Dake is feeling much better. He slept until 12:30 p.m. today. He is still having pain in his side but it is better too. I think that the side pain and the passing out were to seperate events. I did call the local cardiologist and they made a report of today's events and said to call if they happen again. At this point we do not know what caused today's episodes.
When the dust settled and Dake was resting, the phone rang. It was the doctor from Johns Hopkins. They are ready for Dake to come and start the administration of the heart drug or placebo. The new dates to return to Baltimore is June 20th and June 21st. So we are in the act of starting all over again and get the preparations ready on this trip. The return trip came a little earlier than we anticipated but we are ready. Please pray for our return trip and to find the cause of today's events with Dake. I do not know rather I want to pray Dake gets the real drug or the placebo.....so God this one is for you! (after six months everyone will get the real drug)
I have an artshow I am trying to get ready for in between all these "episodes". It is this weekend at the Factory in Franklin, Tennessee. The show is called ARTFUSION and the dates are June 3rd and 4th. I am going into this show not completely prepared. The tornado relief and Dake's research slowed my efforts down quite a bit. But I would much rather be little less in the show because I praise God for the time spent this last month with the tornado victims and the opportunities that have opened up for Dake! Yay God! and Thank you!
Tuesday, May 31, 2011
Monday, May 30, 2011
Memorial Day 2011
Today is the day of remembering and honoring those who have fought for our freedom. What a wonderful legacy to give your friends and family to know your efforts allowed this amazing thing we called freedom. In my own family I have so many to thank but also outside of my family...To all who have served and are serving now.....please accept my humble thank you.
David, Dake and I cooked out. We invited mom and dad over.
Dake had called another friend who was not home. We enjoyed a nice meal and conversation. I really enjoy having Mom and Dad in the same town. Most of our married life my Mom and Dad have lived 12 to 15 hours away. So the fact we can do these things now is the best.
Early this morning, 3:00 a.m. to be exact, we get a phone call. You know that phone call that wakes you up out of a dead sleep and your heart jumps to your throat. It rang once and I was up on my feet standing next the night stand. I could have just reached over but because of the shock of the ring I jumped up. It was silent and them this precious little voice says "momma?" My heart is pounding. She tells me her legs and arm are hurting and wants to know what to do. Knowing the only phones at camp are available about 300 yards from her cabin, I ask if she is by herself. (She is the child of mine that would have ventured out by herself to call me. She is a determined little girl. ) She said her counselor was with her.(SIGH) I told her she would have to go to the nurse because I had left the medicine with her. I asked her if she was OK....she replied in a matter a fact way, "yeah, momma!"
Later in the day I called the camp director to find out if she was OK. He said she was fine and went right to sleep after her medicine. I must admit. David and I did not go right back to sleep. Ugggh.
Dake said to me right before he went to bed last night, "Mom did you remember to take Gracey's medicine for her legs?" He was missing her too and trying to remember if we got everything she needed. (Gracey has leg pain when she over extends her joints. She has had problem with it since she was a baby but at least now she can verbalize it now. The doctor's thought she might have Juvenile Arthritis. But thankfully she tested negatively for it. Nonetheless, she does have pain often.)
Dake did say it was quite around the house today. He and Gracey has their routine of listening to music together or watching movies together. Gracey pops microwave popcorn and gets them some Kool Aid and pulls a stool up next to him and they watch a movie. He started this with her when she was small and now it is a regular tradition. Dake will watch usually what she wants and enjoys these moments with her. She does definitely know how to push his buttons and vice versa but they do have some really sweet moments too.
David, Dake and I cooked out. We invited mom and dad over.
Dake had called another friend who was not home. We enjoyed a nice meal and conversation. I really enjoy having Mom and Dad in the same town. Most of our married life my Mom and Dad have lived 12 to 15 hours away. So the fact we can do these things now is the best.
Early this morning, 3:00 a.m. to be exact, we get a phone call. You know that phone call that wakes you up out of a dead sleep and your heart jumps to your throat. It rang once and I was up on my feet standing next the night stand. I could have just reached over but because of the shock of the ring I jumped up. It was silent and them this precious little voice says "momma?" My heart is pounding. She tells me her legs and arm are hurting and wants to know what to do. Knowing the only phones at camp are available about 300 yards from her cabin, I ask if she is by herself. (She is the child of mine that would have ventured out by herself to call me. She is a determined little girl. ) She said her counselor was with her.(SIGH) I told her she would have to go to the nurse because I had left the medicine with her. I asked her if she was OK....she replied in a matter a fact way, "yeah, momma!"
Later in the day I called the camp director to find out if she was OK. He said she was fine and went right to sleep after her medicine. I must admit. David and I did not go right back to sleep. Ugggh.
Dake said to me right before he went to bed last night, "Mom did you remember to take Gracey's medicine for her legs?" He was missing her too and trying to remember if we got everything she needed. (Gracey has leg pain when she over extends her joints. She has had problem with it since she was a baby but at least now she can verbalize it now. The doctor's thought she might have Juvenile Arthritis. But thankfully she tested negatively for it. Nonetheless, she does have pain often.)
Dake did say it was quite around the house today. He and Gracey has their routine of listening to music together or watching movies together. Gracey pops microwave popcorn and gets them some Kool Aid and pulls a stool up next to him and they watch a movie. He started this with her when she was small and now it is a regular tradition. Dake will watch usually what she wants and enjoys these moments with her. She does definitely know how to push his buttons and vice versa but they do have some really sweet moments too.
Sunday, May 29, 2011
First Over Night Camp
We just got home from taking Gracey to her first over night gymnastic camp. She is three and a half hours away.
She was so excited.
David and I just drove her up there and dumped her out and simply drove away. Well, maybe not quite. We drove her up there and got her settled and hung around for 3 1/2 hours ...then David took me dragging and screaming.....Well, close but not exactly.....It was hard to leave her but she was happy and excited. So that is good. Right? She is happy,.... now RUN, RUN fast....RUN and don't look back...."Remember Lot's Wife!"
I was actually doing pretty well until today at church they announced that everyone would be moving to their new class. (they will move to the grade they would be in starting in the fall...she would move to the fifth grade classroom) I asked her where her new class would be and she said "upstairs", I said "Upstairs! Only the old people (David and I go upstairs) and old kids go upstairs...." Then she said ,matter of fact like, "yeah!" I might have made it but that just pushed me over the edge.
Nonetheless I did leave her at camp and did manage to drive away...
.Letting go is not my favorite part of mothering! David said, "Maybe she could just stay a month?" He acts tough but I know better...He got in a second kiss and hug before he left.
She was so excited.
David and I just drove her up there and dumped her out and simply drove away. Well, maybe not quite. We drove her up there and got her settled and hung around for 3 1/2 hours ...then David took me dragging and screaming.....Well, close but not exactly.....It was hard to leave her but she was happy and excited. So that is good. Right? She is happy,.... now RUN, RUN fast....RUN and don't look back...."Remember Lot's Wife!"
I was actually doing pretty well until today at church they announced that everyone would be moving to their new class. (they will move to the grade they would be in starting in the fall...she would move to the fifth grade classroom) I asked her where her new class would be and she said "upstairs", I said "Upstairs! Only the old people (David and I go upstairs) and old kids go upstairs...." Then she said ,matter of fact like, "yeah!" I might have made it but that just pushed me over the edge.
Nonetheless I did leave her at camp and did manage to drive away...
.Letting go is not my favorite part of mothering! David said, "Maybe she could just stay a month?" He acts tough but I know better...He got in a second kiss and hug before he left.
Saturday, May 28, 2011
Phillip Comes to Visit
Phillip has come to spend the weekend with Dake. Phillip lived with us for three years. He wantted to spend more time with Dake. Dake and Phillip have been friends since they were both six. They meet soon after Dake was diagnosed. We moved two doors down from them after Dake was diagnosed because we needed a pool. The best therapy for a Duchenne Muscular Dystrophy boy is swimming .Swimming and being in the water takes the weight off the muscles. (An interesting tidbit: Boys with Duchenne Muscular Dystrophy tend to float more then the average child. So we had to weigh him down with aqua weights to keep him from floating.) So when they actually stop walking they can revisit the experience in the water. We moved into the house down from Phillip and his family and connected with their family for a lifetime. Rita, Phillip's mother, was a lifesaver for me during this difficult time and while we were trying to adjust to the diagnoses. Philip's brother, Evan and Lyndsey are the same age. The four of them were inseparable for years. If they were not together at our house, they were at Rita's house. The bond between the four of them last strong today. Theycontinue to be important friends in each other lives even with distance between them. Their friendship is a beautiful thing to watch.
Ok, I am suppose to post something mean about Dake today because he kept picking on me today and I told him if he did not stop I would post something embarrassing. Ok, here it is .....sometimes during the day when he gets sleepy Dake likes to go to the garage and take a nap in the warmth of the garage.....like a cat. .....meow Dake....
Ok, I am suppose to post something mean about Dake today because he kept picking on me today and I told him if he did not stop I would post something embarrassing. Ok, here it is .....sometimes during the day when he gets sleepy Dake likes to go to the garage and take a nap in the warmth of the garage.....like a cat. .....meow Dake....
Friday, May 27, 2011
Visit from the Social Worker
Today Dake's social worker came for her monthly visit. She comes to check if the home health groups are doing their jobs to his liking and if there is any changes that need to be made. We actually have two home health groups. Two ladies come with each group. When we first started to try to get help through the state with Medicaid and we were turned down repetitively. It was very frustrating and physically exhausting for David and me. Dake, Phillip, Gracey and myself went to Montgomery and fought the state and finally won.
When I am by myself I lift Dake to use the commode but the problem comes in when trying to lift him and pull his pants up at the same time. When he was a senior in high school he stopped being able to put weight on his legs. So from then on we were working with dead weight. In high school, he barely weighed 100 lbs. and we were constantly trying to entice his appetite. He was on a cancer drug for appetite for about 3 years.....then after 3 years and stopping the drug the weight came....he added about 75 lbs to his already 100 lbs and new problems arose. Home Health was insistant they were only sending one person. I said, "It cannot be done. This is why were were asking for help in the first place....I cannot do it alone." They assured me they were professionals and could do it. After about two tries home health understood what I had been trying to say and started implementing two workers. The social worker set us up with two different groups because to bathe Dake and get him ready in the morning is extremely physical and stress on the body even with hoyer lift and shower chair. The two groups have been a good idea and I am thankful the social worker thought of it at the beginning.
For the times, I am by myself and he needs to visit his friend "John", I will call my mother who lives across the street to come help me. Or, if Gracey is here she can help. Poor Dake he has to schedule an appointment just to visit "John". My mother has been so wonderful to plan her schedule and live around our needs. She has been a saving grace for us.
When Dake was in high school he had fallen out of his chair while in class. He was in driver's education with a bunch of football players. Lyndsey had walked by going to her next class and saw where he had fallen out of his chair. The football players had worked and stuggled to try to get him back in his chair with no luck. Lyndsey, still in conversation with a friend just stopped picked him up and plopped him back in his chair and left still talking to her friend. The football guys just stood there with their mouths open in awe. It was great!
When I am by myself I lift Dake to use the commode but the problem comes in when trying to lift him and pull his pants up at the same time. When he was a senior in high school he stopped being able to put weight on his legs. So from then on we were working with dead weight. In high school, he barely weighed 100 lbs. and we were constantly trying to entice his appetite. He was on a cancer drug for appetite for about 3 years.....then after 3 years and stopping the drug the weight came....he added about 75 lbs to his already 100 lbs and new problems arose. Home Health was insistant they were only sending one person. I said, "It cannot be done. This is why were were asking for help in the first place....I cannot do it alone." They assured me they were professionals and could do it. After about two tries home health understood what I had been trying to say and started implementing two workers. The social worker set us up with two different groups because to bathe Dake and get him ready in the morning is extremely physical and stress on the body even with hoyer lift and shower chair. The two groups have been a good idea and I am thankful the social worker thought of it at the beginning.
For the times, I am by myself and he needs to visit his friend "John", I will call my mother who lives across the street to come help me. Or, if Gracey is here she can help. Poor Dake he has to schedule an appointment just to visit "John". My mother has been so wonderful to plan her schedule and live around our needs. She has been a saving grace for us.
When Dake was in high school he had fallen out of his chair while in class. He was in driver's education with a bunch of football players. Lyndsey had walked by going to her next class and saw where he had fallen out of his chair. The football players had worked and stuggled to try to get him back in his chair with no luck. Lyndsey, still in conversation with a friend just stopped picked him up and plopped him back in his chair and left still talking to her friend. The football guys just stood there with their mouths open in awe. It was great!
Thursday, May 26, 2011
Official Word
We received official word today Dake is eligible for the study at Johns Hopkins Hospital. This news is bitter sweet. We pretty much knew going in he was eligible but this also confirms, with a second opinion, his heart has declined enough to participate. Oh well, I cannot dwell on this....thankful for the first time in a long time we have some hope again. This is the first study in about 15 years that has offered us hope.. It is far from a cure but it is hope. Days without hope are hard. Dake has suffered with DMD for 21 years that we were aware of it. The last 10 years have been the hardest.
Right now the attentive dates are in mid July for him to enter the hospital and start the administration of the drug or placebo.
Dake has needed a haircut for the last two weeks. Dake is VERYpicky about his hair and takes pride in how it looks. I think, in part, this is one thing left he can control. I use to cut his hair all the time until I finally got to the point he was driving me crazy. He gets in the OCD mode when he is getting a haircut. Getting haircuts for him have always been an ordeal. When he was young, he insisted it hurt when the hair was getting cut. Drama...drama....I was ready early on to let him be a hippie and grow it long. David was not so much in favor of it.
Today he really wanted to get it cut but is still a little tired for the trip. He did not want to get out and get it cut. He asked me if I would cut it? I agree with a few stipulations.
1)Do not repeat the instructions to me of how he wanted it. Part of the OCD part.
2) No complaining on how long it took me.
3) no mirror until I finished. (Big NO! NO! to have him watch me cut his hair.)
He agreed and I cut in outside on our deck as he watched Gracey jump on the trampoline and her chase the dog, "Crayola" (our wild dalmation) and "Mona Lisa" (our calm great dane). This helped take his mind off what I was doing. Thanks Gracey! All in all he did well...and he was pleased.
Right now the attentive dates are in mid July for him to enter the hospital and start the administration of the drug or placebo.
Dake has needed a haircut for the last two weeks. Dake is VERYpicky about his hair and takes pride in how it looks. I think, in part, this is one thing left he can control. I use to cut his hair all the time until I finally got to the point he was driving me crazy. He gets in the OCD mode when he is getting a haircut. Getting haircuts for him have always been an ordeal. When he was young, he insisted it hurt when the hair was getting cut. Drama...drama....I was ready early on to let him be a hippie and grow it long. David was not so much in favor of it.
Today he really wanted to get it cut but is still a little tired for the trip. He did not want to get out and get it cut. He asked me if I would cut it? I agree with a few stipulations.
1)Do not repeat the instructions to me of how he wanted it. Part of the OCD part.
2) No complaining on how long it took me.
3) no mirror until I finished. (Big NO! NO! to have him watch me cut his hair.)
He agreed and I cut in outside on our deck as he watched Gracey jump on the trampoline and her chase the dog, "Crayola" (our wild dalmation) and "Mona Lisa" (our calm great dane). This helped take his mind off what I was doing. Thanks Gracey! All in all he did well...and he was pleased.
Wednesday, May 25, 2011
A Day to Chill OUT
Today my thoughts and heart were constantly with the Gilliams and Jim Waltrous. We continue to pray for their recovery.
Today was a day to relax and get caught up. Of course, to unpack and get everything back in order, one of my least favorite things to do. Dake rested really well last night and David said he had to turn him only once. This is a rarity. But we will take it for sure. Nothing like being in your own bed.
This morning the ladies from home health came and told me his blood pressure was extremely low. I went to check him and he was still wanting to get up. So we had him get up and bathe and rechecked him. Once he was up and going he did fine. He has had a couple of episodes of passing out in the last 3 months and we are not for sure what is going on. He has had a couple of nurses check him out and 2 doctors but they are not sure what is exactly going on. This is during the time we got the report about his heart function not doing as well. We wonder if this is the problem but unless the doctors and nurses can actually catch it as it happens then they cannot completely find the problem. Nonetheless, today was fortunately NOT one of those days and we are thankful.
I think the travel and all caught up with David and me today. We both seemed to be dragging a bit.
Gracey surprised us with a cake she and GaLou had bake us. Gracey had decorated it with the words, WELCOME HOME! Gracey also gave each of us a special handmade card with a sweet message in them. She made Dake's with a drawing of a MRI machine. Dake was afraid to open it. But the note was encouraging inside. We heard from Lyndsey on the phone. She has had a hard time not being with us during this time. It was good as always hearing from her.
Today was a day to relax and get caught up. Of course, to unpack and get everything back in order, one of my least favorite things to do. Dake rested really well last night and David said he had to turn him only once. This is a rarity. But we will take it for sure. Nothing like being in your own bed.
This morning the ladies from home health came and told me his blood pressure was extremely low. I went to check him and he was still wanting to get up. So we had him get up and bathe and rechecked him. Once he was up and going he did fine. He has had a couple of episodes of passing out in the last 3 months and we are not for sure what is going on. He has had a couple of nurses check him out and 2 doctors but they are not sure what is exactly going on. This is during the time we got the report about his heart function not doing as well. We wonder if this is the problem but unless the doctors and nurses can actually catch it as it happens then they cannot completely find the problem. Nonetheless, today was fortunately NOT one of those days and we are thankful.
I think the travel and all caught up with David and me today. We both seemed to be dragging a bit.
Gracey surprised us with a cake she and GaLou had bake us. Gracey had decorated it with the words, WELCOME HOME! Gracey also gave each of us a special handmade card with a sweet message in them. She made Dake's with a drawing of a MRI machine. Dake was afraid to open it. But the note was encouraging inside. We heard from Lyndsey on the phone. She has had a hard time not being with us during this time. It was good as always hearing from her.
Tuesday, May 24, 2011
Back Home Finally
I would like to start out tonight by asking for prayers for Beth Gilliam and her family. Tomorrow she has breast surgery. This is such a wonderful family and my heart hurts for the struggles they are facing.
I have said it once and I imagine I will say many more time. "No matter how will prepared you are for a trip when traveling with a handicap individual something always goes wrong." You just get to the point you expect it. This morning we had our breakfast and get the call our shuttle would be at the hotel to take us to the airport in four minutes. I had reserved the round trip shuttle when we arrived at the airport. The lady who took our reservations saw Dake and knew because we requested a handicap vehicle for our round trip service. At 7:45 am the shuttle arrives. It is ten minutes early which made me smile. We were ready to get home. We the driver comes around to help us in he gets this surprised look on his face and said is he going? He was pointing to Dake. Of course, at this point David and I had realized it did not have a handicap lift .
After many phone calls to this service and many other services we could not find a handicap accessible van available until 10:00 am. Our plane leaves at 10:25. The lady who took our reservation must have thought Johns Hopkins was going to heal Dake between shuttle rides. I appreciate her optimism but not so lucky. We checked on later flights but none available on this airline. I began telling people what was going to be done instead of nicely asking. Knowing David was a master in these situation I let him take over on the phone. After an hour and a half a taxi arrives. It is 9:11 and we still had a 20 minute drive. David literally had to hold Dake in his chair but we arrive at the airport at 9:30. We did not check any bags but still need to get our boarding passes. We had paid extra for priority boarding so we have extra time to board the airplane. This is a common for the elderly and handicap to board early. Yes, they do charge for this now. It use to be a courteous. We rush to security and it is backed up. Soon we learned they put Dake in the wrong line. So the mother in me has him break line in the neighboring line and David follows him. The others in the line where not happy but did comply. Thank goodness. I finish thru my line and was putting on my shoes.....(note to self....don't wear toe shoes when you are in the airport and in a hurry. It is hard to get all your piggies in place.) After getting my stuff rearranged I could not find David and Dake. Baltimore is a big airport and security has about twenty lines going at once. Finally, I see them they are where I left them when we cut line. It is about 10:00 now. So I waved David down and mouthed to him I was going to the gate to tell them they were on the way. Off to the gate 21, my thought while running thru the airport was why 21 and not 1 or 2 or even 12. Arrived at the gate after running my marathon for the day and explain to the flight attendant what was going on. She shook her head as she scanned the passengers boarding passes. They were already boarding our group. Four more groups have boarded still no David and Dake. Then they are currently boarding the last group. The last group was a group of children who were very nice but were new to the flying experience and it slowed things down a bit. Thank goodness! I see Dake in high gear and David in a slight jog beside him. SIGH.... All is well...... until they are ready to take Dake's chair. The luggage man said, "We cannot fit this chair under the plane." I must admit I am in high gear at this point. I told him, "they put it on there coming to Baltimore." He said, "I am just saying I don't think it will fit. " He had been instructed already the seat did not fold forward. So he determined it would not fit. I repeated what I said again. The man said, "So, if I can get it on what do you want me to do with it?" At this point, I was ready to get up in this man's face and shake him. I thought what do you mean WHAT DO I DO WITH IT? David just says firmly, "You WILL get it on. And NOT bend the seat!"
We boarded the plane....last.....then got stuck on the run way for 20 minutes.....You just gotta laugh!
WE ARE HOME NOW.....HALLELUJAH! Dake took a long nap after getting home. And finally got all my piggies in the right place. Ha ha!
We now wait a week and find out Dake's results.
I have said it once and I imagine I will say many more time. "No matter how will prepared you are for a trip when traveling with a handicap individual something always goes wrong." You just get to the point you expect it. This morning we had our breakfast and get the call our shuttle would be at the hotel to take us to the airport in four minutes. I had reserved the round trip shuttle when we arrived at the airport. The lady who took our reservations saw Dake and knew because we requested a handicap vehicle for our round trip service. At 7:45 am the shuttle arrives. It is ten minutes early which made me smile. We were ready to get home. We the driver comes around to help us in he gets this surprised look on his face and said is he going? He was pointing to Dake. Of course, at this point David and I had realized it did not have a handicap lift .
After many phone calls to this service and many other services we could not find a handicap accessible van available until 10:00 am. Our plane leaves at 10:25. The lady who took our reservation must have thought Johns Hopkins was going to heal Dake between shuttle rides. I appreciate her optimism but not so lucky. We checked on later flights but none available on this airline. I began telling people what was going to be done instead of nicely asking. Knowing David was a master in these situation I let him take over on the phone. After an hour and a half a taxi arrives. It is 9:11 and we still had a 20 minute drive. David literally had to hold Dake in his chair but we arrive at the airport at 9:30. We did not check any bags but still need to get our boarding passes. We had paid extra for priority boarding so we have extra time to board the airplane. This is a common for the elderly and handicap to board early. Yes, they do charge for this now. It use to be a courteous. We rush to security and it is backed up. Soon we learned they put Dake in the wrong line. So the mother in me has him break line in the neighboring line and David follows him. The others in the line where not happy but did comply. Thank goodness. I finish thru my line and was putting on my shoes.....(note to self....don't wear toe shoes when you are in the airport and in a hurry. It is hard to get all your piggies in place.) After getting my stuff rearranged I could not find David and Dake. Baltimore is a big airport and security has about twenty lines going at once. Finally, I see them they are where I left them when we cut line. It is about 10:00 now. So I waved David down and mouthed to him I was going to the gate to tell them they were on the way. Off to the gate 21, my thought while running thru the airport was why 21 and not 1 or 2 or even 12. Arrived at the gate after running my marathon for the day and explain to the flight attendant what was going on. She shook her head as she scanned the passengers boarding passes. They were already boarding our group. Four more groups have boarded still no David and Dake. Then they are currently boarding the last group. The last group was a group of children who were very nice but were new to the flying experience and it slowed things down a bit. Thank goodness! I see Dake in high gear and David in a slight jog beside him. SIGH.... All is well...... until they are ready to take Dake's chair. The luggage man said, "We cannot fit this chair under the plane." I must admit I am in high gear at this point. I told him, "they put it on there coming to Baltimore." He said, "I am just saying I don't think it will fit. " He had been instructed already the seat did not fold forward. So he determined it would not fit. I repeated what I said again. The man said, "So, if I can get it on what do you want me to do with it?" At this point, I was ready to get up in this man's face and shake him. I thought what do you mean WHAT DO I DO WITH IT? David just says firmly, "You WILL get it on. And NOT bend the seat!"
We boarded the plane....last.....then got stuck on the run way for 20 minutes.....You just gotta laugh!
WE ARE HOME NOW.....HALLELUJAH! Dake took a long nap after getting home. And finally got all my piggies in the right place. Ha ha!
We now wait a week and find out Dake's results.
Heading Home
We are heading home. I am sure Dake is ready for his own bed. Now we have to wait a week and hear back from Kennedy Krieger to make sure Dake qualifies for the study under their test.
We cannot even begin to express the gratitude for all the wonderful encouragement. It has helped us so much....off to the airport.....
Coming home Gracey!!!!
We cannot even begin to express the gratitude for all the wonderful encouragement. It has helped us so much....off to the airport.....
Coming home Gracey!!!!
Monday, May 23, 2011
My Girls (and a extra kid)
Missing my girls....we usually conquer these obstacles all together as a family....We are still conquering them together in heart ... just apart physically....love you both. See you tomorrow Gracey! I am glad you are having a good time with GaLou and Pops.
The Day of Test at Kennedy Krieger Institute
Today was full of test. We arrived at the Kennedy Krieger Institute a little early and was quickly placed in a room. They had a table which Dake laid on and was weighed. We were so glad to get an accurate weight. We had not been able to weigh him since 2008. His chair weighs 357 lbs. and plus his weight makes finding a scale to hold all this weight hard to come by.
We were greeted then by Dr. Genila Bibat, the research coordinator. She asked additional questions and had Dake sign the consent form to give his permission to do this study. The neurologist, Dr. Wagoner, came in asked additional questions and had her nurse come in and draw blood. The nurse first tried to draw blood out of his hand and had no luck. Then he tried in Dake's arm and had no luck. So back to the hand and still had no luck. Then he moved to the top of the foot and was able to get a little blood but not all he needed. (I have to admit this gave me the hee-bee-jee-bees...) The neurologist had him stop and run just the minimum test to make do.
We have never meet a neurologist who was not irrogant and honestly obnixous until today. What a wonderful surprise to meet a neurologist so down to earth and generally nice. She talked directly with Dake and explained everything about the research and the study. She eased his mind on some issues concerning him. (And David and my concerns as well.) The most exciting news she shared today was she said when this drug was administered in the dmx mouse (mouse genetically reproduced to have Duchenne Muscular Dystrophy for research) did not only held the mouse's heart stable but strengthened it....AND it strengthen all the muscles in the body because the drug when all through the body. How exciting this news was to hear!!!
Another bit of side bit news. Dake is going to be in my nephews wedding in June and he was measured for his tux. After being measured, Dake nearly went into shock when he heard his pant size and declared she must have made a mistake measuring him. All that said, the neurologist told him today she did not think all of his stomach was fat. She thought he had extra fluid there and when he gets the drug administered in the hospital she would check into it further....( I wish that would happen in my case.) He was so excited. David is always teasing Dake about his stomach so when she said this he turned to David and said, "So Dad, what's your excuse! Mine is just fluid!"
We ate quickly in the cafe at the KKI and then went into another building for the MRI of the heart. They had to inject a contrast into his veins to see the function of his veins. So this means more sticking. We explained the difficulty we had earlier so they called the best two nurses to come in and handle this....they stuck him in the arm no luck, then in the left foot no luck, then back to the right foot and 30 minutes later...... (same foot used earlier), BINGO! But not without Dake screaming like a girl! (His description, not mine. I wanted him to scream louder.)
We were told it would take about an hour. They started the MRI and after about an hour they ask me to come in and comfort him. I removed my jewelry and sat at his head. After about 20 minutes I went to cross my legs and my sandal flew and hit the end of the MRI machine. Realizing my shoes had metal in them and they were going to fly off and hit Dake in the head. I held them down until they came in to reposition him and I quickly removed them from the room. Whew! My underwire bra tingled but luckily it did not fly off and hit the end of the machine or Dake in the head. What an experience that would have been! YIKES!
They had him take a deep breath, release, and hold his breath for about 12 seconds for 20 times or more. I think I echoed his breathes each time. This exhausted him. The next hour past and they repositioned him and added the contast for the last part of the test. At this point Dake was extremely tired.
Remember the MRI was to take approximately one hour. At this point we were into the second hour. They told him only 30 more minutes. Dake makes it ok through the first 10 minutes and then he begins to panic. I try to calm him down repeatively. I tell him remember this is why you had to be stuck again and we definetely want to repeat that again. The panic attack was full blown at this time.
I so need Lyndsey at this point.....she can get up in his face and back his fears back down. Unfortunately, I could not get up in his face. I could not even slap him! Not that I would but I could not get him to focus.... They came in to check on him and said just 10 more minutes....so again we tried. I rubbed his legs because he was insistant he needed them rubbed. So I rubbed and he would shake his foot and I would run back to his head and tell him to be still just 10 more minutes. Finally after 2 hours and 45 minutes the one hour MRI was over.
Dake has decide he does not want to be in a casket when he dies but rather put him in a boat an float him down the river. But please don't set him on fire.
Finally we are back at the hotel, we went to eat and he literally had to be fed tonight because he was so exhausted....he could not lift his arms.
All and all he is excited and wants to move forward with his quest!
Sleeping.......NOT
Dake has not been able to turn over in bed since approximately 2001. David and I use to alternate nights turning him during the night. We can turn him up to 3 - 15 times a night. Now that Dake is 70 pounds heavier I can not turn him. He is to heavy for me physically to turn. I can adjust his arms and legs for him because he is not able to move them on his own but not turn him. David now turns him all the time. I hate I am not able to help David with this anymore. David is truly an amazing man. You would never know what time and what sacrifice he puts into his son. He turns him all during the night and then gets up at 4:00 a.m. on an average day.
Dake did not sleep well last night. I don't know for sure if it was nerves or the travel or the strange bed. Probably it was all the above.
Despite the rough night, Dake did wake up well this morning and was ready to get the show on the road.
Dake did not sleep well last night. I don't know for sure if it was nerves or the travel or the strange bed. Probably it was all the above.
Despite the rough night, Dake did wake up well this morning and was ready to get the show on the road.
Sunday, May 22, 2011
Settled In Our Room
We have gotten settled in our room. The flight here was over all fairly pleasant. Dake had some comfort issues but did ok. We were placed in the back of the airplane which created some obstacles. (Usually, we are placed in the front or close to it.) The main obstacles came once we got to Baltimore. When a wheelchaired flyer, who has no mobility, the airlines will have them transfer to what it called an aisle seat. This is a narrow seat with wheels with no sides to help you get down the aisle. The fact, it has no sides is where we had problems. Dake has lost most of his core strength and needs assistance so he does not fall over if placed in new seat. Because the aisles are so narrow on the plane means no one can hold on to him. When we got to Baltimore we waited until everyone departed the plane. This young man who barely could speak understandable English came in with the chair. David placed
Dake in the aisle chair and we put the seat belt on. The seat belt for his legs did not work and Dake's legs flopped open hitting the airplane seats as he started out. David held his legs together and slowly backed out with the assistant. The young man must had a hard time understanding English or maybe Southern English because as he started to move Dake's arms would fall down causing him again to hit the seats as they moved. He kept telling Dake, "Hold your arms!, HOLD YOUR ARMS! " We tried to explain but the comprehension was not there. So I grabbed all the luggage and David alternated holding his legs and arms and we slowly departed off the plane. Poor David's back. Poor Dake.
When we finally got to his wheelchair we noticed the side lateral support was bent in and not at all where it was suppose to be. We had just purchased these and the cost was around $600.00 each. We bent it as much as we could to get him in the chair but it was causing a pinch for him under his arm. David and I think we can fix it but we need a metric allen wrench. (we normally keep one in his chair backpack but because we were going to have to go thur security we chose to keep it at home.) Knowing our transportation will be limited we will have to figure something out. After getting to the room several hours later David was able to bend it enough without having it pinch him all the time. At this point Dake is really tired.
Dake was somewhat agitated and beginning to get grumpy. (understandably so) We finally got to the room and he laid down to take a nap and was extremely restless. We were constantly adjusting and turning him. I hope that is not a reflection on the tonight's rest.
We have eaten at the hotel and returned to room hoping for a restful night..The Johns Hopkins shuttle will be here bright and early. Please pray he sleeps well because he has a full day of test tomorrow.
We heard from Gracey thru an email and she said she had had two cupcakes already and staying busy. Sounds like Galou and Pops are doing an awesome job. I am not calling her tonight because it will upset her as we get close to bedtime...I know it will upset me at least.
Dake in the aisle chair and we put the seat belt on. The seat belt for his legs did not work and Dake's legs flopped open hitting the airplane seats as he started out. David held his legs together and slowly backed out with the assistant. The young man must had a hard time understanding English or maybe Southern English because as he started to move Dake's arms would fall down causing him again to hit the seats as they moved. He kept telling Dake, "Hold your arms!, HOLD YOUR ARMS! " We tried to explain but the comprehension was not there. So I grabbed all the luggage and David alternated holding his legs and arms and we slowly departed off the plane. Poor David's back. Poor Dake.
When we finally got to his wheelchair we noticed the side lateral support was bent in and not at all where it was suppose to be. We had just purchased these and the cost was around $600.00 each. We bent it as much as we could to get him in the chair but it was causing a pinch for him under his arm. David and I think we can fix it but we need a metric allen wrench. (we normally keep one in his chair backpack but because we were going to have to go thur security we chose to keep it at home.) Knowing our transportation will be limited we will have to figure something out. After getting to the room several hours later David was able to bend it enough without having it pinch him all the time. At this point Dake is really tired.
Dake was somewhat agitated and beginning to get grumpy. (understandably so) We finally got to the room and he laid down to take a nap and was extremely restless. We were constantly adjusting and turning him. I hope that is not a reflection on the tonight's rest.
We have eaten at the hotel and returned to room hoping for a restful night..The Johns Hopkins shuttle will be here bright and early. Please pray he sleeps well because he has a full day of test tomorrow.
We heard from Gracey thru an email and she said she had had two cupcakes already and staying busy. Sounds like Galou and Pops are doing an awesome job. I am not calling her tonight because it will upset her as we get close to bedtime...I know it will upset me at least.
Arrived in Baltimore, MD
We arrived in Baltimore safely and now at a McDonald's waiting for our room at the hotel to be ready. Traveling went well except for one piece on Dake's chair is a little out of whack....we need a metric allen wrench. Hopefully we can locate one. But all in all it is good....
Saturday, May 21, 2011
The Count Down Has Started
We are busy with the normal packing routine today. I have made copies of medical records and such for the days ahead. Dake....he is still in bed and enjoying time in his comfort zone. He will need the added rest for the days to come. Travel is exhausting for him. We plan to leave early in the morning. Our flight leaves at 7:00. We will need to leave earlier than most to get the regular check in stuff but to also get his chair checked in and get him comfortably in a seat on the plane...I always have a little apprehension about flying with his chair. The chair itself is a $27,000.00 vehicle. We have had damage up to $900.00 in the past because the airlines was determined to fold the chair that was not made to do so...
Friday, May 20, 2011
Days Leading Up To Our Trip.
The days leading up to the trip are nothing less then total chaos.
On Thursday, Lyndsey was to fly into Birmingham to be excorted by us to Tuscaloosa for an interview. Gracey, Dake and I were only 15 minutes from the airport and I get a call from Lyndsey announcing she had missed her flight because security in the Houston Airport had detained them of over 40 minutes. This was at 11:00 and her interview was at 4:00 in Tuscaloosa, another hour away. Many flights were just canceled because of the security's actions.
So the domino effect of phone calls began....finally from work David was able to get her a flight leaving at noon but she had to get a connecting flight in New Orleans and then on to B'ham. This was to bring her in at 3:30. Interview at 4 and flight in at 3:30 and an hour drive equals OOPS....She calls the employer and they are so wonderful and told her to not stress and get here when she can.
With a slight sigh, I had to burn four and a half hours with Gracey and Dake. We shopped, we ate and we learned a valuable lesson. We were not able to find a family restroom. You know those restrooms that are far and few between that the whole family can go into all at once. These are so wonderful to the handicap population. So we find a secluded spot. This was so Dake could use his portable "ernie". (Ernie is a urinal, but we are not allowed call it a urinal because it just freaks him out. So we named it Ernie when he was in high school.)(We decided to share these intimate details so you can see us in our real settings and situations.) Lesson learned..Don't park on an incline when ernie is being used.....I will let you use your imagination for this one...
At 3:40, I had circled the airport for the last time to have Lyndsey jumped in and off to Tuscaloosa. As we make our mad dash west, Lyndsey is franticly changing her clothes and getting prepared for the interview...the phone rings....it is the employer who said they decide she might be stressed by all the events and rescheduled the interview for Friday at 9:00......Sigh the foot relaxed and life slowed down for a moment....
After arriving in Tuscaloosa and finding where her appointment would take place the next day. We start our hunt for a room for her to spend the night. After the fifth hotel of no vancancies we are becoming stressed again. Workers had come in to work on the tornado relief in the area. How wonderful but we need a room. Dake and Gracey and I had to go back to Athens because Gracey had fourth grade graduation at 8:00 on Friday. AFter a few calls we final find a room. After getting her settled the rest of us got home in Athens about 11 ish that night. What a crazy, long day. Make that an extreme long day!
On Thursday, Lyndsey was to fly into Birmingham to be excorted by us to Tuscaloosa for an interview. Gracey, Dake and I were only 15 minutes from the airport and I get a call from Lyndsey announcing she had missed her flight because security in the Houston Airport had detained them of over 40 minutes. This was at 11:00 and her interview was at 4:00 in Tuscaloosa, another hour away. Many flights were just canceled because of the security's actions.
So the domino effect of phone calls began....finally from work David was able to get her a flight leaving at noon but she had to get a connecting flight in New Orleans and then on to B'ham. This was to bring her in at 3:30. Interview at 4 and flight in at 3:30 and an hour drive equals OOPS....She calls the employer and they are so wonderful and told her to not stress and get here when she can.
With a slight sigh, I had to burn four and a half hours with Gracey and Dake. We shopped, we ate and we learned a valuable lesson. We were not able to find a family restroom. You know those restrooms that are far and few between that the whole family can go into all at once. These are so wonderful to the handicap population. So we find a secluded spot. This was so Dake could use his portable "ernie". (Ernie is a urinal, but we are not allowed call it a urinal because it just freaks him out. So we named it Ernie when he was in high school.)(We decided to share these intimate details so you can see us in our real settings and situations.) Lesson learned..Don't park on an incline when ernie is being used.....I will let you use your imagination for this one...
At 3:40, I had circled the airport for the last time to have Lyndsey jumped in and off to Tuscaloosa. As we make our mad dash west, Lyndsey is franticly changing her clothes and getting prepared for the interview...the phone rings....it is the employer who said they decide she might be stressed by all the events and rescheduled the interview for Friday at 9:00......Sigh the foot relaxed and life slowed down for a moment....
After arriving in Tuscaloosa and finding where her appointment would take place the next day. We start our hunt for a room for her to spend the night. After the fifth hotel of no vancancies we are becoming stressed again. Workers had come in to work on the tornado relief in the area. How wonderful but we need a room. Dake and Gracey and I had to go back to Athens because Gracey had fourth grade graduation at 8:00 on Friday. AFter a few calls we final find a room. After getting her settled the rest of us got home in Athens about 11 ish that night. What a crazy, long day. Make that an extreme long day!
Wednesday, May 18, 2011
Getting Ready
Finishing last minute details with the upcoming trip. Daker is calm and making silly jokes about everything as usual. I asked him if he was nervous...He said, "No it's not like they are going to cut off my leg or something."
The anixety for me is starting to come....been practicing my breathing techinques. I talked with JH this morning and they have worked out the problem with the shuttle. So all is good. Now I must breath.
The anixety for me is starting to come....been practicing my breathing techinques. I talked with JH this morning and they have worked out the problem with the shuttle. So all is good. Now I must breath.
Tuesday, May 17, 2011
The Journey Begins
Lots of preparation goes into traveling with one in a wheelchair. Travel is always a challenge no matter how well one plans. So hopefully we have covered all our bases and are ready to go.
Sunday, May 22, 2011, Dake, David and Lynn will fly into Baltimore Maryland to kick start Dake's new adventure. This trip will involve a neurological evaluation, blood, and urine collection. We start this process at 9am at the Kennedy Krieger Institute on Monday, May 23, 2011. Upon completion we will report to the Kennedy Krieger Institute for a Cardiac MRI at 1pm. This procedure will take approximately 2 hours.
Please remember us all in your prayers. Lyndsey was hoping to meet us in Baltimore but an unexpected interview thru a loop into our plans...This was an exciting loop but nonetheless she will not make this trip. Gracey will be staying with her grandparents.
Sunday, May 22, 2011, Dake, David and Lynn will fly into Baltimore Maryland to kick start Dake's new adventure. This trip will involve a neurological evaluation, blood, and urine collection. We start this process at 9am at the Kennedy Krieger Institute on Monday, May 23, 2011. Upon completion we will report to the Kennedy Krieger Institute for a Cardiac MRI at 1pm. This procedure will take approximately 2 hours.
Please remember us all in your prayers. Lyndsey was hoping to meet us in Baltimore but an unexpected interview thru a loop into our plans...This was an exciting loop but nonetheless she will not make this trip. Gracey will be staying with her grandparents.
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