Wednesday, April 29th, 2009
Hello All, Jacob is recovering from eye surgery today. He was not a happy camper. He is in pain but overall still doing well. He was and is such a brave trooper i just can't say it enough. Just when Jason and I think we cant respect him more than we already do, he surprises us and surpasses the strenght he already has.
This surgery was a big decision for us and we hope we made the best decision. We haven't seen his eye yet so we don't know what the final result is but as I said before its not about cosmetic anymore...now its about making him better and giving him the best quality of life we can under these circumstances.
Jacob is still on cloud nine from the birth of his brother. We keep telling him its going to wear off when he is bigger and his brother won't leave him alone but he says "no way jose, that will NEVER happen"...lol
The results of the MRI and spinal tap are in. The MRI shows more shrinkage and the spinal tap was negative so we are happy and hope the rest of his treatments go well and that this journal will end sooner than later with my happy ending.
We found out today that we leave for Montreal May 6th. OMG! That only gives us a week to prepare. We knew we were leaving soon but didn't think it was this soon and there is SO much to do. i am exhausted but will give it my all to get ready so we can get this started once and for all. I am scared. I am ready but scared. As much as I don't want to do this I know in my heart it is our responsibility to give Jacob the best chance of surviving this battle.
Despite the rough moments today with pain management, its another good day under our belt.
Wednesday, April 29, 2009
Monday, April 27, 2009
Welcome to the World, Liam Jacob Randell!
Monday April 27th, 2009
Hello, as you all may have discovered now, our new addition to the family arrived on the the 25th at 1:04 am. It was an unexpected arrival and a hard one but Liam Jacob Randell made it into this world. Jacob's little brother that has been growing in my tummy for the last 6 months in sadness and stress made it and is doing great.
There are no words to describe how happy jacob is. I won't even try and explain you have to see it. He is on cloud nine and already the best brother EVER!!!!!!!!!!!!!!!! Jason and I truly believe this is going to be part of Jacob's healing process. This is exactly what he needs. This is what Jacob needs. Liam's middle name was, of course, chosen after someone Jason and I TRULY admire.
Jacob is doing well. Tonight however a little nauseous from the anesthetic from his MRI today. We are once again, anxiously waiting results. We were told not to expect signaficant results from the radiation yet but we are hoping for shrinkage and not growth so we wait and hope for the best as we always do.
Today was hard, first time Jacob is put to sleep and I wasn't there to give him a hug and a kiss and tell him how proud I am of him but daddy said he was a real trooper.
Liam and I spent the evening with the boys at the hospital and now I am as exhausted as can be...lol so off to bed to start a new day with my beautiful complete family. I just can't ask for any more.
Hello, as you all may have discovered now, our new addition to the family arrived on the the 25th at 1:04 am. It was an unexpected arrival and a hard one but Liam Jacob Randell made it into this world. Jacob's little brother that has been growing in my tummy for the last 6 months in sadness and stress made it and is doing great.
There are no words to describe how happy jacob is. I won't even try and explain you have to see it. He is on cloud nine and already the best brother EVER!!!!!!!!!!!!!!!! Jason and I truly believe this is going to be part of Jacob's healing process. This is exactly what he needs. This is what Jacob needs. Liam's middle name was, of course, chosen after someone Jason and I TRULY admire.
Jacob is doing well. Tonight however a little nauseous from the anesthetic from his MRI today. We are once again, anxiously waiting results. We were told not to expect signaficant results from the radiation yet but we are hoping for shrinkage and not growth so we wait and hope for the best as we always do.
Today was hard, first time Jacob is put to sleep and I wasn't there to give him a hug and a kiss and tell him how proud I am of him but daddy said he was a real trooper.
Liam and I spent the evening with the boys at the hospital and now I am as exhausted as can be...lol so off to bed to start a new day with my beautiful complete family. I just can't ask for any more.
Thursday, April 23, 2009
Getting Ready for Baby
Thursday, April 23rd, 2009
Hi All, its been a bit of a busy week. We are slowly getting ready for baby and trying to get things together for our journey to Montreal. Jacob is doing well. Last Sunday and Monday he gave us a bit of a scare when he fell ill with severe nausea and vomiting and we just didn't know why. But Tuesday started recovering. It could have been a bug(we hope that's all it was). He has had his ups and downs this week. His throat is very sore, so sore it completely paralyzes him. There is not much we can do for that right now except morphine. He said to me the other night..."mama I know its exciting for you and daddy that my throat hurts but not for me, its really bad". He is right, he over hears us say how exciting it is, and well the thruth although he may not completely grasp the idea, the thruth is we are very excited. This just means that things are healing and he is getting more and more feeling. I don't take anything away from him, my heart sinks when he cries because it hurts so much. He is slowly working towards recovery. Yesterday, he played a game with occupational therapy. After his feeding test last friday they were now wondering if the reason he was coughing things back up or gagging to heavily was because he may not have feeling in his mouth because of the paralysis. So they made him taste, sweet, sour, nothing(water) and salty and he got EVERY single one of them. So now we know its safe for him to keep going. I am so happy, no words could ever express the feeling Jason and I have right now. We know its going to be a long rehab process but we are ready!!
He is still vomiting and we still don't know why. Its scares me because i wonder if it will ever go away. It has been there even before all this started so is this something he will have to live with? i don't know but it scares me.
Baby is due soon. Jacob is so very excited and I can't wait for him to be a big brother. No love and bond will ever exist like the one Jacob and his brother will have. I can't wait.
Next week, he is scheduled for his MRI. He will put to sleep for it so we hope he doesn't get too sick. We will be praying for the best for the results. God I need some good news.
In the meantime, we hope to have a good weekend. We hope to get him out of here for a few hours on saturday if its nice out. I can only hope for the best.
I will keep you posted on Jacob and well maybe next time I write Jacob will be holding his baby brother...who STILL doesn't have a name by the way.
Hi All, its been a bit of a busy week. We are slowly getting ready for baby and trying to get things together for our journey to Montreal. Jacob is doing well. Last Sunday and Monday he gave us a bit of a scare when he fell ill with severe nausea and vomiting and we just didn't know why. But Tuesday started recovering. It could have been a bug(we hope that's all it was). He has had his ups and downs this week. His throat is very sore, so sore it completely paralyzes him. There is not much we can do for that right now except morphine. He said to me the other night..."mama I know its exciting for you and daddy that my throat hurts but not for me, its really bad". He is right, he over hears us say how exciting it is, and well the thruth although he may not completely grasp the idea, the thruth is we are very excited. This just means that things are healing and he is getting more and more feeling. I don't take anything away from him, my heart sinks when he cries because it hurts so much. He is slowly working towards recovery. Yesterday, he played a game with occupational therapy. After his feeding test last friday they were now wondering if the reason he was coughing things back up or gagging to heavily was because he may not have feeling in his mouth because of the paralysis. So they made him taste, sweet, sour, nothing(water) and salty and he got EVERY single one of them. So now we know its safe for him to keep going. I am so happy, no words could ever express the feeling Jason and I have right now. We know its going to be a long rehab process but we are ready!!
He is still vomiting and we still don't know why. Its scares me because i wonder if it will ever go away. It has been there even before all this started so is this something he will have to live with? i don't know but it scares me.
Baby is due soon. Jacob is so very excited and I can't wait for him to be a big brother. No love and bond will ever exist like the one Jacob and his brother will have. I can't wait.
Next week, he is scheduled for his MRI. He will put to sleep for it so we hope he doesn't get too sick. We will be praying for the best for the results. God I need some good news.
In the meantime, we hope to have a good weekend. We hope to get him out of here for a few hours on saturday if its nice out. I can only hope for the best.
I will keep you posted on Jacob and well maybe next time I write Jacob will be holding his baby brother...who STILL doesn't have a name by the way.
Saturday, April 18, 2009
Learning to Eat Again
Satuday, April 18th 2009
Tonight I am at the hospital with Jacob and write this blog as I watch my beautiful angel sleep peacefully. He had a good day overall. Slept most of the morning and the rest of the day we just hung out. Daddy went home early today to try and get the baby's room done. So it was a long day for us but a good one. We attempted to go outside for a bit but it was colder than expected so a bit of fresh and back in we came.
Yesterday, Jacob had his feeding study. The day started really rough, he was very sick and vomiting blood and over exhausted his little body was but was able to shake it off and we went ahead with our day. His test, i am happy to say, went well. This is the first good news we've had in quite some time. The swallowing motion is there BUT his gag reflex is so strong, from protecting himself for the last 5 months, that as soon as he would swallow the pudding, he would cough. But according to the occupational therapists they say its just by habit and that he has improved greatly since his last study. So now this means Jacob has alot of hard work ahead of him but they will start to work with him on eating again. He must practice alot and it won't be easy but we are hoping that he will be motivated enough to get the job done. Its still going to take time but its nice to know that the chances of him eating again are good. Had a great evening after that.
Jason and I are so very proud of him, there's just no other way of putting it. I know you all hear us say how strong he is over and over but really this boy has more strenght and courage than you can possibly every imagine. As nervous as he was yesterday he sat there and tried his damn best and for that we love him even more than we already did, if that's even possible.
thank you all for your good thoughts.
Tonight I am at the hospital with Jacob and write this blog as I watch my beautiful angel sleep peacefully. He had a good day overall. Slept most of the morning and the rest of the day we just hung out. Daddy went home early today to try and get the baby's room done. So it was a long day for us but a good one. We attempted to go outside for a bit but it was colder than expected so a bit of fresh and back in we came.
Yesterday, Jacob had his feeding study. The day started really rough, he was very sick and vomiting blood and over exhausted his little body was but was able to shake it off and we went ahead with our day. His test, i am happy to say, went well. This is the first good news we've had in quite some time. The swallowing motion is there BUT his gag reflex is so strong, from protecting himself for the last 5 months, that as soon as he would swallow the pudding, he would cough. But according to the occupational therapists they say its just by habit and that he has improved greatly since his last study. So now this means Jacob has alot of hard work ahead of him but they will start to work with him on eating again. He must practice alot and it won't be easy but we are hoping that he will be motivated enough to get the job done. Its still going to take time but its nice to know that the chances of him eating again are good. Had a great evening after that.
Jason and I are so very proud of him, there's just no other way of putting it. I know you all hear us say how strong he is over and over but really this boy has more strenght and courage than you can possibly every imagine. As nervous as he was yesterday he sat there and tried his damn best and for that we love him even more than we already did, if that's even possible.
thank you all for your good thoughts.
Wednesday, April 15, 2009
"Poor me, right Mama?"
Wednesday, April 15th, 2009
Not much to report. Jacob is doing ok. As before we have good moments in a day which we will take anytime. Daddy is also doing ok. I think exhaustion may have kicked in after him and Jacob finished their routine of radiation every day. He is coping as best he can. We were hoping to head home before Montreal for a bit but it doesn't seem to be reality anymore.
Mama isn't doing too well these days. i think baby is near. i am tired, actually i am beyond tired. My body has hit a new level of exhaustion and I am not sure how i am still able to get up in the mornings. The overnights at the hospital are more than I can handle but don't say anything because i guess its just something I have to do. We are slowly preparing for our new chapter in Montreal and i am so scared. I am scared of what the future will bring after those treatments are done. I really don't know how we will manage there with a new baby. i just don't know how we will do it. I am scared for my Jacob. I just don't know how much his little body can handle anymore. Everytime he is sick now, everytime he vomits he says "its not fair" and he is right. Its just not fair. The other night as i held him as he was throwing up he looked up to me and said "poor me, right mama, poor me?" he was looking for confirmation that it was ok for him to feel the way he was feeling. What else could I say except yes, poor you baby. We are now trying to prevent a pneumonia since he has a bit of built up in his left lung.
Easter weekend just passed. Holidays are no longer holidays for us but we had a good weekend. He did very well except for monday morning he woke sicker than he had been in quite some time. We managed to steer away from the easter eggs and chocolate that represents easter. We thank all who came to visit for not bringing chocolate and candies. We appreciate it. My beautiful nieces prepared a treasure hunt for him at the hospital with everything BUT chocolates. It was nice. He very much enjoyed that.
This week we have a swallowing test scheduled on friday. We have been seeing much improvment in his voice. And he has been suffering from a brutal sore throat. Which can mean two things. His vocal cord is starting to heal and has movement and he is getting feeling back in his throat. We are SO excited about it but the true test will be friday. THey will once again test his swallowing to see if he is starting to swallow. I am on the edge. I want NOTHING more than for them to tell us that he has started swallowing again or will be soon. Oh how I long for that day. Wish us luck.
Jason and I are still on a high from the overwhelming love and support we have received since this journey began for Jacob. I never thought possible but I truly believe now how I started this journey....With Love Alone, We Will Bring Him Back To Health.
I will keep you posted on the upcoming test. For all those who have faith, I ask that you pray for good results. We need some light in this tunnel we have been walking in for almost 6 months now.
Not much to report. Jacob is doing ok. As before we have good moments in a day which we will take anytime. Daddy is also doing ok. I think exhaustion may have kicked in after him and Jacob finished their routine of radiation every day. He is coping as best he can. We were hoping to head home before Montreal for a bit but it doesn't seem to be reality anymore.
Mama isn't doing too well these days. i think baby is near. i am tired, actually i am beyond tired. My body has hit a new level of exhaustion and I am not sure how i am still able to get up in the mornings. The overnights at the hospital are more than I can handle but don't say anything because i guess its just something I have to do. We are slowly preparing for our new chapter in Montreal and i am so scared. I am scared of what the future will bring after those treatments are done. I really don't know how we will manage there with a new baby. i just don't know how we will do it. I am scared for my Jacob. I just don't know how much his little body can handle anymore. Everytime he is sick now, everytime he vomits he says "its not fair" and he is right. Its just not fair. The other night as i held him as he was throwing up he looked up to me and said "poor me, right mama, poor me?" he was looking for confirmation that it was ok for him to feel the way he was feeling. What else could I say except yes, poor you baby. We are now trying to prevent a pneumonia since he has a bit of built up in his left lung.
Easter weekend just passed. Holidays are no longer holidays for us but we had a good weekend. He did very well except for monday morning he woke sicker than he had been in quite some time. We managed to steer away from the easter eggs and chocolate that represents easter. We thank all who came to visit for not bringing chocolate and candies. We appreciate it. My beautiful nieces prepared a treasure hunt for him at the hospital with everything BUT chocolates. It was nice. He very much enjoyed that.
This week we have a swallowing test scheduled on friday. We have been seeing much improvment in his voice. And he has been suffering from a brutal sore throat. Which can mean two things. His vocal cord is starting to heal and has movement and he is getting feeling back in his throat. We are SO excited about it but the true test will be friday. THey will once again test his swallowing to see if he is starting to swallow. I am on the edge. I want NOTHING more than for them to tell us that he has started swallowing again or will be soon. Oh how I long for that day. Wish us luck.
Jason and I are still on a high from the overwhelming love and support we have received since this journey began for Jacob. I never thought possible but I truly believe now how I started this journey....With Love Alone, We Will Bring Him Back To Health.
I will keep you posted on the upcoming test. For all those who have faith, I ask that you pray for good results. We need some light in this tunnel we have been walking in for almost 6 months now.
Tuesday, April 7, 2009
"I wish I was him again"
Tuesday April 7th, 2009
Hi All,
Well I must start with what seems to be not enough but THANK YOU. Thank you to my friends Sandra, Mariette, Paul and to my sister Ali who 3 months ago decided to put a fundraiser together for us. Who knew it would end up being the best life lesson that I could have ever experienced. Sunday, we were blessed to have been able to see with our own eyes what caring is all about. I would have not believed it if I hadn't seen it. When we walked in and saw all these people, some friends, some I haven't seen in over 10 years, some family, some who have never met us all there for Jacob was a feeling we will never get back. Thank you to ALL who were there , who worked so hard to make it happen and to all who contributed in one way or another. There are simply no words. I am overwhelmed with the love Jacob has around him and its just one more reason to fight the sh*t out of this cancer. Thank you.
Today was an eventful day. It was another chapter in our journey. It was Jacob's last day of radiation. 30 treatments every day for the last 6 weeks. What can I say about my baby? He has shown me more courage than I could every have hoped for...the only problem now is that he has been so brave it feels almost impossible to complain when I give birth...lol :)
We are doing well. There are improvments every day. Some small, some slighty more signaficant. He is generally in better spirits, more energy and having better moments in a day. It scares me to even think that now that he is getting better we are getting ready to take him away from home and when I say home I mean CHEO which right now is his safe haven. To think that now we must start over a whole new part of our journey and make him very sick all over again....in a new city, with new staff, new environment, it is almost incomprehendable to us let alone him.
We had a good day up until this evening. I am heartbroken as I write this blog which started out on a great note. Tonight I did something I thought was a good thing. I made the mistake of showing Jacob the absolutely beautiful video they put together at the fundraiser. That was a big mistake. Instead of making him feel good it made him cry and broke his heart and all he kept saying was "i wish i was him again", "i wish i was the same boy i was in that video". I couldn't believe it, i just wanted to and still want to sink in a dark hole and not come out. How didn't I know that was going to happen? How didn't I know it would make him so sad instead of happy. Tonight, I feel like the worst mommy ever.
I am home now. Crying. Daddy is holding the forth at the hospital. I am not sure how he is right now but all I know is my son will close his eyes and go to sleep tonight filled with sadness.
I am sorry Jacob. I wish I could take that moment back. Oh how I wish i could.
____________
I hope...
I hope you never have to hear the words “Your child has cancer”.
I hope you never have to hear “The prognosis is not good”.
I hope you never have to watch your child prepare to undergo chemo, have a “port” surgically implanted in their chest, be connected to an IV pole, look at you with fear in their eyes and say, “Don’t worry Mom, it’s going to be okay.”
I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the “cure” you pray for slowly take away your child’s identity, as they, lose their hair, become skeletal, develop severe acne, become barely able to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to stay in the hospital for weeks at a time, where there is no privacy, sleeping on a slab, your face to the wall, where you cry in muffled silence.
I hope you never have to see a mother, alone, huddled in a dark hospital corridor crying quietly, after just being told “there’s nothing more we can do”.
I hope you never have to watch a family wandering aimlessly, minutes after their child’s body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope, and fear overwhelm you.
I hope you never have to see your child’s head bolted to a table while they receive radiation.
I hope you never know what it is like to take you child home, (grateful but so afraid) in a wheelchair because the chemo has damaged their muscles, 35 pounds lighter, pale, bald, and scarred, And they look at you with faith in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to face the few friends that have stuck by you and hear them say, “Thank God it’s all over” because you know it will never be over.
Your life becomes a whirl of doctors, blood tests, and MRI’s, and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words “The cancer has returned”.
And your friends become even fewer.
I hope you never have to experience any of these things. Because only then ...
will you understand.
Author: Carol Baan
Hi All,
Well I must start with what seems to be not enough but THANK YOU. Thank you to my friends Sandra, Mariette, Paul and to my sister Ali who 3 months ago decided to put a fundraiser together for us. Who knew it would end up being the best life lesson that I could have ever experienced. Sunday, we were blessed to have been able to see with our own eyes what caring is all about. I would have not believed it if I hadn't seen it. When we walked in and saw all these people, some friends, some I haven't seen in over 10 years, some family, some who have never met us all there for Jacob was a feeling we will never get back. Thank you to ALL who were there , who worked so hard to make it happen and to all who contributed in one way or another. There are simply no words. I am overwhelmed with the love Jacob has around him and its just one more reason to fight the sh*t out of this cancer. Thank you.
Today was an eventful day. It was another chapter in our journey. It was Jacob's last day of radiation. 30 treatments every day for the last 6 weeks. What can I say about my baby? He has shown me more courage than I could every have hoped for...the only problem now is that he has been so brave it feels almost impossible to complain when I give birth...lol :)
We are doing well. There are improvments every day. Some small, some slighty more signaficant. He is generally in better spirits, more energy and having better moments in a day. It scares me to even think that now that he is getting better we are getting ready to take him away from home and when I say home I mean CHEO which right now is his safe haven. To think that now we must start over a whole new part of our journey and make him very sick all over again....in a new city, with new staff, new environment, it is almost incomprehendable to us let alone him.
We had a good day up until this evening. I am heartbroken as I write this blog which started out on a great note. Tonight I did something I thought was a good thing. I made the mistake of showing Jacob the absolutely beautiful video they put together at the fundraiser. That was a big mistake. Instead of making him feel good it made him cry and broke his heart and all he kept saying was "i wish i was him again", "i wish i was the same boy i was in that video". I couldn't believe it, i just wanted to and still want to sink in a dark hole and not come out. How didn't I know that was going to happen? How didn't I know it would make him so sad instead of happy. Tonight, I feel like the worst mommy ever.
I am home now. Crying. Daddy is holding the forth at the hospital. I am not sure how he is right now but all I know is my son will close his eyes and go to sleep tonight filled with sadness.
I am sorry Jacob. I wish I could take that moment back. Oh how I wish i could.
____________
I hope...
I hope you never have to hear the words “Your child has cancer”.
I hope you never have to hear “The prognosis is not good”.
I hope you never have to watch your child prepare to undergo chemo, have a “port” surgically implanted in their chest, be connected to an IV pole, look at you with fear in their eyes and say, “Don’t worry Mom, it’s going to be okay.”
I hope you never have to hold your child while they vomit green bile.
I hope you never have to feed them ice chips for lunch.
I hope you never have to watch the “cure” you pray for slowly take away your child’s identity, as they, lose their hair, become skeletal, develop severe acne, become barely able to walk or move, and look at you with hope in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to stay in the hospital for weeks at a time, where there is no privacy, sleeping on a slab, your face to the wall, where you cry in muffled silence.
I hope you never have to see a mother, alone, huddled in a dark hospital corridor crying quietly, after just being told “there’s nothing more we can do”.
I hope you never have to watch a family wandering aimlessly, minutes after their child’s body has been removed.
I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope, and fear overwhelm you.
I hope you never have to see your child’s head bolted to a table while they receive radiation.
I hope you never know what it is like to take you child home, (grateful but so afraid) in a wheelchair because the chemo has damaged their muscles, 35 pounds lighter, pale, bald, and scarred, And they look at you with faith in their eyes and say, “It’s going to be okay Mom.”
I hope you never have to face the few friends that have stuck by you and hear them say, “Thank God it’s all over” because you know it will never be over.
Your life becomes a whirl of doctors, blood tests, and MRI’s, and you try to get your life back to normal while living in mind-numbing fear that any one of these tests could result in hearing the dreaded words “The cancer has returned”.
And your friends become even fewer.
I hope you never have to experience any of these things. Because only then ...
will you understand.
Author: Carol Baan
Wednesday, April 1, 2009
Jacob Visits his Class
Wednesday, April 1st, 2009
hello everyone,
Well its been a busy few days. We are doing as well as can be. Jacob is still having tummy pains and vomiting but they don't seem to be as frequent. We don't know what that means. Not sure if its the meds or if he is just getting better but he is still very frustrated with his tummy pains. When they are there, they seem to paralyze his little body. Walking is not getting better but with his new braces he is a whole new person. He can walk on his own, bend down, get up, all the things he used to be able to do before all this happened. I am still so frustrated that this happened but now that he can function with his braces we are hoping it will just help his legs get stronger and go back to the way he was. We saw the opthamologist this week. Jason and I have finally decided to go with the permanent stitch of his left eye. We were fighting it for so long hoping it would eventually get better but the doctor is pretty certain that its healed as much as it is going to after 5 months. So we will be putting a permanent stitch at the end of his eye to help it close completely. This way, he has a better chance at regaining his vision. We are ok with it now. We don't care what his eye looks like, he is still beautiful to us and we now just hope we can save his vision.
On a happier note. Jacob went to Disney on Ice. It was a beautiful day and we made it through the 2 hours show. He sat on Jason's lap the entire time and was mesmorized by the show. Jason on the other hand I think stared at Jacob the entire time. He was mesmorized by the smile on his son's face. Yesterday, we went to school!! It was suppose to be a short visit but it turned out to be an afternoon in class. Jacob walked into the classroom and without hesitation walked right to his seat. The seat that has been empty for 5 months TOMORROW. Its like he never left. I had to immedietely walk out of the classroom to shed some tears. It was the most overwhelming feeling I have ever had. It was happiness and the biggest saddness i have ever felt all at the same time because i then realized just how much he deserved to be there. He deserved to be a kid again. He doesn't deserve to be in a hospital bed fighting for his life. Its just not fair.
He had a wonderful day. One of the best days we have seen in a long time!!
Sharon, i like that quote. It is absolutely right, everyone asks us how we do it, how we get through the days. We don't have a choice, we have to....because Strong is all we've got...can't put in better words.
Nada, I was only able to listen to that song once, it was all my heart could take but boy is it the outline of my family.
I am again overwhelmed by all your support. I will end this blog for now as tears have blinded my computer screen.
Goodnight.
hello everyone,
Well its been a busy few days. We are doing as well as can be. Jacob is still having tummy pains and vomiting but they don't seem to be as frequent. We don't know what that means. Not sure if its the meds or if he is just getting better but he is still very frustrated with his tummy pains. When they are there, they seem to paralyze his little body. Walking is not getting better but with his new braces he is a whole new person. He can walk on his own, bend down, get up, all the things he used to be able to do before all this happened. I am still so frustrated that this happened but now that he can function with his braces we are hoping it will just help his legs get stronger and go back to the way he was. We saw the opthamologist this week. Jason and I have finally decided to go with the permanent stitch of his left eye. We were fighting it for so long hoping it would eventually get better but the doctor is pretty certain that its healed as much as it is going to after 5 months. So we will be putting a permanent stitch at the end of his eye to help it close completely. This way, he has a better chance at regaining his vision. We are ok with it now. We don't care what his eye looks like, he is still beautiful to us and we now just hope we can save his vision.
On a happier note. Jacob went to Disney on Ice. It was a beautiful day and we made it through the 2 hours show. He sat on Jason's lap the entire time and was mesmorized by the show. Jason on the other hand I think stared at Jacob the entire time. He was mesmorized by the smile on his son's face. Yesterday, we went to school!! It was suppose to be a short visit but it turned out to be an afternoon in class. Jacob walked into the classroom and without hesitation walked right to his seat. The seat that has been empty for 5 months TOMORROW. Its like he never left. I had to immedietely walk out of the classroom to shed some tears. It was the most overwhelming feeling I have ever had. It was happiness and the biggest saddness i have ever felt all at the same time because i then realized just how much he deserved to be there. He deserved to be a kid again. He doesn't deserve to be in a hospital bed fighting for his life. Its just not fair.
He had a wonderful day. One of the best days we have seen in a long time!!
Sharon, i like that quote. It is absolutely right, everyone asks us how we do it, how we get through the days. We don't have a choice, we have to....because Strong is all we've got...can't put in better words.
Nada, I was only able to listen to that song once, it was all my heart could take but boy is it the outline of my family.
I am again overwhelmed by all your support. I will end this blog for now as tears have blinded my computer screen.
Goodnight.
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