One Third of a Year

It's hard to believe that it's already been four months since James left us for a better place. The memories continue to be so vivid that it seems like only a few weeks ago.

Life has carried on in these past four months in many ways as if nothing ever happened. We took up our task again and in most ways function and live like a normal healthy family. But, there is not a day that goes by where we do not think about James. He continues to live on in our hearts and minds. There are days where he consumes my thoughts, and other days where I only spend a short time thinking about him or looking at his pictures. There are periods where I go without dwelling too much on the past, only to crash shortly after consumed with grief and desiring to hold my boy in my arms again. During this period often comes a guilt feeling also ... how can I go on as if nothing happened? I want to go on and be normal, but to go on and be normal feels like I am putting James behind me and I don't want to put James behind me. Remembering James comes with so many other feelings and emotions that it's seems impossible to "be normal" as long as these feelings are there. Often during these times my thoughts are mixed up and not always the most reasonable. But always, my mind knows I'm being unreasonable and I have to work myself through things again to bring myself back to a more clear-thinking, in-control feeling. During these times I wish I would just "be normal" and when I realize that I am feeling "almost normal" I feel bad for not missing him more .... and so it's a vicious cycle that I can't seem to win, but just have to work through each mood as it comes. Eventually I will come to accept a new "normal," a balance of these two extremes. (for what is normal? Is there a philospher in the house?)...

I often struggle to remind myself that my desires to have my boy back are extremely selfish. My memories are slanted as I tend to forget the tiresome work that came with caring for James. Last night I spent some time looking over his charts, reminding myself what a twenty-four hour period with James was like. At one point I was going to post a blog about this, but time never allowed for that and once James was in the hospital I forgot about it and never completed it. As I look at these charts I am amazed that I was able to function with the little bit of sleep I got each night between caring for James and Matthew, most nights the longest stretch of sleep was a 2-3 hour period between 2am-5am ... if I was lucky. But at the time I remember just doing it, not really thinking about what I was doing ... I suppose we learned from James, we just accepted and carried on. But it would be even more selfish if my thankfulness for James being gone is because we were relieved of the time consuming care it took to raise him. I would take it all back in a flash if it meant having my boy back, but the Lord decided to relieve us of this burden.

When I read these charts I am not just reminded of the time it took to care for James, it reminds me more of how unstable James was, how unhealthy he was ... how terminally ill he was. He seldom complained but I often wonder how ill he truly felt, how much he was truly enduring each day. And then I am thankful that he no longer has to go through all this, he has been completely relieved and it is so selfish of me to want to bring him back to that ... for I can dream all I want, but having James back means having everything about James back ... if it were possible that would be the most unfair thing I could ever do to him. James has what we all desire, he lives in a house free of pain and suffering, free of sin and in the care of our Heavenly Father ... what more can a person desire? I am so thankful for this comfort that we have and that I can process my mind each time again to remember this and to be thankful for all the Lord has done for James and for us.

We have received various gestures from people letting us know that they are still thinking of us, and by this we are encouraged as well. The picture above is a beautiful digital layout of what we received as a framed gift last week, and we thought we should share with our readers. It is a curious thing that when James was ill, while we received numerous cards, many of them home made, one card he enjoyed most was a home made one with a fuzzy Elmo pasted on the front, lovingly made by this same lady who gave us the layout. Below is a picture of James holding this card. Altho James had great desires to pull Elmo off the card each time he played with it, the card still remains in tack and continues to sit on the nighttable beside my bed as it brings back so many memories. Below is also a picture that my dad took of Rob and James, taken this past summer. This picture has extra special meaning because it was taken the last day that James went for an entire day without needing oxygen. When we got home that night we hooked him up again, and he never came off oxygen for long periods again after that, only short little breaks, that slowly got shorter until they no longer existed. If I thought digital cameras were great before, I know now how wonderful these are, for from them we have so many memories that would slowly fade away if we didn't have pictures to help us remember more clearly ... and because it is digital we can take so many more pictures then we ever did before. All the pictures in the world would never be enough, but they certainly help us to laugh and cry through the good and bad times.

Oh how I miss my boy, but oh how glad I am that he is resting peacefully.

Accepted

Today's exciting news:

"Dear Rob

Your application for admission to the M.Div. program at the Theological College was discussed yesterday at Senate meeting.

I am pleased to inform you that all your documents were found to be in good order, and that you have been admitted as a student to the M.Div. program. ...."

Now all Rob has to do is survive through this last Term at University ... it's been a struggle and although the end is getting nearer it's not in completely clear in sight yet. It's been the heaviest term, with excessive reading requirements, and extra essays (and long ones to boot too). I have great confidence in my hubby even though he's not feeling all that confident lately. Yet he looks forward to September, knowing it will be difficult, but also knowing what he will be learning will be more applicable and enjoyable then some of what he is learning now.

The Lord has brought us this far, and He continues to be with us each step of the way.

Eating!!

Well this one will be short because I really need to get some zzz's before Matthew gets me up for his nightly feeds (yes plural, usually twice a night).

I was looking forward to posting a blog today about how we had made it a whole week without any vomits. Unfortunately Matthew killed that blog theme last night when he threw up again. So now I can blog that we went six days without a vomit ... better then the three days I could write about before. The last few vomits he's had have been smaller, usually throwing up a couple ounces of the 5-6 ounces he has drunk ... so maybe that's the bright side to look at.

But on another note I'm so very excited to write that Matthew is eating ... not just nibbles ... eating!! Like half to a whole jar of baby veggy food at time. This is so amazing and exciting to watch!! He does not like cereals (rice, oatmeal, wheat, etc) so this seems to be why we were having such a hard time starting him off since these are what you start with. When we put him back on solids a couple weeks ago I decided to fast track him to veggies since I figured we'd gotten enough little nibbles (I could only get about 1/4 tbsp into him when we last had him on solids) of cereal into him to determine whether he had any obvious (severe) allergy. So we did some basic cereals, he wasn't taking to it, so on to veggies and he seems to really like it. At supper time he even cries because I don't give it to him fast enough. We're so happy and excited and encouraged by this. Hopefully this will continue and once we have a good solid baseline to work with on what he likes then we're going to have to try figure out if the cereal issue is a taste dislike or if he's trying to tell us something by not wanting it.

And now I'm off to bed. Good night all!

Lunch Anyone?

Marietta decided to make lunch for us today ... completely on her own without any assistance from me (I was busy feeding Matthew) .... okay I turned the stove on for her, but that's it. She thought this was worthy of a blog entry, although I'm not sure why considering the outcome. She seemed too proud of her accomplishments to be deterred by her "over" achievement. One look at the picture will tell you what I mean! :) We knew lunch was ready when the smoke detector went off!! :)

But since we were able to salvage the results by scrapping the burnt stuff off she didn't seem too upset (I thought she would have been quite upset), and seemed to figure it was a lesson learned. She says she learned two things: next time use a bit more margarine and don't count to 100 inbetween flipping each sandwich. If you look you can see that one is not as burnt. After she flipped it she counted to 100 figuring she had put it in after the first one so she should wait to flip it.

She enjoys helping and catches on quickly, so I'm glad she wasn't discouraged by the outcome or she would be afraid to try again.

chILD (Children's Interstitial Lung Disease)

You know you are a chILD parent when . . .

You compare ER’s and doctors instead of grocery stores, and malls.

You compare your child’s oxygen saturations, PFTs (pulmonary function tests), CT scans, and meds with other moms.

You wake up several times a night to… “Just check the cannula (nose prongs)”.

You have more medical equipment in your home than most third world countries.

You view toys as “therapy devices”

The clothes your infant wore last fall still fit him this fall.

You cheer instead of scold when they blow bubbles in their juice while sitting at the inner table (that’s speech therapy), smear ketchup all over their high chair (that’s OT – Occupation Therapy), or throw their toys (that’s PT – Physical Therapy).

Fighting and wrestling among siblings is also considered PT (Physical Therapy).

You also don’t mind if your child goes running thru the house tooting a whistle or blows soapy bubbles on your living room carpet.

You’ve fired at least three pediatricians and can teach your family doctor a thing or two.

You have been told you are “in denial” by several medical professionals....AND... This makes you laugh!

You have that incredible sinking feeling that you’ve forgotten SOMETHING on those few days that you don’t have some sort of appointment somewhere!

You get irritated when friends with healthy kids complain about that ONE sleepless night when there child is ill!

The Doctors/Nurses/Specialist/Hospitals etc. all know you by your name.....without referring to your child’s chart.

You keep a DAILY growth and weight charts.

You calculate monthly statistics for the number of times your child vomits, coughs or runs a fever, AND ……you did this for more then one year.

You keep your appointment at the specialist even though a snow storm is raging because you just want to get THIS ONE over with.....you waited 8 months to get it.....and besides, no one else will be there!

Your child’s medical file is two inches and growing.

AND finally, You never take a new day for granted.


A week or so ago I found a new website for the chILD Foundation and the above comes from the website. Actually, they found me, through James blog and requested to have James blog added to their website. (under the Family Support Section) Reading this brought back a flood of memories as a good portion of it is so very true. I'm sure the same list could be said for most parents with a chroncially ill child, but it definitely hit home again. It made me realize how as we go on with a normal life so many families are still out there struggling to find answers and help for their children. We are not confronted with it daily anymore and so the reality fades and sometimes it's good to have that reminder of how fortunate we are when our children are healthy. It also made me feel bad for my post not long ago about how sick I am of doctors, for I really have nothing to complain about. The calendar still seems to be filled with far more appointments then I would like, but these appointments are not as time consuming. It takes less then ten minutes to throw together a diaper bag and pack the kids into the van. It doesn't take me an hour to get ready to go anymore. I don't have to switch the feeding pump over to the portable bag, switch the oyxgen over to the portable tank, pack a cooler with extra formula and prep medications for while we are gone. Pack the Sats monitor in it's bag and then pack the diaper bag, never leaving the house without extra clothes. So ya ... that's five bags to pack. And we can never leave the door without James saying "stinkies" only minutes before we would leave ... the joys of a kid that had 6-8 dirty diapers a day. Plus we always had to run down a good assessment of how he was doing before we left to make sure he would be stable for the ride. Double check the van to make sure the vomit bowls are still in there (in case we forgot to put them back after we cleaned them). And that was just getting out the house ... never mind leaving early enough to give time in case I had to pull over because James was vomitting (let me tell you about a super two year old who was able to hold a vomit bowl, catch it all and then wait patiently while I pulled over to help him clean it up), and enough time to unload all the equipment again when we got there , plus usually having to do an couple minutes SAT assessment when we arrived to see how the movement and outside air was effecting him. And of course there's arriving home again to switch everything back over and unload. Wow, just thinking through it makes me realize how easy it is to pack up Matthew, it's amazing how quickly we forget these things.

I think my frustrations last week was more that mentally I had thought that we were saying good-bye to the hospital, the "family" we had developed there and all the medical research and questions ... it was just depressing to feel like we hadn't reach the end of that road yet. It makes me sad but at the same time I enjoy my visits to the hospital, it is a bit like visiting "home" after being gone for a while. To look at the changes and still be able to know a good portion of the faces when you return. With time this will all fade and it will feel less like home ... which is good. It's depressing to know that just because our journey is over it doesn't maean the hospital isn't still full of many others who are struggling. Already during one of my appointments I noticed a very heartbreaking change they made. It really wouldn't effect anyone else and is such a minor unimportant issue when it comes to a hospital, but it sure hit like a ton of bricks when I seen that they had replaced "James'" fooseball table with a new one. There was absolutely nothing wrong with the old one, so I don't know why ... except maybe to keep in line with Macs idea of always having to have the newest and the best ... but somehow it made the whole room like a different and unfamiliar place.

The chILD website is relatively new and they are working hard to make more awareness of it and the connections it provides. At this time they are still working on getting more information about disease and disorders into the site, but sounds like they're hard at work. The site helps you to connect with doctors who specialize in Children's ILD (Interstitial Lung Disease) Since it is relatively new the first issue they have to overcome is having it come up near the top of a serach when people use a Search Engine. Websites come up based on how many times the link is used after a search and how many other pages are linked to the page ... so a new website takes some time to work it's way up to the top. You can help by doing a search in your computer for chILD Foundation (http://www.childfoundation.us/) or intertitial lung disease. I did it again today and noticed that the work of the group has paid off as it's near the top now. They are suppose to be trying to get it to come up better when you type in the name of your disease, but so far I didn't find the Foundation when I typed PAP. Through this website there is also a Yahoo Health Group where those with ILD can chat together and try help each other out. I'm not sure if this would really have helped any but it would have at least been a place where you can connect with those who have a bit of an idea of what you're dealing with ... and who know all the acronyms that we like to use :)

Even though our lives are no longer completely filled with LPI, PAP, ILD, UCD (Urea Cycle Disorders) and all those other lovely acronyms, they still live in us and we have to decide how to use what we have learned. Do we put it away or do we put it to use. This is still something I'm working through.

Marck Break, Week 1

Well week one of the March Break has come and gone and we’re on to week two now. We had an enjoyable week with some various little outings to keep the kids busy. Sometime it came be rather handy living in the city, where you can just pop out to do something and come home inbetween to keep Matthew on his nap schedule.

We finally completed Rebecca's birthday celebrations on Sunday with birthday cake and a game of Pin the Tail on the donkey ... talk about a drawn out birthday. Actually it has been even more drawn out as at the end of the week she received more presents from those who were suppose to come to her birthday party, and from some friends from school. Maybe it was worth being sick on her birthday?!? :)

Our Monday was a quiet day with a wart treatment appointment and then I took the kids out for supper at MacDonalds as I had agreed to take them out for lunch or supper since Rebecca didn't have a birthday party. Tuesday we spent the day in London at the ortho and visiting family there. Once upon a time we used to make a monthly visit to London for these appointments and it was nice for the girls to keep close contact with their cousins ... it's been a long time since our last Ortho visit but it sort of felt like "old times".

Wednesday we were in and out lots, the day just sort of clicked together nicely as we do most things on a last minute basis depending on Matthew. Matthew was back in bed for a nap at 8:30am and since Rob was home for the morning the girls and I headed off to the sledding hill to get one last sled in before the snow melted. Being at the hill at 8:45am means you don't have to worry about watching out for kids when sledding ... it also means there's no one there to help you when you get stuck in the parking lot. After a brief panic on what I was going to do about this one ... the girls and I set to work to dig ourselves out and were actually successful pretty quickly ... a bit of digging and some chipping away at the ice and we were able to move enough to rock ourselves out ... and off to enjoy some sledding time. Considering we had just had another good snowstorm over the weekend the hill did not have snow on it and with a few warmer days it had become rather hard and bumpy ... so I'd say that's our last sledding trip even though there's still snow (better classified as ice) out there now. We returned home in time to have a snack before Matthew woke and we went off to the Mall to attend one of there daily shows, this one was a juggler, which the girls thoroughly enjoyed. Some shopping, home for lunch and nap and then off for some skating yet before supper time.

Thursday we went swimming and Friday we went off to the Sugar Bush at Agape Valley and a visit at my parents (and a couple other short visits on the way home). The kids enjoyed seeing how Maple Syrup was made and we found a nice place where admission is free (even bumped into some friends there ... it's the dutch blood that draws us to these things eh ;) Since we saved on admission costs we instead enjoyed some food there, at a reasonable price. I have not been to any of the other local Sugar Bush places, so I can't compare on the tour or information, but we thought it was worth our trip ..even if it was a bit further (didn't matter to us since we combined it with a visit to Grandma's).

While Rebecca went to a birthday party Saturday morning Marietta helped me out in the kitchen getting some stuff ready for Sunday ... won't be long and I'll have her fully trained ... haha!! :) After bath I braided up Marietta's hair and put rollers in it as I had promised her. She loves having "five braids" in. This is where I braid them all to the center of her head, so at the back of the head they go in upside down. Then we usually put a few rollers in to make the middle look nice. This time I did not braid them completely to the centre so we could put more rollers in ... she loved how it turned out and wants it this way for her Aunt Val's wedding (her and Rebecca are flower girls).

And now we're into week two of the holidays. Hope you are all enjoying your time as well.

Updated Family Photo :(

So on Family Day (February 18) we took some family photo’s but I only posted the ones of the kids. So here’s a couple of the family ... nothing special, but at least we’re all looking at the camera and at least Matthew’s not crying (as he did on our first attempt).

With a new minister coming the church is putting together an album (can you imagine the size of that) for the family in order to help them to get to know the members. So we are each suppose to include a family photo or something of that assort to introduce our family. This is/was a difficult task for us. On our wall hangs recent family photos, taken only days before James went into hospital. Although we realize James is no longer here, he is still very much part of our family and to exclude him in a family pictures is like excluding him from our memory. I realize that is not truly how it is, but that is how it feels. On the other hand, we realize that our new minister is meeting us as the family we are now, and that means our family photo is outdated. If our photo was outdated because of a new baby in the family it would be no big deal to run off to a photo studio and have an updated picture taken. Somehow I could not bring myself to do this, it was like we were officially taking James out of the picture/family. So this is how we ended up doing family photos on Family Day. It just seemed easier to take some snap-shots- making it less formal and less official that this is truly our complete family now.

As the photo’s daily run across my computer screen I have slowly adjusted to them as just another photo. As long as they are on the computer and are not hanging on the wall making things more official then it doesn’t seem so bad. On the day I took the photo’s I could not bring myself to post them, but I suppose each change takes time to be accepted, one step at a time ... eventually I will also have to change the photos on the wall, but for now I am enjoying things just the way they are.

So which one should I use? I favour the top one, but we took these bottom ones because we felt we were sitting too far apart on that one. None of them turned out great, at least one of us just doesn't look right on each ... ah well, the joys of family pictures. I better just get my butt in gear and print one so I can get my scrapbook page done.

Rebecca's 6th Birthday

So this past week has just been one of those weeks where nothing really pans out the way you expect it to. It already started off looking like a busy, full scheduled week, so Matthew's miserableness and the lovely flu bug weren't exactly things we had pencilled in ... but hey, when are such things!. Never mind the Snow Day the kids had on the one day I was hoping I'd be able to tackle a ton of things ... which ended up with Rebecca and I in bed with the flu.

I'm glad it was Rebecca who got the flu on Wednesday as it would be awfully hard to explain to her otherwise why we were simply not up to a party the next day. On Thursday she seemed better in character and was able to play but it was very obvious she was not well yet since it was not until 3pm that I heard her famous words "I'm hungry mom" and she finally decided to try a piece of toast. The day past mostly like any ordinary day, except that she opened one present first thing in the morning, other then that no comment was really made that it was her birthday. It helped that she got the best present first (a little Hook on Phonics electronic game) which kept her busy all day long.


On Friday she woke up feeling ready to go to school and off she went for the last school day before the two week March Break. The afternoon was spent practicing for the Easter Program they had at night. She informed me that she did not last through the entire practice because her stomach hurt and ended up having to sit out for a bit. She was only home for a bit and then crawled into bed with a sore stomach. Yet she insisted on going to the Easter Program, and who could blame her after all the practicing they'd done at school and the first time she got to actually be in the program instead of watching. We found a seat near the front so she could come sit with us if she ended up not feeling well, but she lastest through the whole thing, although as you can see from the picture of her sitting down she doesn't look all to healthy. She looked awful pale and I wondered a few times if she's survive. Since I could not see Marietta most of the Program I had no idea how she was doing, but the picture of her shows she wasn't fairing so well either ... although I had no idea at the time that she wasn't feeling well as she appeared fine when we arrived. When I picked her up after the Program she informed me that she did not feel well, not long after we found ourselves in the bathroom with her being sick ... thankfully in the toilet ... I don't even want to imagine the mess if it had happened on stage.

So Saturday arrives and it's Rebecca's "Birthday". Marietta wakes up feeling better (wish we all could recuperate as quick as her) and Rebecca says she's ready to have a party ... cept we're in the middle of a snow storm. The original plan for the day was to have my family down for the evening. We were going to go swimming and then have her birthday party afterwards. So we had to sit down with Rebecca (again) and explain that the party just wasn't going to be happening. Once she adjusted to this thought she was okay to move on to celebrating it with just us, and thankfully we knew the storm was coming so my parents had brought her birthday presents the night before when they came for the Easter Program.

So we had a quiet day at home where she spent a good part of the day playing with her presents. The girls spent some time outside in the blowing snow playing with a couple gifts Grandpa and Grandma left for them. She also received various craft things and games that they spent the afternoon playing with. Already two weeks ago Rebecca had decided what she was having for supper on her birthday and we heard about it I don't know how many times. So you know she wasn't feeling well when supper time came around, she took one look at her plate and said "my stomach hurts". She sat through supper and after supper we were going to have birthday cake and play Pin the Tail on the Donkey before heading off to bed on time due to time change, but once supper was over Rebecca asked to go to bed since her stomach hurt. The girls were both in bed by 6:30 and sleeping by 7:00 ... good thing we didn't have the family down.


So we still have birthday cake to eat and a game of Pin the Tail on the Donkey to play ... maybe tonight. (Thanks for the idea of a ladybug Helen ... Rebecca seen your blog and wanted one for her birthday, she had fun helping me decorate it.)

Rebecca stayed home from church this morning since she was up last night complaining about her stomach, but by lunch time it appeared she was doing okay again. This time around diarrhea has not set in (yet), but typical Rebecca style it's taking a while to recuperated. Rebecca has actually been complaining of stomach pains for quite some time (over half a year) already and is suppose to be seeing the Pediatrician about it but our appointment was cancelled when our Pediatrician had her baby ... and with her on maturnity leave now we're waiting to hear where we go from here. The pains she normally gets seem to be different then what she's getting now but it's hard to tell as she's not very good at describing what or where it hurts (except that it hurts in the middle of her stomach and hurts more when she lays down - she often goes to bed with a heat pad on it). We had put off taking her to the doctor for quite some time, first because we were too busy with James and then because I knew the response the doctors would give us .... "stress". And sure enough that was the initial explanation, and it's very well possible (althought given Rebecca's nature I don't think so), but we'd like to at least rule out any obvious problems. I'm not ready to go into a great medical search as she can function okay and it's not effecting her growth, but I'd just like to make sure there's nothing obvious. I am so sick of seeing doctors!!!!!!!!!!!!!!!!!! Have I mentioned that we go weekly for planter wart treatments on the girls feet, or Marietta with her bump that she had to have an ultrasound on (no results yet), or Rob who has to go for an echo because they detected a heart murmur ... oh, and you all know about Matthew. All minor things, but it just seems we're always running off to appointments (never mind dentists and ortho). Did I say "I AM SO SICK OF DOCTORS/HOSPITALS/TESTS!"?? I thought we were done with this stuff!! What is wrong with our family??? Okay, that's my vent for the day ... I of all people should know better ... there are much worse issues in life and we have dealt with much worse! So I will remind myself to be thankful for all that we have, we are all still healthy and instead of complaining I should be thankful that we have the doctors, tests, hospitals and means to help when things are not just right. There, I feel better already!! :)


And I thought I would include this picture from a month ago since it's Rebecca's favourite right now ... she loves to show everyone how her loose tooth is hanging out.

Milk and Soy Allergy

Okay, so I get the hint ... you're waiting for an update on Matthew :) Sorry, been an upsidedown week, but here it comes.

After over a week without vomits and almost a week without fevers we decided to start Matthew back on solids - rice cereal. I originally wrote that we would rechallenge Matthew back on his old formula but had second thoughts on that idea. The only reason I was in a rush to do this was because I knew we had a GI appointment this week and I wanted to have a clearer idea of whether the formula was really the issue by time we got there. After some thought I realized that if we did not have this appointment I would not rechallenge him after only one week of stability. On top of this we were getting concerned that Matthew is now over seven months old and not eating any solids ... never mind that I was needing to get up more at night to keep up with his stomach. Since originally we were not having extreme luck with solids, we also realized it was important to get him back on solids to determine whether he is just a slow learner, fussy eater or has an actual food aversion. Since putting him back on his old formula may not give us instant answers we decided to first get him back on solids, develop some stability and then rechallenge ... depending on what the doctors said.

So we started pablum Sunday evening, second time was Monday evening ... that evening he woke up crying and ended up vomitting ... this after he had been extremely miserable all day. This was very depressing. Tuesday we had low-grade fevers and more vomits, so I put him on half Alimentum (formula) and half Pedialyte (electrolyte fluid). After twelve hours on this I rechallanged him on full Alimentum and he immediately vomitted. This time we went to straight Pedialyte and slowly worked him back up to full strength 24 hour later ... it stayed in and has ever since. And we won't even talk about how miserable he was from Monday to Wednesday! Monday night was depressing, but by Tuesday I began to wonder if this time he actually had the stomach flu. So needless to say I was actually thankful when Rebecca and I developed the flu (and later Marietta) ... not often a person says that! :)

So by Thursday when we had our GI appointment, I had just started him back on full strength Alimentum and wasn't really sure what to say about him anymore since this had totally thrown us off. Given that I was literally feeling quite awful, with absolutely no brainpower, I decided to try rebook our GI appointment. It took us just over two weeks to get the appointment (with special pulls from our pediatrician) so I figured we could survive a couple more weeks. Well just my luck, the regular secretary was out and the one filling in had no idea who we were and so insisted the next soonest appointment we could get was in July. Although I knew we could get in sooner I now didn't know how soon and didn't want to wait too much longer ... and with my pediatrician now on maternity leave, my special pull was gone (although usually our name is enough to make things move ... fortunate but unfortunate). So I mustered together all my power and packed ourselves up.

So as the title indicates, it is believed that Matthew has a milk and/or soy allergy ... we have to treat him as if he has both. Right now this is an educated guess, and we will work with this diagnosis unless there are indications it is not correct; then we go back. The flu did hinder us from determining how stable Matthew is now. Some of his symptoms do not completely fall into this diagnosis (increased resp rate, which by the way is slowly getting better), but some do. The diarrhea definitely can indicate this, as well as the vomitting and rash. When I discussed this with our pediatrician she felt his symptoms were too sporadic and inconsistent to be an allergy. The GI Doctor said that often when a child has a large allergy (milk) exposure which irritates the stomach it can take about a month for the symptoms to go away. So we did see instant improvement with the diarrhea when we took him off of a milk-based formula. The vomitting could just have been sensitivity still as he tried to recuperate. She didn't think the fevers fit in and thought it could have been some other non-related cause. As many have indicated rashes are common with an allergy (which by the way the last two days the rash has changed in charateristic and now looks like classic eczema). The fact that we struggled to get formula in him while on milk-based formula and then instantly he drank better on hypoallergenic (Alimentum) also supports the theory.

There is a lot to support this theory (which is why we originally thought it was an allergy). Since he hasn't been on the Alimentum for a month yet we still have some time yet to develop full stability before we can say yes this seems to be the case or no there is more to be concerned about. I had thought that milk allergies show up more obvious, but they said that it is not uncommon for it to take months before it is realized. Matthew would have what is considered a slow-onset / type 2 milk allergy - where the symptoms set in several hours after consumption instead of immediately (although when he vomits, it's immediate, he's usually not done the bottle and literally all that he drank comes back out). Maybe this is why he has always (for the months we've had him anyways :) been a fussier child. Funny how this all started with a high respiratory rate. We have no idea how this fits in. Sometimes the bodies resp rate increase to compensate if it is struggling, but a milk allergy would not likely cause such a struggle. You can get respiratory issues with a milk allergy, but this is more like wheezing, congesting, bronchitis/asthma like symptoms ... which his were not.

Is there a test for this? We were told that usually under the age of one the results are not accurate and often negative because a babies immunity is not good enough to show proper results. As well, our research has shown that only type 1 (immediate onset) gets accurate test results. The best way to determine with an infant is trial and error. So they had told us to put Matthew on a strick milk and soy-free diet until he is one year old. (We did not get into great detail about why soy as well, I think they just figure he's doing okay on the hypo-allergenic so we shouldn't upset his stomach anymore by testing but allow him to stabilize, as about 1/4 of people who have milk allergy also have a soy allergy ... since avoiding soy isn't that hard - I think - it doesn't matter either way to me). We have an appointment for him for when he's just over one year and at that time we'll decide how to proceed with challenging, testing, etc.

We move forward on this conclusion, giving Matthew's stomach time to heal and recuperate ... or so we hope that's all that is require now. This is definitely an easier diagnosis to handle then dealing with another GI-problem child. And so we pray that this is the answer ... as usual, time will tell, but at this point we remain optimistic. Thank you all for your continual prayers and support.

A common scene in our house this past week as it seemed we had extra blankets and sheets covering everything in order to prevent completely stripping beds or scrubbing carpets and upholstery.

I also introduced Matthew to Barney this week and here he is watching for a bit to give me time to gather my wits again. I know many people can't stand Barney, but I am a huge fan of him. All of my kids have loved Barney and I find his songs are mostly (I do have issues with a few of them) fun and/or educational. Anyways, sidetracked there. Our kids watch very little TV but knowing how much Barney helped calm James during those awful first months/visits in hospital (and continued to do so as time went) I figured I'd give it a try (even though Matthew is younger then James was). I put in James' favourite Barney tape in and it worked wonderful for about 1/2 hour at a time ... boy was this a blessing when I couldn't get out of bed and Matthew was miserable .... although I will say that for most of the time I was sick Matthew was an absolutely model child ... kid's seem to sense these things.


Do you think Matthew's enjoying the story? Isn't it great having a big sister who can read?

Rebecca's B-day

I'm due for an update, but instead I'll be heading off to bed early ... second night in a row as I try to recuperate from the stomach/muscle flu. Today was suppose to be Rebecca's birthday. Well in all technicality it still was, but we will be celebrating it on Saturday instead, hopefully she will be fully better by then also ... if tonight is any indication then she should be good ... depending on whether her typical 4 day diarrhea-after-vomitting sets in.

Somehow I still managed to take Matthew to his GI appointment today, not quite sure how I survived it, but given their rescheduling option I didn't have a choice. More on that when I have time and a clearer head ... for now I'm off to bed.