We met with the Chief of Pediatric Neurosurgery and Epilepsy Neurologist from Oakland Children's Hospital on Monday. Nicholas' Neurologist recommended we meet with them to discuss our options for Nicholas and brain surgery. We have tried so many things over the past twelve years for Nicholas in regards to his seizures. Various medications, vagal nerve stimulator, ketogenic diet... all had our hopes of helping to control his seizures. Some helped and some still due, but the fact is that Nicholas still has seizures daily and they have never, I mean never, been controlled.
I remember when Nicholas was little and we talked about brain surgery, we never thought we would have to "go there". We always had hopes that this isn't what his life will always be like with daily seizures. We never gave up thinking that the next med, or the next procedure wouldn't work. We didn't think they were they cure all but we thought for sure they would help or at least diminish his seizures. Unfortunately, we were wrong.
The neurosurgeon was very realistic. They told us that this isn't curative, this is palliative. It would help give Nicholas a better quality of life and that is all Ray and I have ever wanted for Nicholas. Anything we have ever had him undergo was to help him live more comfortably.
I remember having his G tube placed. I thought I was the worst mother on the planet. How could we have failed to keep him thriving. He was losing one of the best things in life, to be able to taste and eat food. I felt like a failure. Ray was always positive and said we did everything we could, it just wasn't enough. In hindsight 3 years later, it was the best thing we could have ever done for Nicholas. He is healthy and thriving and when he is sick there is no stress around getting food into him so that he can have his seizure meds if he has a flu. We can just put his meds and his food through his tube and he is taken care of. It was life changing.
When we had his back surgery, I thought personally I was never going to get through that and it wasn't even about me! But as a mom, I didn't think I could handle putting him through so much pain. The worst part and it always is, is putting my child through something that he doesn't even know is coming or why we did it to him. He only knows he is in pain and doesn't understand why. That, I think is the absolute worse thing in the entire world. The pain is so hard it makes my heart literally hurt it. With all that pain though came the beauty and wonder of a straight back and a kid who is so much more comfortable and healthy. He can breathe with both lungs completely and sit tall when he is working in his program. He no longer has to focus on trying to sit up but can focus on what he is trying to learn. It is simply amazing.
We won't be doing surgery until the beginning of next year but after all that we have been through in the past and with the amazing outcomes we have had, we know this is the best decision we are making for Nicholas. His seizures will be hopefully cut in half in severity and the goal will be to come off of some medications. It will be a terribly trying time in our lives once again, but I know in my heart, we just may see the light in the eyes again of our angel boy Nicholas.
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.
Wednesday, October 3, 2012
Thursday, January 5, 2012
Ketogenic diet, not the miracle we were hoping for..so far?
Well today I got in touch with an old friend via facebook. He read my older blogs and gave me such wonderful feedback, as everyone else has in the past, that it really reminded me I need to start blogging again. Thanks friend, here it goes after many, many months.
I could try to catch everyone up on all the things that have gone on since April, but really, you would be reading a blog the size of the New World Dictionary so I will refrain from doing that to you. Instead I will say that everything at home is status quo. Maddie started 2nd grade in August, Nicholas continues his in home programs, Ray is still doing the work grind at the State and I continue to be Wife/Mommy and care for Nicholas' at the homestead. I started taking Photography classes this last year and LOVE it!!! I have another class starting in a week and can't wait to start my own business in a year or so. That is a whole other blog in itself.
I think the thing foremost on my mind right now is this.... I am very sad to say that I don't think the Ketogenic diet that we started for Nicholas in August has helped much in decreasing his seizures. I remember watching the made for tv movie First do no Harm, about the diet prior to starting Nicholas on it and we had so much hope. I cried watching that movie. It was so amazing that a diet can change the life of a person with seizures. This child had seizures daily like Nicholas, and once he started the diet (no sugar at all), his seizures went away. Granted we did go into this with open eyes. We know Nicholas was born with a brain abnormality; a structural defect. The brain is a very amazing organ and when it isn't formed properly, things go array. In Nicholas' case, they go array at least 5 or 6 times a day with his seizures and those are the ones we can see. Many happen that we don't even know about. I was so hoping that we could at least decrease seizure meds with this new diet.
There have been a few occasions when Nicholas was without seizure meds (flu and couldn't keep them down), and he was this different child. Yes he was sick with the flu but he was more... "there". I don't know how else to say it. He was more alert, aware, smiling. I know he has so much potential without being medicated. I know he wouldn't be losing hours for his program funded by the State due to his horrible acquistion rates if he weren't so medicated. It is such a horrible thing knowing that what you give your child every day is what is making him be a different person. I know he would have better luck potty training (yes we are still in diapers at 11, and who knows how long). His head would be more clear, he might be more verbal. So many things I just know would be different if we could even decrease his meds. I am not talking completely med free, I just don't think that could ever happen, but a pill? That isn't asking that much is it? When your kiddo takes 14 seizures pills a day, just one pill isn't asking a lot?
Don't get me wrong, it hasn't been totally for not. We have seen a minor change in the severity of his drop seizures. I guess yes, that is a good thing. But when you are depriving your child of eating by mouth some of his favorite things like popcorn for such a minor change, is it worth it? He has such little pleasures in his world, and eating popcorn, silly as it seems, was an all time favorite thing to do. My husband and I talk about this often since we have had Nicholas on this diet. Is it worth it?
Nicholas has had a G tube since 2009. It has been a God send and especially on this diet it is everything for us. We wouldn't be able to do it otherwise. Thanks to a formula called Keto Cal, we can have him on this diet with no problem at all. With the exception that he doesn't eat anything by mouth that has sugar in it. To make it easy we just cut out food by mouth which is fine with his Keto dietician. He really didn't eat meals by mouth anyway, his main nutrition was from his G tube, but he LOVED popcorn and snacky, crunchy food. The doctors have told us Nicholas life span isn't going to be long. There is no certainty as to when he may pass on from our beautiful planet earth. A Seizure will just go directly to his sweet heart one day. When you know this as a parent, it is hard to deprive your child of the things they like. It is a quality of life thing for us and we struggle with this often. We want to make his life happy. He has so many challenges every day and it is our job as his parents to make him comfortable, happy and stress free as much as possible.
So the 17th of January marks the 5th month. We said we would try at least six months and make a decision at that point. That is still the plan. So on we go, marching forward, one day at a time, one day at a time.
For more information on the Ketogenic diet visit http://charliefoundation.org/ Nicholas is just one child and there are so many children that do benefit from this diet. Regardless of our story, I would still highly recommend it to anyone who has seizures and is willing to make some very significant dietary changes to try and decrease those seizures.
I could try to catch everyone up on all the things that have gone on since April, but really, you would be reading a blog the size of the New World Dictionary so I will refrain from doing that to you. Instead I will say that everything at home is status quo. Maddie started 2nd grade in August, Nicholas continues his in home programs, Ray is still doing the work grind at the State and I continue to be Wife/Mommy and care for Nicholas' at the homestead. I started taking Photography classes this last year and LOVE it!!! I have another class starting in a week and can't wait to start my own business in a year or so. That is a whole other blog in itself.
I think the thing foremost on my mind right now is this.... I am very sad to say that I don't think the Ketogenic diet that we started for Nicholas in August has helped much in decreasing his seizures. I remember watching the made for tv movie First do no Harm, about the diet prior to starting Nicholas on it and we had so much hope. I cried watching that movie. It was so amazing that a diet can change the life of a person with seizures. This child had seizures daily like Nicholas, and once he started the diet (no sugar at all), his seizures went away. Granted we did go into this with open eyes. We know Nicholas was born with a brain abnormality; a structural defect. The brain is a very amazing organ and when it isn't formed properly, things go array. In Nicholas' case, they go array at least 5 or 6 times a day with his seizures and those are the ones we can see. Many happen that we don't even know about. I was so hoping that we could at least decrease seizure meds with this new diet.
There have been a few occasions when Nicholas was without seizure meds (flu and couldn't keep them down), and he was this different child. Yes he was sick with the flu but he was more... "there". I don't know how else to say it. He was more alert, aware, smiling. I know he has so much potential without being medicated. I know he wouldn't be losing hours for his program funded by the State due to his horrible acquistion rates if he weren't so medicated. It is such a horrible thing knowing that what you give your child every day is what is making him be a different person. I know he would have better luck potty training (yes we are still in diapers at 11, and who knows how long). His head would be more clear, he might be more verbal. So many things I just know would be different if we could even decrease his meds. I am not talking completely med free, I just don't think that could ever happen, but a pill? That isn't asking that much is it? When your kiddo takes 14 seizures pills a day, just one pill isn't asking a lot?
Don't get me wrong, it hasn't been totally for not. We have seen a minor change in the severity of his drop seizures. I guess yes, that is a good thing. But when you are depriving your child of eating by mouth some of his favorite things like popcorn for such a minor change, is it worth it? He has such little pleasures in his world, and eating popcorn, silly as it seems, was an all time favorite thing to do. My husband and I talk about this often since we have had Nicholas on this diet. Is it worth it?
Nicholas has had a G tube since 2009. It has been a God send and especially on this diet it is everything for us. We wouldn't be able to do it otherwise. Thanks to a formula called Keto Cal, we can have him on this diet with no problem at all. With the exception that he doesn't eat anything by mouth that has sugar in it. To make it easy we just cut out food by mouth which is fine with his Keto dietician. He really didn't eat meals by mouth anyway, his main nutrition was from his G tube, but he LOVED popcorn and snacky, crunchy food. The doctors have told us Nicholas life span isn't going to be long. There is no certainty as to when he may pass on from our beautiful planet earth. A Seizure will just go directly to his sweet heart one day. When you know this as a parent, it is hard to deprive your child of the things they like. It is a quality of life thing for us and we struggle with this often. We want to make his life happy. He has so many challenges every day and it is our job as his parents to make him comfortable, happy and stress free as much as possible.
So the 17th of January marks the 5th month. We said we would try at least six months and make a decision at that point. That is still the plan. So on we go, marching forward, one day at a time, one day at a time.
For more information on the Ketogenic diet visit http://charliefoundation.org/ Nicholas is just one child and there are so many children that do benefit from this diet. Regardless of our story, I would still highly recommend it to anyone who has seizures and is willing to make some very significant dietary changes to try and decrease those seizures.
Tuesday, April 5, 2011
Surgery (lengthy, warning... )
Wow, so much has gone on since I was here last. I updated Nicholas' Caring Bridge site during the surgery as it was much easier to do. I am back now that Nicholas is home, but I have no idea what to say about what went on except that I am grateful it is over. Ok, I have a lot to say....
Nicholas' surgery went very well all in all. The most difficult part was that we didn't get a status update until like 6 hours into it. We thought at that point it was going to be done. When they came out to status us and they said, "ok, we are just about.... " , I thought I heard the words "done" but instead... "ready to put in the rods", the doctor said. I think I was wishing it to be done so badly that I was hoping he was going to say done. Nope, one more hour at least. Afterwards, they came out and said he did great, we could see him in about 45 minutes. I thought Thank GOD, the waiting was the worst. We left Nicholas at 715 in the morning, me in dreadful tears holding on to Ray, and didn't get to see Nicholas until 430pm.
He was intubated, which we knew he was going to be, but his face was not that swollen. The doctors said it would be as he was laying on his stomach during the entire surgery so this is normal. He looked angelic. Even though he was intubated, he looked very peaceful and straight!!! His back was straight. He was under covers, but was laying so tall. We all noticed that right away. He was already different in such a great way. When we saw the xrays, we saw the miracle that took place there that day.
from my cell phone of After and Before...
Nicholas' surgery went very well all in all. The most difficult part was that we didn't get a status update until like 6 hours into it. We thought at that point it was going to be done. When they came out to status us and they said, "ok, we are just about.... " , I thought I heard the words "done" but instead... "ready to put in the rods", the doctor said. I think I was wishing it to be done so badly that I was hoping he was going to say done. Nope, one more hour at least. Afterwards, they came out and said he did great, we could see him in about 45 minutes. I thought Thank GOD, the waiting was the worst. We left Nicholas at 715 in the morning, me in dreadful tears holding on to Ray, and didn't get to see Nicholas until 430pm.
He was intubated, which we knew he was going to be, but his face was not that swollen. The doctors said it would be as he was laying on his stomach during the entire surgery so this is normal. He looked angelic. Even though he was intubated, he looked very peaceful and straight!!! His back was straight. He was under covers, but was laying so tall. We all noticed that right away. He was already different in such a great way. When we saw the xrays, we saw the miracle that took place there that day.
from my cell phone of After and Before...
We were shown his lungs, the two black oblong things near the top of his chest cavity. Note how they are both different sizes due to his spine squishing one of them. It will take a while for things to look something even close to normal inside his body.
The first few days Nicholas slept for the most part. He was on morphine, an IV, had a central line and other lines that I can't remember what they were, and had a catheter. He came off of his breathing tube the first morning after surgery. Everyone was so impressed with his recovery from day one. He was such a great patient. All the nurses oooed and ahhhed over how handsome he was and what beautiful eyes he has. He didn't seem in much pain because that morphine was amazing! It is quite deceiving actually. He was in ICU for 2 days and nights and then moved down to the Step down unit which was a lower level ICU. He was there 5 days. Ray and I traded off staying the night with him so that someone was always there day and night.
I am giving the quick version for sure. There was so much going on that it is hard to really put it down in words. We were exhausted, but we had great support from family and friends. Nicholas looked like he was 4 months pregnant due to him not going to the bathroom. It was terrible. They were giving him everything under the sun to go but they said it was very normal and we just had to wait. It did finally happen but the tummy remained swollen and large! It is finally back to normal as of today.
Nicholas is home now and we have a hospital bed from our insurance for him to recover in. Ray and I again are taking turns sleeping in the family room with him where we have his bed. We have to change his diapers throughout the night and give him pain meds as they only last 4-6 hours. I have wonderful friends who are helping take and pick up Maddie from school. It is hard to reach out but this is one time that I felt I needed to just let that go and ask for help. I am so grateful.
Speaking of my other baby. Maddie is doing great considering. She is just going with the flow so well. The Child Life specialists at Shriners were wonderful with her. Making pictures for Nicholas' bedside when she couldn't go see him. Each girl in her Daisy troop made a picture for Nicholas for us to take to his hospital room. Maddie couldn't see Nicholas for 2 days while he was in ICU so she was so excited when she did finally get to see him. She really is just as amazing as he is. She loves her brother so much. The hardest thing to do is try to give her as much attention as he is getting right now. I just don't think it is possible, I am so tired. I give her what I can and so does Ray, but Nicholas is really of course getting so much more right now. The guilt, it kills me.
Nicholas had PT yesterday for the first time and he did great considering. His pain meds though are a trial and error thing. I thought he could just take a 1/2 dose so that he could be more alert during PT but at the end he cried. I felt horrible. He has barely shed a tear during this whole thing and I make him cry because I didn't give him his full dose of meds. UGH
Over the weekend he was having back spasms so we gave him the valium the doctors prescribed at Shriners. Well, he starting having lot's of seizures. We paged his Neurologist to see what we should do. Unfortunately we had to wait it out. The doctor said he shouldn't have been prescribed the valium as they make his seizures worse. Again, guilt, felt horrible!! Ray and I couldn't keep our eyes off of him. Checking every two minutes to make sure he was breathing. It is just the worst thing in life worrying so much about your child and knowing that you caused the situation. WE gave him those meds. I know the doctor prescribed them but it still makes me feel like a horrible parent when things like this happen. He is completely, solely relying on us for everthing. When it goes wrong, it breaks my heart and I tell Nicholas I am so sorry. I just hope he understands.
Today, Nicholas is sleeping lots. Again this morning he had a bout of seizures that were "different" than his normal type of seizures. Sounds weird to say but it is true. I talked to Ray and we decided again to call the Neurologist just to make sure. We hadn't given him any more Valium since the first time we did but he was still on his Tylenol with Codeine. The doctor had told us though that he should be fine with that and since he was on this in the hospital I just wasn't sure what was going on. Anyway, the doctor said to just hang in there, Nicholas has been through so much and his body might act weird for a while. Ugh, more waiting.... the seizures finally did ease up.
We are taking this day by day for sure. I want things to happen so fast but it just isn't going to. I want all of this pain stuff to be over for my baby but I think it is going to be a long time before that happens. I am trying to look at the big picture when I get into this mode of thinking. I just have to remind myself to do so. Bless you Shriner's for giving this gift to Nicholas. We are forever grateful and honored to have you in 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
Location:Shriners Hospital
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.
Friday, February 25, 2011
"Number 2"
Wow, pretty funny that I would be so excited about "number 2", but I am. Nicholas just went "number 2" in the potty!! This was huge!!! He hasn't gone poo in the potty in I am guessing 2 years. A little background before I get right into the nitty gritty. If I have already lost you, I am sorry, I just had to note this special day with a blog.
Nicholas is still in diapers. He is going to be turning 11 this summer. Don't get me wrong, he has had so much success with potty routine. He has come a long way, but it has also been a very long road. Most people are done with the joy of potty training by age 3, maybe 4 if you are unlucky. Maddie was pretty much done at 2 and I remember being so thrilled to not have 2 kids in diapers any longer.
Nicholas' situation is a bit more difficult. He is neurologically impaired, and so the doctors didn't know if he could even go potty on command or have the capability to "hold" it and stay dry for a period of time. But the doctors also said he may never walk, make sounds or be able to communicate in any way also, and he has proved them wrong little by little.
I remember when Nicholas was younger, potty training age, I had hope that he would totally get it. Hope is something you never ever give up but over the years, I have to admit it has wained a bit when it comes to potty training.
Nicholas is brought to the potty every 45 minutes during program which is M-F for most of the regular day hours 8-5. The rest of the time with us during off program hours, we do what we can by bringing him to the potty. We track data every time he goes to the potty. He has an entire potty schedule depending on if he goes, if he is dry, if he is wet and goes, if he initiated and goes, on and on, etc. etc.
i.e. If he is dry and doesn't go, we take him every 15 minutes until he goes, or is wet. If he goes pee, and is dry he gets a break for 5 minutes from his program. If he is wet and doesn't go, he doesn't get a break. It is sad to see him try to get to the living room (where he likes to take a break) when he goes pee but was wet. I still don't think after all this time he understands that he doesn't get a break if he is wet. If he goes poo, he gets a 10 minute break. This is what he got today. I saw on his face that he knew it was an awesome thing that he did. I still have hope, but not sure that it will happen again any time soon.
I have to say, for me, it is heartbreaking though to have to sit right there with him while he is having such a private moment. Unfortunately, with his seizures and instability sitting up on the potty, for his safety, it will be like this for a long time.
Potty routine is not only "going" potty on the toilet and being dry in the diaper but it also includes everything from turning on the light switch to washing hands after. All of these things are prompted and originally started with a hand over hand prompt and are now anywhere from an elbow to a bicep prompt.
It is getting more strange to do the diaper thing. Ray and I have gotten it down to a science after all these years. Which diaper is best, how to tape them the best, how many we need to have with us when we go out. We have boxes and boxes of diapers in our garage along with chux and diaper pad inserts and boxes of wipes.We are diaper aficionados I have to say. I remember moving from the cute baby type diapers to the more industrial looking ones as he got older. I was sad. It was something that I really didn't imagine. It felt very "old-folks-home"-like to me. It really is minor in the whole scheme of things now that I look back at it. But at the time, it was like losing a little bit more of my dream of having a child who might "grow" out of these special needs he had as a toddler.
Now, he is in early puberty in all its' glory. This is very weird. It just doesn't seem right for me to see my son like this. He is completely dependent on us though. He doesn't know how to wipe or to stay clean without our help. Very sad but all the more reason for Ray and I to step up to the plate. God knew that he would be in good hands with us, I truly believe that now after all these years. I wonder what it will be like when he is 15 and I am doing this. We will just take it day by day as we always do. At 15 though, I know lifting him off the floor to take him potty will be much more difficult on my back than it already is. Again, all the more reason for Ray and I to take care of us, so that we can take care of him. Gotta go, time for potty for Nicholas. :-)
Nicholas is still in diapers. He is going to be turning 11 this summer. Don't get me wrong, he has had so much success with potty routine. He has come a long way, but it has also been a very long road. Most people are done with the joy of potty training by age 3, maybe 4 if you are unlucky. Maddie was pretty much done at 2 and I remember being so thrilled to not have 2 kids in diapers any longer.
Nicholas' situation is a bit more difficult. He is neurologically impaired, and so the doctors didn't know if he could even go potty on command or have the capability to "hold" it and stay dry for a period of time. But the doctors also said he may never walk, make sounds or be able to communicate in any way also, and he has proved them wrong little by little.
I remember when Nicholas was younger, potty training age, I had hope that he would totally get it. Hope is something you never ever give up but over the years, I have to admit it has wained a bit when it comes to potty training.
Nicholas is brought to the potty every 45 minutes during program which is M-F for most of the regular day hours 8-5. The rest of the time with us during off program hours, we do what we can by bringing him to the potty. We track data every time he goes to the potty. He has an entire potty schedule depending on if he goes, if he is dry, if he is wet and goes, if he initiated and goes, on and on, etc. etc.
i.e. If he is dry and doesn't go, we take him every 15 minutes until he goes, or is wet. If he goes pee, and is dry he gets a break for 5 minutes from his program. If he is wet and doesn't go, he doesn't get a break. It is sad to see him try to get to the living room (where he likes to take a break) when he goes pee but was wet. I still don't think after all this time he understands that he doesn't get a break if he is wet. If he goes poo, he gets a 10 minute break. This is what he got today. I saw on his face that he knew it was an awesome thing that he did. I still have hope, but not sure that it will happen again any time soon.
I have to say, for me, it is heartbreaking though to have to sit right there with him while he is having such a private moment. Unfortunately, with his seizures and instability sitting up on the potty, for his safety, it will be like this for a long time.
Potty routine is not only "going" potty on the toilet and being dry in the diaper but it also includes everything from turning on the light switch to washing hands after. All of these things are prompted and originally started with a hand over hand prompt and are now anywhere from an elbow to a bicep prompt.
It is getting more strange to do the diaper thing. Ray and I have gotten it down to a science after all these years. Which diaper is best, how to tape them the best, how many we need to have with us when we go out. We have boxes and boxes of diapers in our garage along with chux and diaper pad inserts and boxes of wipes.We are diaper aficionados I have to say. I remember moving from the cute baby type diapers to the more industrial looking ones as he got older. I was sad. It was something that I really didn't imagine. It felt very "old-folks-home"-like to me. It really is minor in the whole scheme of things now that I look back at it. But at the time, it was like losing a little bit more of my dream of having a child who might "grow" out of these special needs he had as a toddler.
Now, he is in early puberty in all its' glory. This is very weird. It just doesn't seem right for me to see my son like this. He is completely dependent on us though. He doesn't know how to wipe or to stay clean without our help. Very sad but all the more reason for Ray and I to step up to the plate. God knew that he would be in good hands with us, I truly believe that now after all these years. I wonder what it will be like when he is 15 and I am doing this. We will just take it day by day as we always do. At 15 though, I know lifting him off the floor to take him potty will be much more difficult on my back than it already is. Again, all the more reason for Ray and I to take care of us, so that we can take care of him. Gotta go, time for potty for Nicholas. :-)
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