Monday, June 23, 2008
Matthew- 10.5 months old
There are times I can see the resemblence between James and Matthew. The back of Matthew's head is definitely the same as James. When Matthew has his eye closed I can see much resemblence to his big brother. Matthew definitely has eyes different from the rest of our kids, he's a character of his own.
I tried to get the same poses, but it took all my effort to keep Matthew near the horse long enough to click a few pictures. You can't see much (if any) resemblence between the two boys in these pictures. The one thing I immediately noticed was the height difference. At 10.5 months Matthew is 75cm tall compared to James who was only 70cm at 11 months and 73 at 14 months.
Friday, June 20, 2008
The very next day after my last entry about Matthew he went downhill again. Talk about discouraging. But this time it wasn't all too bad. I knew I had an appointment again in a weeks time and then we would focus on the ears again. A week of being bad would be enough time for me to fairly see consistency in that area. We didn't make it a week, two days later I had a crying inconsolable boy and then fevers began again. I got him in to the doctor the next day and his ears were infected again ... antibiotics again.
Unfortunately I don't think they really helped. I don't know what the antibiotics did as our doctor ended up being sick for the next appointment he had in order to monitor them. For only a couple days we seen improvement and then back downhill again. So now we're back to the "normal" Matthew ... eat very little (and only with great entertaiment to distract him) and not always happy. Then this week he developed yet another cold. A nasty sore throat that left him wincing and crying everytime he coughed. We were back to the vomits and the hard time getting him to drink ... nevermind the restless nights.
According to Rebecca the carousel was the best part of the day. The girls in my group couldn't think about anything else at first, so we did the carousel and the train ride pretty much right away to get it out of their system so that they could focus on some of the other things.
Marietta, Jenna and Kelsie with Humpty Dumpty. Unforutunately my camera missed the best part of this scene. Humpty Dumpty is springloaded as they found out when they climbed up on the wall. In the picture the girls are leaning on him to make him look like he's falling ... Kelsie decided to let go and it would seem she was putting the most muscle into it, for the other two girls promptly found Humpty Dumpty sitting straightup again and themselves down in the bushes behind the wall. Apparently Humpty Dumpty isn't the only one taking tumbles off this wall! :)
Waterpark Fun. It was plenty warm for the waterpark, especially after running around at the playground, but the water was freezing cold, so the kids didn't last very long. We made a couple stops at the waterpark for cool-down time. The last time we were there Rebecca was also playing there and I found the girls playing together (funny all they ever do is fight when they're together at home).
We arrived back at the school just after 5pm to enjoy a BBQ dinner of fellowship with church and school members. Felt like it was the last day of school. Seems many school are done today, but our kids still have to go until Wednesday. The kids were out like a light tonight once in bed, lots they could talk about but no energy to do so. I'm amazed at how tired I am from doing "nothing" all day. We'll all sleep good tonight (I hope).
Wednesday, June 18, 2008
Life with Fructose Malabsorption
Some time ago I mentioned that Rebecca has reoccurring stomach pains. We did eventually see the pediatrician. Actually we never had an appointment, she just asked how Rebecca was doing and in our brief conversation she came up with the idea to have her tested for Fructose Intolerance. She mentioned that she had a patient that was recently diagnosed with this and although uncommon it could be a possibility and worth testing. I think she based this idea on the combinations of two comments I made. I said when we put Rebecca on a high fiber diet her stomach hurt much more. That doesn't really tell you much, but the other thing I told her was the time we noticed she got much worse was when we discovered she had been binging on candy (she had a large coffee tin full of candy when we came back home from the Ronald McDonald House which it's contents disappeared in a rather short period of time). Well we can be thankful our pediatrician was on the ball and knows us well enough to think outside the box for it saved us putting her through a round of tests and we found the answer. Rebecca is now considered Fructose Intolerant.
I will admit that if she hadn't suggested this test I probably would never have followed through on seeing the doctors. I sometimes get the feeling I must be making my kids sick for it seems everytime I turn around something is wrong with one or more of them and we're always at the doctors. It seems all we talk about in our house is medical conditions and then you start to wonder if you're just completely wacko or something, and maybe that's rubbing off on the rest of the family, or maybe I'm brainwashing my kids into thinking every little thing is worth complaining about or more serious then it really is. I ignored Rebecca because she didn't complain too drastically (she never does complain so I should have known better), she appears healthy, is growing well, active etc. So I figured she'd outgrow the problem if I just ignored it. I'm thankful an answer came quickly for otherwise she'd have suffered with stomach issues for a long time since she's not very good at complaining (she should have gotten a few lessons from Marietta and then I would have done something long ago just to keep her quiet :)
So the doctor told us Rebecca is Fructose Intolerant, but after doing some research I'd have to say that she's actually has Fructose Malabsorption (also called by some Dietary Fructose Intolerance). We have a new pediatrician and she said she had never dealt with anyone with Fructose Intolerance, and our normal pediatrician (who is on maternity leave) said she had one case. So this is something more rare again, although in reading it seems it's not really as rare as believed, that many of us suffer from it, we just don't realize it. Anyways, so our doctor classified it as Fructose Intolerance, likely because of lack of knowing the difference and also because this is how it would commonly be referred to to the average person. True Fructose Intolerance (known as HFI - Hereditary Fructose Intolerance) is actually a much more serious disorder where the body does not have the proper enzyme to break down fructose, thus it can cause liver and kidney problems, as well as be fatal. Fructose Malabsoprtion (FM) although not always pleasant it is not life-threatening and is easily manage by diet. FM is an inability for your small intestines to break down fructose. In HFI you must adhere to a very strict diet whereas with FM you can learn to adjust your diet according to what you can tolerate.
So once again we're doing the diet thing in our house. We've done the gestational diabetes diet, the low-protein diet, we're now doing the gluten-free diet, along with milk, soy and rice free (Matthew), so why not add low-Fructose too. We see a dietician next week, which I look forward to as the internet gives a ton of information but is almost making me more confused. At least I had a chance to research before I go so I can ask questions when I get there. It seem that we have to avoid foods that have a higher amount of fructose then glucose in them. For some reason glucose helps breakdown fructose so if the glucose level is higher it will assist the fructose in breaking down and therefore the intestines will not have so much trouble ... so now we have to learn what foods have higher fructose levels then glucose. And if you think that fructose is just in fruit ... think again. Although most common in fruit is is also found in your regular table sugar, honey, corn syrup (a bit one). There is also some mention of fructan which is chains of fructose molecules in foods, such as wheat, onions, asparagus. The bigger challenge is that fructose is not on food labels like protein is, or always in the ingredients list.
We do know that Rebecca's intolerance is not too extreme as she had gone this long without having severe side effects. So she will be able to tolerate basic intake of fructose, but will likely have to tone down on the sweets and fruits. We'll take some time to learn the diet and see how she feels once more careful and then we can start challenging her to see how much she can tolerate. With the sweet tooth Rebecca has this could be an interesting challenge, but hopefully she can feel the results of abiding by the restrictions and that will make it easier. Regardless the effect of not abiding by the diet is not too serious and hopefully enough to put her back in line when needed.
So that's my medical lesson for today!
I do not need to reflect on these last years as you all have a pretty good idea of what has passed during this time. What I can say is how thankful we are that Rob was able to accomplish this part of his goal within the timeframe we had set, indeed it is a miracle. For Rob it has been a trying three and a half half years as he struggled to keep up with school work and often wondered if he was truly cut out to be an "office boy". He is well aware of the fact that next year is going to be even more difficult, this worries him, but he also realizes that he cannot give up before he has tried. At the same time he looks forward to next year as he will finally be learning things more applicable to his goal.
For now we all look forward to a summer with no studying, it will be September before we know it and then we'll be hearing the famous "I have to study" words often enough again. I think we all have a sense that this summer will be more relaxing and enjoyable, a time to bond as a family (somewhere inbetween Rob's crazy work hours), something that was missing the last couple summers. I pray that we are right and that especially Rob may be refreshed and ready to tackle those books with full steam when September comes around.
Whatever lies ahead we know that the Lord has carried us this far and He will continue to carry us on the road ahead. Indeed we have been richly blessed to have His love showered upon us in the past years. What a comfort it is to know He is always there.
Saturday, June 14, 2008
So last week Wednesday (the 4th) the kid's enjoyed Play Day at school. It reached a balmy 13C that day, with fog and cold winds all day. Indeed I felt I needed a winter jacket just watching them and here they were playing and having fun ... even with the cold water games which are meant to cool the kids down on a hot day. I went straight home to have a hot chocolate and try warm myself up again. (I will admit that I do get cold fast, but regardless it was a cold day for such an event).
Rebecca doing shoe kick and Marietta playing the Soccer Kick.
The girls played against each other for the Waterballoon Volleyball game.
Only two days later we were sweltering in a heat wave of 31C with a humidex of 40C. Wouldn't be Canadian if we weren't complaining about the weather ... from furnace to air conditioning! This heat wave lasted several days and on Saturday we went for our usual (okay, it's not a usual as we like, but we try) waterfalls walk ... maybe by time we leave we'll have seen them all. We tried Sherman and Caterbury Falls. The girls weren't disappointed by Sherman Falls as they love falls that they can actually climb to and get wet in ... and it being a hot day it was just perfect.
This Saturday we missed out on our weekly walk, but instead got to enjoy time with family, which the girls found just as exciting to spend time with their cousins. And now it's late, but Rob is busy cramming for his last exam this week. In a few days he hopes to write the last exam of his McMaster "career" and then kick back and relax for the summer ... okay, just work more hours, but wishful thinking! :)
As the weather has ups and downs it sort of reflects on my life lately. I have often heard comments about how people like it when we write about James, the things we remember, what we are going through, etc. I think I could probably write a whole separate blog on our memories of James or how our days go, but you'd start to think I was completely insane then! :)
As I climb out of what has been a rough couple weeks I breath a sigh of relief, for I was getting a bit worried that I wasn't going to climb out of this valley anytime soon. Life is so full of memories, they surround us everyday in all that we do. I'm not sure what brought on the last low, I think it was just a combination of different things adding together and once down more things just seemed to add on to keep the down feelings. Grief isn't the only thing that can do this, I'm sure there are many who have this in everyday life. I've never been one to get down for long period of time ... maybe a day or so and then back at it ... so when it begins to stretch out I think it just sort of snowballs into effecting all angles of life and then isn't all necessarily grief related.
It's funny how the same thought can hit you completely different from one day to the next. I know that James is gone, I know that he is never coming back. I am completely aware of that! But suddenly one day it just dawns on me that James is gone and he's never coming back ... and I fall apart like this is completely new news or something.
As I mentioned we just had Play Day last week. This day was a day of mixed emotions as it brought back some memories of previous Play Day's that felt very fresh, like they had just happened.
Here is James two years ago on Play Day. What a rough day that way. I had dropped Marietta off at school and headed start to Mac to bring in some tests and get some more tests done. I only made it part way there and James became rather ill, vomitting all over the place. It was snapping point for me where I couldn't handle things anymore for I knew there was something seriously wrong with my boy but we couldn't seem to get this through to doctors. We were still at the beginning stages, still learning the ropes of the system, how to get things done, who to call when, etc. After getting things done at Mac I head to the school to watch Marietta, but I was a mess. I had left phone calls with several doctors trying to get something done, but was getting no cooperation. Several times throughout the day I was thoroughly embarrassed because I broke down, I cry just thinking of my frustrations and anxieties at that time. But those phone calls that day paid off .... it took a bit, but I had finally had enough and wasn't going to be put off anymore. We finally managed to get James into hospital for testing and evaluation, which results in his LPI diagnosis. As a side note, I also remember this Play Day as being a cold day!
And here is James one year later on Play Day. This was during our extended hospital stay last spring as we once again battled with doctors to get them to understand that there was something more serious wrong with our boy and we wanted answers. I remember this day as being one of the very few times that I snuck away from James (while he napped) and left him completely alone (well obviously under the nurses care) so I could go spend some time at the school to see Marietta at Play Day. I could not relax while I was there as I was scared he'd wake up and be scared because I wasn't there. But yet the joy and delight from Marietta when she seen me come was enough to make it worthwhile.
Once again, you see how it is events that trigger my memory, not specific dates. This blog has gotten long enough, so I won't go any further into the the ups and downs. This is just the way life is, but as long as we put one foot in front of the other and look up we can carry on. I receive an e-mail this week and one line struck me: "Sorrow looks back, worry looks around, but faith looks up!" It is so true, I spend so much time looking back, remembering things, getting worked up about things that are over and done and I can't change, etc. I don't think there's anything wrong with remembering and reminiscing, but as long as these memories are also always done in faith, knowing and trusting in Him who is in control, the one who does all things for His Purpose. And as I write this I feel better already, for a week ago I did not feel so bright about things. There are mountains and valleys and thankfully we're not stuck in the valley, what a comfort it is to know that the Lord carries us through all things.
Remember God’s Promise
“I am always with you,.”
This is the promise of God to one and all-
to every heart that’s hurting, grieving, or burdened with pain.
He offers hope and comfort.
He offers caring and companionship.
He offers peace of mind
God didn’t say the sun would always shine on each day.
He didn’t say the flowers would always bloom.
He didn’t say time would always bring us perfect happiness.
But God gave humanity a place to go -
a place where peace is always offered,
comfort is always given,
and love is a constant thing.
God said, "I am always with you,”
and He always is.
- Barbara J. Hall
Thursday, June 12, 2008
Marietta's hair wasn't all that long, she had been growing it for just over a year, so although a change, it's not as drastic as Rebecca's. Rebecca has been growing her hair since she was three years old. She had long, thick, wavy, beautiful hair (can you hear a hint of jealousy :) But it was ALWAYS full of knots. I could brush it out (after much complaing, whining and crying) and ten minutes later it's be loaded with knots. So we finally decided it was time to try it short and see if that worked better ... especially with summer coming up. They've both wanted it cut for several months now but we were waiting until after Val's wedding ... so today we finally got around to it.Rebecca's hair was long enough that we were able to donate it to Cancer Society. So we bundled up 9.5inches of it into a braid,chopped it all off and sealed it in a ziploc bag ... tomorrow we will mail it off.
Both girls are quite happy with their new look. We were a little apprehensive of chopping Rebecca's hair, but really like how it looks and hope that she finds it easier to manage this way. I must admit that even though I look forward to not having to battle hair each morning, I will miss the opportunity to try new things and fancy them up a bit
Here's pictures from the other day - my last fancy hair attempt on Rebeeca
Monday, June 2, 2008
Well my baby (and only) sister got married on Saturday. The last wedding for our family, my parents are now empty-nesters. As I sift through my pictures I realize how busy we were as there are lots of things I wish I had taken pictures of that I didn't ... but judging by the amount in this post, I still have plenty. One thing I noticed is that I have no good pictures of just Val and Mark ... guess that's what the photographer is for eh!! :)
The day turned out perfect. The weather was nice before church, although a bit windy, making for some interesting hair photos. It poured rain during church and by time the service and socializing was done it was nice again and the after-pictures could still be done outside. As a family we had a relaxing day. Matthew joined us at the church so he would be there for family photos but for the rest of the day he was with a sitter. So very different from the last family wedding we attending with a 6 week old baby and a medically dependent child. It was a late night for the girls and boy were they eye dropping by the end, but they sure enjoyed themselves.
Thank you to all who responded to my e-mail looking for ideas on what the girls might be able to do for the wedding entertainment. We chose to go with a game for we feared Rebecca might get stage fright and mess up a skit. Marietta read the rules and instructions and Rebecca was the "helper". Aunt Val had to show her love for Uncle Mark in the form of Hershey Kisses. The girls were a little disappointed that Uncle Mark outsmarted us ... in their opinion he cheated ... it could come down to a technicality in the wording and how you define the word "sit". But oh well, they still had fun.
Mark and Val, we take this opportunity again to wish you the Lord's blessing in your new life together as husband and wife. We pray that you will seek Him in all things and continue to walk in His ways. As life has it's ups and downs may He be your guide and your strength through all things.
And now on to the rest of the pictures:
After a long weekend of fevers we seen the doctor on Tuesday. He had a bit of a red throat and a bit of a red ear but nothing that really suggested it would be causing these fevers. Given he'd had high fevers for 4 days we decided to try antibiotics and see if they helped. The next day the fevers were better and a few days later Matthew began to eat and was a happy content little boy. This triggered a new thought, as he did the same thing last time we put him on antibiotics for his ear infection. Last time it lasted for 4-5 days of eating and being good and then he went back to his old cranky not-eating self.
This time I decided to see the doctor with a happy, content child. I wanted to see what his ears looked like when he's happy, for fear that 5 days later he would be cranky again and I'd never know if his ears reached a point of being "good". As I suspected, the ears looked good but she could see scarring and white on the ear drum, which indicates that he's had reoccuring or lots of ear infections. We know he had one in January and we put him on antibiotics then. I cannot remember what the doctors thought of his ears the next time we seen them, whether they appears all better or still slightly infected. And we've seen doctors often enough between January and April that if they thought his ears seriously infected they would have treated them. Since it was not something we thought about or were concerned about we begin to wonder if they "appeared" slightly infected or a bit red but were actually bothering him far more then they appeared to be. In April he developed another full-fledge ear infection which we put him on antibiotics for and for the tail end of the antibiotics he was a happy and content boy and then went back to his old self. We didn't really clue in to this being a sign as each time we went back to the doctors they said his ears were still slightly red or bulging but not bad enough to warrant antibiotics. So we have no idea whether his ears actually looked completely better during those 4-5 days he acted better.
So we've thoroughly enjoyed the last 10 days or so of having a "normal" content 10 months old. Although his eating is not completely consistent it is faaaarrrrrr better then it was, he even smacks his lips to tell you he's hungry. These content days have also helped us to establish a better bottle routine and we haven't had any issues with him "sipping" and then refusing to drink. We've got our fingers crossed that the ears explains his refusal to eat and drink. Unfortunately it doesn't explain everything, but we're quite happy to leave those other issues (vomitting, rash) alone if they don't resurface. We are no longer giving him the reflux medication as he seems well enough without it. The only reason we might consider trying it is because he continues to have this gagging, choking, coughing thing happening near the end of drinking his bottle ... but as long as he stays the way he is now there's no reason to. We may still have some allergy issues to deal with, but as long as he keeps eating well we'll finally be able to work through some of them. All and all things are looking much brighter!!
Since we have a year pass for skating last Saturday I decided to take the girls skating seeing as it was a quick and easy "family-time" (without Rob, who was trying to put together an essay) on what was already a bit of busy day. Marietta decided she didn't want to go, so I took Rebecca and Matthew (to watch). Rebecca was quite thrilled the the arena was so empty and even more thrilled when for the last 15 minutes she got the ice all to herself. She finds this much more enjoyable and less intimidating then during the winter public skates that can get quite crowded ... and I liked it because it was rather easying keeping track of her. We may find this a handy place to hang out on those hot summer days
And after a slow start to spring/summer we're finally have some nicer weather. From skating to swimming! The girls wanted to try out their new pool. Which was suppose to be a sprinkler pool combination. The kids love the sprinkler and I hate wasting water, so we were all happy with this combination where the sprinkler sprayed into the pool ... at least that's what the box showed. The box also showed the pool part to be much deeper. Not the case. So the kids decided they would be innovative and make it a bit more entertaining. And once they were done it was agreed by all that they we too big for the pool and we sold it on Kijiji. Since it was the girls pool they split the money ... judging by the thrill of making some money I have a feeling I might be hearing about more things they want to sell.
Last week I finally had the opportunity to go on a Class Trip. This simply wasn't an option the past couple years. Since the January I signed up 3 times to go on a trip and each time ended up cancelling the day of because of a sick child. So finally on my third attempt I got a chance to go with Rebecca's Kindergarten class to her teachers house to catch frogs (caught several of them) and tadpoles (didn't see any of them). The kids had so much fun and it was so neat to see Rebecca with her classmates. Although the main part of the trip was to spend time at the pond I think the best part for the kids was by far playing hide and seek in Mrs. H. house.