"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.