her how to unbuckle her wheel chair seat belt (What was I thinking????). I have to keep a close eye on it now because she can do it pretty quickly. She is also intrigued with different textures and loves to touch everything that comes within reach. These are all good signs.
She continues to have difficulty processing information that requires multiple brain functions and being able to establish a clear method to communicate "yes/no" responses. This has us a little perplexed because she is doing so well in other areas. We continue to believe this is just going to take time. Unfortunately, this is one of the most critical areas since it inhibits our ability to really communicate with Judi and start focusing on specific issues that she can tell us about.
PT continues to go well. We continue to focus on standing in the "standing frame" and sitting up without support. You can tell this causes her a great deal of discomfort, but she does her best to "suck it up" and get stronger. Sometimes though, she just needs to lay down and take a rest. Her left side is still very weak, but seems to be getting slightly more responsive. We'll keep working on this as well. My admiration for Judi continues to grow as I watch her fight her way through these things.
Eye hand coordination (right side) getting much better. We believe she is having some trouble with her vision field which may be contributing to some of her difficulties. This is not uncommon and often resolves itself by getting her to look away from her "strong view" and the recognition by the brain that she can see over there as well (that may not be the anatomically correct description, but you get the picture).
Swallow study today went OK. Still struggling with regular liquids, but did fine with a cookie (go figure). This will allow her to eat ground meats/veggies instead of pureed and hopefully they will retain a little more flavor. She is not eating as well as I hoped she would, but we believe it will just take time since it has been so long and she had already become a pretty small portion eater as part of her weight loss program prior to the accident. It is kind of a "Catch 22" because if she doesn't eat, we have to feed her through the PEG to ensure she doesn't become malnourished which causes her to be full when the next meal rolls around. I am working with the dietitian to come up with a plan to get her on a path where she can be successful.
We had her follow up doctors visit at MCG yesterday and all was well. CT scan shows things heading in the right direction. She got all of her sutures removed and now we'll be able to let her head heal (it has been through a lot!). We have our next follow up in three months. It dawned on me as we drove from Walton to MCG with her in a wheelchair, this was the first time since her accident that she had been able to sit up and see the world around her. She was taking it all in as we passed many familiar landmarks in the area and just the amount of motion she could view was almost overloading her senses.
Several of you have been to visit and she seems to enjoy it very much. It seems to be good for the visitor(s) as well. Just shoot me an e-mail if you would like to come so I can make sure you don't waste a trip (in rehab, asleep, etc.). If you want to wait until we are back home, that's OK too. I already promised her she could have "girl's night" anytime she wanted when we got back home and catch up on all the news. Thanx again for all of the prayers and support.
Steve
Thursday, September 3, 2009
Getting Better Every Day
A quick update on where we are.
Judi continues to do very well in rehab. Her trach is out and the stoma is already closed off and healing well. She is still struggling with talking on a regular basis. She will say a few words very softly, or mouth them, but has yet to master the Judi voice of old. She is very close though and we will continue to push her in this area. I am sure there is a flood ready to come when those gates open!
She is eating well and swallowing normally with the pureed foods and thickened liquids. She will have another swallow study on Wednesday of next week which will hopefully allow her to move into more food consistency options. I will tell you that thickened decaf coffee was NOT a hit. She is holding out for the real McCoy I think.
PT continues to go well and she is getting stronger every day. She is starting to push her wheelchair with her right hand in addition to her right foot. Her left side is still very weak, but we believe that with time she will grow stronger there as well. Her neck is getting much stronger and we continue to work on the "core" muscles to aid in sitting unassisted. We still have a ways to go here, but she is heading in right direction.
OT is going much better. Judi is recognizing colors and working some simple shape puzzles. The eye hand coordination continues to be the focus area since it requires a lot of processing to perform.
We are still not certain about Judi's schedule over the next few weeks. She has done so well that we want to make sure she stays long enough to maximize her benefits, but not too long that she becomes frustrated because she just plain can't do it yet. I still believe we will be home in a week or two to allow her an opportunity to heal and continue to get stronger. She will continue to get therapy there as well. If you would like to come and visit, please send me an e-mail at swilk@knology.net and we will try and coordinate it. She enjoys having visitors, but I need to make sure we don't get too many (she still overloads easily) and that her rehab schedule accommodates it. Once she is home, it will be easier to come and visit.
I have to continually thank everyone for their continued support and prayers. I continue to find it in many unanticipated places. One of my co-workers has a loved one in the room next to Judi and she stopped by and provided me with a tremendous boost with her caring words and prayer. I went to the dentist this week to get some work done that I had put off because of Judi's injury and he took time out of his hectic day to stop and pray with me for our family (Dr. David Reid in case you need a good dentist who is also a good man). I hope this is not inappropriate for our blog, but I am also looking for a wheelchair accessible van. Ideally I would like to lease one for a few months because I am confident Judi will only be in a chair temporarily, but I will buy one if that is the only option. I don't plan on letting Judi stare at the walls. You all know how much we like to go and we are not going to let this stop us. If anyone has one or a possible contact, please send it to my e-mail above. We would greatly appreciate it.
Thanx again,
Steve
Judi continues to do very well in rehab. Her trach is out and the stoma is already closed off and healing well. She is still struggling with talking on a regular basis. She will say a few words very softly, or mouth them, but has yet to master the Judi voice of old. She is very close though and we will continue to push her in this area. I am sure there is a flood ready to come when those gates open!
She is eating well and swallowing normally with the pureed foods and thickened liquids. She will have another swallow study on Wednesday of next week which will hopefully allow her to move into more food consistency options. I will tell you that thickened decaf coffee was NOT a hit. She is holding out for the real McCoy I think.
PT continues to go well and she is getting stronger every day. She is starting to push her wheelchair with her right hand in addition to her right foot. Her left side is still very weak, but we believe that with time she will grow stronger there as well. Her neck is getting much stronger and we continue to work on the "core" muscles to aid in sitting unassisted. We still have a ways to go here, but she is heading in right direction.
OT is going much better. Judi is recognizing colors and working some simple shape puzzles. The eye hand coordination continues to be the focus area since it requires a lot of processing to perform.
We are still not certain about Judi's schedule over the next few weeks. She has done so well that we want to make sure she stays long enough to maximize her benefits, but not too long that she becomes frustrated because she just plain can't do it yet. I still believe we will be home in a week or two to allow her an opportunity to heal and continue to get stronger. She will continue to get therapy there as well. If you would like to come and visit, please send me an e-mail at swilk@knology.net and we will try and coordinate it. She enjoys having visitors, but I need to make sure we don't get too many (she still overloads easily) and that her rehab schedule accommodates it. Once she is home, it will be easier to come and visit.
I have to continually thank everyone for their continued support and prayers. I continue to find it in many unanticipated places. One of my co-workers has a loved one in the room next to Judi and she stopped by and provided me with a tremendous boost with her caring words and prayer. I went to the dentist this week to get some work done that I had put off because of Judi's injury and he took time out of his hectic day to stop and pray with me for our family (Dr. David Reid in case you need a good dentist who is also a good man). I hope this is not inappropriate for our blog, but I am also looking for a wheelchair accessible van. Ideally I would like to lease one for a few months because I am confident Judi will only be in a chair temporarily, but I will buy one if that is the only option. I don't plan on letting Judi stare at the walls. You all know how much we like to go and we are not going to let this stop us. If anyone has one or a possible contact, please send it to my e-mail above. We would greatly appreciate it.
Thanx again,
Steve
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