"Bye Daddy-O"

It's so ironic that the last home video we have of James is when he is on the phone at the hospital talking to daddy. It was the night before his first whole lung lavage (Oct 9). His very last words are "Bye Daddy-O". I think we cry everytime we watch it.

Here is the last picture we have of James before his lungs died (taken Oct 30). One year ago his third Whole Lung Lavage (WLL) failed and we remember this day as the day that James "really died". It was the day his lungs stopped functioning on their own. If we had known the outcome at that point we wouldn't have put him through the next three weeks of agony. But of course at that time we were holding on and clinging to any hope that something could still be done.

This picture was taken the night before his last lavage. Our daily routine was to have a chat with the girls and daddy just before the girls went to bed. I was just prepping James for a haircut and bath when they called. And so it's ironic that not only is his last video of "bye daddy-o" but that last picture of when he was still "alive" and could still talk is also on the phone saying goodnight and "bye daddy-o".

I cannot believe that a year has gone by already. I cannot believe a year ago we watch doctors swarm into James room as he clung to live. I cannot believe that a year ago I was living in Toronto at the hospital. I cannot believe how much life can change in one years time.

What I can believe and see is that our Heavenly Father has most certainly carried us through this past year. Where would we be now without Him and the hope and comfort he provides?!?

Blogging

So often I have blogs running through my mind as I go about my daily work ... but I just can't seem to find the time to get behind the computer lately. So one of these days I'll get around to writing again but half the time I can't be bothered since I sometimes think we should just change the name of the blog to "Always Something Medical". No really ... life's not that bad ... and it's not just medical stuff I've been caught up in. Lately I've developed a renewed zest for life and have been busy with lots of stuff ... just not computer stuff. But for now I must get my essay done for Women's Society before I bother with any other computer stuff.

I'm Not Superstitious ... Really!!

... BUT ... I cannot comment on how Matthew has been doing lately :)

Reverse Psychology

I think it's time to try a bit of reverse psychology before everyone in our house goes completely insane. I hate complaining but maybe a bit of complaining will do some good this time ... and if not, oh well ... got that off my chest.

Last time I wrote about Matthew I said I wasn't going to talk about how good he was doing as whenever I did he went downhill. Well let me tell you he jumped off a cliff this time ... the next four days he cried and cried and cried. If he was awake he cried about 90% of the time. The only thing that consoled him was being held. For four days we wondered what to do. There was nothing else wrong with him except he cried. And then the fifth day he woke up and no crying, he was content, played well and away he went. We breathed a sigh of relief and thoroughly enjoyed it. There is one good thing about having a miserable child ... you sure enjoy the good moments. That last three days and since then he's been riding a rollercoaster.

On day four of Matthew's none stop crying out of desperation we made yet another change to his diet. We now have him on a Fructose friendly diet along with his other restrictions. There was no real logic behind this, he had been eating a lot of fruit (alot in Matthew terms and in proportion to the rest of his diet), but he's been eating fruit for a long time, so that's not really a change. He did during that week binge on pears a few times when he got into the ones that were ripening for canning ... and pears are a big no-no for someone on a fructose friendly diet. We feel like we're grasping at straws ... for some reason he refuse to eat and so we associate it with something he must be intaking and so we're always evaluating what he intakes. We tell ourselves to stop because nothing changes and there's really nothing more we can take out of his diet, but we can't help wanting to do something to make him happy. From the Fructose Support Group I seen a pattern in that it's quite common for multiple members of a family (direct family or close relative) to have FM and so we grasped at this straw as a possibility. We've often said that even when he eats nothing and only drinks formula he's still miserable so there is really no more we can take out of his diet. But what if there is something in his formula? There are many rare things out there, so I'm sure that this formula isn't the greatest for every child, but it's a pretty safe option ... except it's not fructose friendly.

And so has begun our next battle. What to do next? He drinks 45-50oz of formula per day ... even with a good fructose tolerance level that would be too much fructose in a day. We adjusted his diet and began to back off on his formula. This would have the additional benefit that we would be able to see what happens when we start to "starve" him into eating. After a week I realize backing off the formula wasn't going to be enough so I also put out a call about whether they could do infant fructose intolerance testing here (not all hospital do it for children under three) and inquiring about changing to a fructose friendly formula.


To add to his miserableness Matthew developed a nice chest cold last week. So on top of us limiting his formula (which we had down to 30oz a day ... still plenty, just not enough for his liking) he began vomiting again. This supports of theory that he vomits whenever his system is low and he's fighting something whether gut related or not. So between the limited intake and the vomiting he wasn't get near the formula he was used to. (I won't go into how unhappy and sad he was and how many nights and hour per day I spent sleeping in the chair with him).

Needless to say he isn't eating any better now - three weeks into the limited intake and being mostly recuperated from his cold. So today I gave up and fed him what he wants. We're all tired of the crying, we haven't gained anything from the attempt and now he's getting up 2-3 times a night ... so ... I give up before we all go insane.

Today I got the answer about the Fructose Testing. They are able to do it and are in the process of booking a test for him. I don't look forward to doing the test (he will have to fast 12 hours before the test, then the test is 3 hours long ... this for a child who doesn't sleep thru the night and goes beserk at night if you don't get the bottle to him fast enough) but I do hope it will give us an answer either way.

I also got the answer about changing his formula. There is no fructose friendly formula available in Canada. I shouldn't really say nothing available ... but the only fructose friend formula that we can get is extremely expensive and only covered if you have Hereditary Fructose Intolerance (he would only have Dietary Fructose Intolerance/Malabsorption). Our other option: challenge him on homo milk. Milk is fructose friendly. If he's outgrown his supposed milk allergy then we're all set. So I did some evaluation of the difference between formula and homo milk and it looks like we'll go this route and then give him a multi-vitamin each day to supplement the other things he's missing from the formula. For now we won't think about what happens if he can't handle milk or soy.

We're really grasping at straws, hoping to find something that explains what make our dear boy so unhappy. Sometimes I wonder if it's just psychological. Does he have emotional problems? His happy stages are short lived and suddenly he snaps and that's it ... he cries and cries and wants to be held. He does better when we go out or he's more entertained, but we have notice that if it's for a longer period of time then eventually the novelty of that also wears off. He's definitely a mommy-suck which makes me wonder at times if he just cries for attention, but really ... cry that much for attention? Yet he's not a true mommy-suck. He's fine if I go away, fine with other people, etc. But when he's miserable he prefers mom. We're at a lose what to do with him, but we can't just ignore him either.

So here's to hoping if I complain how bad he's doing it will turn around and all be good!! :)


Our little mess maker. Although he's getting better, he still loves the recycling box and is often found looking in there for his favourite - pop cans !







It is so discouraging to discipline him when he's "being good" (as in not crying) and having fun (often if you discipline he cries ... and then doesn't stop - that's it for playing and having fun) ... but the wax paper, cling wrap and foil are no-no's.

Finally!

Well it's been a bit since I last wrote. Somewhat from lack of things to write, but just as much from lack of time to write. Life has just been busy and the computer hasn't really been part of that busyness.

With September came the start of school again. The kids went back to school on September 2nd and Rob started the following week on September 8th. With this has brought some routine to our lives again. I think this is the most routine we've had in a good number of years. Matthew still tends to throw some loops into the routine, but it's much better then in the spring. I am much more dedicated to trying to be more dedicated to the routine. After several years of "flying by the seat of our pants" it's good to have settled down a bit. Of course life is never quite as settled as we'd like, but at least I feel more on top of things now.

If I look back then I'm not quite sure where all the busyness came from, I guess it's just regular life. I was under the weather for a bit at the beginning of the month. Then societies started again, some visiting here and there, appointments here and there, various canning and freezing ... and before you know it the days are full.

A couple weekends ago we had a chance to get away to Chatham for a few days. This visit was very long overdue and extremely well enjoyed by our family. The girls have always loved these visits, but this time it really hit them hard, especially Marietta who very strongly wishes we could move back there. No matter how many times we try to explain why we moved it is hard for kids to understand why we chose to move in the first place. Even as parents these weekends often leave us wishing we could move back again. We had a chance to visit various friends and catch up again. We enjoyed lunch at church ... just like "old times". It's so amazing to be able to come and step back in as if we never left the place.


We left home with a cranky but healthy Matthew. By time we arrived in London he had fevers and was somewhat lethargic, but we decided to carry on. Throughout the weekend he had various fevers and several lethargic episodes with some screaming and crying and coughing and gagging ... but we all survived the weekend and all considering had a good time. Monday Matthew was back to his normal cranky self, no more fevers, no more episodes, just extra tired. Strange boy.

So I suppose that was the greatest highlight of the past month. The rest has just been "routine" stuff. The girls are both enjoying school. Rob is also enjoying it, but most definitely feeling the pressures of the work loading on now. We had a bbq last weekend of all the students, professors and their wives. Most were there and so it gave me an opportunity to put a face to a few missing pictures. The girls had a chance to see Daddy's school this past week when we stopped to pick him up one day. There first comment was "Is that all? It's small". Yes, it's a tad bit smaller then McMaster.

We have already settled into the cold and flu season, with Marietta developing Strep throat (again) this past week and then today having a stomach bug. Matthew is also struggling through a cold ... so let's hope this isn't a sign of what the winter is going to be like.

And I think I'll leave it at that and go off to catch some zzzz's.

No More Crawling

Help ... my baby is getting big. :(

I really wanted Matthew to be walking by time we went camping so he would be just a bit less dirty, but since he did not quite make it ... I really rather he didn't walk and stay my baby just a while longer!! :) A couple days ago he decided he was done with crawling and since then has been walking 90% of the time. If he's in a hurry he still crawls at his usual high speeds. He has also just figured out how to crawl down the stairs making him much more indepedent as he does not have to wait for someone to bring him downstairs to play. Of course the girls aren't very thrilled by this new achievement as it means he gets into their stuff more often ... maybe they will learn not to leave their stuff laying around anymore (haha, wishful thinking).

The past month or so has been filled with various appointments. Most of them were appointments we had been waiting for some time for, but didn't really feel they were all that necessary anymore. In order to get our foot in the door and not have to wait again if things go downhill we still attended them. Matthew has been doing well and only two issues remained that made me decide to still go to each appointment - his lack of interest in solids and his unhappiness.

Rob has told me I'm not allowed to write about when he's doing good, since when I do he turns around and things get worse. So I won't talk about how well he's doing these past couple weeks, how he's been happy and playing well, how he's finally showing at least some interest in food ... instead I'll just say that we've been seeing more up periods then down for the last little bit.

We have not seen any vomitting since June and his stools remain good. Since those factors left the equation we have been able to relax and not worry so much about the feeding issues. As well we have not had any more ear infections since the end of June. Matthew drinks about 45-50oz of (expensive) formula per day. We are thankful that this formula is being covered (costs about $10.50 per day for his formula) as it leaves us with less reasons to push changes in his diet and instead we can focus on trying to find some stability.

The GI doctor suggested we start introducing milk now that he is a year old. The Allergist Specialist said his experience says wait and don't start until after 18 months. Both doctors have said that if we run into troubles maintaining our formula coverage they will make sure we get some one way or another. Neither doctors are pushing to take him off formula, both realizing his lack of proper diet means this is the way he gets his nutrients. Allergy testing of various common allergies show that Matthew does not have any immediate reacting allergies. If he has allergies they are delayed reacting (more of an intestine problem) and only by trial and error will we figure out if he does. We have slowly been introducing new foods into his diet - one food per month - so he is now receiving rice, corn and we just started eggs. He continues to be milk-free, soy-free and gluten-free (wheat, oats, barley). Our game plan is to have a happier more stable child before we do any changes to these last three.

Lately we're becoming more optimistic that stability has arrived. Not only is Matthew more happy his general mannerism seems more content and relaxed ... it's like his mannerism says "ahhh this is so much better". Now we wait to see if it's a long-term better or a short-term relief. Since he also now shows interest in foods - as in he points to things to indicate he wants it, and then actually eats it when he receives it (altho usually only small amounts) - we hope that a "long-term better" will mean we can soon decrease his formula intake and "starve" him onto solids. All hopeful and wishful thinking.

Two changes we did, which we are unsure if they have made any difference, as we haven't tested what would happen if we remove them. We started him on a probiotic at the end of June. After several rounds of antibiotics we thought this would be a good idea. We also wondererd if he did better while on antibiotics because it changed the threshing floor in his intestines to a level that was better for him. Whether it has helped or not we do not know, but we do know he hasn't been sick since he started on it. We also started him on Ranitidine (reflux med) at the beginning of August. We finally decided to reattempt this idea when he continued to wake up during the nights with an odd cry, we couldn't tell if it was fear or pain. A week later he began to sleep better at nights. We haven't cured the nighttime issues, it's not uncommon for him to wake, but it's not so regular anymore. He either wakes in the later evening hours or sometime after 5am. Lately I haven't had to get up middle of the night, which is a nice change.

We've seen the ENT (Ear, Nose, Throat) Specialist. Since he has not had any infections lately this was just another "get our foot in the door" appointment. If we return to reoccuring infections in the winter then he will be put on the list for tubes. He still has to go for a hearing test to confirm he hears okay and double check any fluid buildup behind the eardrums. We have no concern about his hearing, it works plenty fine in our opinion. We also seen the Optamologist (Eye Specialist) recently. This was a follow-up appiontment for the spring. Matthew has had what appears to be a "lazy eye" or "wandering eye". More properly called Strabismus. I say appears because his eyes do not look like they are working together, often one is going one way the other the other way ... or so it appears. But so far when they check him they say he is fine, his eyes are symetrical and it's only that he has a wide nose that it causes it to appear or seem like this is happening when it is not really an eye/vision problem. They have never seen him do it at his appointments, but we see him do it all the time and it seems every other doctor we see points it out. They will continue to follow him for the next year or so to see if any comes of it.

When it comes to growth and development Matthew is definitely not having any troubles, another reason we find it easier to not be concerned about his piddly eating habits ... the formula is definitely keeping him up to snuff. He definitely does not lack any energy and has bounced back up on the charts now that he's not vomitting anymore. So here's too hoping he has a better immune system to tackle the winter ahead with a few less illnesses and lots more stability.

Can't believe how fast they grow up!!

Pinery's

From Grand Rapids we headed to Grand Bend, Ontario where we spent five nights camping at Pinery's. Considering this summer (rain, rain and more rain) we did good weather wise, with only rain one night and a some sprinkles the following day. The weather was overcast and gloomy for three of the days, so it wasn't exactly beach weather, but at the same time it wasn't overly hot either. Ted and Lynda (Rob's sister) and there gang were also camping for the week, although our sites were not near each other.

For all the talk about Pinery's I must say we weren't all that impressed with the park. I suppose everyone is looking for something different when camping so what some like others won't. The one thing we noticed was the extremely small sites at Pinery's with very little privacy. Yes there were trees there, but such a thin amount between one site to the next that there was no more privacy then the type of parks where you're sitting out in an open field. Many of the sites were just a small clearing pretty much right on the road and some of them had trees still scattered throught the middle of it ... okay for tent camping ... but how does one put a trailer in there? After some looking around we realized that we actually had a rather large site. This is not to say we were impressed with our site as it took some creativity to figure out how to get our large trailer in thereso that it was actually on level ground (thankfully my hubbys a truck driver). The site was large only because it had various clearings off the main area ... but with a firepit right smack in the middle of the site (which we tried to move but with no luck) where were we suppose to put the trailer??? In the end the trailer was just barely off the road and we parked the truck sideways half in the bushes to keep off the road ... worked a bit as a deterent for Matthew to go the road.

So our site was small and they sell you wet firewood, which they refuse to refund, but will exchange for more wet firewood!! No wonder we didn't see a whole lot of fires while we were there. Thankfully there were honest people along the road selling dry wood. For older kids Pinery's would work better, but with little kids we found the park too large and everything far away, seemed we were always hopping in and out of the truck as it was just too far for the girls to bike. But that being said we had a nice week. Matthew ate enough sand to make up for the lack of solids in his diet. By the end of the week his bum was red and raw from the constant sand in his diapers. His face was constantly covered with sand. We had hoped he'd be walking by time we went camping, but no such luck. He took his first steps a few days before we left and can now do about 10 steps or so on his own. He has to learn to slow down as he wants to run instead of walk ... but it's coming.

Must be before breakfast as Matthew's face is still clean .
A more common Matthew look for the week














Marietta and Rebecca studying the campground map.
Matthew checking out his drink options! :)















Rob cooking up breakfast.
Bocce ball game. The girls ran into someone from the Fun-Soccer evenings so she joined them in a round of Bocce Ball.











A walk along one of the trails. It was nice that they provided information phamplets with the trial to give you an idea of what to look at and the significance of various spots.
Mareitta calling Grandma (the rabbit babysitter) to see how Thumper (her rabbit) is doing.















End of the day cleaning ... since it was cool enough we could cover him in long pants and sweaters for the evening and only have to rewash his face and hands before putting him to bed.
Matthew eventually learned that the truck was the place to nap and since we had to use the truck alot he had many short powernaps in there and also some good long naps in his carseat

Recognize this hat anyone?? (No I don't mean from the picture above either).

Evenings around the Fire

Matthew has always had a great facination with cans, especially pops cans. Try as we might to keep him out of the recyling bin he keeps going back. Amazingly he's never cut himself on them.
Sitting with daddy for a few seconds before he's off again ... the boy with the never ending amount of energy. Didn't matter what time he went to bad or how short of nap he had, he was bound to wake us at 6:30 each morning.












Sparkler Fun














Past your bedtime Sam??

Beach Time

Matthew loved the beach. He actually only went one day. We arrived too late on Monday to get to the beach by time we set up. Tuesday we had nice weather and spent the afternoon at the beach. Thursday it was cool and rainy so we didn't go. Wednesday and Friday we had overcast and since Matthew need a nap and I wasn't going to get a tan sitting in the shade I stayed at the camper with Matthew while Rob took the girls. If I had known I'd only make it to the beach once I would have taken more pictures ... or at least some of the girls!

Canoe Time

Calvin decided it would be fun to ram into our canoe ... Lyndsey wasn't all to keen on the idea ;)









On our way home we stopped in at Jay (Rob's brother) and Tara's for a quick "hi". So I think we've had our fill of Rob's family for a while now!! :)

And so our holidays are done for this year. Although camping is not my thing, we did have a nice time. The girls head off to school on Tuesday (both full-time this year) and Rob has a few days yet before he officially begins next Monday.

Grand Rapids

Well it's been a few years since we've had summer holidays and five years since we made our last trek down to Grand Rapids to visit John (Rob's brother) and Martha and the gang. So off we went for a weekend, this time we took our own beds with (my parents truck and trailer) making the sleeping arrangements a bit easier. The kids had vague memories of our last visit (from photos and video) and were quite excited to get reacquainted with their cousins.

We did good crossing the border each time, only getting held up for 1/2 hour on our way there and sailed through without delay on our way back. The girls were quite interested in this whole concept of going from one country to the next. It's really all above their head, but they did get a chance to see how fortunate we were that we got through so quickly both times as the line heading in the the US when we came back was several km long. Matthew survived the trip, although we were hardly sane by time we got there ;) What a city-slicker that boy is! He's always been a miserable traveller, it's not uncommon for him to cry his way through a trip. He slept only 1/2 hour on the way up and drove us insane the rest of the way. The way back went a bit better (was also a short trip as we didn't go all the way home) as he discovered that sleeping is really the best solution for boredom. But we survived and had a good weekend once Matthew began to understand that he was going to have to sleep in a new spot for a next few days (he only likes his own bed).

The girls had great fun in the pool ... just the right size for them. They attempted to learn how to dive - Rebecca got the hang of it, Marietta's going to need some work in that department. They both passed Swimmer 2 this summer for swimming lessons and for Swimmer 3 they will be in deep water and learning to dive ... no time like the present to learn.













The girls finally leave and give Joe a chance to cool down and relax.
Martha getting her "baby" fix - he's really not all that babish anymore :(















The kids distinctly remember this wagon from their last visit - Marietta went for a ride by Rebecca was too scared (only 1.5 yrs at the time). They couldn't leave without having a ride again ... these poor city-girls where all we have is a push mower.










The first day Marietta, Rebecca and, Tonya were together and playing the entire time. But at supper time Wayne discovered that Rebecca was going to Grade 1 ... just like him. After that Wayne and Rebecca were inseperatable, leaving Tonya and Marietta to develop a wonderful friendship. We'll have to see how our next visit goes since Wayne was quite sure he wants to marry Rebecca ;)















Hanging around the campfire - Martha, Dana, Leanne and John

We had a lovely time and hopefully it won't be five years before our next visit.

Sometimes I think I’d just like to forget everything and move on with my life. Other times I feel like I’m forgetting too much and want to refresh my memory. There’s no happy medium, for I know that I really don’t want to forget, I love the memories we have, I just hate the pain that comes with them. There are times when the pain is not there, I can simply feel the joy of the memories and the joy of the peace that James has. But often there is pain and sadness and regret.

It seems I travel in an up and down pattern. For a period of time I go about life with James in the background, always there, but not affecting my forefront emotions. I can look at his pictures, talk about him and enjoy the memories without feeling those deeper emotions. Then there come times where I suddenly feel I’m losing touch with my boy and I begin to wish I could do more and it consumes much of my mind and time. I find there is no point in attempting to ignore these periods, but instead to throw myself into them, for after a period of time I then feel like I need to step back as he’s consuming too much of my life and I must focus on the current life. Sometimes it’s just the business of life that pulls me away again, sometimes I just do it on my own.

It is during these times that I find myself back involved in the support groups related to James. Where I surround myself with different projects that help with James’ memory, whether it be the photo album I just added to the side of the blog, or working on a music video of his pictures, or sending his pictures off for various projects the chILD support group and Foundation work on. It during these times I need to watch homevideos again so that I can hear his voice again and revive his character. How I wish our boy didn’t have to suffer so when he was alive, and how glad I am that he no longer does suffer. Knowing that his suffering is gone makes it all just a bit easier to deal with.

On Sunday we sang Psalm 139 at church for the first time since James passed away. It hit like a ton of bricks and brought back some very strong emotions. What a beautiful song that says so much, but oh how it hits home. I’m guessing the emotions ran stronger also because I’m in one of those times where I’ve been busy with James again.

Some time ago I attempted to put together a “music video” of James’ pictures, but I needed to order some music first to do that. I ordered the music and then moved on and forgot about the project, until the music arrived. At the same time I received an e-mail from a Nursing School asking permission to use photos of James’ to help introduce all the medical assistance he was receiving as well as drive home the need for patients to be treated like people, he also asked to use some of my personal comments about our experiences with nursing. The Prof. will follow up with me to let me know how the class responds to the presentation. A day later I received a call from the Ronald McDonald House asking permission to use what we had written in our thank-you letter for their various publishing materials. The other day I received a copy of the DVD used at the 2008 chILD Conference which shows pictures of the many kids with suffer for ILD, it ended with a Loving Memory page for James and Corrina, another chILD who passed away in 2007. James is also featured on the chILD Foundation page (Family Support) as well as recent links to his story on the Breathing is Living website and Kids with ILD blog.

When all of these things happen at once I start to feel more involved with James again, he feels real again and I miss him more again. But I’m glad that his name is still out there and hopefully in it’s small ways promoting awareness and helping others. As I check the Referrals list on his blog counter I see a small but regular traffic arrives at the blog each day usually searching for medical questions or looking at the picture of after his lung biopsy. Our purpose of setting up the blog was to help and educate others on what to do and expect if confront with a similar situation … and since I am not an energetic, outgoing, public type of person I hope that in some small way we are still doing that.

Summer Fun Soccer

On Tuesday evenings we get together with a group of parents and children to enjoy some informal Kid's Fun Soccer. Thanks Allan & Alice for organizing the idea, coaching and providing the property. The kids have thoroughly enjoyed this time, especially Rebecca.

























Getting ready to play, organizing positions, making up a team name and a team cheer.












I think the kids would be just as excited to spend their time playing on the tire or in the tree fort.

Joyce has a weekly chance to get her "Matthew-fix"

Won't be long and our energetic little boy will be kicking the ball around too.