I have been meaning to write at the request of others and after several days of inches of rain, I think it's time. You know I never really liked to write and even when I logged on it said I had done 100 posts. Think of that, an even 100 things to say after such a journey as Rick and I have been on. So I guess for 101 we'll try and catch you up.
I have a hard time believing it has already been 6 months since Dustin passed away. Sometimes it seems so surreal, like last year was this weird dream and it really didn't happen. All our kids go off to work or school or other things and you don't hear from them for ages it seems. But then I have to remind myself that it is real. Nerina and I were talking not too long ago and we both seemed to think Dustin might come walking in at any time. First of all you would have to know Dustin. He always did somewhat odd, interesting things and it might even be like him to come in and say something like, "well that was interesting- I played being a quad on a vent and having all these medical people and boy I have some things to write about for my next film or TV show.....but then again I come back and know that if God has paper and pen, he is up there writing about all the interesting things happening in heaven.
Our life continues on with farm animals, 2 new goats, our 2 dogs and Sandy our service dog who is now 10 months old. She is learning a lot in spite of us. I am certainly not the regimented trainer but she has gotten to go and do a lot of things and learns along the way. She is able to open drawers and cabinets, pull dogs shut, working on cutting on lights and many basics. She is a delight but some times a handful. I am glad she is a dog as I can put her in her kennel when
I 've had enough. She recently got to fly to Colorado and she did awesome on the plane even though it was packed and Rick and I were in a center and window seat. It seemed like she just kinda knew what to do and tucked her chubby body under the seat and sat there for 3 hours.
About one 3 weeks ago we had a memorial service for Dustin and Forrest at our church, Pleasant Valley. It was somewhat unusual as Pastor Anita opened up, I got to to play a lot of music that had really supported me and told the story of our year as I narrated about what each song had meant. I think it lasted about 90 minutes and we did it on a Wednesday afternoon after shutting down Be in Health. We hope it was an encouragement to all who have lost loved ones or just plain loss of what should have been a better life. The goal is we must move on and finish the race.
I'll share a bit about a bible study on grief that I did as a result of trying to figure out what pleases God in it all. I went first to the Old Testament and basically found that the mourning time was either 7 or 30 days. I then went to the New Testament thinking this is where I need to focus. Boy was I surprised. I really found almost nothing about sorrow or grieving or sadness.
What I did find was in:
Matt. 19:22 which showed that being sorrowful was unfruitful
John 16:1-6 showed that if we don't understand resurrection and eternal life that we will be sorrowful
1Thes 4:13-14 (my favorite) that if we are ignorant concerning death, that we will not have hope and be sorrowful (the world's way)
Is 25:7-8 that the Lord will wipe away all tears and have victory over death
Jn 16:20 - that our sorrow will turn to joy
Matt - in the Beatitudes = "Blessed be those that mourn for they shall be comforted"
That was a really neat one because when you look up mourn it means to grieve but comes from a root word "to be strengthened". At Be in Health we teach about ungodly grief. This showed me that godly grief actually strengthens you. I learned this after a particular night where I had cried and really lamented to Rick about losing my sons. He comforted and prayed for me and the next day I felt great. When I studied this, I realized what had happened. You don't deny the feelings, you vent them, pray and the Lord carries you and strengthens you to go on.
The last scripture was in Luke where the disciples were walking and being so sorrowful because Jesus had died. Jesus had joined them on the road and His question to them was "Why are you so sad?" They were like "haven't you heard, Jesus has been crucified .... Why are we so sad at death Jesus was saying, when we get to live eternally with Him - how awesome do you think this is for Jesus to question any type of sadness after the type of death He had.
I have been comforted throughout the past 6 months. I have my moments, but I just try to allow God to use me as a reflection of Him. We have poured out energy and grief into helping others and you can look at the website for the results -
www.creativefootage.com
We are excited to be able to help others who are in wheelchairs, not only in Sanford FL, the house we had bought for Dustin) but also in one of our 1885 authentic log cabins. Rick is finishing the bathroom and it turned out great. We also had our favorite builder Roger and crew build 340 feet of ramp down to the lake. We are working on places to advertise it and are starting with the Paralyzed Veterans of America magazine as well as a few others. We really want others to enjoy having a "non intimidating place to stay.
My friend, Stacey has started on the book which we hope at some point will become a movie. She has worked on several chapters and she has really captured the heart of it. There have been several interviews with some key people and we hope that it will be an inspiration to many.
We want to be an open book to those who have experienced loss. Genesis 50:20 says what satan meant for harm, God can turn to good. We continue to ask Him as we patiently wait what we are to do with the season that we went through and those to come.
We hope everyone is doing well. We are looking forward to springtime!!
love and hugs to all
mary pat
Friday, March 12, 2010
Thursday, October 15, 2009
Dustin's Short Film
Dustin had started his own production company. Here is a sample film
clip that he developed. Of course he is the one in the black vest that he had in the Air Force. His other friend had the black car and Lenny, the editor of his production company, is the skate boarder.
Have fun with Dustin.
clip that he developed. Of course he is the one in the black vest that he had in the Air Force. His other friend had the black car and Lenny, the editor of his production company, is the skate boarder.
Have fun with Dustin.
Wednesday, October 14, 2009
A Memorial Service designed by God
It has been a little over a week since the memorial service which was on a beautiful Saturday at the beach. Rick and I had gone to Naples on Tues and stayed in a house 2 doors down from where Dustin spent his Florida life. I roller bladed like old times around the neighborhood and that did me good knowing I could still do it! My brother and sister in law from Roanoke VA came and stayed in the house with us and that was a real delight. On Friday, Pat, the nurse, had agreed to make Jamaican Jerk chicken for everyone and I think we fed about 18 people including one of Rick's sisters, nephews, kids, Nerina and her family and our daughter, husband and 2 precious granddaughters. It was a delight in a hard time. I played in the pool with Pat's 2 granddaughters as well as ours. Life is a blessing and I was/am going to participate in it no matter what.
Saturday was extremely special. We had such favor all around in a place that favor isn't a recognizable word. The service was at a state park that charges $6 per car and even $2 if you walk in. We had decided that we wanted to pay for all those coming to the service and had been told to leave a check at the gate so we could tally up at the end of the evening. There was the motorcycle veteran's honor guard and I had asked earlier if perhaps they could waive the fee for them since they were only coming to line the walkway at the beginning of the service each holding the American flag in military stance. "Absolutely not" they said so that was that.
When we went to leave our check on Sat. morning the guy in the booth said, "between you and me it has all already been taken care of". We assumed someone else had offered to pay as a gift and were grateful. We checked around and it seems as though the man at the booth spent 10 years in the Army Special Forces and just let everybody in. When the service was over, they normally kick everyone out as soon as the sun sets. However, he got other folks out and then came on the beach where we were, took his hat off and respectfully sat on his 4 wheeler till well after sunset. In spite of hard times, God still sends His favor and we openly thank Him for it.
We opened with a beautiful version of "Amazing Grace" by my favorite Darlene Zschech from Hillsong and the tears were many.
The service began around 4:30 with an wonderful Episcopalian priest who wore shorts and a bright Hawaiian shirt. After the song he got the service started with some fun informal "ice breakers" ,if you will, to set the stage that this was not going to be a morose atmosphere but one of a celebration of Dustin's short but precious life.
He opened with prayer and then we played a beautiful documentary of pictures of Dustin's life that was put together with much love by Nerina. After this, we opened the floor for anyone to come up and talk about Dustin. Nerina's dad opened and then one after another got up and spoke. We were so blessed that probably 10 of his friends from Fullsail came and shared fun times that they had had with Dustin, tears and their hilarious things that made Dustin....well Dustin. It was never anything anyone can put their finger on, put it was just Dustin. He made you wonder, he made you mad, he made you laugh, he made you think, and then he would watch your reaction....always for a line or "footage". Dustin was fun. He used to go around and say in his best fun voice a line from a movie that would always make me laugh. It goes like this:
"We're having fun cause that's what we do. If you ever meet us, you will have fun to"!
As long as I live I will never forget him saying this. Actually I have stolen it from him for my own life goal that no matter what, I am not going to get down, but try to find the joy in everything. I think he must have done this as well, even in his hardest moments. Some part of this would always shine through him.
Many others talked and of course Nerina got up and shared from her heart the "thing
that she and Dustin had that "most people never know in a lifetime". I can understand that statement at this time of my life because I have found it in my relationship with Rick. I think it is a precious gift from God and I agree many never have it or create it by pure unconditional love which is what they seemed to have. I am grateful that my son knew this kind of love even if only for a short time. It is priceless to me and I thank God for Nerina and her family.
We then played the song "It is Well with my Soul" which I believed Dustin would want us to know as he danced (no whoops he hated to dance) , how about long boarding, in the heavens.
After this we played a very fun, bluesy, New Orleans instrumental style of Amazing Grace that I think Dustin would have really liked (he always like the song "Amazing Grace" anyway.
We then shared some great food that my special friends from Naples set up and served. The special feature in the food arena was the most gorgeous, homemade carrot cake that had the film board thing in the darkest chocolate you have ever seen, and "Creative Footage- Dustin Lewis Bowman - 3/26/85 to 9/15/09 written on it.
While we were eating, Nerina showed a film production from Dustin's production company (which included some of the kids there) that was a lot of fun. I am going to try and see if there is anyway I can post the photo documentary or the film so that all of you who have so faithfully followed can enjoy "knowing" Dustin.
We then went down to the beach for sunset. I shared a most beautiful poem that was sent to me that seemed like it had been written from Dustin's perspective of this past year. We then had some nice quiet time with some candles that Nerina's, dad's sister from Miami made that were very especially made for Dustin and the service. The sunset was beautiful and dramatic with a unique cloud and light show. If you turned away from the beach , on your other side was the rising of the harvest full moon. Again , a memorial service planned by God.
I want to close this post with the poem that was read on the beach. Please check back to keep up with the accessible house, "Creative Footage" as well as they hopes of putting this story in, of course what else, but a film format. The Veterans Hospital in Tampa and Dustin's Alma mater, Fullsail have graciously agreed to help with the project.
Dustin - you are greatly loved and missed, but the little smile and the fun that you imparted to all that knew you is still alive in us. Thanks for a lifetime for that.
love,
Mom
May I go now?
Do you think the time is right?
May I say goodbye to pain filled days
And endless lonely night?I've lived my life and done my best
An example I've tried to be.
So can I take that step beyond
and set my spirit free?
I didn't want to go at first
I fought with all my might
But something seems to draw me now
To a warm and loving light.
I want to go
I really do
It's difficult to stay
But I will try as best I can
To live just one more day.
To give you time to care for me
And share your love and fears.
I know you're sad and afraid,
Because I see your tears.
I'll not be far,
I promise that, and hope you'll always know
That my spirit will be close to you,
Wherever you may go
Thank you for loving me.
You know I love you too,
That's why it's so hard to say good-bye
And end this life with you.
So hold me now, just one more time
And let me hear you say,
Because you care so much for me,
You'll let me go today.
--Susan A. Jackson
Dustin - we release you to play in the heavens. I pray that everyone knows the Lord so that they can join him for eternity. We will miss him for this short life on earth but look forward to having fun forever with him. One thing about the poem that we learned at the service is that Dustin never liked good-byes. It was always "see ya later".
So Dustin..........we'll see you later!!
Saturday was extremely special. We had such favor all around in a place that favor isn't a recognizable word. The service was at a state park that charges $6 per car and even $2 if you walk in. We had decided that we wanted to pay for all those coming to the service and had been told to leave a check at the gate so we could tally up at the end of the evening. There was the motorcycle veteran's honor guard and I had asked earlier if perhaps they could waive the fee for them since they were only coming to line the walkway at the beginning of the service each holding the American flag in military stance. "Absolutely not" they said so that was that.
When we went to leave our check on Sat. morning the guy in the booth said, "between you and me it has all already been taken care of". We assumed someone else had offered to pay as a gift and were grateful. We checked around and it seems as though the man at the booth spent 10 years in the Army Special Forces and just let everybody in. When the service was over, they normally kick everyone out as soon as the sun sets. However, he got other folks out and then came on the beach where we were, took his hat off and respectfully sat on his 4 wheeler till well after sunset. In spite of hard times, God still sends His favor and we openly thank Him for it.
We opened with a beautiful version of "Amazing Grace" by my favorite Darlene Zschech from Hillsong and the tears were many.
The service began around 4:30 with an wonderful Episcopalian priest who wore shorts and a bright Hawaiian shirt. After the song he got the service started with some fun informal "ice breakers" ,if you will, to set the stage that this was not going to be a morose atmosphere but one of a celebration of Dustin's short but precious life.
He opened with prayer and then we played a beautiful documentary of pictures of Dustin's life that was put together with much love by Nerina. After this, we opened the floor for anyone to come up and talk about Dustin. Nerina's dad opened and then one after another got up and spoke. We were so blessed that probably 10 of his friends from Fullsail came and shared fun times that they had had with Dustin, tears and their hilarious things that made Dustin....well Dustin. It was never anything anyone can put their finger on, put it was just Dustin. He made you wonder, he made you mad, he made you laugh, he made you think, and then he would watch your reaction....always for a line or "footage". Dustin was fun. He used to go around and say in his best fun voice a line from a movie that would always make me laugh. It goes like this:
"We're having fun cause that's what we do. If you ever meet us, you will have fun to"!
As long as I live I will never forget him saying this. Actually I have stolen it from him for my own life goal that no matter what, I am not going to get down, but try to find the joy in everything. I think he must have done this as well, even in his hardest moments. Some part of this would always shine through him.
Many others talked and of course Nerina got up and shared from her heart the "thing
that she and Dustin had that "most people never know in a lifetime". I can understand that statement at this time of my life because I have found it in my relationship with Rick. I think it is a precious gift from God and I agree many never have it or create it by pure unconditional love which is what they seemed to have. I am grateful that my son knew this kind of love even if only for a short time. It is priceless to me and I thank God for Nerina and her family.
We then played the song "It is Well with my Soul" which I believed Dustin would want us to know as he danced (no whoops he hated to dance) , how about long boarding, in the heavens.
After this we played a very fun, bluesy, New Orleans instrumental style of Amazing Grace that I think Dustin would have really liked (he always like the song "Amazing Grace" anyway.
We then shared some great food that my special friends from Naples set up and served. The special feature in the food arena was the most gorgeous, homemade carrot cake that had the film board thing in the darkest chocolate you have ever seen, and "Creative Footage- Dustin Lewis Bowman - 3/26/85 to 9/15/09 written on it.
While we were eating, Nerina showed a film production from Dustin's production company (which included some of the kids there) that was a lot of fun. I am going to try and see if there is anyway I can post the photo documentary or the film so that all of you who have so faithfully followed can enjoy "knowing" Dustin.
We then went down to the beach for sunset. I shared a most beautiful poem that was sent to me that seemed like it had been written from Dustin's perspective of this past year. We then had some nice quiet time with some candles that Nerina's, dad's sister from Miami made that were very especially made for Dustin and the service. The sunset was beautiful and dramatic with a unique cloud and light show. If you turned away from the beach , on your other side was the rising of the harvest full moon. Again , a memorial service planned by God.
I want to close this post with the poem that was read on the beach. Please check back to keep up with the accessible house, "Creative Footage" as well as they hopes of putting this story in, of course what else, but a film format. The Veterans Hospital in Tampa and Dustin's Alma mater, Fullsail have graciously agreed to help with the project.
Dustin - you are greatly loved and missed, but the little smile and the fun that you imparted to all that knew you is still alive in us. Thanks for a lifetime for that.
love,
Mom
May I go now?
Do you think the time is right?
May I say goodbye to pain filled days
And endless lonely night?I've lived my life and done my best
An example I've tried to be.
So can I take that step beyond
and set my spirit free?
I didn't want to go at first
I fought with all my might
But something seems to draw me now
To a warm and loving light.
I want to go
I really do
It's difficult to stay
But I will try as best I can
To live just one more day.
To give you time to care for me
And share your love and fears.
I know you're sad and afraid,
Because I see your tears.
I'll not be far,
I promise that, and hope you'll always know
That my spirit will be close to you,
Wherever you may go
Thank you for loving me.
You know I love you too,
That's why it's so hard to say good-bye
And end this life with you.
So hold me now, just one more time
And let me hear you say,
Because you care so much for me,
You'll let me go today.
--Susan A. Jackson
Dustin - we release you to play in the heavens. I pray that everyone knows the Lord so that they can join him for eternity. We will miss him for this short life on earth but look forward to having fun forever with him. One thing about the poem that we learned at the service is that Dustin never liked good-byes. It was always "see ya later".
So Dustin..........we'll see you later!!
Tuesday, September 15, 2009
A Peaceful ending
Dustin Lewis Bowman passed away peacefully on Sept. 15, at 5:06am. He had been found as a code blue on Friday which apparently triggered seizures which never really stopped despite anti-seizure drugs at amounts they had never used. They put him in a medical coma as well trying to get the brain to rest but it never seemed to stop.
He gave a good hard fight in the end as he has done his whole life but especially the past year. Not really ever complaining about the paralysis, but wanting to use that creative mind to write he has instead written something profound in our hearts. Mostly we didn't see it ,but with his passing ,we realized how much his quirky personality and love to "get a line" for use in possible writing had written deeply in the tablets of our heart.
You can't even imagine how much this occurred until we saw doctors, therapists, aides, etc spending time with us, laughing, crying, talking about how Dustin had effected them. Who would have thought when we would hear Dustin's disgruntles with staff , his rough words in their direction etc that even then, they loved him for his real heart below which they experienced for the past 7 months. They knew under those layers of crustiness that there was a lot of fun, trying to see if he could get a rise out of them for a possible movie line or to challenge them to see if they would stand up to him which he greatly admired.
With his passing, we will continue to carry the vision to help those with spinal cord injuries live a in a home environment with some unique physical therapy at Step it Up. We have named the home we had bought for Dustin, "Creative Footage". Yep, somewhat a weird name but very descriptive. Dustin was all about creating stories and his beloved film career that never quite got to get started despite graduating from Fullsail University. It was a little less than a year ago as he was traveling to Los Angeles that he had his car wreck that put a hold on his career. instead he created "footage" in his life at the Neurotrauma unit in Albequerque, Augusta VA and finally at the polytrauma unit at the Tampa VA. Of course "footage" also is our hope for those with spinal injuries to get up and walk in their own very special way.
We want to salute everyone on the medical team that has gone above and beyond to give Dustin the best care. Tampa VA has won a special place in my heart with their care for our Veterans. There is a sign when you go in the front door that says "The price of freedom is visible here". I have never seen such people with a heart to serve these men and women and a heart to continue their knowledge in how to best care for these soldiers.
They will be doing a complete medical exam from the time he entered in to the Air Force to early this morning. The combined effects of a spinal cord injury, brain injury and the resulting seizures is a very new phenomenon in how to care for it. They are consistently trying to learn from each and every medical opportunity and we are grateful that Dustin's passing will be learned from to help others. Many of our soldiers coming back from the war have these kind of injuries and much needs to be understood of the synergistic effects of these issues.
Rick and I want to thank you for each and every prayer. Don't every think for one minute that God did not hear them. Do remember however His plans and ways are higher than ours. Do not think for one minute that I understand His plan, only trust Him in all things. If you think about it, Dustin's abbreviated life has changed us all in some profound way. I only ask that you look at what that might have been.
For me, it has been a horrifically wonderful year. Without the past year, I don't think I would have ever learned to trust and lean on God like never before... I mean really trust Him no matter what. I also learned to give up so much control, never knowing what the next thing would be and how fast it would come and I would have to respond. For that I am grateful. I learned to love my son on a deeper way as a mother, something that was hard in the early young years of my life overcoming addictions and the pain of my own life. I will always be forever grateful for the 24 and almost 26 years of life with my two sons. Would I have liked to have way more years? Absolutely! But then they were a gift from God from the very beginning, they were His children before He allowed me to have them. I am grateful that God saw something in me to bless me with these 2 very unique creations.
Forrest and Dustin I will miss you forever! I look forward to playing with you for eternity. You are good sons. I love you, I am glad you were born, I am so proud of you.
Dustin Lewis Bowman 3-26-85 to 9-15-09
Forrest Lee Bowman 12-26-82 to 9-21-08
He gave a good hard fight in the end as he has done his whole life but especially the past year. Not really ever complaining about the paralysis, but wanting to use that creative mind to write he has instead written something profound in our hearts. Mostly we didn't see it ,but with his passing ,we realized how much his quirky personality and love to "get a line" for use in possible writing had written deeply in the tablets of our heart.
You can't even imagine how much this occurred until we saw doctors, therapists, aides, etc spending time with us, laughing, crying, talking about how Dustin had effected them. Who would have thought when we would hear Dustin's disgruntles with staff , his rough words in their direction etc that even then, they loved him for his real heart below which they experienced for the past 7 months. They knew under those layers of crustiness that there was a lot of fun, trying to see if he could get a rise out of them for a possible movie line or to challenge them to see if they would stand up to him which he greatly admired.
With his passing, we will continue to carry the vision to help those with spinal cord injuries live a in a home environment with some unique physical therapy at Step it Up. We have named the home we had bought for Dustin, "Creative Footage". Yep, somewhat a weird name but very descriptive. Dustin was all about creating stories and his beloved film career that never quite got to get started despite graduating from Fullsail University. It was a little less than a year ago as he was traveling to Los Angeles that he had his car wreck that put a hold on his career. instead he created "footage" in his life at the Neurotrauma unit in Albequerque, Augusta VA and finally at the polytrauma unit at the Tampa VA. Of course "footage" also is our hope for those with spinal injuries to get up and walk in their own very special way.
We want to salute everyone on the medical team that has gone above and beyond to give Dustin the best care. Tampa VA has won a special place in my heart with their care for our Veterans. There is a sign when you go in the front door that says "The price of freedom is visible here". I have never seen such people with a heart to serve these men and women and a heart to continue their knowledge in how to best care for these soldiers.
They will be doing a complete medical exam from the time he entered in to the Air Force to early this morning. The combined effects of a spinal cord injury, brain injury and the resulting seizures is a very new phenomenon in how to care for it. They are consistently trying to learn from each and every medical opportunity and we are grateful that Dustin's passing will be learned from to help others. Many of our soldiers coming back from the war have these kind of injuries and much needs to be understood of the synergistic effects of these issues.
Rick and I want to thank you for each and every prayer. Don't every think for one minute that God did not hear them. Do remember however His plans and ways are higher than ours. Do not think for one minute that I understand His plan, only trust Him in all things. If you think about it, Dustin's abbreviated life has changed us all in some profound way. I only ask that you look at what that might have been.
For me, it has been a horrifically wonderful year. Without the past year, I don't think I would have ever learned to trust and lean on God like never before... I mean really trust Him no matter what. I also learned to give up so much control, never knowing what the next thing would be and how fast it would come and I would have to respond. For that I am grateful. I learned to love my son on a deeper way as a mother, something that was hard in the early young years of my life overcoming addictions and the pain of my own life. I will always be forever grateful for the 24 and almost 26 years of life with my two sons. Would I have liked to have way more years? Absolutely! But then they were a gift from God from the very beginning, they were His children before He allowed me to have them. I am grateful that God saw something in me to bless me with these 2 very unique creations.
Forrest and Dustin I will miss you forever! I look forward to playing with you for eternity. You are good sons. I love you, I am glad you were born, I am so proud of you.
Dustin Lewis Bowman 3-26-85 to 9-15-09
Forrest Lee Bowman 12-26-82 to 9-21-08
Saturday, September 12, 2009
God's perfect peace
This is a tough time. Dustin came from physical therapy on Friday and as usual they needed to suction him. Something was wrong and he turned blue as they called a "code blue" on him. They thought maybe something had happened as a result from his aneurysm surgery but after doing a CAT scan, that was normal. They then thought his trach had become displaced but that was ok as well. The diagnosis was 2 pneumothorax's meaning both lungs had collapsed. He was also having seizures lasting from 5-15 min. At this time, Dustin is in a medically induced coma to try to put his brain at rest. He was on enough anti seizure medication and he was still having almost constant seizures. Currently he is on no pain meds, on the vent, has infection in his left lung, and is minimally responsive. They are doing a 24 hour EEG to determine brain function.
This is very difficult to write but you deserve to know what is really going on. I could sugar coat it but the reality is he is in very critical condition. We are believing that when they read his EEG that they are amazed to see his brain function is perfect with no effect from all of the seizures. We are praying for a creative miracle for new brain cells and that he will come out of this with a healing of mind, body and spirit. They did just say that finally the anti seizure meds are beginnning to control the seizures.
I am at peace. This is not my battle , but the Lord's. It is way beyond me and I will continue to trust and believe God no matter what. Everything we go through is just a piece of the suffering that Jesus went through for us. First Peter says to not think it strange concerning these fiery trials, but to rejoice in our partaking of Christ's suffering. It then goes on to say (in my words) that if we continue to keep our heads up, represent God on this earth, that we will have exceeding joy. I am standing on the Word no matter what or how. What good is it to be a believer and only believe when everything goes as I think it should .
As someone told me, you don't want to be God , the hours are long and the work is tough. I am going to continue to believe that His ways and thoughts are higher than mine and that in all of this He has a perfect plan. May we all come out reflecting more and more of Him despite our situations.
Rick and I are heading to Tampa most likely tomorrow. We have stayed here with our memories of Dustin from our last week's visit which was excellent. I have placed him in God's hands. What a great and perfect place for us all to be.
I will keep you posted. Please know that every prayer God has heard and He is pleased with y our faithfulness. Mya we not have any doubt and unbelief as He works this out for the greatest good.
love
mary pat
This is very difficult to write but you deserve to know what is really going on. I could sugar coat it but the reality is he is in very critical condition. We are believing that when they read his EEG that they are amazed to see his brain function is perfect with no effect from all of the seizures. We are praying for a creative miracle for new brain cells and that he will come out of this with a healing of mind, body and spirit. They did just say that finally the anti seizure meds are beginnning to control the seizures.
I am at peace. This is not my battle , but the Lord's. It is way beyond me and I will continue to trust and believe God no matter what. Everything we go through is just a piece of the suffering that Jesus went through for us. First Peter says to not think it strange concerning these fiery trials, but to rejoice in our partaking of Christ's suffering. It then goes on to say (in my words) that if we continue to keep our heads up, represent God on this earth, that we will have exceeding joy. I am standing on the Word no matter what or how. What good is it to be a believer and only believe when everything goes as I think it should .
As someone told me, you don't want to be God , the hours are long and the work is tough. I am going to continue to believe that His ways and thoughts are higher than mine and that in all of this He has a perfect plan. May we all come out reflecting more and more of Him despite our situations.
Rick and I are heading to Tampa most likely tomorrow. We have stayed here with our memories of Dustin from our last week's visit which was excellent. I have placed him in God's hands. What a great and perfect place for us all to be.
I will keep you posted. Please know that every prayer God has heard and He is pleased with y our faithfulness. Mya we not have any doubt and unbelief as He works this out for the greatest good.
love
mary pat
Thursday, September 10, 2009
Good report!
been extended but not sure for how long. He is very anxious to get out
of there but it is helpful that his nurse, that is going home with
him, now lives on the VA campus at the Fisher house and is able to go
over for training for bowel management, respiratory, wound care etc.
Since the Fisher house is on the VA property, Dustin can go over by
himself in the wheelchair and hang out. She cooked him a big breakfast
over there yesterday and he certainly enjoyed himself. They did an EEG
(brain wave) study to see what may be causing the seizures but no
report yet. He seems much more clear and alert than when we left on
Sat. We are grateful for all of the prayers and divine appointments
that God has prepared for all of this. It was also exciting that we
heard back from the film director in LA that wrote him back in April.
He is still encouraging Dustin to write and is offering anything he
can do to be of help. We are so grateful for the support we have had and hope to serve others with spinal cord injuries as well.
We will keep you updated
mary pat
Sunday, September 6, 2009
A set back to move forward!
I wanted to let everyone know that Dustin had another seizure on Friday morning at 6am during his respiratory treatment. It has left him with a flat affect which I am believing is temporary. The poor kid has been through so much and I am thinking that brain surgery and seizures and too much meds would leave me a bit flat as well. Rick and I left on Sat after some time outside. He is very quiet but able to talk and answer questions if asked. He will have a brain scan on Tues. We believe that God continues to have His hand on him and all will be normal.
Nerina is to visit tomorrow and that will make him very happy. The other night (Sat) his heart rate was very high, his blood pressure too low and he had a fever. It was a difficult time for me and I needed to take a break. Rick h ad come and brought mussels and bread an olive oil from
Carrabba's from a special request from Dustin. Well when Rick got there he was not feeling too well. We went to our motel room and took a break and I really wanted to see him again before the night was over. We went back and he was on the phone with Nerina. I peaked in and his heart rate had come dow a bit and he was talking away. By faith, we had brought the mussels back and low and behold he ate everyone of them along with the bread and oil. I reminded him of the Psalms which says, " wine to make the heart glad, bread for strength and oil to make the face shine. The next morning his fever as gone and although quiet was doing better. Please continue to know that although the devil wants him, God gets him for life.
love to all
mary pat
Nerina is to visit tomorrow and that will make him very happy. The other night (Sat) his heart rate was very high, his blood pressure too low and he had a fever. It was a difficult time for me and I needed to take a break. Rick h ad come and brought mussels and bread an olive oil from
Carrabba's from a special request from Dustin. Well when Rick got there he was not feeling too well. We went to our motel room and took a break and I really wanted to see him again before the night was over. We went back and he was on the phone with Nerina. I peaked in and his heart rate had come dow a bit and he was talking away. By faith, we had brought the mussels back and low and behold he ate everyone of them along with the bread and oil. I reminded him of the Psalms which says, " wine to make the heart glad, bread for strength and oil to make the face shine. The next morning his fever as gone and although quiet was doing better. Please continue to know that although the devil wants him, God gets him for life.
love to all
mary pat
Wednesday, September 2, 2009
Good News update
Hi to all - Dustin is back in his old room at the VA. I never thought I would miss the VA but I guess it does become family and they certainly know all of Dustin's medical idiosyncrasies He arrived back last night and was kept on a pureed diet which is certainly not cool. He continues to be on one liter of oxygen which is minimal but is off the vent. As of dinner time, he is back on a regular diet.
I am very grateful that he is so much better and he does not have the severe headaches as before. He does have general neck, shoulder and headache pain which is to be expected after neurosurgery. The neck and shoulder pain comes from not being up for 5 days as well as the spinal cord injury itself. They say spinal cord injury patients always have pain, it is how much can you tolerate which how much or how little meds. I am believing no meds and no pain as he gets moving about again. His arms and shoulders are moving well which is amazing for a C4-5 injury and with some work to get the strength back, he should be able to do lots of things.
He continues to have his junky lung issuess and lots of lung secretions and mucous plugs which require suctioning to keep him from drowning in lung secretions. It is never fun to watch him gasping for breath as the medical staff quickly get him suctioned. Today I went over from Sanford while Rick stayed at the house to receive our new refrigerator. We also talked to 80 year old parents of someone at the VA that would like to come live here. We hope that works out as they would get some of the VA benefits that would help pay our nurse. Dustin enjoys him as well and it should be a longterm stable relationship. His nurse is moving into the VA Fisher house and will begin to learn some unique respiratory therapy and other care for Dustin. His discharge date on paper is Sept 28 which was before the surgery. To be honest he is doing as well if not better than before the brain surgery. That is amazing to me and I am grateful that God continues to have His hand on Dustin. As David in the Psalms so often said, "when I think of all that God has done for me" - boy do we believe that for Dustin.
Rick and I have had a somewhat fun time at Sanford and really are enjoying the quiet and comfort of the house. We had a "date dinner" last night in the very cool little town of Sanford. We are heading back to Tampa tomorrow evening and will meet will the benefits guy of the VA on Friday before heading back home on Sat. We are looking forward to having a few days together at home with our farm friendly animals and crops. It is time for me to plant a bunch of brocolli, cabbage, and brussels sprouts. It is hard to believe that this time last year after getting the call about Dustin that I went out and planted 40 broccoli plants. To be honest, I really didn't know what else to do. I am grateful we are still walking, talking and standing to represent our Beloved Father in heaven. He has certainly carried us through this year along with all of your prayers.
Please pray that Dustin can remain off all of the drugs he had so gotten weaned from and that his lungs would function perfectly and all secretions would dry up and of course for strength to move forward in therapy and for his bedsore wound to continue healing.
Love to all
mary apt
I am very grateful that he is so much better and he does not have the severe headaches as before. He does have general neck, shoulder and headache pain which is to be expected after neurosurgery. The neck and shoulder pain comes from not being up for 5 days as well as the spinal cord injury itself. They say spinal cord injury patients always have pain, it is how much can you tolerate which how much or how little meds. I am believing no meds and no pain as he gets moving about again. His arms and shoulders are moving well which is amazing for a C4-5 injury and with some work to get the strength back, he should be able to do lots of things.
He continues to have his junky lung issuess and lots of lung secretions and mucous plugs which require suctioning to keep him from drowning in lung secretions. It is never fun to watch him gasping for breath as the medical staff quickly get him suctioned. Today I went over from Sanford while Rick stayed at the house to receive our new refrigerator. We also talked to 80 year old parents of someone at the VA that would like to come live here. We hope that works out as they would get some of the VA benefits that would help pay our nurse. Dustin enjoys him as well and it should be a longterm stable relationship. His nurse is moving into the VA Fisher house and will begin to learn some unique respiratory therapy and other care for Dustin. His discharge date on paper is Sept 28 which was before the surgery. To be honest he is doing as well if not better than before the brain surgery. That is amazing to me and I am grateful that God continues to have His hand on Dustin. As David in the Psalms so often said, "when I think of all that God has done for me" - boy do we believe that for Dustin.
Rick and I have had a somewhat fun time at Sanford and really are enjoying the quiet and comfort of the house. We had a "date dinner" last night in the very cool little town of Sanford. We are heading back to Tampa tomorrow evening and will meet will the benefits guy of the VA on Friday before heading back home on Sat. We are looking forward to having a few days together at home with our farm friendly animals and crops. It is time for me to plant a bunch of brocolli, cabbage, and brussels sprouts. It is hard to believe that this time last year after getting the call about Dustin that I went out and planted 40 broccoli plants. To be honest, I really didn't know what else to do. I am grateful we are still walking, talking and standing to represent our Beloved Father in heaven. He has certainly carried us through this year along with all of your prayers.
Please pray that Dustin can remain off all of the drugs he had so gotten weaned from and that his lungs would function perfectly and all secretions would dry up and of course for strength to move forward in therapy and for his bedsore wound to continue healing.
Love to all
mary apt
Sunday, August 30, 2009
Our Alpha and OMega
Hi to everyone as I sit at the Embassy suites in Tampa that the Va suporters so generously donate. Rick is at Dustin's new house in Sanford (north orlando) with Sandy our new servic e puppy golden retriever in training. She is beautiful and doing quite well. Her list of places she has visted continues to expand. She patiently waited for 6 hours while Dustin was in surgery at Tampa General and has visited him in the neuroscience trauma unit as well. To catch you up, we went to a workshop at the spinal cord expo in Orlando and could not resist since there is such a need for puppy trainers. We also attended our first training with the trainer where we got her (New Horizons Service dogs) and she did quite well all considering the short time we have had her.
On another note, I guess I should back up. As always, it seems like a whirlwind but we all continue to press through. It was determined that Dustin has a rapidly growing traumatic brain aneurysm from the car accident and brain surgery was performed this past Thursday. They were not able to do a "coiling" which is somewhat an easy surgery but had to do a craniotomy (crack open your skull) and then through a very complex (more than they expected) teased out a bunch of blood vessels feeding the aneurysm before cutting its blood supply off. He came out of surgery after 6 hours of anesthesia and it was a bit disconcerting to say the least. He had a very long and difficult time coming out of this and had several seizures along the way. They had put him on the vent before he went into surgery and this is the last thing Dustin would ever want with all of the past repiratory trauma he has had. As of today, he is off the vent but still getting oxygen, coming back to his normal self and doing well. The poor kid has had no food for 5 days and they were about to reinsert the PEG feeding tube which had been removed a while back if they could not get him off the vent. Well, praise God, they didn't have to do that as he was able to get of the vent.
Today he had orange jello, every other bite with nasty smashed up pills in it . What a rude awakening for food. He drank some supplements and hopefully tomorrow they will begin to feed him again. Knowing him, he will not want the hospital food, preferring anything that anyone would bring him. Il'll work on that when I return tomorrow.
Well after brain surgery, the realtor was so nice to come find us in the Tampa General Hospital to sign papers for the house closing. We were not able to leave when we were supposed to due to the extended time to the surgery. So here we are in the hopsital McDonalds, puppy in tow, Dustin in recovery and us signing for a house. I suppose that is all in a days work for us lately. OUr realtor was absolutely the best, even convincing her husband they needed to discuss family issues so could he please ride to Tampa with her to meet us and they could accomlish 2 things at once.
We made it to the new house and it is really a dream come ture. NOt only is the house very accessible, but our neighborhood and neighbors are something out of the Beaver Cleaver era. Most have lived there all their lives, sharing yards, mowing etc. It is a very safe and comfortable place with a big fenced yard that Sandy runs with along with the neighbors lab. We were blessed to meet Tucker (Rick's son from Naples) and his new girlfriend and 2 children who drove up to meet us. We spent a fun day today at the Sanford zoo and then I headed to Tampa to see Dustin. He is much improved, mind is pretty clear with a little loss of memory at the present, but nothing rest, God and keeping people out of his brain won't cure. Once again, God has brought this kid through. We just keep adding another chapter to the book or movie that we hope Dustin will write some day.
Dustin is still in pain, most likely because he has not moved for 5 days, as well as they said to expect headaches for the next 6 months or so. I think not!! I talked to him for awhile and then left to come back to the motel while Rick is in the new house meeting cable people, contractors etc and dog training. He is the most awesome man in the world and I am proud to call him my husband! I will go see Dustin in the morning and then head back to Sanford. We need to buy a refridgerator and lots of house stuff. Rick and I are using this time to be very quiet (not hard with no TV, no internet (until today), limited furniture etc. It is actually really fun and probably we needed something like an empty house to make us stop. We look forward to holding hands, walking the town of Sanford and sleeping. I will plan to make the 2 hours trip a time or two more as I am not sure when they will transfer Dustin back to the VA. We actually really miss the VA and the familiarity that it has for us.
Until then, please continue to pray that all seizures are done, all anesthesia is eliminated from his body quickly, and that his strength, breathing, lung function etc will be perfected in Jesus name.
We love you all
mary pat
On another note, I guess I should back up. As always, it seems like a whirlwind but we all continue to press through. It was determined that Dustin has a rapidly growing traumatic brain aneurysm from the car accident and brain surgery was performed this past Thursday. They were not able to do a "coiling" which is somewhat an easy surgery but had to do a craniotomy (crack open your skull) and then through a very complex (more than they expected) teased out a bunch of blood vessels feeding the aneurysm before cutting its blood supply off. He came out of surgery after 6 hours of anesthesia and it was a bit disconcerting to say the least. He had a very long and difficult time coming out of this and had several seizures along the way. They had put him on the vent before he went into surgery and this is the last thing Dustin would ever want with all of the past repiratory trauma he has had. As of today, he is off the vent but still getting oxygen, coming back to his normal self and doing well. The poor kid has had no food for 5 days and they were about to reinsert the PEG feeding tube which had been removed a while back if they could not get him off the vent. Well, praise God, they didn't have to do that as he was able to get of the vent.
Today he had orange jello, every other bite with nasty smashed up pills in it . What a rude awakening for food. He drank some supplements and hopefully tomorrow they will begin to feed him again. Knowing him, he will not want the hospital food, preferring anything that anyone would bring him. Il'll work on that when I return tomorrow.
Well after brain surgery, the realtor was so nice to come find us in the Tampa General Hospital to sign papers for the house closing. We were not able to leave when we were supposed to due to the extended time to the surgery. So here we are in the hopsital McDonalds, puppy in tow, Dustin in recovery and us signing for a house. I suppose that is all in a days work for us lately. OUr realtor was absolutely the best, even convincing her husband they needed to discuss family issues so could he please ride to Tampa with her to meet us and they could accomlish 2 things at once.
We made it to the new house and it is really a dream come ture. NOt only is the house very accessible, but our neighborhood and neighbors are something out of the Beaver Cleaver era. Most have lived there all their lives, sharing yards, mowing etc. It is a very safe and comfortable place with a big fenced yard that Sandy runs with along with the neighbors lab. We were blessed to meet Tucker (Rick's son from Naples) and his new girlfriend and 2 children who drove up to meet us. We spent a fun day today at the Sanford zoo and then I headed to Tampa to see Dustin. He is much improved, mind is pretty clear with a little loss of memory at the present, but nothing rest, God and keeping people out of his brain won't cure. Once again, God has brought this kid through. We just keep adding another chapter to the book or movie that we hope Dustin will write some day.
Dustin is still in pain, most likely because he has not moved for 5 days, as well as they said to expect headaches for the next 6 months or so. I think not!! I talked to him for awhile and then left to come back to the motel while Rick is in the new house meeting cable people, contractors etc and dog training. He is the most awesome man in the world and I am proud to call him my husband! I will go see Dustin in the morning and then head back to Sanford. We need to buy a refridgerator and lots of house stuff. Rick and I are using this time to be very quiet (not hard with no TV, no internet (until today), limited furniture etc. It is actually really fun and probably we needed something like an empty house to make us stop. We look forward to holding hands, walking the town of Sanford and sleeping. I will plan to make the 2 hours trip a time or two more as I am not sure when they will transfer Dustin back to the VA. We actually really miss the VA and the familiarity that it has for us.
Until then, please continue to pray that all seizures are done, all anesthesia is eliminated from his body quickly, and that his strength, breathing, lung function etc will be perfected in Jesus name.
We love you all
mary pat
Monday, August 24, 2009
prayers please!
HI everyone - I talked to Dustin and they came today and said he did have a brain aneurysm. In one sense that is good to know for that is why he has had the excruciating head pain. I am grateful they have diagnosed the root of the problem and they can quit covering it up with drugs!. They will be sending him to Tampa General for this surgery and we would covet your prayers. God has had and will have His hand on him throughout this whole ordeal. Please pray and believe with us for a perfect surgery, and quick recovery so that he can get back to his much needed rehab.
I will keep you posted as I am not sure exactly when they are doing it. Right now they have put him on bedrest. In all of his "shaking" respiratory treatments with the bed slanted down and the many other movements and treatments he has had, I know God has protected him and will continue. He is in good spirits and is truly a brave trooper. I love him so much and look forward to when we can look back on this and totally see God's plan.
Thanks for your prayers and I will keep you posted.
love
mary pat
I will keep you posted as I am not sure exactly when they are doing it. Right now they have put him on bedrest. In all of his "shaking" respiratory treatments with the bed slanted down and the many other movements and treatments he has had, I know God has protected him and will continue. He is in good spirits and is truly a brave trooper. I love him so much and look forward to when we can look back on this and totally see God's plan.
Thanks for your prayers and I will keep you posted.
love
mary pat
Saturday, August 22, 2009
Power, love and a sound mind
HI everyone - I know it has been a long time but it is hard to write about the same thing that hasn't changed especially when I was not able to talk to Dustin on the phone for about a week. Well, I just got back from a great time with him. I got there Wed. evening and we talked for a bit and fed him some cherries and grapes and then to the motel. I of course had in tow our new service puppy in training. Oh whoops, I forgot to blog on that. OK well you know Rick and I went to the spinal cord injury expo in Orlando 2 weeks ago along with Dustin's future awesome caretaker and my sister. Being the school oriented one, I wanted to go to every workshop they were having. We went to many but of course we had to go to the one on service animals.
A wonderful lady who has been in a wheel chair since age 9 has been breeding and training golden retrievers and lab since 1995 for those in wheelchairs or special needs. Of course they brought the dogs to do demonstrations and yes , 3 extra hours later on our trip home, Rick and I are the proud parents (puppy trainers) for a 4 month old golden retriever puppy that we named Sandy. We got to name her and they said the "litter theme"was mother earth (barf barf). We thought Sandy was basic and earthy and she is certainly that color. We will keep her and train her (us!!) for 16-20 months and then she will go back to New Horizens for final training before being matched with someone and their personalities.
We have taken her to work last week as well as churchand she did great. This week I took her with me to see Dustin and she cruised all over the VA, went with Dustin to have a CAT scan as well as a pizza party with a live band. She is doing good for the most part but I quickly realized that at home after "work" she could go home and run with the 3 other dogs. At Tampa, she got to go to the inside of a motel room. Very different from 25 acres and 3 large dogs to play with. We are learning each other and she is doing well. I have to teach her 80 commands. That is hard for me as I always had the attitude as to " you don't want to do what I tell you - fine - do it your way and suffer the consequences". Well just so you know that doesnt' work with kids or dogs. this is Marine boot camp for me to learn discipline and follow through!
Meanwhile, Dustin is having excrutiating head pain that is posititional and so had the CAT scan with an angiogram. They do not see any changes according to Dustin but may send him to Tampa General for a more invasive study of what this "blob" is that shows up on the CAT scan that possibly is causing all of the pain. On the great note, Dustin has been weaned off a ton of opiate drugs and I now have my son back. His cognition is now sharp and his memory is so much better. He is motivated to begin exercising his arms, be more sociable with the other patients and is now actually looking forward to pushing through the frustration of learning voice command on his computer. I told him I am doing the same thing with SAndy as I have to teach her the exact commands so her next owner will already know them.
I MUST go spend time with my husband now but will write soon. Please pray that the intense head pain will go in Jesus name! I tryly believe we have rounded the corner. We appreciate all of your prayers.
Will write soon.
love mary pat
A wonderful lady who has been in a wheel chair since age 9 has been breeding and training golden retrievers and lab since 1995 for those in wheelchairs or special needs. Of course they brought the dogs to do demonstrations and yes , 3 extra hours later on our trip home, Rick and I are the proud parents (puppy trainers) for a 4 month old golden retriever puppy that we named Sandy. We got to name her and they said the "litter theme"was mother earth (barf barf). We thought Sandy was basic and earthy and she is certainly that color. We will keep her and train her (us!!) for 16-20 months and then she will go back to New Horizens for final training before being matched with someone and their personalities.
We have taken her to work last week as well as churchand she did great. This week I took her with me to see Dustin and she cruised all over the VA, went with Dustin to have a CAT scan as well as a pizza party with a live band. She is doing good for the most part but I quickly realized that at home after "work" she could go home and run with the 3 other dogs. At Tampa, she got to go to the inside of a motel room. Very different from 25 acres and 3 large dogs to play with. We are learning each other and she is doing well. I have to teach her 80 commands. That is hard for me as I always had the attitude as to " you don't want to do what I tell you - fine - do it your way and suffer the consequences". Well just so you know that doesnt' work with kids or dogs. this is Marine boot camp for me to learn discipline and follow through!
Meanwhile, Dustin is having excrutiating head pain that is posititional and so had the CAT scan with an angiogram. They do not see any changes according to Dustin but may send him to Tampa General for a more invasive study of what this "blob" is that shows up on the CAT scan that possibly is causing all of the pain. On the great note, Dustin has been weaned off a ton of opiate drugs and I now have my son back. His cognition is now sharp and his memory is so much better. He is motivated to begin exercising his arms, be more sociable with the other patients and is now actually looking forward to pushing through the frustration of learning voice command on his computer. I told him I am doing the same thing with SAndy as I have to teach her the exact commands so her next owner will already know them.
I MUST go spend time with my husband now but will write soon. Please pray that the intense head pain will go in Jesus name! I tryly believe we have rounded the corner. We appreciate all of your prayers.
Will write soon.
love mary pat
Monday, August 3, 2009
the fun part
After posting the other day, I realized I had not posted the "fun part". Dustin and I had a great time each day of our visit going to the new Starbucks at the VA. You see Dustin and I have always enjoyed coffee together and I decided the best thing he could have to perk him up would be the double expresso caramel iced coffee drink. You know, it really was. He stayed in his wheelchair for 6-7 hours doing his therapy etc without going into total pain and exhaustion.
The "funny part" was that the first day we found Starbucks I decided coming back to the spinal cord unit that we would go outside down a ramp and do something different. Well first of all he got stuck in the sand and then he went off the curb. Oh my gosh--too exciting and nervewracking while carrying 2 coffees and a water bottle. Dustin finally said, "Mom- put the things down and then try to help me". Oh what a concept. I put the stuff down, pushed on the back of his chair while he put it forward motion. Whew back on the side walk again!! Oh well we decided $3.50 coffees were far more beneficial than all of the drugs that have been using.
On the tougher note, please pray against extreme pain. I called him yesterday and the whole weekend he had not gotten up and was in a lot of pain. I really think it comes from the brain aneurysn after doing a little research. God is still bigger than all of this.
Rick has gone to Virginia to pick up my sister for a couple week visit. We plan to go to the Expo this weekend for spinal cord new things and then to visit Dustin. Please keep us in prayer as we continue to try to represent God in all of this.
We love you all
Rick and Mary Pat
The "funny part" was that the first day we found Starbucks I decided coming back to the spinal cord unit that we would go outside down a ramp and do something different. Well first of all he got stuck in the sand and then he went off the curb. Oh my gosh--too exciting and nervewracking while carrying 2 coffees and a water bottle. Dustin finally said, "Mom- put the things down and then try to help me". Oh what a concept. I put the stuff down, pushed on the back of his chair while he put it forward motion. Whew back on the side walk again!! Oh well we decided $3.50 coffees were far more beneficial than all of the drugs that have been using.
On the tougher note, please pray against extreme pain. I called him yesterday and the whole weekend he had not gotten up and was in a lot of pain. I really think it comes from the brain aneurysn after doing a little research. God is still bigger than all of this.
Rick has gone to Virginia to pick up my sister for a couple week visit. We plan to go to the Expo this weekend for spinal cord new things and then to visit Dustin. Please keep us in prayer as we continue to try to represent God in all of this.
We love you all
Rick and Mary Pat
Tuesday, July 28, 2009
Mercy - fresh and new each day
Hi to all- it ha sbeen awhile since I posted as I don't like to post information that only fills a page. I talk to Dustin about 3- times a week but it is usually a limited conversation. His memory seems poor but I have decided much of it I would not bother to remember either. Day after day, the same therapies, the same pain, the fever that comes and goes - well I don't think it is brain trauma just boredom trauma!
I made it to my second family meeting. I was a bit tired and for whatever reason a little weepy when I entered into an overwhelmng room of about 20 professionals. They begin to ask Dustin questions like "what do you want to do for self care in the next 2 weeks or what are your medical concerns. NOw don't get me wrong but those questions to someone on massive meds and who has been doing the same thing for 10 months.....well what answer would YOU have?!?!?
The meeting was whatver but a few concerns I had were his decreased cognition, and memory (he asked me when he got a new roommate - that he hadn't ever had one before . He has had the same one for about 4 months) I also questioned a CAT scan he had about 3 weeks ago and they stil are not sure of the results. They said something to the effect that he might have an anuerysm in his brain that is causing pain and cognitive problems and you would have do to an angiogram to find out. Are you kdding me....that's it???? And..........when where you maybe thinking about following through with this? I mean it sounds more serious than "what's for dinner right?" I was told he would have to have it at Tampa General and it would be outpatient. OK I thought I got it but then I questioned them about "ourpatient" and they told me when he goes home/discharged that he could get it. I think I must have been in shock when they said this. I mean do I have stupid written all over my face? Oh well I will take that a little further tomorrow.
Dustin has also been refusing respiratory treatment and then cussing at them to leave him alone. As a result, his lung function gets diminished, his oxygen that keeps your brain functioning well, and circulation to the wound gets diminished. I know in the past the treatments were very apinful and traumatic to him but I also know he wanted off the vent and dealt with it. When I questioned him about it and explained the utmost importance of doing the treatments he was totally shocked at what I was telling him. In his mind, he did not remember any of it except for one incidence when he blacked out during the treatment and then came out of it cussing. I tell you God certainly has His hand on Dustin!
Oh well, after the meeting, Dustin seemed to really perk up. We went to PT where he rode a little statiionary bike for 30 minutes (foot pedals for you) to keep range of motion up and the calicification around the joints down. mAfter that it was off to Starbucks, a new feature of the VA!! I havce always thought caffeine to be a good thing especially if you feel a little down and groggy. Well, a Carmalito doubvle expresso seemed to be just what was needed. WE came back, ate lunch outside and then went to OT. Here he is practicing arm feeding movements with these arm sling things that are pretty cool. He maintained strength,. proper blood pressure and a great attitude through it all. Now that is a miracle from lately. By this time he had been up 7 hours (he has a 2-3 hour sitting limit) and doing great the whole time with now breakthrough pain or anything. He was positive with me the whole time and I am soooooooooooo grateful for the great day.
We got back to the room and he wa certainly tired out. He slept a bit and I went to Walmart, and the health food store. When I got back I got to spend some great time with Dustin's most awesome caretaker. We discussed the plan for training, and discharge for Dustin's tentative date of Sept 28. We are all trusting God to work out the infinite details while we take our peace.
I came back and Dustin chowed down on Chinese food and a few chococate Ensure's. We had had a lunch outside of tuna salad on Rosemary Garlic Triscuits, a ton of grapes, ice cream and the infamous Ensure to wash it all down. Oh yeah, he also had a few bites of our sausage from our neighbor's pig. I left him at 9pm hooked up to his favorite audio book. I think we will all sleep well tonght. I am believing we are over the hump and going towards the home stretch.
thanks to all for your continual prayers and interest in our family testimony.
love to all
mary pat
I made it to my second family meeting. I was a bit tired and for whatever reason a little weepy when I entered into an overwhelmng room of about 20 professionals. They begin to ask Dustin questions like "what do you want to do for self care in the next 2 weeks or what are your medical concerns. NOw don't get me wrong but those questions to someone on massive meds and who has been doing the same thing for 10 months.....well what answer would YOU have?!?!?
The meeting was whatver but a few concerns I had were his decreased cognition, and memory (he asked me when he got a new roommate - that he hadn't ever had one before . He has had the same one for about 4 months) I also questioned a CAT scan he had about 3 weeks ago and they stil are not sure of the results. They said something to the effect that he might have an anuerysm in his brain that is causing pain and cognitive problems and you would have do to an angiogram to find out. Are you kdding me....that's it???? And..........when where you maybe thinking about following through with this? I mean it sounds more serious than "what's for dinner right?" I was told he would have to have it at Tampa General and it would be outpatient. OK I thought I got it but then I questioned them about "ourpatient" and they told me when he goes home/discharged that he could get it. I think I must have been in shock when they said this. I mean do I have stupid written all over my face? Oh well I will take that a little further tomorrow.
Dustin has also been refusing respiratory treatment and then cussing at them to leave him alone. As a result, his lung function gets diminished, his oxygen that keeps your brain functioning well, and circulation to the wound gets diminished. I know in the past the treatments were very apinful and traumatic to him but I also know he wanted off the vent and dealt with it. When I questioned him about it and explained the utmost importance of doing the treatments he was totally shocked at what I was telling him. In his mind, he did not remember any of it except for one incidence when he blacked out during the treatment and then came out of it cussing. I tell you God certainly has His hand on Dustin!
Oh well, after the meeting, Dustin seemed to really perk up. We went to PT where he rode a little statiionary bike for 30 minutes (foot pedals for you) to keep range of motion up and the calicification around the joints down. mAfter that it was off to Starbucks, a new feature of the VA!! I havce always thought caffeine to be a good thing especially if you feel a little down and groggy. Well, a Carmalito doubvle expresso seemed to be just what was needed. WE came back, ate lunch outside and then went to OT. Here he is practicing arm feeding movements with these arm sling things that are pretty cool. He maintained strength,. proper blood pressure and a great attitude through it all. Now that is a miracle from lately. By this time he had been up 7 hours (he has a 2-3 hour sitting limit) and doing great the whole time with now breakthrough pain or anything. He was positive with me the whole time and I am soooooooooooo grateful for the great day.
We got back to the room and he wa certainly tired out. He slept a bit and I went to Walmart, and the health food store. When I got back I got to spend some great time with Dustin's most awesome caretaker. We discussed the plan for training, and discharge for Dustin's tentative date of Sept 28. We are all trusting God to work out the infinite details while we take our peace.
I came back and Dustin chowed down on Chinese food and a few chococate Ensure's. We had had a lunch outside of tuna salad on Rosemary Garlic Triscuits, a ton of grapes, ice cream and the infamous Ensure to wash it all down. Oh yeah, he also had a few bites of our sausage from our neighbor's pig. I left him at 9pm hooked up to his favorite audio book. I think we will all sleep well tonght. I am believing we are over the hump and going towards the home stretch.
thanks to all for your continual prayers and interest in our family testimony.
love to all
mary pat
Saturday, July 11, 2009
Over hill and dale
Rick and I went to the open house at "Step it Up" in Sanford and boy was that an encouragement. Most of the current clients are young and look great! It was so cool to see them on typical gym equipment with their trainers strengthening their muscles, coordination and in a "walking" machine. They were all very positive and all they could say was "we gotta get Dustin here."
Rick and I had a some quality time at the Marriott for a whole 17 hours before heading to Tampa. The social worker was able to get some of the big whigs together for a meeting requested by me. We had several concerns including decreased cognition, increased pain while on enough pain meds to take out half of the ward, him refusing treatment and just laying in bed and the wounds (found out he has 2 new ones). They "heard" me and moved into action. They have already eliminated one med that I know of, changed others, got him a new improved bed and assured me about the wounds. The large one has actually decreased 1.5 cm and that apparently is good. His old doctor that he greatly admires and who has great discernement with Dustin has been called back onto his case along with the head guy of the spinal cord unit who is new and seems very concerned and on the ball.
After the meeting, (he was in so much pain he couldn't come) the visit went downhill pretty quick. We left early and got dinner and got a priceless 9 hours of sleep. I spent much of the morning at the pool fortifying myself with the book of James which really helped me see that I had gotten caught up in his negativity, was getting angry at his passivity and what I perceived as "giving up". I repented to God for this and decided I would from now on "walk by faith and not by sight". When I speak about Dustin I will no longer talk about what it looks like in the natural but see him by faith as a strong, healthy young man with a sound mind. I will also speak and treat him just as that and not get pulled into the demonic pit of hopelessness and destruction. Now most of you that know me would be saying "but of course you have doing this walk all along," Let me tell you I was starting to get sucked into all of the generational iniquity but some quality time with God helped me see I was on slippery ground.
Today he was like the old/new Dustin. We had a great visit, he looked good and seemed motivated to get up, let me work on his tense neck and we enjoyed a whole raw juicy pineapple as well as a strawberry milkshake outside. Our great friend from Naples came to visit and we all had a few laughs of old memories. That is the first time in awhile he has laughed and actually looked someone in the eye. This is worth a billion dollars to me or any other thing in the world.
We fed him dinner (4:30 - my usual lunch time) and he was going to take a big nap. He had had a full shower with the old hippie Dr. Bronners peppermint soup that Rick and I love, had a big day and now ready to rest. It was a delight for that "normal" schedule. They are looking at possible Botox injections into his neck to alleviate the tenseness, extreme pain and headaches that he gets. The one thing they are not sure about is apparently it decreases the strength of the muscles which is probably not good right now. The good thing is then perhaps he could get off most all pain meds. I will trust that God has the perfect plan with no side effects.
Rick is recuperating well with his knee but it does swell up after he stays on it for very long. He finally finished all of his blood thinner shots (yeah!!!) and rarely uses the "real" pain meds. He is limping around with no crutch or anything and doing his exercises.
I am very grateful for this day and all of you who pray for us. We will look back one day and see how we all changed and matured in our faith and how God brought us all into His perfect plan. I can't wait and will try to patiently wait. Until then I am still walking.......
love to all
mary pat
Rick and I had a some quality time at the Marriott for a whole 17 hours before heading to Tampa. The social worker was able to get some of the big whigs together for a meeting requested by me. We had several concerns including decreased cognition, increased pain while on enough pain meds to take out half of the ward, him refusing treatment and just laying in bed and the wounds (found out he has 2 new ones). They "heard" me and moved into action. They have already eliminated one med that I know of, changed others, got him a new improved bed and assured me about the wounds. The large one has actually decreased 1.5 cm and that apparently is good. His old doctor that he greatly admires and who has great discernement with Dustin has been called back onto his case along with the head guy of the spinal cord unit who is new and seems very concerned and on the ball.
After the meeting, (he was in so much pain he couldn't come) the visit went downhill pretty quick. We left early and got dinner and got a priceless 9 hours of sleep. I spent much of the morning at the pool fortifying myself with the book of James which really helped me see that I had gotten caught up in his negativity, was getting angry at his passivity and what I perceived as "giving up". I repented to God for this and decided I would from now on "walk by faith and not by sight". When I speak about Dustin I will no longer talk about what it looks like in the natural but see him by faith as a strong, healthy young man with a sound mind. I will also speak and treat him just as that and not get pulled into the demonic pit of hopelessness and destruction. Now most of you that know me would be saying "but of course you have doing this walk all along," Let me tell you I was starting to get sucked into all of the generational iniquity but some quality time with God helped me see I was on slippery ground.
Today he was like the old/new Dustin. We had a great visit, he looked good and seemed motivated to get up, let me work on his tense neck and we enjoyed a whole raw juicy pineapple as well as a strawberry milkshake outside. Our great friend from Naples came to visit and we all had a few laughs of old memories. That is the first time in awhile he has laughed and actually looked someone in the eye. This is worth a billion dollars to me or any other thing in the world.
We fed him dinner (4:30 - my usual lunch time) and he was going to take a big nap. He had had a full shower with the old hippie Dr. Bronners peppermint soup that Rick and I love, had a big day and now ready to rest. It was a delight for that "normal" schedule. They are looking at possible Botox injections into his neck to alleviate the tenseness, extreme pain and headaches that he gets. The one thing they are not sure about is apparently it decreases the strength of the muscles which is probably not good right now. The good thing is then perhaps he could get off most all pain meds. I will trust that God has the perfect plan with no side effects.
Rick is recuperating well with his knee but it does swell up after he stays on it for very long. He finally finished all of his blood thinner shots (yeah!!!) and rarely uses the "real" pain meds. He is limping around with no crutch or anything and doing his exercises.
I am very grateful for this day and all of you who pray for us. We will look back one day and see how we all changed and matured in our faith and how God brought us all into His perfect plan. I can't wait and will try to patiently wait. Until then I am still walking.......
love to all
mary pat
Thursday, July 2, 2009
A different season
Hi to all - I have not written lately for many reasons but will try to express in words this season we are going through. As you know Dustin has been in the hospital over 9 months with progress that is sometimes difficult at best to see. It is a times like these that we do need to focus on the fact that he is alive, off the vent, eating food and as of the last few days cleared to drink small amounts of fluid. His large wound is still fairly large but continues to heal. That of course has been much of the hindering factor in learning bed transfers, being in his wheelchair for long periods of time to go on outings etc. He also has had the cast on his arm after it got so contracted from Augusta VA and I am pushing as to now since it is off, as to why he is not working on feeding himself. I had a good talk with the social worker and she is going to push this. He fed himself a few bites when he was in Albuquerque so I know it is possible as we have practiced a bit since then.
Dustin and I have had a difficult time in our relationship which is hard after losing Forrest as well. He seems to hold a lot of bitterness towards me, is often harsh and seems to care less. Of course I know it is the things operating in him as well as all of the drugs talking. The drug thing is hard as lately it seems like it has really altered his personality. I know what it is but it does not make it easier to deal with. Of course we teach and I believe that there is pain, then pain memory that demands the drug, that produces more pain to demand more drugs etc. You end up with someone addicted to narcotics, that still has pain, that has an altered reality and personality and fear of going off of them because of the pain. The spiritual dynamics are a battle and my biggest job is to remember I have a very sweet , creative, good hearted son under all of this.
The VA has purchased a new MAC for him as well as programs needed for voice activation. Once it gets here he will have it a his bedside and then he will then be responsible for the motivation to practice learning it. They bought him a very fast one as they are well aware of his low tolerance at this point. I thought that was pretty amazing.
Rick had his knee surgery and is doing well. It was a very big surgery, I mean they basically take a hammer and whack your knee, rip it open, but in some metal parts, beat it around, and then put a bunch of thick staples in it. Needless to say it is very painful but he is not taking any pain meds. He has an extra understanding and compassion for what Dustin is going through as he really isn't supposed to be doing much and that is hard when there are so many things you want to do but aren't able. He also understands the pain thing but did realize after 2 days in the hospital with a morphine pump that it is real easy just to sit there and hit it and not care about a thing in the world. You don't feel like reading or really doing anything. He made a concentrated effort to not stay in that mode. He did decide to take the pain pills one night so he would sleep better. He decided the next morning with the great revelation after a night of pain that that is why they call them "pain pills". He actually had more pain on them overall than when not taking them.
I pray Dustin would be able to understand that. We had a doctor friend who shared research about how morphine actually increases pain and then you just have to keep taking it more and more. That is basically what happens in hospice. The pain gets worse and worse, the narcotics dose gets higher and higher until basically they take you out. I watched it with my mom and have talked to many others of which this has happened. Before Dustin went to college he made a quality decision to get off prescribed narcotics for scoliosis pain after being on them for 1-2 years. He quit taking them and was able to deal with pain by simply taking hot baths when he got stressed and a few tylenol every now and then so I do believe the research to hold true. I hope and pray that he will make that quality decision again so I can have my real son back.
He had a great visit with Nerina and her mom and sister which really helps me to know that they help keep his spirits up. HIs aunt Jodi (rick's sister) will be visiting this weekend and then his childhood best friend will be there for a few days. Rick and I plan to go to the open house for "Step it Up" rehab in Sanford and then will probably hang out there for the night and check out the town. It is quaint. We have put an offer on a house as Dustin decided he was not ready for that commitment. We will rent it out to people who come to the rehab for a month at a time. We will then visit Dustin for the weekend.
The cows are good (4 of them - one is the neigbors) , I am waiting for the chickens to lay some eggs and Buck, the Great Dane, is fitting right in with us. We have been eating garden tomatoes, fresh lettuce, cucumbers and radishes.
The addition on the house is really coming along and it absolutely beautiful. Pleasant Valley Days, at work, have been filled with good teaching and a bit more laid back this year. I was priviliged to teach when Pastor Donna was helping a friend have her baby all night. Of course the baby didn't come, I got to teach and it went really well.
Please pray that Dustin can bust out of the need for pain meds and sees beyond there fear that say he can't live without them, that he will move through the season of depression and anger into a place where he feels strong, worthwhile and hopeful for his future and can learn to laugh again. I know it is a season, that God is in charge of the seasons and seasons always change.
I have been pretty weepy and overwhelmed with having to work fulltime, deal with the rejection of Dustin, all of the chores, and being at church every night. Of course Rick is great in covering me and I have had great friends who in our cabin that love, support and pray for me. Her husband even mowed our grass which was a first for him. H is now officially a John Deere lover and also them not being dog people have even fallen for our 3 dogs including the big black goofy Buck.
thanks to all for your love , support and prayers for us. Remember the old Beatles song, "we get by with a little help from our friends..... and I add a ton of help from God. Yes, yes and amen!!
love
mary pat
Dustin and I have had a difficult time in our relationship which is hard after losing Forrest as well. He seems to hold a lot of bitterness towards me, is often harsh and seems to care less. Of course I know it is the things operating in him as well as all of the drugs talking. The drug thing is hard as lately it seems like it has really altered his personality. I know what it is but it does not make it easier to deal with. Of course we teach and I believe that there is pain, then pain memory that demands the drug, that produces more pain to demand more drugs etc. You end up with someone addicted to narcotics, that still has pain, that has an altered reality and personality and fear of going off of them because of the pain. The spiritual dynamics are a battle and my biggest job is to remember I have a very sweet , creative, good hearted son under all of this.
The VA has purchased a new MAC for him as well as programs needed for voice activation. Once it gets here he will have it a his bedside and then he will then be responsible for the motivation to practice learning it. They bought him a very fast one as they are well aware of his low tolerance at this point. I thought that was pretty amazing.
Rick had his knee surgery and is doing well. It was a very big surgery, I mean they basically take a hammer and whack your knee, rip it open, but in some metal parts, beat it around, and then put a bunch of thick staples in it. Needless to say it is very painful but he is not taking any pain meds. He has an extra understanding and compassion for what Dustin is going through as he really isn't supposed to be doing much and that is hard when there are so many things you want to do but aren't able. He also understands the pain thing but did realize after 2 days in the hospital with a morphine pump that it is real easy just to sit there and hit it and not care about a thing in the world. You don't feel like reading or really doing anything. He made a concentrated effort to not stay in that mode. He did decide to take the pain pills one night so he would sleep better. He decided the next morning with the great revelation after a night of pain that that is why they call them "pain pills". He actually had more pain on them overall than when not taking them.
I pray Dustin would be able to understand that. We had a doctor friend who shared research about how morphine actually increases pain and then you just have to keep taking it more and more. That is basically what happens in hospice. The pain gets worse and worse, the narcotics dose gets higher and higher until basically they take you out. I watched it with my mom and have talked to many others of which this has happened. Before Dustin went to college he made a quality decision to get off prescribed narcotics for scoliosis pain after being on them for 1-2 years. He quit taking them and was able to deal with pain by simply taking hot baths when he got stressed and a few tylenol every now and then so I do believe the research to hold true. I hope and pray that he will make that quality decision again so I can have my real son back.
He had a great visit with Nerina and her mom and sister which really helps me to know that they help keep his spirits up. HIs aunt Jodi (rick's sister) will be visiting this weekend and then his childhood best friend will be there for a few days. Rick and I plan to go to the open house for "Step it Up" rehab in Sanford and then will probably hang out there for the night and check out the town. It is quaint. We have put an offer on a house as Dustin decided he was not ready for that commitment. We will rent it out to people who come to the rehab for a month at a time. We will then visit Dustin for the weekend.
The cows are good (4 of them - one is the neigbors) , I am waiting for the chickens to lay some eggs and Buck, the Great Dane, is fitting right in with us. We have been eating garden tomatoes, fresh lettuce, cucumbers and radishes.
The addition on the house is really coming along and it absolutely beautiful. Pleasant Valley Days, at work, have been filled with good teaching and a bit more laid back this year. I was priviliged to teach when Pastor Donna was helping a friend have her baby all night. Of course the baby didn't come, I got to teach and it went really well.
Please pray that Dustin can bust out of the need for pain meds and sees beyond there fear that say he can't live without them, that he will move through the season of depression and anger into a place where he feels strong, worthwhile and hopeful for his future and can learn to laugh again. I know it is a season, that God is in charge of the seasons and seasons always change.
I have been pretty weepy and overwhelmed with having to work fulltime, deal with the rejection of Dustin, all of the chores, and being at church every night. Of course Rick is great in covering me and I have had great friends who in our cabin that love, support and pray for me. Her husband even mowed our grass which was a first for him. H is now officially a John Deere lover and also them not being dog people have even fallen for our 3 dogs including the big black goofy Buck.
thanks to all for your love , support and prayers for us. Remember the old Beatles song, "we get by with a little help from our friends..... and I add a ton of help from God. Yes, yes and amen!!
love
mary pat
Saturday, June 20, 2009
Hot, House and Hilarious
Well,, we made it to Tampa, a little late on Friday night. Rick had gone to Atlanta, waking up at 4:45 am to go to the VA about his knee surgery. He spoke with the surgeon, got all of the lab work and chest x-ray and is scheduled for knee surgery this Wed. (June 24). It is a big deal for him to go through with this, especially as our house addition needs him, our gardening, chickens and cows are in their fullness and we are trying to deal with getting Dustin a new house in Orlando. Rick has been waiting on God to heal him and has great faith in that area. Right now though it looks as though he needs to have the surgery especially with our president wanting to cut out veteran benefits. They wonder how he even walks on his knee with no meds etc but on the other hand they try to talk you out of it as the new knee only lasts 10-15 years. It is a bit weird as would you rather be more active now at age 59 for the next 10-15 years or would you rather wait unil you are 75??? As for me, I would rather move now and rock in the rocking chair in 15 years.
Please keep Rick and myself in prayer this week. It will be VERY busy with 190 people coming for the program at the church, in which we work, as well as being a children's week. That means lots of family issues generationally will be trying to manifest at any given time. His surgery is on Wed, I have to teach Thurs night and then again on Friday, along with ministry and then somehow be with him, possibly bring him home on Friday and then help him with 3 months of intensive rehab.Thank goodness for prayers and God's strength! "We can do ALL things in Christ Jesus who strengthens us". That is my Bible verse for the next few weeks. Fortunatley we have wonderful friends who will be staying in our cabins that are always a huge support to us.
Oh yeah, back to why we got to Tampa late. The morning, while Rick was at the VA and I was at work, we got a call that one of our cows who lives at the neighbors house got out. Fortunately we got a call later that morning that our neighbor had found them and put him in his pasture. Perfect we think. We will pick them up before we go to Tampa even though we are very amateur in the rodeo scene. Well, that proved to be quite correct as I am out there with a bucket of sweetfeed (cows favorite) trying to get them simply walk into the trailor. One problem was that our cows are not particularly used to sweetfeed and are young and skittish. Meanwhile I have the neighbor's cows, goats and donkey thinking that "hey this lady has my favorite food". I wish we had pictures as I had 2 giant cows, 2 goats and a donkey trying to get what I had. I was trying to preserve the precious bucket of feed when the donkey nipped my leg. How dare him - can you believe that? Fortunately the goats did not butt me with thier long horns.
About this time the man's wife came home. It is 100 degrees as we are doing this and I am stressing that we need to get on the road to Tampa. Her very nice and experienced husband agreed to help us with the cows on Monday when he would be around. He will get a handosme tip as far as I am concerned!!
Oh yeah, back to the blog about Dustin---- we got there late Friday about 9pm, fed him some cheesecake which our awesome neighbors sent (along with salmon, homemade potato salad and squash) and headed to the motel whipped for the day.
Today we got up and headed to Sanford (North Orlando) to look for more houses for Dustin. Yeah - I think we found a wonderful 4 bedroom 2 bath house on a nice shady lot. We will probably put an offer on it after we get a few pictures for Dustin. Of course we forgot and left the camera in the car so will ask the realtor to help us a bit on this.
We returned to Tampa and found Dustin in pain but wanting to eat. We fed him from our buffet, read some fun chapters on creative writing, shaved, brushed teeth and kissed him good night. He has gotten the casst off his one arm and having more feeling.
His aunt (Rick's sister) wil be visiting July 4th weekend on her Harley for a big ride for the Veterans, followed by a visit from his best friend as a child from Roanoke VA, a visit by his Dad, a visit from Nerina and then hopefully I will get there in between all of this. I of course have to take care of my "6'5" baby" as well. Life is never dull. Off to bed to go visit Dustin in the morning and then back home to GA.
thanks to all for your prayers,
mary pat
Please keep Rick and myself in prayer this week. It will be VERY busy with 190 people coming for the program at the church, in which we work, as well as being a children's week. That means lots of family issues generationally will be trying to manifest at any given time. His surgery is on Wed, I have to teach Thurs night and then again on Friday, along with ministry and then somehow be with him, possibly bring him home on Friday and then help him with 3 months of intensive rehab.Thank goodness for prayers and God's strength! "We can do ALL things in Christ Jesus who strengthens us". That is my Bible verse for the next few weeks. Fortunatley we have wonderful friends who will be staying in our cabins that are always a huge support to us.
Oh yeah, back to why we got to Tampa late. The morning, while Rick was at the VA and I was at work, we got a call that one of our cows who lives at the neighbors house got out. Fortunately we got a call later that morning that our neighbor had found them and put him in his pasture. Perfect we think. We will pick them up before we go to Tampa even though we are very amateur in the rodeo scene. Well, that proved to be quite correct as I am out there with a bucket of sweetfeed (cows favorite) trying to get them simply walk into the trailor. One problem was that our cows are not particularly used to sweetfeed and are young and skittish. Meanwhile I have the neighbor's cows, goats and donkey thinking that "hey this lady has my favorite food". I wish we had pictures as I had 2 giant cows, 2 goats and a donkey trying to get what I had. I was trying to preserve the precious bucket of feed when the donkey nipped my leg. How dare him - can you believe that? Fortunately the goats did not butt me with thier long horns.
About this time the man's wife came home. It is 100 degrees as we are doing this and I am stressing that we need to get on the road to Tampa. Her very nice and experienced husband agreed to help us with the cows on Monday when he would be around. He will get a handosme tip as far as I am concerned!!
Oh yeah, back to the blog about Dustin---- we got there late Friday about 9pm, fed him some cheesecake which our awesome neighbors sent (along with salmon, homemade potato salad and squash) and headed to the motel whipped for the day.
Today we got up and headed to Sanford (North Orlando) to look for more houses for Dustin. Yeah - I think we found a wonderful 4 bedroom 2 bath house on a nice shady lot. We will probably put an offer on it after we get a few pictures for Dustin. Of course we forgot and left the camera in the car so will ask the realtor to help us a bit on this.
We returned to Tampa and found Dustin in pain but wanting to eat. We fed him from our buffet, read some fun chapters on creative writing, shaved, brushed teeth and kissed him good night. He has gotten the casst off his one arm and having more feeling.
His aunt (Rick's sister) wil be visiting July 4th weekend on her Harley for a big ride for the Veterans, followed by a visit from his best friend as a child from Roanoke VA, a visit by his Dad, a visit from Nerina and then hopefully I will get there in between all of this. I of course have to take care of my "6'5" baby" as well. Life is never dull. Off to bed to go visit Dustin in the morning and then back home to GA.
thanks to all for your prayers,
mary pat
Wednesday, June 17, 2009
The Army Ball
Hi everyone - the following info on the ball is from Nerina. I was in Texas and had a great conference and wonderful time with my friend. We will be going to see Dustin this weekend and get his version of the Army ball. He has not been very talkative lately as I think he is really recovering from his first night out on the town. I am hoping for a picture to post on the blog.
The ball was beautiful. It was about 30 minutes away from the hospital and I know the ride was quite bumpy for Dustin and so he was in a lot of pain for most of the night. He looked so handsome in his tux! The room was decorated with red white and blue lights and the platoon choir sang, one of my favorite parts. Dustin and I did eat some good food; salad, veggies, chicken and some delicious desert. The comedian was really funny and I think Dustin enjoyed that. Even though he was in a lot of pain and I'm sure couldn't enjoy the night very much, I'm so proud of him for going and I think it was good to finally go somewhere outside the hospital.
I know on Monday they did some sort of scan to try to figure out what was causing his fever and so he missed his therapies that day. Lately he's been having a fever in the early morning which dwindles away throughout the day. I do not know the results of this. Yesterday, he did get out of bed and go to his therapy.
I will update you as we get to Tampa. We are spending most of Sat in Orlando looking for houses for Dustin. It will be a quick visit with a lot of good food for him!
love to all
mary pat
The ball was beautiful. It was about 30 minutes away from the hospital and I know the ride was quite bumpy for Dustin and so he was in a lot of pain for most of the night. He looked so handsome in his tux! The room was decorated with red white and blue lights and the platoon choir sang, one of my favorite parts. Dustin and I did eat some good food; salad, veggies, chicken and some delicious desert. The comedian was really funny and I think Dustin enjoyed that. Even though he was in a lot of pain and I'm sure couldn't enjoy the night very much, I'm so proud of him for going and I think it was good to finally go somewhere outside the hospital.
I know on Monday they did some sort of scan to try to figure out what was causing his fever and so he missed his therapies that day. Lately he's been having a fever in the early morning which dwindles away throughout the day. I do not know the results of this. Yesterday, he did get out of bed and go to his therapy.
I will update you as we get to Tampa. We are spending most of Sat in Orlando looking for houses for Dustin. It will be a quick visit with a lot of good food for him!
love to all
mary pat
Saturday, June 6, 2009
Food, food, food!!
Rick and I arrived on Friday evening to find a young man in much pain. He got his pain meds and he becomes a different person. He was excited that we had brought him food. He mostly passed his swallowing test this past Wed. and is on a regular diet with "nectar" thick liquids. The food here apparently is not noted for anything other than you don't starve so he immediately was ready to eat something from the "outside". He had had a milkshake and a cheeseburger from the outside that was brought to him by his favorite friend who has also tentatively agreed to be the bed and breakfast/innkeeper, nurse, cook, psychologist, and most of all a great friend to Dustin. She visits 2-3 times per week after working all day and brings much conversation and company.
Well, we started with Rick's famous tuna salad which we had snuck in before he passed his swallowing test and he ate a bunch of that. We then moved onto the 3 layer spice/caramel cake prepared byt the Amish and sent by our favorite friends and neighbors. Boy was that a hit and 2 peices got consumed. He was supposed to be having a 3 day colorie count and what do you say when you bring in a 1000 calorie cake, knowing he nevers eats that much hospital food. They are still trying to figure out whether to cut off the tube feeding. Dustin refused it as he says it makes his stomach hurt and have no appetite. I think it would not be bad to have it going throught the night to keep the protein and calories high to keep that wound healing.
Today I arrived while Rick went to Sanford to look at possible houses for Dustin. I found Dustin feeling great and ready to eat some more. We started in on cole slaw from KFC (my personal favorite), moved onto an apple, a cheeseburger from the Marines, baked beans, and finally homenade chili and then of course the 2 pieces of cake. Hve fun Ms. Dietitian figuring all of that out!!
He was put back on antibiotics and that has really messed up his therapy schedule. They are trying to get 3 different meds in and the timing is almost impossible. He was upset about this not ever wanting to miss any therapy. They should resolve this week as they will be over.
Gottta goo, it is dinner time and will see where we go. By the way, try feeding someone a fresh apple. You never know how much pressure you put on it to bite it until you are feeding someone else. I felt like I was cramming it in his face. How fun the things you learn.
love to all
mary pat
Well, we started with Rick's famous tuna salad which we had snuck in before he passed his swallowing test and he ate a bunch of that. We then moved onto the 3 layer spice/caramel cake prepared byt the Amish and sent by our favorite friends and neighbors. Boy was that a hit and 2 peices got consumed. He was supposed to be having a 3 day colorie count and what do you say when you bring in a 1000 calorie cake, knowing he nevers eats that much hospital food. They are still trying to figure out whether to cut off the tube feeding. Dustin refused it as he says it makes his stomach hurt and have no appetite. I think it would not be bad to have it going throught the night to keep the protein and calories high to keep that wound healing.
Today I arrived while Rick went to Sanford to look at possible houses for Dustin. I found Dustin feeling great and ready to eat some more. We started in on cole slaw from KFC (my personal favorite), moved onto an apple, a cheeseburger from the Marines, baked beans, and finally homenade chili and then of course the 2 pieces of cake. Hve fun Ms. Dietitian figuring all of that out!!
He was put back on antibiotics and that has really messed up his therapy schedule. They are trying to get 3 different meds in and the timing is almost impossible. He was upset about this not ever wanting to miss any therapy. They should resolve this week as they will be over.
Gottta goo, it is dinner time and will see where we go. By the way, try feeding someone a fresh apple. You never know how much pressure you put on it to bite it until you are feeding someone else. I felt like I was cramming it in his face. How fun the things you learn.
love to all
mary pat
Monday, June 1, 2009
Moving on up!
Hi to all - I have not visited Dustin since the last blog but wanted to let everyone know that he was moved to the progressive rehab unit. The usual is that you are there for 12 weeks working on your independence, going out into the community and practicing getting around, doing recreation therapy and getting driver certified. Dustin is on that course with an eye on the continued healing of the wound. The wound does limit what they can do on working on bed to chair transfers etc. as they cannot "slide" and practice as they do not want that wound to open up in any way.
Dustin is in in his new room and at this time it is a private room for which I am grateful. Nerina and her mom visited for the last few days after his move on Thursday and besides a fever and new antibiotics, he is doing fairly well. They have figured out that whenever he gets a fever , his pain level goes way up.
Dustin and Nerina met with the recreation therapist to go over activities that he likes. I think they were to meet yesterday and go to the library upstairs in the VA. As his "chair time" increases he will be going out to dinner, going to the zoo, sports games etc. Of course he will be going to the Army ball on June 13th with Nerina in full tux and dress. He seems really excited about that. Pray for all of the nursing staff as they will get them dressed and decked out. That should be a huge undertaking and I am certainly excited about having pictures.
Please pray as Dustin undergoes yet another swallowing test on Wed. If he passes, they will progress him to a regular diet and liquids!!!! I think the thing he wants the most is water. I finally was able to talk to the nurse today after many attempts and he is doing well. It sounds like he is up for a much longer period of time as they put him back to bed at 6pm which is the latest ever. He has physical therapy at 11am so perhaps he has been extended to be up for at least 6 hours.
Rick had his 59th birthday and we celebrated with our new stray dog that was adopted from the church grounds. NO - not just a mixed breed stray starved dog but a full bred Great Dane puppy that had every rib and bone sticking out. Well, I never have had a desire for a Great Dane but he looked like he would be one grateful dog if you would just feed him. I called Rick and he said if I could get him home, we could keep him. Now therein lies the problem. A starved dog who has no energy that needs to jump in the back of the truck. Fortunately we have a girl at work that has all the "farm" stuff in her truck and then another guy who came to lift him in the back. What started out as a great teaching at (Biblical insights to Food and Food Related Issues) ended up with this "farm" girl , an anorexic Great Dane and old pepperoni to tempt it in the back of the truck. Well I certainly know how to get out of going to Walmart for my husband's birthday present!?!?!?! (I hate to shop especially at Walmart which is the only store in town) I mean "Buckwheat" is the perfect gift for Rick.....the first dog he does not have to lean over and pet.
With that in mind, I better end this post. Lots of love, laughs and strength to help us through.
love
mary pat
Dustin is in in his new room and at this time it is a private room for which I am grateful. Nerina and her mom visited for the last few days after his move on Thursday and besides a fever and new antibiotics, he is doing fairly well. They have figured out that whenever he gets a fever , his pain level goes way up.
Dustin and Nerina met with the recreation therapist to go over activities that he likes. I think they were to meet yesterday and go to the library upstairs in the VA. As his "chair time" increases he will be going out to dinner, going to the zoo, sports games etc. Of course he will be going to the Army ball on June 13th with Nerina in full tux and dress. He seems really excited about that. Pray for all of the nursing staff as they will get them dressed and decked out. That should be a huge undertaking and I am certainly excited about having pictures.
Please pray as Dustin undergoes yet another swallowing test on Wed. If he passes, they will progress him to a regular diet and liquids!!!! I think the thing he wants the most is water. I finally was able to talk to the nurse today after many attempts and he is doing well. It sounds like he is up for a much longer period of time as they put him back to bed at 6pm which is the latest ever. He has physical therapy at 11am so perhaps he has been extended to be up for at least 6 hours.
Rick had his 59th birthday and we celebrated with our new stray dog that was adopted from the church grounds. NO - not just a mixed breed stray starved dog but a full bred Great Dane puppy that had every rib and bone sticking out. Well, I never have had a desire for a Great Dane but he looked like he would be one grateful dog if you would just feed him. I called Rick and he said if I could get him home, we could keep him. Now therein lies the problem. A starved dog who has no energy that needs to jump in the back of the truck. Fortunately we have a girl at work that has all the "farm" stuff in her truck and then another guy who came to lift him in the back. What started out as a great teaching at (Biblical insights to Food and Food Related Issues) ended up with this "farm" girl , an anorexic Great Dane and old pepperoni to tempt it in the back of the truck. Well I certainly know how to get out of going to Walmart for my husband's birthday present!?!?!?! (I hate to shop especially at Walmart which is the only store in town) I mean "Buckwheat" is the perfect gift for Rick.....the first dog he does not have to lean over and pet.
With that in mind, I better end this post. Lots of love, laughs and strength to help us through.
love
mary pat
Thursday, May 21, 2009
May 21 - springing alive!!
I have been visiting Dustin for the last 3 days and much is happening! I attended the first family meeting where all the different professions are there to work with Dustin on 2 week goals. HIs wound continues to heal being the size of a small pancake with the skin filling in. He is still allowed up in the chair for 3-4 hours per day. He attends Physical Therapy where he continues to get on the tilt table at 80 degrees (virtually standing up) and today he tried an "arm cycle video driving game". He doesn't have enough shoulder strength and continues to have a lot of shoulder,neck and head pain so the video cycle was not too popular today. He needs to build up his strength. He also got a steriod shot in the back of his head to help occipital headaches and then one in his neck area. We are really hoping that will help a lot with the pain so they can get him off some of the hard drugs for pain that don't work that well anyway.
He is able to eat "honey consistency" foods and up until today has only eaten eggs, french toast and grits (all pureed). Today he got to have a lunch of pureed pork, broccoli and mashed potatoes. He liked the potatoes needless to say and not much else. I had given him a few bites of tuna salad and mac/cheese from home and this coconut pie that he really liked. Oh whoops - it was not pureed. I will try to feed him chocolate pudding saved from lunch. He was pretty worn out by lunch and his swallowing and interest in food start dropping. He will have another swallowing test on June 3 and hopefully he can "clear" normal liquids and then can progress with a normal diet. His weight is a whole 3 lbs greater than me at 121 however he has 6 inches on me. He needs some intense good food!!
Nerina and the occupational therapist and myself have been researching all of the Mac computer stuff so he can begin training for film editing, and all of his film and usual computer stuff with voice activation. The VA will buy the computer and software as part of monies for "independent living" and vocational rehab. I am sure I mentioned that Fullsail (his school) has agreed to let him come "work" there with a voc rehab counselor. He had a full neuropsych evaluation and does have some limitations in "executive functions, sequencing and something else". He will need assistance keeping track of things such as time and tasks until it becomes routine.
He continues to have a cast on his right arm. They are going to remove the Pic line (yeah- this is an intravenous catheter that they have pumped a lot of meds and antibiotics in) and then cast his arm one final time to get it back to straight.
He will be moving to the "D" ward next Thursday and will then be on a 3 month plan towards discharge. It may be a bit more than that depending on his wound healing. He will be doing more activities including going out into the community, working on his computer, learning how to feed himself etc. He is really looking forward to it.
The Army has also invited him to an Army ball and the Paralyzed Veterans Association (who have helped us so many times) will be renting them tuxes and the whole nine yards. Of course he has invited Nerina and told her she will have to wear something "fabulous" ( you have to know Dustin and his language choices). It will be at the McDill Air Force Base.
Rick and I will probably be going to Sanford/Orlando to again try to find a house for him and get it renovated accessible. Please pray we can find the perfect chosen caretaker for him as that to me is the biggest issue we have. If you have any ideas let me know!! I plan to call one of our 7000 associates and see if he has anyone in his church. He will begin his rehab at Project Walk and as able start working at Fullsail. You have no idea how tiring even the least bit of stuff is to him so please pray that his transition to the next unit is smooth, with a great roommate, and a bit more tolerance in others.
As for the home front, our chickens continue to be a delight. Two Monday's ago we went to the cattle auction in Thomaston. Talk about not having a clue - that'd be Rick and I!! Anyway we ended up with a nice black angus baby bull (4-5 months) that was grass fed, no antibiotics etc from our close neighbor. We had tried to buy a cow from him and he said he'd call when he took it to auction. Thank goodness he was there to help us interpret Georgia auctioneer language. I have a pretty good ear for real southern, but I could not understand a word they were saying. Well, wouldn't you know that a guy that was shooting the breeze with us at the auction was trying to decrease his herd size and had several mom cows and babies he was trying to sell. We went and looked and there was a beautiful mom and baby black cows with these great black and white faces. We made the big corporate farm decision and bought them. when we went back to pick them up in our new cow trailor, we didn't know we were suppposed to have something on the floor so the cows would not slip. Oh well- have money , got cows, gotta go! Thank goodness the guy selling them to us knew cows and had them in the barn ready to load. Well, the mom got in (and by the way, up close , that was the biggest cow I have ever seen--1500 lbs??) and got spooked and started sliding around and then got out. Trying to get her back in with her baby was certainly stretching me. Well they are both loaded and now we have to drive home with a very freaked out 1500 lb cow slipping and sliding (oh- did I mention she had diarrhea by now) and I am just praying she doesn't slide and crush her baby. Prayer is awesome and we made it home with two live cows who jumped out into the woods not to trust us again. Rick has been slowly going out 2 times per day with sweet feed and getting them used to him and their favorite food. I took a Dairy Science class when I went to Clemson in 1975 and the only thing I remembered is "cows are creatures of habit". I certainly missed my animal calling as I love structure and habit!! Just another note, I thought I might want to major in Dairy Science which is hilarious since I was a pure city girl. OH well, some things go in a circle. Anyway - lots of fun coming up. Our daughter and her family and our son are coming today to visit for weekend. Then we get to keep our 2 granddaughters (ages 1 and 3) for 5 days.
We appreciate all of your prayers and interest in this chapter of our lives.
love to all
mary pat
He is able to eat "honey consistency" foods and up until today has only eaten eggs, french toast and grits (all pureed). Today he got to have a lunch of pureed pork, broccoli and mashed potatoes. He liked the potatoes needless to say and not much else. I had given him a few bites of tuna salad and mac/cheese from home and this coconut pie that he really liked. Oh whoops - it was not pureed. I will try to feed him chocolate pudding saved from lunch. He was pretty worn out by lunch and his swallowing and interest in food start dropping. He will have another swallowing test on June 3 and hopefully he can "clear" normal liquids and then can progress with a normal diet. His weight is a whole 3 lbs greater than me at 121 however he has 6 inches on me. He needs some intense good food!!
Nerina and the occupational therapist and myself have been researching all of the Mac computer stuff so he can begin training for film editing, and all of his film and usual computer stuff with voice activation. The VA will buy the computer and software as part of monies for "independent living" and vocational rehab. I am sure I mentioned that Fullsail (his school) has agreed to let him come "work" there with a voc rehab counselor. He had a full neuropsych evaluation and does have some limitations in "executive functions, sequencing and something else". He will need assistance keeping track of things such as time and tasks until it becomes routine.
He continues to have a cast on his right arm. They are going to remove the Pic line (yeah- this is an intravenous catheter that they have pumped a lot of meds and antibiotics in) and then cast his arm one final time to get it back to straight.
He will be moving to the "D" ward next Thursday and will then be on a 3 month plan towards discharge. It may be a bit more than that depending on his wound healing. He will be doing more activities including going out into the community, working on his computer, learning how to feed himself etc. He is really looking forward to it.
The Army has also invited him to an Army ball and the Paralyzed Veterans Association (who have helped us so many times) will be renting them tuxes and the whole nine yards. Of course he has invited Nerina and told her she will have to wear something "fabulous" ( you have to know Dustin and his language choices). It will be at the McDill Air Force Base.
Rick and I will probably be going to Sanford/Orlando to again try to find a house for him and get it renovated accessible. Please pray we can find the perfect chosen caretaker for him as that to me is the biggest issue we have. If you have any ideas let me know!! I plan to call one of our 7000 associates and see if he has anyone in his church. He will begin his rehab at Project Walk and as able start working at Fullsail. You have no idea how tiring even the least bit of stuff is to him so please pray that his transition to the next unit is smooth, with a great roommate, and a bit more tolerance in others.
As for the home front, our chickens continue to be a delight. Two Monday's ago we went to the cattle auction in Thomaston. Talk about not having a clue - that'd be Rick and I!! Anyway we ended up with a nice black angus baby bull (4-5 months) that was grass fed, no antibiotics etc from our close neighbor. We had tried to buy a cow from him and he said he'd call when he took it to auction. Thank goodness he was there to help us interpret Georgia auctioneer language. I have a pretty good ear for real southern, but I could not understand a word they were saying. Well, wouldn't you know that a guy that was shooting the breeze with us at the auction was trying to decrease his herd size and had several mom cows and babies he was trying to sell. We went and looked and there was a beautiful mom and baby black cows with these great black and white faces. We made the big corporate farm decision and bought them. when we went back to pick them up in our new cow trailor, we didn't know we were suppposed to have something on the floor so the cows would not slip. Oh well- have money , got cows, gotta go! Thank goodness the guy selling them to us knew cows and had them in the barn ready to load. Well, the mom got in (and by the way, up close , that was the biggest cow I have ever seen--1500 lbs??) and got spooked and started sliding around and then got out. Trying to get her back in with her baby was certainly stretching me. Well they are both loaded and now we have to drive home with a very freaked out 1500 lb cow slipping and sliding (oh- did I mention she had diarrhea by now) and I am just praying she doesn't slide and crush her baby. Prayer is awesome and we made it home with two live cows who jumped out into the woods not to trust us again. Rick has been slowly going out 2 times per day with sweet feed and getting them used to him and their favorite food. I took a Dairy Science class when I went to Clemson in 1975 and the only thing I remembered is "cows are creatures of habit". I certainly missed my animal calling as I love structure and habit!! Just another note, I thought I might want to major in Dairy Science which is hilarious since I was a pure city girl. OH well, some things go in a circle. Anyway - lots of fun coming up. Our daughter and her family and our son are coming today to visit for weekend. Then we get to keep our 2 granddaughters (ages 1 and 3) for 5 days.
We appreciate all of your prayers and interest in this chapter of our lives.
love to all
mary pat
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