In Loving Memory
James Robert
.
.
.
Born
Wednesday, December 15, 2004
London Health Sciences Centre
London, Ontario
.
Passed Away
Friday, November 23, 2007
Hospital for Sick Children
Toronto, Ontario
.
Age
35 months
.
.
.
.
.
On Wednesday, December 15, 2004 at 9:58am the Lord blessed our family with what was deemed to be healthy baby boy. This was a great relief
after 
losing James older brother Justin, due to pregnancy complication and prematurity (born at 27 weeks) and after what had felt like an extra long pregnancy due to being on partial bed-rest, developing gestational diabetes, having slightly raised blood pressure levels, and some concern over the placenta's defficiency. But all appeared well at that time for which we were very thankful.
after 
losing James older brother Justin, due to pregnancy complication and prematurity (born at 27 weeks) and after what had felt like an extra long pregnancy due to being on partial bed-rest, developing gestational diabetes, having slightly raised blood pressure levels, and some concern over the placenta's defficiency. But all appeared well at that time for which we were very thankful. .
PROVIDENTIAL MOVE
Two weeks after James was born we moved from our big old farmhouse out in the country to smack-dab in the middle of the city. At that time the reason for moving was so Rob could begin his studies at McMaster University, but as time went on we could see the Lord's timing in Rob's decision to return to school and our decision to move the family. If we thought the 20 months of James' illness were rough where we are now, we do not want to begin to imagine what it would have been like living out in the country, an hours drive from the nearest children's hopsital, where every appointment becomes a day-long event, and with often 1-3 appointments a week ... well you can figure out the rest.
.
ONSET OF SYMPTOMS 
Many times we are asked how we knew something was wrong with James and at what age did we start to see signs of trouble. For the first 13 months of his life, James appeared to be mostly a normal, but colicky, child. There were signs of trouble already, unfortunately we didn't read them the way we could have had we known. James was a fussy baby, but after an extremely colicky sister before him, we did not think too much of this. Comfort also went a long ways with James and if 
he was held he was often happier, and so we wrote him off as another colicky baby. Often in the evenings James was awake, fussy and crying until 10-11pm, even holding him did not always make him happy, and this went on until he was about six months, when he finally started going to bed a bit earlier (8-9pm), but remained a fussy child. We labeled James as a high maintance child and carried on. Rebecca had been extremely colicky and at a year things finally settled for her, so we hoped the same for James.
he was held he was often happier, and so we wrote him off as another colicky baby. Often in the evenings James was awake, fussy and crying until 10-11pm, even holding him did not always make him happy, and this went on until he was about six months, when he finally started going to bed a bit earlier (8-9pm), but remained a fussy child. We labeled James as a high maintance child and carried on. Rebecca had been extremely colicky and at a year things finally settled for her, so we hoped the same for James. .
.
BREAST-FEEDING ISSUES
Nursing was also a battle with James, who wanted to eat every 1.5-2 hours and I'm still surprised that I lasted until seven months before I finally gave up. Weaning James was a big challenge. Both the girls had been breastfed only babies, who refused to take bottles, the same as James. So I was prepared for a battle of starving James to get him to take a bottle, but not totally prepared as I forgot to factor in that the girls were both eating solids just fine by time I weaned them (at around 8.5 months) and so even though they were stubborn they weren't totally starving. James was not eating solids and yet he still refused to touch the bottle for over 17 hours. He did not look well by time he did take it and I was beginning to worry, but refused to give up - he had to be bottlefed and starving him was the only way to get him to do it.
.
From 2-4 months James slept through the night (going to bed late meant this was really only around an 8 hour stretch) and then it 
stopped until he did it again from 26-28 months old (when we put him on reflux medication). Thinking pablum might help at four months I tried to introduce solids in the hope that he would sleep longer again. Here began our first and most obvious sign that something was wrong. He absolutely refused to take it ... and so the battle went for the next months as I tried to get him to eat solids, but he refused. He would clamp his mouth shut so tight you couldn't get anything in it. Or on other occasions, he would allow us to put it in his mouth, but then dribbled it all back out again. Off and on we tried solids, but the battle never ended, occasionally we 
would have a good few days, where he would gobble up a new food we had tried, and then he quit eating again for a few weeks before we discovered a new food that he would eat. We nicknamed him Bear, for he seemed to eat and then hibernate. The only thing we could pretty consistently get into him was Baby Mum-Mum rice crackers (low in protein), for the rest I was happy to get 1 tsp in him during a meal (and 3/4 of that would usually come back out again). And then there was the fact that he seemed to like pudding, ice cream and all those sweet yummy deserts, making us believe he was just an extremely fussy and extremely stubborn 
child, and so we didn't bother to pursue what would make a child refuse to eat. It didn't help us that he had a belly the size of a whale and anytime I ever complained people would always say "well you must be doing something right, he looks fat and chubby to me". Later we would find out the reason for this large belly (enlarged liver and spleen).
stopped until he did it again from 26-28 months old (when we put him on reflux medication). Thinking pablum might help at four months I tried to introduce solids in the hope that he would sleep longer again. Here began our first and most obvious sign that something was wrong. He absolutely refused to take it ... and so the battle went for the next months as I tried to get him to eat solids, but he refused. He would clamp his mouth shut so tight you couldn't get anything in it. Or on other occasions, he would allow us to put it in his mouth, but then dribbled it all back out again. Off and on we tried solids, but the battle never ended, occasionally we 
would have a good few days, where he would gobble up a new food we had tried, and then he quit eating again for a few weeks before we discovered a new food that he would eat. We nicknamed him Bear, for he seemed to eat and then hibernate. The only thing we could pretty consistently get into him was Baby Mum-Mum rice crackers (low in protein), for the rest I was happy to get 1 tsp in him during a meal (and 3/4 of that would usually come back out again). And then there was the fact that he seemed to like pudding, ice cream and all those sweet yummy deserts, making us believe he was just an extremely fussy and extremely stubborn 
child, and so we didn't bother to pursue what would make a child refuse to eat. It didn't help us that he had a belly the size of a whale and anytime I ever complained people would always say "well you must be doing something right, he looks fat and chubby to me". Later we would find out the reason for this large belly (enlarged liver and spleen). The introduction of formula brought some problems as well, hindsight we realize why. At the time we thought that he did not know how to suck and swallow properly from a bottle, and so we tried many different nipples. It took a couple weeks before he settled down and so we thought it was all a bottle issue. He would gag and sputter, was full of gas and often cried when done the bottle, as well as vomitted at times. We had evenings where he would cry and cry and refused to come near the bottle, we would walk and rock him until he finally slept. What we didn't realize at the time was that his body was having a major protein jolt, and this obviously wasn't going over very well. LPI does not show up when nursing because the mother break downs the protein and so baby only gets already "processed" protein. It took James' body a couple weeks, but surprisingly he did settle and began to enjoy his bottles.
.
RESPIRATORY ISSUES
Looking back through James journal when Matthew was born I began to see there were other signs of trouble earlier on. At two months old I wrote about how James always seemed congested, especially at nights. At first I thought he was coming down with a cold, but the congestion was only at nights, and he never got worse and never had a runny nose during the days. I didn't think much of this either, since Rebecca had asthma from a very young age, which she only gets at nights, so it just seemed he had the same thing, and 
since it wasn't bad enough to keep him awake at nights I didn't bother trying puffers on him ... until he was about a year old. At 11 months he developed a cold that never went away ... except the symptoms only remained at nights, with an awful cough during the nights. So we tried puffers for a bit to see if it was a form of asthma, but this did not help and we eventually took him to the doctor who prescribed antibiotics, which helped ... and so began our respiratory battles of treating the symptom (a secondary infection) by not the cause ... of course at that time we had no idea that this was what we were doing. At about seven months old we began to notice that James would have these bouts where he would have a clear runny nose. We could not figure out what woud cause this, as he did not have a cold (which would have been green and not clear) and appeared well otherwise. We thought it was an allergy of some sort. It would come and go and we never were able to figure it out ... but time would tell us this was part of his lungs/PAP, as in the next years we would see this symptom come and go often. Also already at a young age we noticed that James sweat excessively when he slept (as in he woke up looking like he just took a bath). This also we would later find out to be a symptom of PAP.
since it wasn't bad enough to keep him awake at nights I didn't bother trying puffers on him ... until he was about a year old. At 11 months he developed a cold that never went away ... except the symptoms only remained at nights, with an awful cough during the nights. So we tried puffers for a bit to see if it was a form of asthma, but this did not help and we eventually took him to the doctor who prescribed antibiotics, which helped ... and so began our respiratory battles of treating the symptom (a secondary infection) by not the cause ... of course at that time we had no idea that this was what we were doing. At about seven months old we began to notice that James would have these bouts where he would have a clear runny nose. We could not figure out what woud cause this, as he did not have a cold (which would have been green and not clear) and appeared well otherwise. We thought it was an allergy of some sort. It would come and go and we never were able to figure it out ... but time would tell us this was part of his lungs/PAP, as in the next years we would see this symptom come and go often. Also already at a young age we noticed that James sweat excessively when he slept (as in he woke up looking like he just took a bath). This also we would later find out to be a symptom of PAP. .
FAILURE TO THRIVE
James' 13 months doctors appointment it became apparent that he was not gaining weight as he should. Considering the fact that he was not eating solids, this made sense. Although the doctor noticed it, she was not extremely concerned at this point yet, but did send us to a dietician. Since you usually only see the doctor at 6 months and 13 months (9 months is optional, I opted out of it) she did not have weights for the inbetween period. I did have weights for each month inbetween 6-13 months and it showed that he dropped around 7 months (when we weaned him and his body had to struggle to process the protein) and he struggled from then on. slowly dropping from the 10th percentile to the 5th. Since it was not an immediate or extreme drop we did were not immediately overly concerned. What the doctor did point out at that time was that even though he had a belly the size of a whale, he didn't have any fat on the rest of his body.
.
SEIZURES
As James neared a year in age he began to have what we thought were night terr
ors. He would wake with a specific cry, almost a scream. When we would get to him he would lay there and would not stop crying, he would not recognize you or respond to you. If you picked him up he would be like a rag doll one minute and suddenly be completely tense, going back and forth between these two modes. These started quite mild and not very often, but as we got nearer to his diagnosis at 18 months, they were happening a bit more often and each time it would get worse. Near the end they would last longer and he would end up vomitting. It became obvious these were not night terrors and so they were thought to be seizures but we did not know what from. An EEG was done to see if they could find anything abnormal, but this came back fine. Later we realized this was because of the excess protein; once we had him on the proper diet we never seen another one of these episodes
ors. He would wake with a specific cry, almost a scream. When we would get to him he would lay there and would not stop crying, he would not recognize you or respond to you. If you picked him up he would be like a rag doll one minute and suddenly be completely tense, going back and forth between these two modes. These started quite mild and not very often, but as we got nearer to his diagnosis at 18 months, they were happening a bit more often and each time it would get worse. Near the end they would last longer and he would end up vomitting. It became obvious these were not night terrors and so they were thought to be seizures but we did not know what from. An EEG was done to see if they could find anything abnormal, but this came back fine. Later we realized this was because of the excess protein; once we had him on the proper diet we never seen another one of these episodes .
PROGRESSION OF SYMPTOMS
And so, yes, there were signs that something was wrong during James' first months of life, but we did not put all the signs together to read them as a real problem. The past couple days as I read his journal and look back I wonder how I put up with such a fussy baby who took so much of my time, needing to be nursed every 1.5-2 hours, sleeping very little throughout the day, wanting to be held all the time, crying most of the evenings, and usually only sleeping 5-6 hours for the longest stretch at night, meaning I was often up twice a night. Although the obvious medical challenges began when he was 15 months old, right from the beginning he was a child that took a lot of our time, and considering we had two young girls life, was certainly busy. At 15 months of age we were awakened to the realization that there was something indeed wrong with our little boy.
.
On Tuesd
ay, March 28 2006 James woke up miserable and looking sick, as the day progressed things got worse. By mid afternoon he would just sit there and cry. If you did not hold him he would just let himself fall backwards and lay there crying. I had booked an appointment with our family doctor earlier thinking he had an ear infection, but as he became more and more miserable I realize there was something else going on. That night James was first admitted to St. Joeseph's Hospital and later transferred to McMaster Children's Hospital ... and this is where the blog picks up on James' story. I will never forget that first night in hospital where he cried 
for hour and hours and nothing would quiet him and eventually I just cried with him for I was so tired I didn't know what else to do. For whatever reason he would not allow me to sit, but I had to stand or walk, should I sit he would cry even harder, throwing himself around in my arms. During those first hospitalizations I found myself humming Hymn 48 all the time to him, I'm not sure where or why I picked that hymn, but it stuck and for the next 20 months I would find myself humming and singing it often. We wonder how much pain he was in at that time to cause him to act this way, for over the next year and half he went through a lot of pain, but was always tough and brave and never cried like he did those first two hospitalizations.
ay, March 28 2006 James woke up miserable and looking sick, as the day progressed things got worse. By mid afternoon he would just sit there and cry. If you did not hold him he would just let himself fall backwards and lay there crying. I had booked an appointment with our family doctor earlier thinking he had an ear infection, but as he became more and more miserable I realize there was something else going on. That night James was first admitted to St. Joeseph's Hospital and later transferred to McMaster Children's Hospital ... and this is where the blog picks up on James' story. I will never forget that first night in hospital where he cried 
for hour and hours and nothing would quiet him and eventually I just cried with him for I was so tired I didn't know what else to do. For whatever reason he would not allow me to sit, but I had to stand or walk, should I sit he would cry even harder, throwing himself around in my arms. During those first hospitalizations I found myself humming Hymn 48 all the time to him, I'm not sure where or why I picked that hymn, but it stuck and for the next 20 months I would find myself humming and singing it often. We wonder how much pain he was in at that time to cause him to act this way, for over the next year and half he went through a lot of pain, but was always tough and brave and never cried like he did those first two hospitalizations..
The next three months were difficult as James' health continued to show signs of trouble and we dealt with the frustrations of our medical system. Looking back we realize that we caused James' extra discomforts during those three months by attempting to feed him high calorie formulas in order to get him to grow. High calorie = high protein. His poor little body. It was at that time we began to also see the signs of colitis and we feel that we may have caused this colitis by the excessive protein we tried to give him. But we had no idea and we thought we were doing what was best for him ... just as later we would realize that GM-CSF treatment likely made things worse instead of better. He was finally re-admitted into hospital in order to do investigation and thankfully the answer came a week later.
.
DI
AGNOSIS 
What joy we had on July 5, 2006 when we received the diagnosis of LPI. Although it seemed overwhelming and difficult at the time, we were excited that we had an answer and could move foward, realizing that with some adjustment we could be handled this change in his diet. What disappointment it was to only five days later end up in hospital again, our excitement was quickly dashed. Here began the first of several hospilizations that were a result of his PAP, but it would be another year before we would get this diagnosis.
AGNOSIS 
What joy we had on July 5, 2006 when we received the diagnosis of LPI. Although it seemed overwhelming and difficult at the time, we were excited that we had an answer and could move foward, realizing that with some adjustment we could be handled this change in his diet. What disappointment it was to only five days later end up in hospital again, our excitement was quickly dashed. Here began the first of several hospilizations that were a result of his PAP, but it would be another year before we would get this diagnosis.
.
SECOND HOME
And so began James short but long journey. The hospital became like a second home. He even called it "home" and this past summer he rather enjoyed it there. At that time he was still relatively well and had plenty of time free of "leashes" as he was not on oxygen during the day yet. To him the hospital was a lovely playground where he always got one on one attention. This seemed to overpower the bad things that happened to him there. When we received LOA's to go home for a few hours in the afternoon he was alway eager to go back to the hospital and as soon as supper was over he would sit on the stairs by the door waiting for someone to put his sandals on and would yell "Goooo Hoooomme!!" Getting louder and longer each time he said it, and it took much to distract him and tell him that I was not ready to go just yet.
.
TEDDY 
Previous we have talked about dear Teddy on the blog (see here) and as you look through the various pictures on the blog you will often see Teddy hanging out somewhere in the background, or maybe even in the foreground. Teddy was indeed James' best friend. James and Teddy had their good time and bad
times, their close times and distant, but throug
h thick or thin Teddy was there and there was nothing worse then losing him when visiting at someones house ... 40 minutes later and we're still looking for Teddy (remember doing this Dave?). The odd thing was that usually James knew exactly where he was even if they hadn't played all day. But when ready to go home from visiting, he would be asleep already and we were on our own to find Teddy.
Previous we have talked about dear Teddy on the blog (see here) and as you look through the various pictures on the blog you will often see Teddy hanging out somewhere in the background, or maybe even in the foreground. Teddy was indeed James' best friend. James and Teddy had their good time and bad
times, their close times and distant, but throug
h thick or thin Teddy was there and there was nothing worse then losing him when visiting at someones house ... 40 minutes later and we're still looking for Teddy (remember doing this Dave?). The odd thing was that usually James knew exactly where he was even if they hadn't played all day. But when ready to go home from visiting, he would be asleep already and we were on our own to find Teddy. What a comfort Teddy was to James, who took him to bed with him all the time. During the earlier days of their friendship it was hard to tell how real teddy really was in James'
mind, for he took him everywhere, had him partake in everything, "talked" to him, fed him, took him for rides in his truck, etc. There was a stage where James was slowly going his seperate way from his dear friend and would even go to bed without realizing he did not have Teddy. But when he became sick again it became apparent how important Teddy still was. Especially on the pictures of his last hopsital stay you can see Teddy in a lot of the pictures and even though he took a liking to his new SickKids Teddy Bear, when the going got really rough it was dear old Teddy he depended on. Teddy and Blankie, what a comfort those were to James.
mind, for he took him everywhere, had him partake in everything, "talked" to him, fed him, took him for rides in his truck, etc. There was a stage where James was slowly going his seperate way from his dear friend and would even go to bed without realizing he did not have Teddy. But when he became sick again it became apparent how important Teddy still was. Especially on the pictures of his last hopsital stay you can see Teddy in a lot of the pictures and even though he took a liking to his new SickKids Teddy Bear, when the going got really rough it was dear old Teddy he depended on. Teddy and Blankie, what a comfort those were to James. .
TRUCKS
"I like trucks, I always will, big or small I like them still. I like trucks I always will. I liiiikkkkkeeeee trucks!!" 
Any
one who's spent a bit of time with James will know this song.
Any
one who's spent a bit of time with James will know this song..
And what boy does not love his trucks?
Already as a little boy James loved trucks for when we drove down the highway he would point each of them out to us. He was thrilled whenever Rob brought the truck home to wash it and would joyfully sit in the drivers seat watching Rob and the girls at work. During the spring, James' true boy colours shone out even more clearly as they began to do work on the next road over. It was our road that all the trucks and equipment would travel up and down to get to the construction site. All day long gravel trucks, loaders, backhoes, dump trucks, etc travelled by our house and pretty much all day long James stood by the front window, out on the porch or in the driveway watching them. We found some imitation plastic equipment to match each of the vehicles that would go by our house and James spent many hours playing with these ... or instructing others on what their proper names were.
.
James also found a great use for these toys ... they became his mealtime entertainment. Once he stopped eating any sort of solid food we had to work a bit harder to keep him entertained during mealtimes, but it wasn't long before we discovered the trick. Give him his excavator and dump truck, along with his bowl of food and he was content. He would scoop the food up with his excavator, dump it into the dump truck, back the dump truck up to his bowl and unload ... and so the process would go for the duration of the meal. N
ow talk about breaking the rules!!
ow talk about breaking the rules!! .
In hospital James spent a lot more time watching TV ... Treehouse to be exact ... so much time that he could sing the Treehouse "song" and say that proper things are the proper time when watching Bob (or many of the other shows). He loved to watch Bob the Builder and Mighty Machines. The great thing was that mom and dad loved to watch those shows too ... especially dad!! :)
.
.
When well enough James liked to sit up in his hospital window watching the cars and trucks down below. He had excellent ears and could hear the firetrucks coming (code Reds weren't all that uncommon) and then I'd have to rush to get him to the window so he could watch all the firetrucks that parked on the st
reet below.
reet below.
.
.
.
.
.
.
.
.
.
.
.
.
LIFE IN GENERAL
We already talked about James' early days of crying and stubborness, but even at a young age he still was an enjoyable fellow ...as are most all babies. We had are fun with hi
m. And just like all children he slowly developed a character. There is no way to explain James' character. A nurse recently wrote in a card that there was no good way to describe James but to simply say he was "James". He had an ability to accept all that was put before him and still enjoy life. Even when ill he managed to carry on, mostly happy and content. Each time we seen him head on a downhill slope it took us a long time to feel that he was truly sick enough to take him to Emerge because he would tolerate everything so well. He's walked around with fevers as if nothing was wrong, playing and enjoying himself. Several times I arrived in Emerge embarrassed because once we got there he perked up enough to go play and appear well again. We often ended up in Emerge during the middle of the night, which was always his worst times. He always knew when it was dark out and mom and dad were packing him into the van that he was heading off to the hospital, but he never complained. It was like he knew that he was sick enough and needed the help and this gave him some sort of extra boost to appear well when he arrived. As time went on the doctors began to realize that he was indeed sick and it was only a matter of time before he'd "crash" again and they'd see the true symptoms.
m. And just like all children he slowly developed a character. There is no way to explain James' character. A nurse recently wrote in a card that there was no good way to describe James but to simply say he was "James". He had an ability to accept all that was put before him and still enjoy life. Even when ill he managed to carry on, mostly happy and content. Each time we seen him head on a downhill slope it took us a long time to feel that he was truly sick enough to take him to Emerge because he would tolerate everything so well. He's walked around with fevers as if nothing was wrong, playing and enjoying himself. Several times I arrived in Emerge embarrassed because once we got there he perked up enough to go play and appear well again. We often ended up in Emerge during the middle of the night, which was always his worst times. He always knew when it was dark out and mom and dad were packing him into the van that he was heading off to the hospital, but he never complained. It was like he knew that he was sick enough and needed the help and this gave him some sort of extra boost to appear well when he arrived. As time went on the doctors began to realize that he was indeed sick and it was only a matter of time before he'd "crash" again and they'd see the true symptoms..
And that was how his character was throughout his short life. He took challenges in a strides, adjusting to each one of them as they came. He of course did not enjoy pain or hurt anymore then the next person does, but he rarely bucked the system. He quickly knew who the IV nurses were and would repeat over and over "all done, all done" but at the same time he would put out his arm and lay perfectly still while they did what they had to do. In later days he knew the x-ray department and for each trip we went down he would repeat the 
whole way down "no picture, no picture" almost working himself into a state of panic. But when he arrived he did exactly what he was told, and after a while even told them how it should be done, in typical James mannerism which everyone loved. Then he would have a pleasant ride back to his room. And after he completed each procedure, test, poke, prod, etc he returned to his happy cheerful self again, waving a friendly good-bye, never holding a grudge.
whole way down "no picture, no picture" almost working himself into a state of panic. But when he arrived he did exactly what he was told, and after a while even told them how it should be done, in typical James mannerism which everyone loved. Then he would have a pleasant ride back to his room. And after he completed each procedure, test, poke, prod, etc he returned to his happy cheerful self again, waving a friendly good-bye, never holding a grudge..
At 18 months James began to be tube feed and he accepted this attachment without much issue. Instead of seeing it as a restriction, already at that age he learned how to push the IV pole around to get to where he wanted to go, and calling for help if it was somewhere he couldn't push the pole by himself. He knew the limits on the length of his tube and how to watch that the tube wouldn't get stuck under the wheels of the IV pole. As he got older, he did get a bit lazier, realizing that if he called for help it was easier and faster then if he did it himself, but when really determined he would do it himself. Near the end this was no longer possible as he also had an oyxgen tank but by that point he didn't spend much time wandering around anymore.
.
We remain so thankful for the beautiful character that James had. Although he was a large burden to our household, we never seen it as a burden at the time. He was so easy to love and so easy to work with that it was just simply the way life was. I suppose he rubbed off on us as well. He took a lot of our time, especially time away from his sisters, but they never complained, for they too seemed to warm up to this loveable character who never complained and always enjoyed life.
.
Sleep was som
ething James never put much stock into. As a baby he often was awake until 10pm (and sometimes later). He almost never slept through the night and was used to a disturbed sleep. Naps were not something he believed in doing as a baby. Eventually he did begin to have short naps. So when it came to hospital life James didn't think much of the idea of sleep either. Usually he went to bed between 10-11pm. He eventually learned how to take naps at the hospital. As his health grew worse the sleep he did get at night was very broken up and far from peaceful. We spent plenty of nights sleeping in the chair with him, or 
him in the chair and us on the floor beside it (as in the pictures). There were also the many, many nights where we slept on the floor in his room so that we could hold his hand for all he wanted was the comfort of knowing we were there ... and then the occasional time where he slept on the floor with us. While home, many times a night we were in his room because he was coughing, moaning, deSATing etc. He seemed to sleep through alot of it, but you really wonder how much true sleep he was getting. Often we had to wake him up to get him to breath proper or readjust him. As his nighttimes became more restless he did end up taking a bit longer naps, but in general he was a child who simply did not take much time out for sleep.
ething James never put much stock into. As a baby he often was awake until 10pm (and sometimes later). He almost never slept through the night and was used to a disturbed sleep. Naps were not something he believed in doing as a baby. Eventually he did begin to have short naps. So when it came to hospital life James didn't think much of the idea of sleep either. Usually he went to bed between 10-11pm. He eventually learned how to take naps at the hospital. As his health grew worse the sleep he did get at night was very broken up and far from peaceful. We spent plenty of nights sleeping in the chair with him, or 
him in the chair and us on the floor beside it (as in the pictures). There were also the many, many nights where we slept on the floor in his room so that we could hold his hand for all he wanted was the comfort of knowing we were there ... and then the occasional time where he slept on the floor with us. While home, many times a night we were in his room because he was coughing, moaning, deSATing etc. He seemed to sleep through alot of it, but you really wonder how much true sleep he was getting. Often we had to wake him up to get him to breath proper or readjust him. As his nighttimes became more restless he did end up taking a bit longer naps, but in general he was a child who simply did not take much time out for sleep. .
The last months of James' life were mostly spent at home. He became homebound because of the humid weather and the large amount of time and effort it took just to take him out on a small trip. It was amazing to see the joy that lit his face when he was allowed to go with somewhere, even if it meant he stayed in the van the whole time and just went along for the drive.
.
It's so hard to think of the last time we pulled him out of bed at 5am the morning and took him to Emerge and how he never got to see home again. Since then, when he woke feeling bad during the middle of the night the first thing he would say was "go home". During the day if something was happening that he didn't like his first words were usually "go home, all done". As time wore on he seemed to accept the hospital as his new home and asked less often, but it still broke my heart.
.
During his last year James took a liking to the telephone. Spending so much time away from his daddy and sisters he discovered this as a way of staying connect with them and eventually also learned to talk to Grandma and Joyce too. Each time I spoke on the phone to them he would ask to also speak to them ... exce
pt he would never speak. He would hold the phone to his ear, his eyes would shine his glee and there was the occasional nod of the head. He was content to do this for quite some time and I would have to take the phone back from him and rescue the person trying to keep a one sided conversation with him. During his last hospitalization James figured out how to actually speak into the phone. It started with a simple "hi", slowly progressing to his famous "uh-huh" and "yep". As time went on he learned how to answer basic questions about what he was doing or watching on TV and how to start and end a conversation. Our last peace of video tape about James is with him speaking to daddy on the phone ending with his precious "Bye Daddy-O". We have no idea where the Daddy-o came from, but for some reason James took a liking to adding "O" to names ending with 'y'... It started with "Hi Daddy-O", but slowly progressed to "Hi Mommy-O" and then Teddy-O, Barney-O .
During his last year James took a liking to the telephone. Spending so much time away from his daddy and sisters he discovered this as a way of staying connect with them and eventually also learned to talk to Grandma and Joyce too. Each time I spoke on the phone to them he would ask to also speak to them ... exce
pt he would never speak. He would hold the phone to his ear, his eyes would shine his glee and there was the occasional nod of the head. He was content to do this for quite some time and I would have to take the phone back from him and rescue the person trying to keep a one sided conversation with him. During his last hospitalization James figured out how to actually speak into the phone. It started with a simple "hi", slowly progressing to his famous "uh-huh" and "yep". As time went on he learned how to answer basic questions about what he was doing or watching on TV and how to start and end a conversation. Our last peace of video tape about James is with him speaking to daddy on the phone ending with his precious "Bye Daddy-O". We have no idea where the Daddy-o came from, but for some reason James took a liking to adding "O" to names ending with 'y'... It started with "Hi Daddy-O", but slowly progressed to "Hi Mommy-O" and then Teddy-O, Barney-O ..
James had
a great love for ride-on toys. He 
did not walk until he was 20 months old, but as soon as his feet were long enough to touch the ground he used ride-on toys as his mode of transportation. As he got older he continued to enjoy these toys, and if it had a spot to store things you would often find Teddy and a few of his favourite dinky cars in the 'glove compartment' under the seat.
a great love for ride-on toys. He 
did not walk until he was 20 months old, but as soon as his feet were long enough to touch the ground he used ride-on toys as his mode of transportation. As he got older he continued to enjoy these toys, and if it had a spot to store things you would often find Teddy and a few of his favourite dinky cars in the 'glove compartment' under the seat. .
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
And what more fun tha
n to fix your car ... just like daddy does.
n to fix your car ... just like daddy does. 
.
.
.
.
.
.
.
.
.
.
.
Camping at 6 and 7 months old
.
.
.
.
.
.
.
.
.
.
Daddy's Boy
.
.
.
.
.
.
.
.
.
.
.
.
.
We will never look at a fooseball table in the same way anymore. James absolutely loved foose
ball and whenever well enough to be out of his room when staying at Mac you would find him at the fooseball table. He became very impressive at it and by time we left Mac he has master the idea of the game and was a challange for me to play against (yes I'll admit I suck at the game - but he was still talented).
.
.
.
.
.
.
.
.
.
Treatment time:
.
.
.
.
.
.
.
.
.
.
.
.
Two weeks before James ended up back in hospital we finally moved him from his crib to a toddler bed. Something we should have done long before that but were always afraid of what might happen if he decided to get out of bed when hooked to all his wires and tubes. He loved the toddler bed and never once crawled out of it.
.
.
.
.
.
.
.
.
.
I didn't have much time to think about how James was going to take to the idea of a baby in the house who would still the never-ending attention that he seemed to get. Good thing I didn't think about it or worry about it because true to the rest of James' character this too he accepted, adjusted and moved on. He loved little "Matt-two", always asking to hold him, helping rock him, watching him play. He never once showed any sign that he thought Matthew was interferring with his life, he found this change entertaining and simply accepted it and carried on. He was a proud big brother.
.
.
.
.
.
.
.
.
.
These pictures were taken a couple hours before James passed away. In James hand you will see his absolute favourite truck. Some of you may remember this truck from various visits, or our previous posting on his 2nd birthday (see here). We had lost/misplaced this precious truck in the spring. The night before James passed away Rob put his winter coat on for the first time for the season and in there he found the Leon's truck. I was not there when Rob showed it to James but I hear that they have never see his eye light up so big or his hand shot out so fast. He did not let go of that truck again until he passed away.
.
.
.
.
.
.
.
.
.
.
.
.
And so there are so many more stories I can write about and pictures I could tell about. Memories that we hope we will forever be able to remember. Although James did not make it to his third birthday and will never be able to celebrate this birthday we take this day to remember that three years ago the Lord entrusted us with a precious gift for which we shall forver remain thankful and grateful for. The Lord in His infinite wisdon decided to take this gift from us and bring him home to a place free of pain and suffering, for this we can rejoice and be glad. Our hearts will forever miss our special boy, but as Life Goes On we can look forward to the day when we too will be together with our Heavenly Father free from the pain and sufferings of this world. And so we say ...
.
Good Nig
ht, Sleep Tight James
.
ht, Sleep Tight James
.
.
.
.
.
.
.
.
.
.
.
