Hello, sorry it has been awhile since I posted. I was really hoping Brock would take over this job but he hasn't been up to it yet, but I do believe the day is coming very soon. Being back to real life means not sitting in a room with anything better to do than blog, so I have neglected making time to keep you posted. But, no news is also known as good news . . .
Tuesday night when I got home from work I had my usual greeting of very happy puppies at the door, but when I took a few steps inside I realized there was someone walking towards me to greet me and it was BROCK!! No walker either. He was holding on to walls and chairs but also walking steps along the way. I was very excited to see this. Being greeted with a hug and kiss from my walking son was a very happy moment.
He still continues the therapies three days a week. He missed for the first time Friday because of nausea, but I think that has to do with a medicine change and hopefully that will resolve quickly. He was better in the late afternoon. He actually later slipped away to spend time with a dear friend this weekend. His brother took him Friday night and he will not return until Sunday evening. Other than a quick text that they arrived safely I haven't heard from either one, so again no news is good news.
This week Brock has to decide if he can try to return to Chicago next week for course work or not. Thankfully a family has fought our insurance battle for us and on October 9, 2009 (great timing for us) a new law called Michelle's Law became a national law. It states that a full time student that is struck with an illness or handicap has up to one year to return to university and can not be dropped from a parents insurance because of not being a full time student. This is a relief and I am grateful to the family that fought the fight that benefits us. Brock's therapists still recommend up to even 6 more weeks of OT therapy and at least another 2 to 4 weeks for physical therapy. Although he gets stronger everyday he still has a way to go. Knowing that we will not have insurance issues will help make a decision not to rush back to full time status easier.
His small trip this weekend is a way for him to judge how he will function in the big old world out there. It has really been amazing to realize so many things in life are not handicapped friendly. His endurance also is an issue as he tires very quickly. I know he wants to return but I also know he is wise enough to know if he will have the stamina to survive. A sabbatical until he is 100% just might be in order. Of course his providers suggest he continue his therapy and remain in safe environments for just a few more weeks at least (he is still very, very wobbly, and since he is not a weeble, he does fall down). Brock of course will make the final decision and we will support him whatever that is.
The typing is getting easier, I expect him to blog to all of you soon.
Again, thank you for your thoughts and prayers. We value these greatly.
Love and peace,
Denah
☮
Saturday, January 23, 2010
Monday, January 18, 2010
Life goes on . . . . . 11/22/2009-1/18/2009 . . . . . (6 symptomatic days, 42 inpatient days, 10 days outpatient rehab)
We had a decent weekend. He is stuck with the parents, but we really are not all that bad. We at least have some interesting friends to help entertain him. We managed to eat out a couple of times over the weekend. Each time he gets a little braver and stronger and by Saturday night he went with his walker only!
He has not used his chair at home for the past two days either. If he is really active though, like on his rehab days, he gets fatigued and uses the chair at home. If he has to walk a long distance to get inside somewhere then he has to use the chair, once he is fatigued then he can not control his gait or maintain his strength to stand.
We can get him in and out of the house with just one of us assisting now :O) It is slow going and we have to have the walker and rails on the steps but we make it. He can not pull himself into the car but one good push and we are set to go.
His fine motor skills still have a long way to go. He is trying very hard to get those stronger but they are the most frustrating. He still has a lot of the numbness and tingling in his limbs and face also. The facial neuralgia has really been irritating to him the past week.
He misses his friends so much, keep remembering him in your thoughts, prayers, cards, calls, texts. He may not respond but he knows your with him.
xo
denah
He has not used his chair at home for the past two days either. If he is really active though, like on his rehab days, he gets fatigued and uses the chair at home. If he has to walk a long distance to get inside somewhere then he has to use the chair, once he is fatigued then he can not control his gait or maintain his strength to stand.
We can get him in and out of the house with just one of us assisting now :O) It is slow going and we have to have the walker and rails on the steps but we make it. He can not pull himself into the car but one good push and we are set to go.
His fine motor skills still have a long way to go. He is trying very hard to get those stronger but they are the most frustrating. He still has a lot of the numbness and tingling in his limbs and face also. The facial neuralgia has really been irritating to him the past week.
He misses his friends so much, keep remembering him in your thoughts, prayers, cards, calls, texts. He may not respond but he knows your with him.
xo
denah
Wednesday, January 13, 2010
Update.
Well we have been home for 5 days now. He has adjusted well and we have gotten the house pretty much arranged for the chair and things. It is harder to post daily now that I am working and keeping regular daily things going again. Things have gotten so far behind at the Perry household. I will try to update at least two or three times a week though. Hopefully one day soon Brock can post for you all.
He is not all together in love with outpatient therapy, he misses his inpatient therapists. The progress seems slower because he is only doing each discipline once three times a week instead of twice daily six days a week.
He has not felt well today. That makes it even more frustrating to him.
His facial expressions are returning, his smile is even, but there is a facial and neck neuropathy pain that is irritating to him. His left eye still doesn't ever completely close yet. His joints (hips and knees mostly) ache.
He can stand for a few minutes, he can walk about 200 feet with the walker. He can not write yet and typing and texting still is very frustrating.
It is difficult to get him in and out of our house but once he is off the deck getting him in the car has become much easier. Car rides seem to make him car sick each time.
The PT goal is for him to be walking with a cane in four weeks.
Keep him in his prayers, he is frustrated and wishes he could be with friends.
Love
denah
PS . . . Congrats to Angie and her family for new little Lea!
He is not all together in love with outpatient therapy, he misses his inpatient therapists. The progress seems slower because he is only doing each discipline once three times a week instead of twice daily six days a week.
He has not felt well today. That makes it even more frustrating to him.
His facial expressions are returning, his smile is even, but there is a facial and neck neuropathy pain that is irritating to him. His left eye still doesn't ever completely close yet. His joints (hips and knees mostly) ache.
He can stand for a few minutes, he can walk about 200 feet with the walker. He can not write yet and typing and texting still is very frustrating.
It is difficult to get him in and out of our house but once he is off the deck getting him in the car has become much easier. Car rides seem to make him car sick each time.
The PT goal is for him to be walking with a cane in four weeks.
Keep him in his prayers, he is frustrated and wishes he could be with friends.
Love
denah
PS . . . Congrats to Angie and her family for new little Lea!
Saturday, January 9, 2010
Day 43 of GBS, Day 1 at home.
Today was good.
Brock slept in until 10:30 in a queen sized bed, with a puppy. No one took vitals. No one asked him to rate his pain. No one delivered fresh glasses of ice water. No one emptied the trash in the middle of the night. No one pushed his muscles to the limit. No manipulatives. No claw. No weights. No cycle. No parallel bars.
But, he has to admit he loved those people who pushed him to get better.
He did walk with the walker, walked up and down the basement stairs to take a shower (13 stairs, with assist of two). We realized we didn't have a shower curtain that was water resistant, we only have one for pretty show. No one has taken a shower in that bathroom for over 20 years. He did very well going down and up. His motivation? We went to La Carreta for supper and Margaritas! We meet the Lamb family there and had a wonderful couple of hours out being normal.
Today was the first time Brock has put on shoes for 6 weeks! Or pants (he has lived in shorts).
Tomorrow we might venture to the movies.
I have taken a VHP day on Monday so we can orientate to outpatient therapy and get a few things caught up from our weeks of being absent from normal daily living. I will keep you updated on his progress.
I know he is glad to be out of the hospital, but the truth is he just wants to walk and to have his life back. We are so excited to be home, but I forget he just wants to be a normal 22 year old graduate student who calls his parents/family occasionally to just say hi. Keep praying for strength and endurance for him; he has a life he wants back.
We appreciate all who have helped us along this path. I believe things happen in our lives for a reason, now we all just need to figure out what we are to learn from this, what we have the opportunity to change, what we need to continue, and who we need to love. The support and love our family has received is very much appreciated and heartfelt. Thank you.
Love.
Denah
Brock slept in until 10:30 in a queen sized bed, with a puppy. No one took vitals. No one asked him to rate his pain. No one delivered fresh glasses of ice water. No one emptied the trash in the middle of the night. No one pushed his muscles to the limit. No manipulatives. No claw. No weights. No cycle. No parallel bars.
But, he has to admit he loved those people who pushed him to get better.
He did walk with the walker, walked up and down the basement stairs to take a shower (13 stairs, with assist of two). We realized we didn't have a shower curtain that was water resistant, we only have one for pretty show. No one has taken a shower in that bathroom for over 20 years. He did very well going down and up. His motivation? We went to La Carreta for supper and Margaritas! We meet the Lamb family there and had a wonderful couple of hours out being normal.
Today was the first time Brock has put on shoes for 6 weeks! Or pants (he has lived in shorts).
Tomorrow we might venture to the movies.
I have taken a VHP day on Monday so we can orientate to outpatient therapy and get a few things caught up from our weeks of being absent from normal daily living. I will keep you updated on his progress.
I know he is glad to be out of the hospital, but the truth is he just wants to walk and to have his life back. We are so excited to be home, but I forget he just wants to be a normal 22 year old graduate student who calls his parents/family occasionally to just say hi. Keep praying for strength and endurance for him; he has a life he wants back.
We appreciate all who have helped us along this path. I believe things happen in our lives for a reason, now we all just need to figure out what we are to learn from this, what we have the opportunity to change, what we need to continue, and who we need to love. The support and love our family has received is very much appreciated and heartfelt. Thank you.
Love.
Denah
Friday, January 8, 2010
Day 42: The End (of inpatient).
Elvis has left the building.
After a morning of OT and PT, lunch with the wonderful caring nurses and therapists, and an afternoon of OT and PT (he took on the stairs), he was DISCHARGED!
They tried to make him stay in rehab and he said, no - no - no. ♬♬
We are home and happy. We had to take the bathroom door off the hinges to get the wheelchair through, the commode extension doesn't fit right so we are taking it back, but other than that the days at home are looking good. There is a small video of Brock comfy in chair with dog. Life seems pretty good right now.
His first outpatient rehab is Monday at 1:00, a new stage of this adventure begins. We will keep you posted how this progresses and what the immediate future for a return to grad school holds . . .
Much love,
The Perry's
PS . . . Angie, I can not remember how to spell your last name so you'll have to add me to facebook ;O)
After a morning of OT and PT, lunch with the wonderful caring nurses and therapists, and an afternoon of OT and PT (he took on the stairs), he was DISCHARGED!
They tried to make him stay in rehab and he said, no - no - no. ♬♬
We are home and happy. We had to take the bathroom door off the hinges to get the wheelchair through, the commode extension doesn't fit right so we are taking it back, but other than that the days at home are looking good. There is a small video of Brock comfy in chair with dog. Life seems pretty good right now.
His first outpatient rehab is Monday at 1:00, a new stage of this adventure begins. We will keep you posted how this progresses and what the immediate future for a return to grad school holds . . .
Much love,
The Perry's
PS . . . Angie, I can not remember how to spell your last name so you'll have to add me to facebook ;O)
Wednesday, January 6, 2010
Day 40
I attended PT today to learn how to walk with him with the walker. The last time I saw him do this was last Saturday and when I helped today I was pleasantly pleased. He just keeps getting stronger. He is working so hard!!
I picked up the equipment we need at the house to make his daily activities possible (shower extension chair, commode lift & grab bars, gait belt, transfer chair, walker supplies). Hopefully it won't be long until we are donating these items to some place that will find a needed home for them, just not our home!
We are watching the beginning shows of Glee. I had to buy them off iTunes because they are no longer on Hulu but I don't care, I am addicted, you just have to laugh. He found an episode of Dexter that somehow didn't download and he was thrilled, one more to watch. He loves that show.
Only two more nights in this hospital and home bound. I can not express to you how excited everyone is, especially Brock.
I work 12 hours so I am not sure how much I will post tomorrow but I will keep you updated on all the activities on Friday for sure. Snow or no snow, we are going home!!!
Keep him in your thoughts and prayers
love
dp
I picked up the equipment we need at the house to make his daily activities possible (shower extension chair, commode lift & grab bars, gait belt, transfer chair, walker supplies). Hopefully it won't be long until we are donating these items to some place that will find a needed home for them, just not our home!
We are watching the beginning shows of Glee. I had to buy them off iTunes because they are no longer on Hulu but I don't care, I am addicted, you just have to laugh. He found an episode of Dexter that somehow didn't download and he was thrilled, one more to watch. He loves that show.
Only two more nights in this hospital and home bound. I can not express to you how excited everyone is, especially Brock.
I work 12 hours so I am not sure how much I will post tomorrow but I will keep you updated on all the activities on Friday for sure. Snow or no snow, we are going home!!!
Keep him in your thoughts and prayers
love
dp
Tuesday, January 5, 2010
Monday, January 4, 2010
It is a Monday . . . Day 38 inpatient, day 21 on rehab.
Back to work today. His usual rotations, speech, OT, PT in the morning and then he did it all over again in the afternoon. He is sore tonight he says. A day off always cost you something :O)
He made a German chocolate cake with OT today. The only thing he said to me about it was with a bit of a snarl "it was from a box" and those who really know Brock know that he would just whip that up from scratch if he had his way. It was good exercise for those fine motor skills though and even if it was from a box it was a good dessert after work on my part.
I asked Brock if he had anything he wanted me to put on here: "Tell them I am working on getting much stronger, trying to get done what I can before I go home, that I am tired of being here, and that I am just ready to go home."
We have our family meeting to decide his future tomorrow. He said tonight that staying until Friday is do-able and then HOME!! We will see if that is agreeable to everyone and then let you know.
xo
dp
He made a German chocolate cake with OT today. The only thing he said to me about it was with a bit of a snarl "it was from a box" and those who really know Brock know that he would just whip that up from scratch if he had his way. It was good exercise for those fine motor skills though and even if it was from a box it was a good dessert after work on my part.
I asked Brock if he had anything he wanted me to put on here: "Tell them I am working on getting much stronger, trying to get done what I can before I go home, that I am tired of being here, and that I am just ready to go home."
We have our family meeting to decide his future tomorrow. He said tonight that staying until Friday is do-able and then HOME!! We will see if that is agreeable to everyone and then let you know.
xo
dp
Sunday, January 3, 2010
A day at home. Night 37 inpatient.
He has been home today for his 8 hour pass. We always stretch it into about 10 or more hours!
There were visitors.
There were cookies.
There was pizza.
There were snuggles and naps.
There was a peacefulness to just being home.
He managed to get around and transfer from chair to couch well today. He has managed his way around the kitchen for food and made himself comfortable in the living room. He has a new wheelchair coming this week and he is going to practice on rehab with it so he is able to use it well once home. We are learning a few things we need (like straws, he still can not drink from a cup, and furniture we need to move) to make home life comfortable and accommodating for daily living activities.
It is exciting to think that the next time we make this trip it is for good. No more returns to overnight stays at the hospital. He is hoping that happens possibly Friday.
love to all,
denah
There were visitors.
There were cookies.
There was pizza.
There were snuggles and naps.
There was a peacefulness to just being home.
He managed to get around and transfer from chair to couch well today. He has managed his way around the kitchen for food and made himself comfortable in the living room. He has a new wheelchair coming this week and he is going to practice on rehab with it so he is able to use it well once home. We are learning a few things we need (like straws, he still can not drink from a cup, and furniture we need to move) to make home life comfortable and accommodating for daily living activities.
It is exciting to think that the next time we make this trip it is for good. No more returns to overnight stays at the hospital. He is hoping that happens possibly Friday.
love to all,
denah
Saturday, January 2, 2010
Today's news.
PT and OT this morning. He felt awful by the time these were finally over. He decided he needed a nap and didn't wake until 3:30 this afternoon. He worked really hard all week and made a whole lot of progress. He is worn out.
He is going to take a day pass and go home tomorrow.
I would imagine this next week will be his last inpatient week. He did so well this week that I hope after one more week they will send him out with just 3 days a week outpatient rehab. Maybe after all week we will pack everything and head out Saturday afternoon?
xo
denah
He is going to take a day pass and go home tomorrow.
I would imagine this next week will be his last inpatient week. He did so well this week that I hope after one more week they will send him out with just 3 days a week outpatient rehab. Maybe after all week we will pack everything and head out Saturday afternoon?
xo
denah
Friday, January 1, 2010
Happy New Year
He is just finishing his therapies for the day and it is only 1:30. All the therapist just want to go home today, but so does Brock!
They worked him really hard one right after the other, he is worn out.
He will have the same thing happen tomorrow too.
It does pay off, he took a step up today, wobbly and not perfect but he did it . . . watch the video. He also put his socks on by himself!
Ren, Mike, and Autumn left early evening yesterday and he was sad to see them go. He misses his life so much. He misses his Ashram family and Anderson friends very, very much. You are all such wonderful people and I am so thankful for all of you. I know he loves his family very much but I also know what a huge place in his heart all of you have. It is comforting to know he is loved and loves so much. I want him back with all of you ASAP.
For the New Years Eve he was stuck with the parentals and the Houchins but we had some fun. We had Ireland Chicken Place take out that was delicious and we played Euchre. Brock can hold and play his own cards but he could not shuffle or deal. He and I were partners, we won. Everyone left around 10:30 and it was just the two of us bringing in the new year; we watched the ball drop and then dozed off to dream of a better year. This past year we lost something forever but the rest will only improve and go away, so a better year is to be had.
Not sure what all the weekend will hold but we will keep you updated. He can go home Sunday for another 8 hour pass but he has not decided if he wants to do that or not. As much as he loves being home, it is an exhausting trip and he just has to come back anyway so he might just stay put until he can go home for good.
May God bless you all of the days of your life,
The Perry's.
They worked him really hard one right after the other, he is worn out.
He will have the same thing happen tomorrow too.
It does pay off, he took a step up today, wobbly and not perfect but he did it . . . watch the video. He also put his socks on by himself!
Ren, Mike, and Autumn left early evening yesterday and he was sad to see them go. He misses his life so much. He misses his Ashram family and Anderson friends very, very much. You are all such wonderful people and I am so thankful for all of you. I know he loves his family very much but I also know what a huge place in his heart all of you have. It is comforting to know he is loved and loves so much. I want him back with all of you ASAP.
For the New Years Eve he was stuck with the parentals and the Houchins but we had some fun. We had Ireland Chicken Place take out that was delicious and we played Euchre. Brock can hold and play his own cards but he could not shuffle or deal. He and I were partners, we won. Everyone left around 10:30 and it was just the two of us bringing in the new year; we watched the ball drop and then dozed off to dream of a better year. This past year we lost something forever but the rest will only improve and go away, so a better year is to be had.
Not sure what all the weekend will hold but we will keep you updated. He can go home Sunday for another 8 hour pass but he has not decided if he wants to do that or not. As much as he loves being home, it is an exhausting trip and he just has to come back anyway so he might just stay put until he can go home for good.
May God bless you all of the days of your life,
The Perry's.
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