Sunday, May 25, 2008

Already Six Months

Friday marked another milestone on our calendar as we noted that it has been six months since James passed away. To be completely honest the day past without much notice to the date. We are not "date people". Often I have no clue what the dates is, I funtion on Monday, Tuesday, Wednesday ...etc and even then I sometimes forget what day of the week it is. It takes some thought for me to clue into the actual date ... don't worry, I can usually get the right month, just not always the right number! :) (And my kids make sure I have no chance of forgetting birthdays :) But when we do clue into the actual date then it usually means taking a few minutes (or more) to reflect on what that date means.

It's so hard to believe that we've already gone six months. As I mentioned in my last post, time flies. When I go through everyday life that's all fine, but when we start putting a time line to things then it makes me sad to think that we are slowly getting further and further away from our time with James. In many ways it seems like just yesterday and I am so thankful for this, that even though time keeps going, my memory of our time together is still very clear and real. And I try to remind myself that even though I get this feeling that he is being left behind ... he is actual ahead and we are the ones behind. We look forward to the day when we will "catch-up" to him.
My memory works more on time periods then actual numbers. Last weekend was a hard weekend for me. Instead of the number 23 I remember the Victoria long weekend. This is a weekend that is always well remembered in our house, but now for different reasons. Nine years ago we got married on the Victoria long weekend and so it's always a time to reflect that we have passed through another year of marriage. This year instead I remember how everything sort of "crashed" last year on this weekend.

We had been going through a period of time where we thought that we had James a bit more figured out and that we were making progress on getting him better. It wasn't until the Victoria Day when he ended up in ICU that we realized how wrong we were. In reality we didn't even realze it intially, but a week later our research had made us come to believe that we were dealing with more then what the doctors believed and that James had PAP. Last year we made a visit to Felkers Falls on the Saturday of the long weekend. We had hoped to go again this year, but a sick boy and miserable weather made us decide against it. I have quite a few pictures from our walk last year and whenever I see them I think of them as the last time James was considered "half-healthy". And my second thought always is "I wonder what his SATs were? Poor guy should have been on oxygen." And so began our extended hospital journey, from one holiday to the next ... as I will also always remember the July long weekend (Canada Day) as our first time at Sick Kids when we had just been faced with the reality of how sick James really was after the doctors had sat us down to tell us that we had a "very, very sick boy" and his illness was terminal without treatment, possibly not if the treatment worked.

So although there are certain dates in etched in my mind, I don't always clue into the actual date to remember what happened on that date, instead I remember events that surround the date. But all in all the past six months have been going okay. Sometimes I feel bogged down by the fact that things aren't getting any better. I guess I thought that there would be a steady and slow progression to this all, but in reality their was only a progression during the first month or so and now it's just a range of mountains that we climb and stumble back down over and over. I am not consumed by this, but there are still times were I am surprised by how much I am still affected by it all, especially because it usually appears out of nowhere, taking me by complete surprise when I thought I was doing fine. I have come to realize that this is how it will be, and it's likely going to take a very long time before I can actually say that I've made further progess, and so we just keep climbing through the ups and downs, always looking ahead.

Although unplanned I did have a chance to stop by the cemetary on Friday. We've only stopped once before and then it was snow covered. There wasn't much to see since we still haven't ordered a stone. I started on the process but wasn't happy with the place we went so now I have to look around yet before we make a decision ... sort of falls in the "time flies" thing, where I suddenly realize another week or two has gone by and I haven't gotten around to it again.
"Praise be to the Lord, to God our Savior, who daily bears our burdens. Our God is a God who saves; from the Sovereign LORD comes escape from death" Psalm 68:19, 20

Sunday, May 18, 2008

Growing Big!

Time just keeps on flying by. I'm not sure where it goes all the time, but it seems to move at an amazing speed. The past couple weeks have been busy with various appointments (again), visiting, society, babysitting, just life in general and my favourite cooking, cleaning and more cleaning! :)
As time flies ... so does our little boy, who learned to crawl a couple weeks ago. In the past couple weeks he's developed at a fast pace, picking up on lots of "firsts". He started crawling while we were on holidays, a few days later he learned how to pull himself up in the playpen and walk around the edges. I finally stopped being so skimpy on the water and moved him from the baby tub to the big tub, which he loves. Gave him his first haircut also, although it hardly classified as a haircut, just layered the back a bit so he didn't have these little wings sticking out behind his ears all the time. He discovered how to clap and wave hi and bye ... we did not teach him either of these ... guess the further you get down the totem pole the less you focus on these things with your kids, but he still figured it out. He has also started attempting to ride the firetruck. The pressure is on to keep up with his big sister, who was an expert by 10 months old. She had a bit of an advantage tho, the car she rode was lower to the ground. Matthew's feet cannot quite touch fully on the firetruck, so he just enjoys rides from his sisters who will gladly pushing him around. Now if he'd just add eating to the list of his recent accomplishments we'd all be so much happier.

Over the past few weeks we've been muddling through what to do with Matthew. He has stabilized again and it's now been two weeks since his last "out-of-the-blue" vomit. He has had various appointments and at the most recent one his ears were still red, but had improved some, so we do not have him on antibiotics anymore but are hoping they will clear on their own (given I still have an earache from the cold I had a couple weeks ago, I guess he's doing okay then). Our biggest concern continues to remain the fact that he refuses to eat. After he recuperated from the flu-bug he had a few weeks ago he ate well for almost a week, but then quickly reverted back to his old habit of shaking his head, pushing the food away or clamping his mouth shut. Our second biggest concern is that he is unhappy. All his new accomplishments have helped slightly to keep him entertained a bit longer ... or just give me more ways to "rotate" what he is doing to keep him happy. But usually he only lasts for a short period at whatever he is doing before he starts complaining.

We have been working hard to try and get him on a bit of schedule for his bottle feedings, but this too remains a challenge. He cries for a bottle, gets excited to see it, then drinks a couple ounces and pushes it away. We were going through a vicious cycle all day long like this. As I began to look at his charts I realized that he was getting plenty to drink as he always drinks well when he's sleepy (before naps and bedtime, as well as the middle of the night), these bottles alone give him pretty much 25oz per day. This helped me to work on being firmer during his wake time to make sure he'd gone for a good period of time before he was allowed a bottle again. This means a bit more work for me of catering to him to help him make these longer stretches. Unfortunately I still run stuck when we get him 4 hours and give him a bottle and he drinks 2 ozs and pushes it away ... now what do I do 1/2 later when he's miserable and crying to drink again? We are left wondering why it is he drinks better when he's asleep, less alert, or simply not paying attention to what he is doing.

We seen a Naturopath also, since we had heard they would do allergy testing before the age of one (which an Allergist will not). They even said they would when I called to make the appointment, but when I went for the actual appointment they said they wouldn't do it as he hasn't been exposed enough. Grrrr!!! Their advised was to keep him off of corn, wheat, rice, barley, oats, milk, soy, etc until he's two years of old and old enough to let us know how these effect him when he eats them. Well thanks, but I don't think so!! He currently does not get any of these and we're still having issues ... so altho they could be a concern, they are not the answer. The only one that might be possible is corn as we have learned that his formula is corn-based.

Back at the Pediatricians we decided to get an appointment to see the Allergist. By time we actually get in Matthew will be close to a year old and hopefully they will agree to do some testing or give us some guidances on how to proceed. Until we see them the Pediatrician has recommended we do not try to reintroduce any of the foods we have out of his diet right now. We have also decided to put Matthew on Zantac, a reflux medication. We are sort of just pulling straws out of a hat here. He doesn't really exhibit any strong signs of reflux. There are two reason we figure it's worth a shot. It has been noted that he has excessive gas in his stomach and that he does not burp after feedings and we seldom here him fart ... so he could simply be bloated and gassed up, causing discomfort and making him uninterested in food. The other reason is that he often has this little cough/sputter/clearing throat/sometimes gagging thing going on when he's drinking his bottle. I used to assume it was just because he's dosy when he drinks and forgot what he was suppose to be doing ... but he's doing it a bit more lately, so who knows. It is easier to put a child on medication and see if it helps then to do run the tests to see if they have reflux (especially because none of them are a guarantee to give you an answer). Reflux medication is suppose to be considered pretty harmless and according to our doc has less side effects and is safer then using tylenol or ibprophen.

The being said after only 2 1/2 days on the medication we've had to stop it. For the past two days Matthew has had fevers. This could be yet another virus, his ears acting up, or a medication side effect. So seeing as there is no urgency for him to be on the medication we have stopped giving it to him to help us figure out the cause of these fevers. Hopefully we make it through the weekend and don't have to bring him in to emerg, I do not take kindly to spending my Victoria Day at the hospital again ... brings back to many difficult memories.

So there goes another long blog about our boy. Rebecca asked tonight "Is there something wrong with boys mom?" Such innocent questions that come from children.

The rest of the family is fairing well. Rob is already thick into his night course, with his mid-term already next week. He's enjoying the course so far. This one being a religious course on Paul. He says he may not agree with all they are teaching, but it's good to get a different view. We're sure looking forward to June when we no longer have to hear the words "I have to study!"

We're attempting to get back into our old tradition of having Family-Time on Saturday afternoons, when we take time to enjoy free outtings, usually meaning nature walks and seeing the beauty of God's creation. Last Saturday we went for a walk on the Dundas Valley Trails. Yesterday we had hoped to go to Felker's Falls (a trip down memory lane), but since it was raining off and on and Matthew was under the weather we opt to go for our walk on Monday and instead watch a movie ... only for it to end up be nice for the afternoon ... ah well ... now I'm sure it will rain Monday!! :)

Learning to ride the firetruck

A walk at Dundas Valley Conservation

Autopsy Results

Already five weeks ago I started this blog, but time just never allowed me to complete it. So, hopefully I can get it done today.

On April 14 Rob and I made a trip back to SickKids - the first time we’ve been back since James passed away … and I had hope the last, but I’m now told if we want copies of James’ medical records we will have to go back to do that!

We had a meeting with James’ Lung Specialist to go over his autopsy results. The trip went well, bringing back a lot of memories, but all in all it was okay. We did not go to the Ward or near the ICU, the places where the most memories remain. Although James had some really good nurses, we did not create a large enough bond with any of them to warrant putting ourselves through a visit to these places.

The autopsy results did not provide any new information that would have changed the way we had treated James. At the same time there were a few interesting things that they did find. All in all it came back as they would have expected.

The most amazing piece of information we got from the results is that when looking at James’ stomach and intestines the results read “unremarkable”. In doctors language this does not mean amazing or wonderful, but it means that there was nothing worth remarking about as they appeared normal (which in itself is amazing and wonderful). We knew that they had just looked at James’ stomach when they did the last Whole Lung Lavage and at that time did not see anything out of the ordinary. The part that amazed us the most was that his intestines were “normal” for James had been deemed to have colitis (inflammation of the bowel), never mind the fact that he had been struggling to get over C.Diff during his hospital stay, a bacteria common to patients with colitis. Colitis is a very broad term used whenever there is inflammation in the bowel and they cannot come to a precise diagnosis (like Chron’s Disease or Irritable Bowel Syndrome).

But yet the autopsy claims he did not have colitis. A sign of colitis is that you have mucas in your stools, and when it is quite bad you also have blood. At 20 months they did a colonoscopy of James’ small intestine, at which time they concluded that he had colitis. Biopsies were sent away but they could not come to any conclusion as to what caused James’ colitis and so they deemed it to be related to his LPI and likely from having too much protein as this was only shortly after he was diagnosed.

What conclusion can we make from this information? It would appear that James did have colitis at one point as the colonscopy and biopsies show this. Likely this colitis was due to having too much protein in his system. Once he was put on a proper diet his bowels were able to recuperate from this (similar to when you or I have a flu and diarrhea with mucas; or for someone who has an allergy that reacts with mucas in stools until the irritability is taken away). There may have been the occasional time when this inflammation flared up again, such as when we did a formula change that his system didn’t like. But all in all his bowels recuperated and he did not have full-fledge out of control colitis as we thought he did.

Why did we think James had colitis?? Mucas, mucas and more mucas. James diapers were always full of mucas. It went up and down, sometimes just streaks of mucas, other times all mucas and no poop. We tried all kinds of things, struggling to figure out why we couldn’t get his colitis under control and what was in his diet that was irritating him so much. Based on the autopsy we come to the conclusion that James had colitis which he recuperated from with a proper diet and the mucas that we continued to see in his diapers (as well as draw out of his stomach when venting him) was not bowel irritation but was all coming from his poor overfilled lungs. And to be honest we cannot be sure that it came directly from his lungs. It is very well possible that his whole body was effected by the LPI PAP and mucas was being overproduced in various areas of his body. So although James lungs suffered the most, this was an issue that was spread throughout his entire body.

For us this was the most interesting piece of information, information that would have helped us a bit in our dietary treatment. We were limited on diet with James as it was, so we were often stressed about what we were missing that was causing all this mucas. Had we known that the mucas was not actually colitis we would have been able to stop worrying about what we were feeding him and instead focus our worries on where this was all coming from and how we could help it. In the end there is no answer, but the more time we had to work with the puzzle pieces the more valuable research time we would have had.

The other item the autopsy noted was that James had a calcification buildup by his brain stem (I believe that’s what she called it … the report says in the basal ganglia). This buildup was not effecting him, but is a type of buildup that is often found in patients with Parkinson’s Disease (a movement disorder that often effects a persons motor and speech skills). James had no signs or symptoms of Parkinson’s Disease and we have no idea whether this buildup would have ever developed into something of that assort. We do know that it shows his body was not able to properly breakdown certain items … all part of his genetic disorder (LPI).

James also showed indications of osteoporosis. They cannot say whether this is part of his LPI, as osteoporosis is an LPI issue, or whether it is an ICU issue as he spent three week immobile and had already lost muscle tone, especially in his legs.

While we were there we signed a consent to have another specific DNA test done. The doctors would like to test whether James might have some form of another rare lung disorder called ABCA3, which is a wide ranging lung disorder that is often fatal. In recent years they have been able to find the DNA chain for this lung disorder and are now able to test for it. This disease also has to do with surfactant problems in the lungs (James lungs were unable to break down the surfactant). They do not believe that James had full-fledge ABCA3 as we know that he definitely had PAP, but they would like to look into whether he has any small form of this which might explain the excessive surfactant and lipid issues in his lungs.

Over the next few days the American Thoracic Society (ATS) Conference is taking place in Toronto (May 16 to 21). According to their website: “The ATS International Conference is the most prestigious scientific meeting devoted to the presentation and discussion of new research findings and the latest clinical developments in respiratory, critical care and sleep medicine”. Our Lung Specialist advised us that they will be presenting James’ case at this Conference. James’ case will be presented by one of the Fellows who worked with/on him while we were there. It will be reviewed/discussed by one of the leading chILD (Children’s Interstital Lung Disease) doctors who I have read much about in my recent findings of the chILD Foundation. In itself it is amazing to know that this is happening, even more so when she told us that usually they have 1000’s of people apply to have their case discussed … and of those James’ was chosen. The most important aspect of this is simply that it will create awareness among doctors. It will of course also give way for ideas when you have a whole room full of doctors whose expertise is in this area.

It is a comfort for us to know that although James is no longer with us, the research to find answers continues as much as is possible so that the next child will have a better opportunity to overcome these diseases. As we watch and hear the doctors work we pray that an answer may come, but at the same time we realize that it is the Lord who is in control, and only in His good-timing will the answers be revealed, and this also means we may never receive the answers we pray for - for some things are just beyond our human comprehension.

"I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that men will revere Him." Ecc 3:14

Sunday, May 4, 2008

Doors Open Hamilton

We finished off our holidays yesterday by participating in Doors Open Hamilton again this year. Last year was the first time we enjoyed this wonderful freebie day, and we made sure we didn't miss out on it this year. For those of you who are not aware of this day, it is a day when the City of Hamilton has most 0f it's museums open for free admission, as well there are many other places (firestation, churches that participate. Doors Open is done throughout cities in Ontario with each of them on a different day, so you can also participate in surrounding communities if your are energetic.

Our first stop yesterday was the Auchmar Manor originally built in 1855 by a politician named Issac Buchanan. We chose to go here because everytime we wait at the intersection by it the girls will ask me "What is that place called mom?"," Did only one person/family live there?" So we thought it would be nice for them to take a closer look. This property is in great need of funding and restoration, as it has no furniture and needs a lot of work ... enough that they will only allow you on the main floor, even some of the volunteers stated that they had never been upstairs. It would appear that part of the reason they have it on the Doors Open list is to advocate for people to petition to their local politicians to have it restore. Seeing as we ran into friends when we arrived ... the girls spent more time playing then actually paying attention to the information that was being told. Ah well, you can't win them all ... and at least now they have no excuse to ask me the same questions each time we stop by there.

Our second stop was Dundurn Castle and the Military Museum. Last year we had planned to go to Dundurn Castle, but those plans didn't happen and so the girls we excited that we finally got to make it there this year. This was as bit more interesting as the people were actually dressed up and the home was completely furnished and filled with old artifacts, allowing them to better visualize everything. They also had fun at the Military Museum as it had some hands on "toys" for them to play with.

We arrived home mid-afternoon just before Matthew also arrived home. And then ended our day by attending our Ward Social at church ... an enjoyable time of communion and fellowship. And now our holidaying is done for some time as Rob heads back to the grindstone tomorrow ... this time work with school two nights a week - Monday and Wednesday. And with another full-schedule this week it's back to work for me too! :)

Auchmar Manor - The Dovecote (home for the pigeons and doves - which were held in much higher esteem in those days - used for gaming and eating).

Rebecca and Evan taking at peek at the "grounds" (right)

Since you are not allowed to use a flash in Dundurn Castle it was a bit harder to get any good pictures as my camera does not do well under low light.

The main staircase and the masterbedroom

Wow heavy ... sure makes one appreciated todays irons.
Playing at the military museum (right)

Friday, May 2, 2008

Niagara Falls

We're back after a short but very enjoyable holiday where we spent two nights at the Fallsview Embassy Suites in Niagara Falls.

At Christmas time we went away for several days and when we arrived home we found in our mailbox two envelopes with money in them. The two envelopes were connected and came from the local Fortinos store. We do not really know the complete story of why we received this gift, but rumour has it they were in the process of setting up some sort of fundraiser/food bank for us when James was alive. After James passed away a halt was put to these plans but the money that was set aside for this was still given to us. At that time we decided to put this money away for something special. Knowing how much the girls wanted to see Niagara Falls (they have a great fascination with waterfalls as we like to go for walked and look at the local falls) we decided to put this towards a more elaborate trip to Niagara Falls once Rob was done school. We found a great deal on TravelZoo and for once we got to hotel in style with a two room jacuzzi suite that included breakfast and supper, plus all the other bells and whistles of a plush hotel.

The girls were excited and thoroughly enjoyed themselves. They would have been quite content to hang out in the hotel the entire time, but we also induldge in some of the other overpriced touristy things to do. We purchased the Adventure Pass and spent two days enjoyed the area. Our first day was cool but without rain, which was a wonderful bonus as we were expecting rain. It rained in the evening when we went down to view the lights, but seeing as you get wet from the mist anyways, it wasn't really all that bad. Our second day it rained off and on, just light rain when it did. So although a glommy day it still was nice. Once again it didn't make much of a difference that it rained since we spent our time on the Maid of the Mist and the Journey Behind the Falls ... places we would have gotten wet at anyways.

The view from our hotel room

The Whirlpool Areo Car

Journey Behind the Falls

The Maid of the Mist

Bath time after enjoying the swimming pool. A small cap of bubble bath goes a long ways in the jacuzzi ... the girls were absolutely thrilled with this.

The American Falls and The White Water Walk