WWW.Caringbridge.org/visit/nicholasasbell
Thank you all for your love.
- Posted using BlogPress from my iPhone
Location:Shriners Hospital
Life is GREAT! Different..... but GREAT! This is OUR story. A family who found ourselves in a place we never dreamed we would be, and by going there, it completely and beautifully changed our lives.
Friday, March 25, 2011
Surgery Day
Please check Nicholas' caring bridge site for status updates. I am having a hard time updating both.
WWW.Caringbridge.org/visit/nicholasasbell
Thank you all for your love.
- Posted using BlogPress from my iPhone
WWW.Caringbridge.org/visit/nicholasasbell
Thank you all for your love.
- Posted using BlogPress from my iPhone
Thursday, March 17, 2011
Cherishing Precious Moments
Well today I find myself being a bit emotional. Not sure why. I have known this is coming. We have planned and organized and talked about it until we just can't do anything else. I have been cherishing every precious moment with Nicholas since he has not had any programs going on in our house. It is just him and I while Maddie is in school. When she comes home, it is all Maddie. She needs special time with her Mom and Dad and after school and into the evening is hers. When Ray comes home from work, it is his time to cuddle with Nicholas and get his special time in. Maddie and Ray have their thing which is rough housing. Pretend Kung Fu and just general roughing around. Although at times it literally drives me nuts, I know they both love it. Both my kids love cuddling and there isn't a day that goes by where Maddie doesn't say, "let's cuddle mom". I love that. I know it won't last forever. I know that even though Nicholas can't speak, he is always up for a good cuddle. That is just what we have been doing every day for the lasts few weeks.
I know that soon, I won't be able to hold him and cuddle with him like I can now. Eventually it will happen, but it will be a while. Today we listened to my Pandora radio ambient music station while we cuddled on the couch. It is hard to imagine a 75 pound 4 foot 8 inch tall boy, cuddling on his mom, but it is true. We have the kind of couch with recliners on the end. I pull out the recliner, bring Nicholas up and he literally lays on my side with his head right in the crook of my neck and just snuggles right up. He gets the biggest smile when we get settled. We pull up our favorite throw and he grabs one piece of it and makes his little cuddling sounds; it is his self soothing sound. To me, it is music to my ears.
I realize this sounds like something that happens with your 2 year old, but Nicholas' functional level is that of about 1-2 year old so it just makes sense. He loves body contact just like a baby does. It is his comfort zone. Ray and I laugh about how it will look when he is 15, but I am sure we will just make a few changes and still be able to cuddle.
Today before he fell asleep, which he always does, we looked at each other in the eyes and sat there for a while like that. He has the most beautiful blue eyes. I always wonder what he is thinking. I tell him how much I love him. I tell him he is the best boy in the whole world. I tell him how much he is loved by so many. It is our time together. Sometimes we laugh. I tickle him and he just cracks up. Other times I do "light touch", Maddie's word for it, on his back of his arms. Just lightly dragging my fingers up and down. It puts him to sleep so quickly most times. He gets goosebumps, which are my only way of knowing that he really does like it, other than that he turns his arm different ways to make sure I get all areas. It really is so sweet.
Nicholas is innocent to the core. I said he falls asleep fast and it is true. He has no cares in the world. He doesn't lay there thinking of what he has to do tomorrow. He doesn't think about his friends and if they like him or not. He only knows love. He is truly always in the moment. What a way to be. There are times when I wish I could not have any cares in the world. It is such a blessing for him. He doesn't know any hate or jealousy or envy. He isn't aware of all the tragedy going on worldwide. He doesn't see the depressing stories of murder and devastation on the news. He can easily fall asleep because he is just pure at heart. Completely pure at heart.
Today I cried watching my baby sleep. Not crazy, just tears. Tears of everything coming to a boiling point soon. Tears of sadness that I can't explain to this beautiful child what is coming his way in a week. I pray to God every day that he helps everyone get through this. That he watches over Nicholas and helps him understand, somehow that this is something that has to be done and he will be so much better after.
Baby Mine dry your eyes, baby mine don't you cry, rest your head close to my heart.......
I know that soon, I won't be able to hold him and cuddle with him like I can now. Eventually it will happen, but it will be a while. Today we listened to my Pandora radio ambient music station while we cuddled on the couch. It is hard to imagine a 75 pound 4 foot 8 inch tall boy, cuddling on his mom, but it is true. We have the kind of couch with recliners on the end. I pull out the recliner, bring Nicholas up and he literally lays on my side with his head right in the crook of my neck and just snuggles right up. He gets the biggest smile when we get settled. We pull up our favorite throw and he grabs one piece of it and makes his little cuddling sounds; it is his self soothing sound. To me, it is music to my ears.
I realize this sounds like something that happens with your 2 year old, but Nicholas' functional level is that of about 1-2 year old so it just makes sense. He loves body contact just like a baby does. It is his comfort zone. Ray and I laugh about how it will look when he is 15, but I am sure we will just make a few changes and still be able to cuddle.
Today before he fell asleep, which he always does, we looked at each other in the eyes and sat there for a while like that. He has the most beautiful blue eyes. I always wonder what he is thinking. I tell him how much I love him. I tell him he is the best boy in the whole world. I tell him how much he is loved by so many. It is our time together. Sometimes we laugh. I tickle him and he just cracks up. Other times I do "light touch", Maddie's word for it, on his back of his arms. Just lightly dragging my fingers up and down. It puts him to sleep so quickly most times. He gets goosebumps, which are my only way of knowing that he really does like it, other than that he turns his arm different ways to make sure I get all areas. It really is so sweet.
Nicholas is innocent to the core. I said he falls asleep fast and it is true. He has no cares in the world. He doesn't lay there thinking of what he has to do tomorrow. He doesn't think about his friends and if they like him or not. He only knows love. He is truly always in the moment. What a way to be. There are times when I wish I could not have any cares in the world. It is such a blessing for him. He doesn't know any hate or jealousy or envy. He isn't aware of all the tragedy going on worldwide. He doesn't see the depressing stories of murder and devastation on the news. He can easily fall asleep because he is just pure at heart. Completely pure at heart.
Today I cried watching my baby sleep. Not crazy, just tears. Tears of everything coming to a boiling point soon. Tears of sadness that I can't explain to this beautiful child what is coming his way in a week. I pray to God every day that he helps everyone get through this. That he watches over Nicholas and helps him understand, somehow that this is something that has to be done and he will be so much better after.
Baby Mine dry your eyes, baby mine don't you cry, rest your head close to my heart.......
Monday, March 7, 2011
Surgery Countdown
Why I ask, is it that as we get closer to Nicholas' back surgery, everyone in the house decides to get some sort of cough, sniffle, sore throat, runny nose thing? Poor Maddie has had it for a month and at this point I probably have to admit that it just might be allergies as Ray has said for a while now. The cough though is terrible. It just can't be "drainage". Really? Making her cough so much that throwing up each day is the norm from a bout of coughing?
When she was a baby she had bad colic. Why do I bring this up? I just happened to remember her Peds. doc saying when he put her on Zyrtec for GERD, that this is something that will probably be with her for life. Now as she coughs and then throws up from coughing so much, I think it is all related. Poor baby. She is so good about it, but I know she is just over this cough. I know the rest of us are not getting any sleep and neither is she. Ray took her to the Urgent care clinic over the weekend because she had a low grade fever. I panic thinking, RSV, Bronchitis, Asthma, walking pneumonia. The doctor says it is probably just allergies. Keep her on Antihistamines daily blah blah blah. Not that I wanted her to have something other than that but is she going to be coughing all through allergy season? I have left a message now with our Peds. doc to see if he can prescribe at least something for her at night. My Grandmother's old remedy of a little whisky, lemon juice and honey was sure sounding good the other night in the midst of a coughing spell.
Yes, the title to this blog is Surgery Countdown. And why does someone want to stress me out and bring all this coughing and sneezing and sore throat stuff into my house when we only have a few weeks to go? Nicholas has been healthy for a while. We are giving him extra vitamins each day and echinacea drops as well. If he gets sick, his surgery will be postponed. It just isn't an option. We have all geared ourselves up for this as much as we can. My Dad is coming out to stay with us for 9 days to help, tickets have been purchased. It would be horrible.
Although my heart breaks thinking about every moment of this surgery and all that it entails after, I just know in my heart we have to get through this, for Nicholas. He will need us to coddle and love him so much more than we do now. I give him and Maddie all I have but somewhere, we will need to find the extra from within to give even more so to help him. Our voices are the only thing that will soothe him other than pain meds.
We had our Pre-Op last week and met with so many people. Shriner's is awesome and they really do care about their patients and their families. They want to be able to help Maddie get through this and understand why her brother is going to be in so much pain. She loves her brother so much and it will be very difficult for her. It sounds terrible to say but it will be hard giving her the much needed attention during surgery time when I know we will be spent physically and emotionally with Nicholas and being there for him. When we were in the hospital for Nicholas' G tube and when he had a bad flu in December and was admitted, Ray and I made a major effort to take her out to lunches and dinners while the other one of us was with Nicholas. She likes that and I know it helped her feel just as special as Nicholas is. To Ray and I, she is a bright light in a sometimes dark room. But when we go through these things, I can see her little brain thinking "he gets so much attention". We know this is always the case of a sibling of a special needs child. We have read about it and are prepared for it. Right now, she is great about everything so we try to head it off at the pass and do special things now, knowing it won't always be so easy.
Shriner's asked how do we know when Nicholas is in pain? Our answer since he cannot talk is that he cries. It is true. Nicholas literally never cries unless he is hurt or just doesn't feel good. This will be our ultimate test of advocacy for him. We have fought hard in the past and have won so many battles on his behalf but this one, is huge. I have high expectation's for Shriner's. Our main concern is that Nicholas' pain be managed effectively. I am sure with his pain meds and seizure meds, he will be sleeping a lot and that is fine with us. Just sleep through it baby, just sleep through it.
"Baby mine don't you cry, Baby mine dry your eyes, rest your head close to my heart never to part, baby of mine." The Dumbo tune I have sang to Nicholas since he was in utero after we found out he had a stroke. I have sang it to him since and Nicholas knows it is me and OUR thing when he hears that song. It always soothes him. I will be relying on it.
When she was a baby she had bad colic. Why do I bring this up? I just happened to remember her Peds. doc saying when he put her on Zyrtec for GERD, that this is something that will probably be with her for life. Now as she coughs and then throws up from coughing so much, I think it is all related. Poor baby. She is so good about it, but I know she is just over this cough. I know the rest of us are not getting any sleep and neither is she. Ray took her to the Urgent care clinic over the weekend because she had a low grade fever. I panic thinking, RSV, Bronchitis, Asthma, walking pneumonia. The doctor says it is probably just allergies. Keep her on Antihistamines daily blah blah blah. Not that I wanted her to have something other than that but is she going to be coughing all through allergy season? I have left a message now with our Peds. doc to see if he can prescribe at least something for her at night. My Grandmother's old remedy of a little whisky, lemon juice and honey was sure sounding good the other night in the midst of a coughing spell.
Yes, the title to this blog is Surgery Countdown. And why does someone want to stress me out and bring all this coughing and sneezing and sore throat stuff into my house when we only have a few weeks to go? Nicholas has been healthy for a while. We are giving him extra vitamins each day and echinacea drops as well. If he gets sick, his surgery will be postponed. It just isn't an option. We have all geared ourselves up for this as much as we can. My Dad is coming out to stay with us for 9 days to help, tickets have been purchased. It would be horrible.
Although my heart breaks thinking about every moment of this surgery and all that it entails after, I just know in my heart we have to get through this, for Nicholas. He will need us to coddle and love him so much more than we do now. I give him and Maddie all I have but somewhere, we will need to find the extra from within to give even more so to help him. Our voices are the only thing that will soothe him other than pain meds.
We had our Pre-Op last week and met with so many people. Shriner's is awesome and they really do care about their patients and their families. They want to be able to help Maddie get through this and understand why her brother is going to be in so much pain. She loves her brother so much and it will be very difficult for her. It sounds terrible to say but it will be hard giving her the much needed attention during surgery time when I know we will be spent physically and emotionally with Nicholas and being there for him. When we were in the hospital for Nicholas' G tube and when he had a bad flu in December and was admitted, Ray and I made a major effort to take her out to lunches and dinners while the other one of us was with Nicholas. She likes that and I know it helped her feel just as special as Nicholas is. To Ray and I, she is a bright light in a sometimes dark room. But when we go through these things, I can see her little brain thinking "he gets so much attention". We know this is always the case of a sibling of a special needs child. We have read about it and are prepared for it. Right now, she is great about everything so we try to head it off at the pass and do special things now, knowing it won't always be so easy.
Shriner's asked how do we know when Nicholas is in pain? Our answer since he cannot talk is that he cries. It is true. Nicholas literally never cries unless he is hurt or just doesn't feel good. This will be our ultimate test of advocacy for him. We have fought hard in the past and have won so many battles on his behalf but this one, is huge. I have high expectation's for Shriner's. Our main concern is that Nicholas' pain be managed effectively. I am sure with his pain meds and seizure meds, he will be sleeping a lot and that is fine with us. Just sleep through it baby, just sleep through it.
"Baby mine don't you cry, Baby mine dry your eyes, rest your head close to my heart never to part, baby of mine." The Dumbo tune I have sang to Nicholas since he was in utero after we found out he had a stroke. I have sang it to him since and Nicholas knows it is me and OUR thing when he hears that song. It always soothes him. I will be relying on it.
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