Matthew

Overall Matthew has been doing really well the past couple months  😃

One thing I forgot to talk about in my last post was Diet.  For FIVE WHOLE months, from July to December all of us except Rob followed a very strict diet, it had many different factors to it that made it a bit like Keto, a bit like Whole 30, but still different and the easiest way to explain it to others was to say that we were Gluten Free, Dairy Free, Sugar Free, but even that didn't cover it because they wanted us to eat more nuts and seeds for protein then meats and it was actually more grain free then gluten free.  And sugar free literally means sugar free, not replace sugar with alternative options.  Fruit was limited because it had more natural sugar, then vegetable, although this was one of the first things we slowly increased in order to survive the diet.  Fruit became our treat/dessert and while I tried to keep the fruit in our smoothies to a lower amount, it just was getting harder and harder to swallow them without adding some more natural sweetness in it.  Occasionally we would indulge in something that would have a very small amount of maple syrup in it ... other then that we were sugar free.  Certain foods had to be completely avoided because of they naturally have more mold - such as peanut butter, grapes, mushrooms, cheese and many grains.  Add to that the fact that we tried to decrease the amount of nightshades we had (peppers, potatoes and tomato), especially for Rebecca. And then to discover that one can't handle almonds, one can't do eggs, several don't do well with coconut ... to say it was complicated and boring was an understatement and by the end of five month we were done with it and ready to expand out palate.

As Christmas time came it was getting hard to stick to this restrictive diet.  For the first months it was easier since we had started fresh with an empty fridge and cupboard when we moved and I simply didn't allow anything that would tempt us in the house.  But as we settled in this became harder to do with Rob back living with us and trying to have "normal people food" for socializing. And so things started creeping back in.  The whole process did help us to learn a few extra sensitivities that some of us have and taught us a variety of other ways to eat healthier foods, so it did have some benefits and we continue to incorporate what we have learned.  At this time it would be easiest to say that we eat mostly Gluten Free, low amounts of dairy and try to keep sugar to a minimal.  It is easiest to stick to the diet at home, but we save flexibilty and "cheats" for when we go out.  Each of us has different sensitivities and limitations that we have to work with.  All in all our diet is a lot like a more strict version of where we were before we started treatment ... reading labels was not a new thing as the four of us have Fructose Malabsorption and have followed the FODMAPs diet for about ten years.

Okay so that's the diet up-date.  Back to Matthew ...

All that being said, Matthew has the most freedom from the diet.  He himself doesn't seem to notice any obvious symptoms from eating more variety or indulging in some wheat or sugar items.  Whether that is because he truly isn't very easily effect or that he just isn't able to recognize how it does effect him we don't know  As a baby he was quite sick from food intolerances and we don't know how much he has outgrown so it's just easiest to keep him on the diet since the rest of us have to eat that way anyways.  In the past we would notice if he had over-indulged, small amount were okay, but frequent cheating over a longer period of time  or a sudden binge brought  mood and behavioral  issues.  While he is allow more freedom then the rest of us, he is still restricted enough to not show symptoms.

A refresher on what Matthew was dealing with last year:  bad headaches, excessive dizziness or what they thought to be vestibular neuritis, motions sickness, constant cracking/adjusting of his neck, random squeaking sounds in his throat (like a tik disorer), random zapping in his head and sometimes other parts of his body, stabbing stomach pains, neurological symptoms that would cause bouts of negativity and drastic lows.

I can pretty much say that most of these symptoms are gone and the ones that are not gone seem to be appearing less and less often, especially now that spring/summer is here and he is outdoors more.  When we do see symptoms it is often after extended times of being stuck inside the house or not being physically active.  So in periods of really cold or rain (not that they get that often here) or sickness, where he stays inside for several days then we start to see the neurological symptoms resurface and sometimes the headaches, neck cracking and squeaky sounds.  Thankfully he loves to be active, he loves to bike and when it was warm enough he practices basketball.  In the winter he would often go skating on the coulee or play hockey in the yard, or even in the basement since our Taber house was so big

The coulee was great until we got a period where it snowed several times and Matthew was too busy with basketball to get down there to clear snow each time.  By time he got back down there, there was just too much snow ... after that we also got a long stretch of -20C to - 25C days where he toes would have been frozen after a couple minutes anyways.

Hockey in the basement.  This plan developed after he had pneumonia and found himself coughing up a storm everytime he went out in the really cold ... so he just brought his net downstairs to play.

In the fall Matthew joined the Junior High School Basketball Team  ... had I known ahead of time this would mean giving up many of our weekends for tournaments, I likely would not have agreed to let him play, but thankfully I did not know. (So for all you Ontario families ... be thankful that you don't have to deal with weekend tournaments - as in both Friday afternoon/evening and Saturday, on top of one to two games per week - it appears this is the norm around here.)  It was a different kind of busy and I won't complain as it's a busy that we chose to partake in, unlike when we were so busy with  appointments and health issues.

Being on the basketball team was good for Matthew the same way it is good for most kids to be involved in organized sports, but we also really seen how it helped during those winter months for him to keep active and not be in the house too much.  Unfortunately Basketball season is at the same time as Hockey season, which meant he sometimes had to choose between the two and also made it extra busy, and then both ended at pretty much the same time.  It was nice to slow down, but we did notice that when Matthew spent more time in the house and less time being active some mild symptoms resurfaced.

One thing that Matthew does now struggle with is indoor pools.  The school did Phys Ed at  an indoor pool for a few weeks.  Matthew was sick after the first time - headache, dizziness and motion sickness.  We decided to try again just to see if it was a bad day or coincidence, but the next time it was just as bad.  So indoor pools are not a good place for him and we will have to test whether he can handle outdoor pools where all the smells are not contained.  He also has struggled when shopping in clothing stores or the mall, etc.  He has not gone shopping since the fall, so I don't know if this is still an issue, but I suspect it is not something that will go away, although he may become less sensitive.

Matthew had a rough winter, picking up quite a few bugs and ending up with pneumonia twice. The first time he had very high fevers for 10 days before we finally got a diagnosis of pneumonia after making a third visit to the doctors once it was realized that there had been some miscommunication between radiology and our family doctor.  Once on antibiotics I think we allowed him to return to activities and basketball too soon, but he was so tired of being home in bed with fevers that he was so excited to be done with fevers and just wanted to go, even though he was rather weak still.

Trying our best to keep the fevers below 40C

Lots of rest, but often would wake up drenched from sweating off the fevers,
needing to change or even shower in the middle of the night while having his sheets changed

Over the next few weeks he picked up a couple more bugs and seemed to only get a few days of decent health before something new hit him.  Then on Moving Day he woke up looking and feeling really unwell, so we made another trek to the doctor.  This time it only took one visit to diagnose him with pneumonia again.  Interestingly it was in the other lung this time. Since having pneumonia twice in a row is not common for kids, after that the doctors had him come back six weeks later to check if he was actually getting better.  This xray showed improvement but it was not all the way better, so he returned again at ten weeks, which once again showed improvement and basically close to back to normal.

Moving Day he was feeling so sick he had valid excuse not to do any work but just lay there and rest and watch videos.

In April we moved to Coaldale and we questioned how good this house would be for him, but compared to other rentals it was our best option and with little time to find a house we didn't test before hand.  Instead we did a thorough clean and set up our air filters and hoped for the best.  When we started seeing more neck cracking, hearing more squeaking and seeing more neurological symptoms we began to question whether hoping for the best was the best plan and so we spent the money again and tested the house.  Unfortunately it did not come back very good ... better than the Ontario houses we tested, but far from good enough for someone who is sensitive to mold.

Our goal is to decide on a permanent location sometime in the next year, so we keep telling ourselves that this is just temporary and we will make do because we really have no desire to move again.   In the past month Matthew has done very well again because the weather is nice,  the windows are usually open when he is home, he's outdoors more, and usually physically active. He bikes to school, bikes home, has a snack, does his chores and then often hops back on his bike and is gone until dinner, either biking and exploring, playing basketball at a nearby school or watching friends play soccer.  Soccer sign ups were at the time where we didn't know where we were going to be living, so he didn't sign up this year.  They run the soccer program early here, starting in April and done when school is done.  As things are right now, living here is doable but I do fear a bit about getting through the winter months when we're more cooped up indoors.  For now we just keep going with the hope that we can make a decision on where to move sooner then later.

It's really hard to believe, but today is the last day of Grade 6 for Matthew.  A whole school year has gone by and now he's done Elementary School and off to Junior High next year.  Since our school is a K-12 school there is no graduation from Elementary School, you just progress to the High School hallway.  A slight difference from what we are used to with Grade 8 graduations and the big change from Elementary to Guido ... and he doesn't get to go on an Ottawa Trip.  He very much misses his old elementary school and the friends he had there, but while he is missing out on some of the growing up traditions from Ontario, he is enjoying many other things here in Alberta and we pray that with time the longing for Ontario will decrease.  (He is insistent that as soon as he is done high school he is moving back to Ontario.)

Last day of Grade 6

We are so very thankful for the increased health that Matthew has had this past year and pray that  as long as we remain vigilant in being aware of the surroundings he is in and how they effect him these issues and struggles will eventually be behind us with the hope that one day they simply won't be an issue anymore!