Saturday, November 22, 2008

Hand Molds

"Was it really only a year ago???" "Has a year already gone by??" We feel a mixed emotion of both of these.

A year ago today was our last full day with James and the last day that the girls seen James. The girls were able to come to the ICU and the Palliative Team tried to make it a special and memorial day. One of the things they attempted to do was to make a mold of the kids hands. Unfortunately the mold did not turn out and so it's just been stored in a box. Since James wiggled his fingers three of his fingers did not work. The mold is very crumbly and easily breaks. One of Rebecca's fingers has already fallen off and each time we take it out more little pieces fall apart.

Although the mold did not turn out nice and we wish we had just done a hand print of James' hand, it is still very neat to look at it as it is very detailed, right down to every line, crack and crevice on the hand. You can also see Rob's thumb underneath James' hand as Rob tried to hold his hand in the molding stuff and keep it still. There wasn't much life left in James but he was still able to put up a fight if he didn't like something ... and he wasn't at all happy about the idea. Poor little guy!!

Thursday, November 13, 2008

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.

Tuesday, November 11, 2008

Fructose Malabsorption AGAIN


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.

Monday, November 10, 2008

5 Years Ago ...

we buried our firstborn son

Justin Gerrit
October 16, 2003 ~ November 7, 2003

Sunday, November 2, 2008


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 :)