Today is Sam's 2nd birthday. It is hard to believe that 2 years have gone by already. The expectations I had for my son certainly exceed the reality of where he is today. There are many many things that we are thankful for. Sam is able to go for very very long periods of time without suctioning. He is laughing more, playing more, moving more, he is sitting up independently. At this point I would have hoped that Sam would be eating even small amounts by mouth, crawling, babbling, etc... I would have hoped that at this time Sam would be fed 4 times a day by his tube without pain or discomfort. We are still trying to get to the bottom of Sam's feeding issues. We are still running every single day to doctors and therapists trying to find the best way possible to make Sam comfortable. We even had to cancel Sam's birthday party because he was in such distress when we fed him.
Yesterday we were at the hospital with Sam's GI doing an upper GI series and taking bloods. Today we are seeing a new neurologist to rule out other possible etiologies behind this feeding issue. So wish us luck and I will keep everyone posted via blog postings. I also apologize for not returning calls and talking on the phone but I hardly have the strength to keep running with Sam like this. I wish I could be more of a friend, a daughter, a sister, wife, etc... Right now I only have enough energy to be a mother. In the meantime here is a montage that I created in a very short time. I wish it was more creative but this is Sam over the past 2 years.
Thursday, July 31, 2008
Thursday, July 24, 2008
Long Time No Write...
I have been meaning to download video of Sam and Ramon but we have just been so preoccupied here with Sam. Sam really has not been doing well digestively at all. We think he has something called "dumping syndrome." And no Evan and Eric this is not a "Leshin" thing. It basically means that Sam's body is not digesting his food properly which accounts for his weight loss, constant retching, and fatigue. We are not 100% sure but we are trying to work it out which is pretty time consuming and exhausting on Sam's part more than ours. It is going to take some time to get Sam comfortable again as we have to go through a trial and error period of figuring out what course of action to take. Its all very confusing and I know I am not being that clear. WHen we know more of what is going on with Sam we will let everyone know. In the meantime please keep Sam in your prayers. Thanks so much.
Tuesday, July 15, 2008
Quick Update
So far we have had 5 out of 9 sessions with Ramon. We lost one due to Sam getting a cold. Sam was really tough the first 2 sessions but the last 3 sessions he did really really well. Not sure if it has to do with the stem cells or just the extra therapy. Ramon was very delighted to see how quickly Sam progressed. I will post some video soon.
What else...
Sam is entering the terrible twos. He has been tantruming and has been really moody lately. I don't want to cough it up to age as Sam has so many other things that could be going on that are making him miserable. He is teething pretty badly and he is not tolerating his feeds that well. Sam is constantly retching which causes him so much discomfort as well. Its a pretty scary sight to watch. He also lost a pound in the last month which has gotten us very worried. We are going to the GI next week to see if we can get some answers. When I spoke to the doctor last night he entertained the idea of replacing the g-tube with the G-Jtube again... When you have a g-j tube you have to feed continuously throughout the day. The more I thin about it that really isn't such a great idea because Sam is moving so much. He will definitely choke himself to death with that stupid long tube that he will be connected to all day. So I think the g-j is out of the question. We will see... Please pray for some weight gain and good digestion. We truly are so grateful for everyone's thoughts nd prayers. BELIEVE me they do work! Thanks so much :)
What else...
Sam is entering the terrible twos. He has been tantruming and has been really moody lately. I don't want to cough it up to age as Sam has so many other things that could be going on that are making him miserable. He is teething pretty badly and he is not tolerating his feeds that well. Sam is constantly retching which causes him so much discomfort as well. Its a pretty scary sight to watch. He also lost a pound in the last month which has gotten us very worried. We are going to the GI next week to see if we can get some answers. When I spoke to the doctor last night he entertained the idea of replacing the g-tube with the G-Jtube again... When you have a g-j tube you have to feed continuously throughout the day. The more I thin about it that really isn't such a great idea because Sam is moving so much. He will definitely choke himself to death with that stupid long tube that he will be connected to all day. So I think the g-j is out of the question. We will see... Please pray for some weight gain and good digestion. We truly are so grateful for everyone's thoughts nd prayers. BELIEVE me they do work! Thanks so much :)
Thursday, July 10, 2008
AHHHHHH!
Ramon Cuevas is in from Chile. We had several appointments to see him starting yesterday. Sam is of course sick at the moment. We did get one session in yesterday but had to cancel for today. I hope to god that Sam gets better quick. He has a low fever and is very very congested, coughing, sneezing etc... We really need to get Sam in to see Ramon. Cuevas MEDEK Exercises is the new wave in PT and is amazing. Sam responds so well to Ramon's treatment. I am asking yet again to please please pray for Sam to get well ASAP. He really needs to see Ramon. And the marathon continues...
Thursday, July 3, 2008
Language Treatment 101
I took this on June 23rd. For all of you budding speech-language pathologists out there if you do not have bubbles in your toy bag go get some...
And We're Back...
Mission accomplished. We had a fantastic trip. There is so much I want to say and share about this trip I really do not know where to start.
Sam - Sam did really really well in the car going and coming. He slept well for the most part and was in pretty good spirits for most of the trip.
Jeff - First of all I was humbled by the selflessness and kindness of our brother-in-law, Jeff, to take time out of his extremely busy work schedule to drive us down to NC. I thought for sure Scott and I would be fine going on our own, but Sam is a difficult baby to care for and requires a lot of hands. It would have been very stressful and difficult had Jeff not come. Jeff also happens to be an excellent driver. I am not the best passenger and get very nervous if anyone other than myself is driving. I have to say I was not the slightest bit nervous.
Scott - Scott had the difficult task of sitting in the back the entire time to care for Sam and he did an amazing job keeping Sam calm, safe and happy.
Me - And me... well I just did what I do best and that was taking care of everyone in the car... I played DJ, feeder, unwrapper, cleaner, trash person, entertainer, holder, etc... You know, its not easy being this perfect and wonderful.
NC - North Carolina is beautiful! The people are so friendly. I definitely understated that. The people are soooooooooooooooo friendly and kind and helpful. You couldn't help but smile all of the time no matter what else was going on in your head. We went to Duke University's campus which was gorgeous. Its a very nice place to visit.
The hospital - Duke Children's is a beautiful, warm and friendly place. We entered the hospital and had to go to the fourth floor. Scott and I started crying the second we walked through the door. I wasn't really sure why I was crying as I usually don't. Scott on the other hand cries if the wind blows in the wrong direction. He is very sensitive. We get up to the fourth floor and immediately we can see how sick the children are here. I got an overwhelming feeling of guilt. I know Sam deserves the world, but the truth is Sam is a stable healthy little boy. This procedure is not life and death for Sam. But for these other children it is. I couldn't help but think that we were possibly taking the spot of a child that needed stem cells more than Sam. It was very difficult for me to contend with this issue. As Scott and I sat in the waiting room we couldn't help but see a beautiful little girl probably about 8 or 9. She was totally bald and sitting next to her was her mother who had obviously shaved her head for her daughter. I was completely moved by this. I had to get up and walk away because I started crying again. When I thought of children with cancer in the past I always focused on the physical pain they must feel or the emotional pain of possibly not being able to live a long healthy life. I never thought for a second that a child might feel embarrassed or ashamed about their physical appearance. An adult maybe but never thought of a child in that regard. I continued to glance nonchalantly at this mother and daughter. You had to see the pain in this mother's eyes. Pain that is somewhat familiar to me. When her daughter looked at her, her eyes were bright and full of happiness, but the second her daughter focused on something else the mother just went back to her blank stare, so full of fear and emptiness.
Appointment 1 - The first appointment at Duke consisted of a typical check up, height, weight, history, blood work, etc... Ahh the blood work... Sam is a difficult stick. We usually have to go hunting for a NICU nurse to get bloods or insert an IV for Sam. His veins collapse very easily. Luckily they only had to stick him twice. After the first try they decided not to take any chances so they grabbed the best blood lab tech they had and sure enough we got our bloods. After the blood work we were sent on our way with an appointment to come back for the infusion the following day at 1pm. I was so impressed with how organized, sweet, and competent all of the staff working there was. Everyone from the receptionists to the doctors. I am embarrassed to say that you do not find that hospitality here in NY.
Appointment 2 - At 1pm we made our way back up to the fourth floor. They took us to the back immediately and put us in our own glass walled room in the out-patient hospital unit. Sam was the only healthy child there. Most of the children in this area were hooked up to IVs getting treatments. We were there from 1pm to 7:15pm. It took us 3 tries to get a vein for Sam. Finally, after the third try they got one in his foot. That was the most nerve wracking part of the day, then everything went very smoothly. Sam got his cells and then he was flushed with IV fluids and that was that.
June Allison If it weren't for June then appointments 1 & 2 would not have happened. June is an incredible person with the most delicious southern accent imaginable. She is Dr. Kurtzberg's nurse practitioner. I think Scott must have spoken with her about 1,000 times at least. She never seemed the slightest bit annoyed. If anything she was just so happy to get us down there. We really have a lot to thank June for.
Dr. Joanne Kurtzberg - Talk about a humbling experience. I am afraid to even write anything about this amazing women as I am not worthy to even pretend to understand a millionth of what she does. Dr. Kurtzberg is one of if not THE leading physician in stem cell research. She has already found cures and treatments using stem cells to fight all sorts of metabolic and systemic diseases. Dr. Kurtzberg is just as sweet and warm as everyone else we met in North Carolina. I couldn't believe how human and normal she was. Most doctors, especially world renowned doctors can be pretty arrogant and nasty. This women could have been Sam's aunt or our neighbor or something. She was kind and considerate. She answered all of our questions. Scott had brought her chocolate from a very good chocolatiere in NY. You had to see how this women lit up at the site of dark chocolate. We really liked her and her assistant June very much. We are so grateful that Sam had the opportunity to get an appointment. Stem cell re-infusion for children with CP is a very small fraction of what Dr. Kurtzberg does. Most of her patients are very ill and are getting infused with donor cells for life saving purposes. I think Sam may have been the 26th or 27th patient with CP to receive stem cell re infusion.
Thank you all so much for all of your thoughts and prayers they certainly worked. I know we don't get to call or write everyone as much as we would like but we are so excited and happy to hear from everyone always. We think of all of our family and friends all of the time and we certainly feel all of the positive energy everyone sends our way. All of your love goes such a long way. We feel it believe me. We could not run this marathon everyday if we did not have all of the support from our family and friends.
Sam - Sam did really really well in the car going and coming. He slept well for the most part and was in pretty good spirits for most of the trip.
Jeff - First of all I was humbled by the selflessness and kindness of our brother-in-law, Jeff, to take time out of his extremely busy work schedule to drive us down to NC. I thought for sure Scott and I would be fine going on our own, but Sam is a difficult baby to care for and requires a lot of hands. It would have been very stressful and difficult had Jeff not come. Jeff also happens to be an excellent driver. I am not the best passenger and get very nervous if anyone other than myself is driving. I have to say I was not the slightest bit nervous.
Scott - Scott had the difficult task of sitting in the back the entire time to care for Sam and he did an amazing job keeping Sam calm, safe and happy.
Me - And me... well I just did what I do best and that was taking care of everyone in the car... I played DJ, feeder, unwrapper, cleaner, trash person, entertainer, holder, etc... You know, its not easy being this perfect and wonderful.
NC - North Carolina is beautiful! The people are so friendly. I definitely understated that. The people are soooooooooooooooo friendly and kind and helpful. You couldn't help but smile all of the time no matter what else was going on in your head. We went to Duke University's campus which was gorgeous. Its a very nice place to visit.
The hospital - Duke Children's is a beautiful, warm and friendly place. We entered the hospital and had to go to the fourth floor. Scott and I started crying the second we walked through the door. I wasn't really sure why I was crying as I usually don't. Scott on the other hand cries if the wind blows in the wrong direction. He is very sensitive. We get up to the fourth floor and immediately we can see how sick the children are here. I got an overwhelming feeling of guilt. I know Sam deserves the world, but the truth is Sam is a stable healthy little boy. This procedure is not life and death for Sam. But for these other children it is. I couldn't help but think that we were possibly taking the spot of a child that needed stem cells more than Sam. It was very difficult for me to contend with this issue. As Scott and I sat in the waiting room we couldn't help but see a beautiful little girl probably about 8 or 9. She was totally bald and sitting next to her was her mother who had obviously shaved her head for her daughter. I was completely moved by this. I had to get up and walk away because I started crying again. When I thought of children with cancer in the past I always focused on the physical pain they must feel or the emotional pain of possibly not being able to live a long healthy life. I never thought for a second that a child might feel embarrassed or ashamed about their physical appearance. An adult maybe but never thought of a child in that regard. I continued to glance nonchalantly at this mother and daughter. You had to see the pain in this mother's eyes. Pain that is somewhat familiar to me. When her daughter looked at her, her eyes were bright and full of happiness, but the second her daughter focused on something else the mother just went back to her blank stare, so full of fear and emptiness.
Appointment 1 - The first appointment at Duke consisted of a typical check up, height, weight, history, blood work, etc... Ahh the blood work... Sam is a difficult stick. We usually have to go hunting for a NICU nurse to get bloods or insert an IV for Sam. His veins collapse very easily. Luckily they only had to stick him twice. After the first try they decided not to take any chances so they grabbed the best blood lab tech they had and sure enough we got our bloods. After the blood work we were sent on our way with an appointment to come back for the infusion the following day at 1pm. I was so impressed with how organized, sweet, and competent all of the staff working there was. Everyone from the receptionists to the doctors. I am embarrassed to say that you do not find that hospitality here in NY.
Appointment 2 - At 1pm we made our way back up to the fourth floor. They took us to the back immediately and put us in our own glass walled room in the out-patient hospital unit. Sam was the only healthy child there. Most of the children in this area were hooked up to IVs getting treatments. We were there from 1pm to 7:15pm. It took us 3 tries to get a vein for Sam. Finally, after the third try they got one in his foot. That was the most nerve wracking part of the day, then everything went very smoothly. Sam got his cells and then he was flushed with IV fluids and that was that.
June Allison If it weren't for June then appointments 1 & 2 would not have happened. June is an incredible person with the most delicious southern accent imaginable. She is Dr. Kurtzberg's nurse practitioner. I think Scott must have spoken with her about 1,000 times at least. She never seemed the slightest bit annoyed. If anything she was just so happy to get us down there. We really have a lot to thank June for.
Dr. Joanne Kurtzberg - Talk about a humbling experience. I am afraid to even write anything about this amazing women as I am not worthy to even pretend to understand a millionth of what she does. Dr. Kurtzberg is one of if not THE leading physician in stem cell research. She has already found cures and treatments using stem cells to fight all sorts of metabolic and systemic diseases. Dr. Kurtzberg is just as sweet and warm as everyone else we met in North Carolina. I couldn't believe how human and normal she was. Most doctors, especially world renowned doctors can be pretty arrogant and nasty. This women could have been Sam's aunt or our neighbor or something. She was kind and considerate. She answered all of our questions. Scott had brought her chocolate from a very good chocolatiere in NY. You had to see how this women lit up at the site of dark chocolate. We really liked her and her assistant June very much. We are so grateful that Sam had the opportunity to get an appointment. Stem cell re-infusion for children with CP is a very small fraction of what Dr. Kurtzberg does. Most of her patients are very ill and are getting infused with donor cells for life saving purposes. I think Sam may have been the 26th or 27th patient with CP to receive stem cell re infusion.
Thank you all so much for all of your thoughts and prayers they certainly worked. I know we don't get to call or write everyone as much as we would like but we are so excited and happy to hear from everyone always. We think of all of our family and friends all of the time and we certainly feel all of the positive energy everyone sends our way. All of your love goes such a long way. We feel it believe me. We could not run this marathon everyday if we did not have all of the support from our family and friends.
Papa
Scott's Pen
6-21-08
Today I said goodbye to my papa. I do not believe I will see him again in this life. Before I said goodbye I asked everyone to leave the room so I could be alone with him. I held his hand and he grabbed me tight. He started to move his mouth but words did not come out. I looked into his eyes and knew what he was saying.
"Scotty boy... I am very proud of you.
You turned into a great man.
You got yourself a great girl.
I promise to look after Sam from up above.
I will pass my strength to him."
When I got to my grandparent's house a nurse there was talking to me and I was asking him some medical questions about my papa. He asked me how I know so much and I said that I have a son with CP. He replied "You never know what is behind someones smile."
I thought about my son and I looked at my Papa and thought to myself, "nothing but happiness". You will be missed papa. We love you.
6-21-08
Today I said goodbye to my papa. I do not believe I will see him again in this life. Before I said goodbye I asked everyone to leave the room so I could be alone with him. I held his hand and he grabbed me tight. He started to move his mouth but words did not come out. I looked into his eyes and knew what he was saying.
"Scotty boy... I am very proud of you.
You turned into a great man.
You got yourself a great girl.
I promise to look after Sam from up above.
I will pass my strength to him."
When I got to my grandparent's house a nurse there was talking to me and I was asking him some medical questions about my papa. He asked me how I know so much and I said that I have a son with CP. He replied "You never know what is behind someones smile."
I thought about my son and I looked at my Papa and thought to myself, "nothing but happiness". You will be missed papa. We love you.
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