Last week James' stone finally arrived (after some hassling), so I went to check it out. I didn't look close enough at my camera screen to realize I was reflecting off the stone ... will have to do a better job the next time we stop by.

We used somewhat the same idea as Justin's stone ... cept Justins is smaller.

Fructose Malabsorption AGAIN

*sigh*

Matthew went for his fructose malabsorption test today and the technician was kind enough to let me know that his test was postive.

I had been dreading doing the test but I must give much praise to Matthew who was an excellent boy all the way through. He had to fast ... my biggest dread since he wakes at nights, but I filled him with a bottle just before the fasting deadline and he made it all the way until 6:15am. After a few minutes of his panicy cry for formula dear Barney saved the morning. He watched TV, had a bath (another thing he likes) and only complained mildly on the ride down. I was also worried about getting him to drink the fructose solution ... but put it in his bottle and he was hungry enough he didn't care what it was. Between blowing in the mask (every 15 minutes for 2 hours) he was free to roam and we wandered the halls. He enjoyed the big open space at first, but 45 minutes into the test wanted to rid the stroller or be carried (a sign the fructose was kicking in???). When all was said and done ... after fasting so long he only drank 5oz of his bottle ... fructose overload??? But the morning went well, we got an answer right away (doesn't usually happen), and now we can go forward based on that.

I'm not sure how I feel about this right now. I remember the joy we had when we got this answer for Rebecca ... and now months later as we continue to struggle with her I can't say I have the same joy for Matthew.

Part of me is glad for the answer. Although the diet is very hard to figure out and maintain (as we've learned over the past months) at least we have something to work with now. The other thing is that now I can have a bit more hope that we're not dealing with anything serious with Matthew ... just food intolerances. And I suppose I'm also partly glad because I have renewed my faith in "mothers intuition". Sometimes I felt like the doctors were just entertaining me. They always seemed to want to point out how much we have gone through. As if to say we've become paranoid because we've gone through so much, but really we shouldn't be concerned. I truly hate having this family full of all kinds of medical issues, but when a diagnosis is found it often makes me feel a bit better ... "okay, I'm not completely wacko, there really is/was something wrong".

The other part of me isn't all too excited about the diagnosis. First of all because we continue to have problems with Rebecca ... so until I see positive results with Matthew I'm not getting my hopes up ... we may have just hit on a part of the problem. And then of course the discourging factor that we have to keep him on this restricted diet that feels impossible at times.

I wrote that Matthew was still miserable etc. Then commented that I couldn't comment ... hinting he was doing better. At that time things were going better in the sense that he wasn't crying on the floor non-stop all day ... his refusal to eat much or consistently continued. Part of the reason he wasn't crying so much is because I had adjusted the schedule a bit to help with the crying. We have been extremely busy lately so we are often gone for the mornings, which would keep him busy ... although usually by 11am he's had enough no matter how entertaining his surrounds. On top of that I've given up on the little-to-no TV rules that apply in our house. I feel bad that I've resorted to the TV as a entertainer and babysitter ... but it sure has made life much more endurable and manageable. Matthew loves Barney or any type of video that has excessive amounts of energetic singing. Sometimes the TV is used to just push him a bit further before he goes for nap, other times it is used because I just can't endure him anymore, or I simply need to get something done and can't have him clinging. It usually works for about half an hour or so and then he'll start whining to come off the bed (TV is in our room so he sits on our bed). I do find that often it does rejuvinate him a bit and so the process buys me about an hour where I can quickly try to be productive. So although things weren't necessarily better, they felt better because we weren't pulling our hair out all day trying to figure out what to do with him.

We did do a milk challenge for two weeks ... but he failed that ... much to our disappointment. We decided to put him on lactose free milk, that way if he reacted we could determine if it's the protein or the lactose. By taking the lactose out we would know he's allergic to the protein. So we can now say that Matthew has a delayed allergy to milk protein. He might also be lactose intolerant, but it doesn't matter since he can't have milk anyways. So if you apply Rebecca's diet (see here) and then take out all milk and soy ingredients ... ah ... not fun.

Why do we still have him soy free? We have not yet had the opportunity to challenge him on soy. It has been over two weeks since we put him back on formula and we are still seeing the effects of the milk challenge (in the form of whole foods - rice, rice puffs, strawberries, corn puffs - in his diapers). We are waiting for these to clear up before we challenge ... if we challenge. He also developed a rash on his face while on milk. It developped on his bum the first day we had him on milk (we were only giving him 1/4 of a bottle with milk, the rest still formula). By the end of two weeks this rash began to appear on his face ... that was enough to tell us it was time to stop and at that point he was only on 1/2 milk and 1/2 formula. Remember us dealing with such a rash before?? (see here) We had thought it was due to wheat, gluten or cereals as it went away afte we rmoved these ... but milk was likely a factor ... and maybe the other items on top of it too seeing as some with fructose intolerance cannot have wheat and do develop a rash or eczema (not that common of reaction). And if you're reading that post ... remember how all of this started with a high respiratory rate?? We noted that while on his milk trial his resp rate was higher ... not drastically. To be fair we don't check his resp rate very often anymore as it's usuall around 40bpm (the high end of normal). Something possessed me to check while he was on milk and noted it was 50-60 ... he's now back down to 40bpm ... coincidence or interesting fact??

I have a call out to GI about what to do next. We were told there is no formula for someone with ructose intolerance (could this be because of there skepticism?), but I ran into James dietician today and she told me there were options. We can put him on a carboydrate free formula and then just get dextrose from the health food store (or Bulk Barn is where we get Rebecca's) and add it to the formula. My quick looks tells me the formula she was talking about is soy based ... but we'll see what they come up with. Maybe having a postive test will make them a bit more willing to find something.

So we'll see how things go .... praying that this is indeed the answer and the end of the list of intolerances.

Just like his big brother (poor guy is always compared to James).

(Left) During our many hours of roaming the halls of McMaster James always loved it when we push his stroller or pulled the wagon right beside the wall so he could run his hands over the bumps. By our second trip around the halls Matthew also noticed these bumps and put his hand out to indicate he wanted to touch them and run his hand along them.

(Right) James also spent many hour behind this window in the blue section. This window looks down on the parking garage. There are two open sections where you can see cars driving and Matthew also found this entertaining to watch.

5 Years Ago ...

we buried our firstborn son

Justin Gerrit

October 16, 2003 ~ November 7, 2003

Harvest

Well it's harvest time around here. I know that the majority of people are not all too involved in "harvest" as we live in a world were all things are availble to use at the grocery store year round. But we still do a decent amount of canning and freezing in our home in order to cut down on the costs of buying foods when out of season ... plus we like the taste of them better. So this is one of the reason I haven't had computer time, seeing as each week there seemed to be a couple foods that needed to be tackled on top of keeping up with regular schedule, socializing and appointments. The business of this time of year brings back some memories as it's been a few years since I've done much storing of food. Over the past couple of years I've put a few basics in the freezer to keep us going but didn't do too much. Even this year I did considerable less then during our days on the farm. Part of this comes from the fact that my garden is about a 1/16 of the size as one the farm so I'm not saving as much by growing and preserving my own produce. I'd have to plant my whole back yard as a garden before I'd come close to what we used to have. It felts good to be doing the "normal" things of "days-gone-by". I won't say that I particially like doing gardening (for sure not) or even the mess that comes with canning etc, but I do find it so rewarding to see the jars all nicely lined up on the counter after we're done, or to open the overflowing freezers right now (although a bit frustrating since I can never fit anything in it anymore and have to dig forever to find stuff ... but really not something to complain about :)

Due to lack of freezer space I was not able to make as many pies as I usually like to ... but was at least able to put a dozen in the freezer. Marietta happened to be home for the morning recuperating from strep throat the day I tackled this project so she was quite thrilled to help out ... and I must say is getting to an age where she is actually helpful.












I was just finishing up when the kids came home from school so I made sure I saved some pie dough for Rebecca so she could make a pie for herself as well.












Some of the things we canned this summer/fall. I did a couple batches of salsa. The garden didn't grow very well (an ongoing problem here that I've come to accept) and so my tomatoes were not as plentiful as I had hoped. Our pickles also got a fungus and died off, much to the girls disappointment as this also happened a couple years ago when we tried to restock our pickle supply. Since a few pickles did grow we decided to let them grow big so we could
get more jars made by slicing them and making them into pickles that way. The kids still like that that way, so it worked for me ... although I much prefer baby dills. The neighbour has a pear tree that she doesn't use so we ge the pears on our side of the fence and can them. My peach supply is a little lower then I thought ... I should have done more this year, but by time I realize it was getting a bit late and I ran out of time.

The freezer is full of frozen broccoli, cauliflower, carrots, green onions, beans, peppers, cabbage, beets, strawberries, apple pies ... on top of the usual meat, bread and other sales items we stock up on. But I won't take a picture as they look quite disasterous :)

I missed the celery sale (I do carrots, celery and green onions for soup) so I'll have to keep my eyes open for the next dip in celery price as I am now flat out of celery. And I decided to wait a bit before I do my applesauce as I have no more freezer space and prefer freezer applesauce over canned applesauce.

So it feels good to have the cupboards full and the freezers full and have lots of variety that I can just grab when needed. Rob always said we could survive months if a extreme blizzard ever hit us :)

"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!!