Our Sad Little Boy

James went to have his PH Probe put in this morning. He was not allowed to be fed after midnight, but there was still a bounce in his step and it didn't bother him at all. The bounce left the second he was wrapped in the blanket to have the probe put in. No child likes being pinned down and confined, but his eyes said he knew quite well some sort of torture was ahead.

The probe goes in much like an NG Tube (the temporary feeding tube he used to have in his nose before he got his permanant G-tube), so I had not expected him to be too bothered by this thing stuck to his face, altho it has been 6 months since he had the NG tube. I was more concerned about how he was going to like the idea of having to carry the monitor with him. Well turns out he didn't like either ideas, and he didn't get over it as time passed either.

All day he just sat around, hardly moving his head, just his eyes. His eyes looked big and confused, and sometimes even had big tears in them, as if he wanted to cry but he was trying to be brave and hold it back. He seemed tired and listless. He didn't speak unless it was important, like teddy or ketchup. His nose didn't seem to like the thing either as it was constantly runny. We spent lots of time snuggling or trying to stimulate him to play and get going, but he never got himself going. He did try walk around a bit, but rather slowly, as if the pack was way to heavy. I weighed it and it only weighed a pound. So I finally gave in and gave him some extra Barney video time. He even went to bed tonight without a peep ... a rare thing around here as he likes to keep calling me to make sure I'm still around.

Tonight is one night that I actually hope he wakes up with a bit of a coughing fit ... poor guy ... but at least then we can get some sort of reading. Although, they say the test isn't totally accurate, and medication is a better way to confirm the diagnosis ... and it seems we've already done that. So I'm not really sure how much benefit the whole test will be.

We are scheduled for a Pre-Op appointment tomorrow morning but they said I could come back and have the probe taken out before hand, even though our appointment wasn't suppose to be until later. Guess I'll have to get my butt up a little earlier tomorrow because there is no way I'm going to sit through a couple hours for the Pre-Op with him looking so sad and being so clingy. Can't wait to have my happy, chipper little boy back!

CT No Go

We were suppose to have a Pediatrician appointment today, but I decided to cancel since there really wasn't anything that needed to be dealt with, especially after she called me last week. I had kept the appointment just in case and also because James' g-tube site has been acting up lately. It's been somewhat unstable for a couple months now (in comparison to the months before that) and I've been faithfully cleaning it with salt-water. Last week I started cleaning it more often and also adding polysporin cream with the hope that this would tame it. But still not much change. It's been flaring up really red and pussy and then tames down a bit in the redness, but always lots of puss. When it's red you can tell it's a bit bothersome because the second you go to change him and open his undershirt he's got his fingers in there digging the puss off. They had said that the site will always have it's ups and downs because it's a foreign object in the body, my only concern was that he's suppose to have the tube changed next week and I really don't want to hear that they can't do it because it's not healthy. At the same time, even if I took him in today I was a bit late as he'd need a 10 day shot of antibiotics if they really thought it was an issue. But wouldn't you know, yesterday and today it looked quite nice, or at least reasonable, again. Fingers crossed it will stay like that for another week ... not likely.

When I spoke to our pediatrician last week she had sort of handed the reigns back over to the Lung Specialists office to continue to get the lung tests scheduled for the same day as James' endoscopy. So now it was back in my hands to chase after them and make sure they were doing their job. I called yesterday morning and at least it was obvious they had been working on it since they right away knew who I was and what I was talking about. She did not have the final answer yet, but called back this afternoon to let us know that the broncoscophy/bronchoalveolar lavage is a go, the CT Scan is a no go. Anesthetics would not do the transfer from the endo department to the CT area. I'm not surprised, but still disappointed. This means another day and half shot for another Pre-Op appointment and then the actual procedure. It also means that James has to be sedated yet again, and starved again before the procedure. He doesn't like to eat, but that doesn't mean he doesn't ask for food and drinks. Let's just hope that this one will be scheduled for the morning, unlike next week which is for 2pm.

Tomorrow morning we have to go to have to go for his PH Probe Test. They will be putting in the Probe tomorrow and taking it out on Thursday morning. Last week we stopped James' Losec (reflux) medication, but have continued on with his night feeds. Wednesday night went fine, but Thursday he started coughing and crying at night which gives us a pretty good idea that we are on the right track. He has not coughed and cried every night but most nights mildly, and last night he was up coughing and gagging again for about half an hour. At this point I am not sure if we can start him back on his medication as soon as the Probe Test is done, he may have to stay off of it until after his tests next week ... the sooner we can get him back on it the better for all of us, he looks so sad and confused in the middle of the night.

Another Week

Another week gone by, time keeps ticking. We have been enjoying a quieter pace the last couple weeks and it's sure has been nice. I managed to get all my pictures cut, organized and in photo albums, now I just have to go back and catch up on the comments and writings with them ... only 2 1/2 years behind on that :) It's been great to be able to think past the basic daily housecleaning things, a good part of this is due to less appointments lately, but I much credit can also go to the fact that I no longer have to do the weekly housecleaning. We are noticing the difference already, even though it's only been 3 times so far. I find I have more time for the kids and to try pick up on other things that have been falling behind. I especially notice the difference on weekends, where Saturdays are more relaxing and enjoyable instead of running around trying to catch up on all that I didn't do during the week. I also find I'm more relaxed knowing that my house may not always be tidy, but it's clean underneath. Not that I don't get frustrated when she finishes cleaning the house at 1pm and by 5pm it's an absolute disaster again ... how does it get that way so quickly?

Although it's been quieter there are a few appointments that we've had. As I mentioned previously, Marietta was having some trouble with her finger and so we seen the doctor. I had really hoped the doctor would simply quiet her by telling her it would go away shortly ... but alas ... nothing ever seems that simple in our household. At this point it is believe that Marietta has what is called a Ganglion Cyst. A ganglion cyst is a tumor or swelling on top of a joint or the covering of a tendon. Inside the cyst is a thick, sticky, clear, colorless, jellylike material. Depending on the size, cysts may feel firm or spongy, in Marietta's case it's firm. This cyst is really nothing serious, but first it needs to be confirmed that this is indeed what it is, and in order to do this she has to go for an ultrasound and x-rays. A good portion of the time these cyst can go away on their own and treatment is only done if it is painful or hindering. Since Marietta loves to whine and complain, and whine and complain ... it's really hard to tell if it truly is painful. The doctor did note that there is swelling and inflammation in the finger and suggested using ice on it to relieve the pain, and if necessary (which I don't think it is) to give her ibprophen. So much to Mom's disappointment, more tests/appointments. Much to Marietta's delight she can walk around and tell people she has something wrong with her finger ... like we didn't hear enough about it already before.

Last Friday the kids had a PD Day ... after having two snowdays already that week. They have been enjoying the snow, especially after the first day, when it settled enough that they could walk and crawl on it without sinking way down and getting their boots filled. Rob dug a tunnel through the huge drift at the entrance of our backyard and then dug a big section out in the yards so that they had a fort to play in. After a few days it warmed up and became sticky snow, giving them new things again to do with it. Unfortunately all the snow doesn't look all so beautiful anymore when you go out driving ... all you see is dirty, yukky stuff along the roads.

My parents took us out for a yummy chinese buffer supper on Friday night. We stuffed ourselves full. If anyone knows Rebecca they know how much she can eat, we often say she has a bottomless stomach or a hollow leg ... well just our luck ... we got to see her food a second time when she developped the flu and threw it all up in the middle of her sleep (and yes, she kept on sleeping until we discovered her). Wow ... what a mess to find at 11:30 at night. The rest of the night she spent dry heaving, needless to say, it was after 5:30am before either of us got any sleep. We were surprised when she was able to handle some crackers by the next afternoon ... our experience with Rebecca has always been that if she develops the flu she cannot eat solids for about 3 days ... the second she takes a bite she's sitting on the toilet. But she was able to keep it in, but yet remained unhappy and miserable and would complain about her stomach ... well the diarhea was just delayed in setting in this time, so on Tuesday she was back on a liquid diet ... but by the end of Wednesday she was back to her old self.

James ... can't have an entry without talking about him. James developped a cold last Thursday/Friday, but has been progessing through it just like any other normal child would. Proof again that it is not colds that send him to Emerg all the time (like doctors so eagerly want to tell us because of his breathing difficulties). I didn't even bother putting him on puffers like I'm suppose to as I really don't think they do any good ... and I'm right, hasn't made any difference. We started him on his reflux medicine on Tuesday and back on his night feeds Thursday and have not heard a peep from him at nights ... could we finally have the answer? He's been sleeping through, only slight coughing (sounds more like his cold this time) early in the morning. We should have a clearer answer in the next few days since we had to stop giving him the medicine this Tuesday. He is booked to have his PH Probe Test done next week and has to be off the medicine for 7 days prior to the test in order to give more accurate results. Although the link I have provide says that you stay in hospital for this test, this in not the case. He will go in one morning to have it put in and then back the next morning to have it taken out. Our pediatrician gave me a call on Tuesday to let me know she's STILL working on getting all these lung tests coordinated for the same days as James' endoscopy. She still believes it can be done ... I'm not so confident, it being only 2 weeks away.

James also had a Dietician and Occupational Therapist appointment this week. Not much was done at this appointment, except to update them on the upcoming tests and recent changes that have been done to his diet/formula. James has gone back to refusing to eat ... even worse then before as he doesn't even want to nibble anymore. He puts things in his mouth and then spits them out. The only thing he continues to eat is ketchup and ranch salad dressing. We did get a new weight on James and even after being off his nighttime feeds for two weeks he managed to maintain (or regain since being put back on night feeds) his weight at 10.66kg (23lbs 8oz).

I had an Obstetrician and Dietician appointment today. Just a routine checkup, nothing special. After struggling for weeks to get my fasting sugar levels under control they suddenly dropped in to excellent range in the past week. At the same time, I've also begun to feel better in the past week ... no longer having constant abdominal pain, needing to nibble and munch continously to keep it in control, even though the last thing I felt like doing was eat. I still have some indigestion and reflux type symptoms but I'm feeling much more "normal" again. Hopefully it stays this way. So I'm not sure if there is a connection between this and the sugars levelling ... guess time will tell. But for the time being I can dive back into my sweets as everything is functions properly. They do want me to continue to monitor my levels, just not as frequently.

Rob is currently enjoying (haha) Reading Week. He says he needs about 2-3 weeks to get all caught up on his reading. He did manage to get away from the books for a day to work on the van and do some odds and ends around the house. So he's been mostly buried in his books still ... but we do see him come up for a breather every now and then, which is always nice!!

That's about the sum of it from here.

Snow

We got a little bit of snow last night ... about 50-55 cms (22-23 in) of it. As usual with radio, tv, etc. it's hard to get actual facts and there's some discrepency on the actual amount ... but that's what we measure in a low spot in front of our house. Most of the snow drifted around the houses, levelled out onto the street and then drifted again around the houses across the street ... so we measured by the street. According to the Hamilton Spec (click here to read) we may have set records for the most snowfall in a 24 hour period in the over 100 years. Unfortunately they're doing the record keeping at the airport and from our understanding the east mountain was the hardest hit. We haven't actually been able to get out to testify whether this is true or not. Now AM 900 (here to read) is on the other extreme saying that some area could get 75 cms by the end of today.

Our neighbour lady said there is only one other time she can remember having this much snow from a storm. Funny ... as a kid I remember it happening more often ... but then, I didn't live in Hamilton.

Regardless ... there's lots of snow out there ... and of course I had to take some pictures ... so be prepared!! :)

MacMaster was cancelled today, at first only in the morning, much to Rob's distress as he had a midterm at 12:30pm and they didn't plan to revise their plan until 11am ... that would hardly give him enough time to make it. It was a take home mid-term, meaning an essay that he should have had done ... but he didn't (because he counted on the cancellation) ... and he was still hard at work at it this morning. Finally he realized that whether they decided to have school or not, he wasn't going ... there was no way he could get out of here. (In the end school was cancelled for the day) So we all went outside for a while ... James also, there was no way he was going to be left out. James had been asking since breakfast time to go out, but we told him he had to wait until he was doing having his feed ... the second his feed was done he made sure we held true to our promise.

Lots of snow is great, but really ... it's not. James could only walk on the area that Rob had cleared, which was fine for him, he was content with that. But the girls didn't really know what to do. There was so much snow in the backyard that they couldn't even get into it. They did crawl over a smaller drift to get their sled out of the shed ... but what's the point, you can't sled when the snow is this soft. They had to find that out for themselves, since they wouldn't listen to us. And ... anyone got any suggestions on how to keep snow out of the boots (besides duct tape, I hate duct tape). Soon as they step in a drift they sink down and their boots get full ... even with their snowpants over top ... likely from when they bring their foot back up to take another step. But they still had fun ... and Friday when they have a PD Day we can go out and dig our way through the huge drift in the backyard and make a nice big fort ... that should keep them busy most of the day. Rob spent the majority of the day shovelling ... our driveway and 3 others, and now finally (9pm) the snow plow (or tractor would be more accurate) came by and he's on his way out again.

Can someone tell my why whenever I post a picture using the Center option it doesn't enlarge when you click on it?? And really ... am I doing something wrong ... it's sure a pain when you want to load more then a couple pictures. :) And why is it that they come out published way different then they look when I put it together as a draft ... talk about a pain!!

So here come the pictures:

(Left) James walks out the front door to discover a wall of snow in his way
(Right) Fun running up and down the sidewalk

The drift beside the house
The drift into the back yard ... pictures don't do that one
justice as it was at least up
to my shoulders

(Left) Notice the stuck truck in the background blocking off our street for a while

(Center) Least we don't have to dig that one out

(Right) Snow in the boots

A glimpse of the house ....
kinda hard to really see how
much there is

The drift at the neighbours. We'll have fun getting James to understand he has to stay home after today

Snow Days, 100 Days, Fingers, etc

Much to Marietta's disappointment school was cancelled today. Yes ... she was disappointed, even cried for a few minutes ... but she got over it quickly. Today was suppose to be a special day ... it was suppose to be the 100th Day of school, and that means a big celebration at school. The kids have all been looking forward to this day since Day #1. I could understand her disappointment!! But she got over it after a bit as we explained that since they only count the days they actually go to school ... that would mean that Wednesday would be 100 Day. With that in mind she could have a fun relaxing day and look forward to tomorrow.

Much to Marietta's disappointment school is cancelled again tomorrow. She cried again ... but she'll be excited tomorrow morning when she wakes up to see all the snow and drifts and fun she can have outside. She was even more disappointed this time because now 100 Day is on Thursday and she has a doctors appointment that day. For a few weeks now Marietta has been complaining that her middle finger hurts. We discovered a small bump right at the bottom of the finger, where the finger meets the hand, in the inside, in the part that bends (does that make any sense?? sorry don't know how to describe the place). Anyways, the bump is under the skin and almost seems to be in the vein or something. I remember having a similar idea once after having an IV, it tooks weeks to go away ... but that doesn't explain how she got this bump. It's hard for us to gage how much it actually hurts because Marietta looooovvvvvvessss to whine and complain and whine and complain about every little scratch, bump, bruise, etc. So we've been putting her off and told her it will go away on it's own after a few weeks. So a few weeks have gone by and yesterday she comes home to show us her finger which seems to have developed another small bump this time in the inside of the knuckle area where the finger bends (funny thing is I couldn't find that bump back again tonight). Her finger also was a bit red and had a bit of swelling ... odd! So I finally gave up and decided to take her to the doctor ... if even at least the doctor can tell her it will go away on it's own and it will make her stop whining ... funny how sometimes they'll listen better to the doctor then their parents.

This morning Rob went outside to shovel while the kids played out in the snow. Even James got all bundled up and tried to brave the piles ... wait until tomorrow ... they're over his head!! Rob cleared the driveway and James spent most of the time playing around on there. Then Rob cleared the sidewalk ... and James wandered down there ... a place he really isn't allowed to go, but I must admit it sure looked cute to see this little guy zooming back and forth down the pathway since all I could see from in the house was his upper half. Rob said he was having great fun running down what seemed to him like a tunnel.

The girls had asked to do something special since it was a snow day ... to which I promptly said that if they can't go to school we can't go anywhere else either. They said even just a game together would be special. Well I must thank Harry for making the day "special". As Rob finished shovelling, Harry seen everyone outside and stopped by, offering to take them (minus James, I got to keep him) out to Timmy's for hot chocolate and a donut. This was a nice treat for the girls as Harry usually takes Rob out for coffee and they always want to go with. It was also a nice treat for me since I am chugging away at my photo albums right now, trying to get caught up ... so I had an hour and a half of peace ... James played so nicely I didn't even notice him.

So yes, my current project is catching up on my photo albums ... I was 14 months behind on all of them. Over a month ago my sister-in-law lent me her cutters and finally last week I got them out of the bag and went to work on the albums (only because she said she was feeling ready to get back to her albums ... nothing like a little pressure, eh). I took my stuff out last week and told myself I was not putting it away until I was all caught up. Well, I only got 1 day in last week and 1 hour in yesterday, but 3 hours in today ... slowly getting better, maybe 4 hours tomorrow?
I began this project because ... can you believe it ... no appointments this week. Oh, clarify, no James or Steph appointments this week. Marietta had an ortho yesterday, which takes all of 1o minutes ... and then her upcoming Thursday appointment ... but no major, time consuming appointments. It has been a long, long time since I've been able to say we haven't had any appointments in a week (okay, it was Christmas time, but that's still long enough). I also began this project because I know this lull in visits is only the calm before the storm ... March is looking brutal ... at least the beginning is and by time we reach March I'm sure the end will have filled up even more.

We finally got James' reflux medication today, after having to wait for special forms to be filled out so the medicine could be covered by the government plan he is on, only to find out that they have booked his PH Probe test for Feb 28 and he needs to be off the medication for 7 days prior to the test. So we started him up on the medication and in a few days we should be able to put him back on his night time feeds to see if it actually works ... only to take him off of the medication and feeds a few days later. But he's gone far too long without his night feeds so even a few days will help boost his intake and balance his levels.

So that's about the sum of things around here for now ... hopefully I'll get some snow pictures tomorrow. Finally some real snow!!

James' Multipersonality Friend

In the last blog, we made mention of James' dear and faithful friend Teddy. Now isn't that an original name for a teddy bear? Well, there's a story to how Teddy got his name. Way back in the fall, James began to covet Rebecca's stuffed puppy named Spot. (can you guess...it has spots!). This immediatley became a bone of contention between the two siblings, so we encouraged James pick a friend from his own collection. (That's one perk of the many tests and hospital stays that James has had: he usually comes home with a toy of some sort). Why he picked the black bull we are not sure, but it may be because it's a hand puppet, and so was very entertaining. Regardless, James took fondly to the bull; he took him to bed and where ever he went, and all that typical stuff kids do with their feather brained soul mates. Since it became evident that this bull was a keeper, we thought of calling it Ferdinand, from the Ferdinand the Bull story, but we realized this was an impossible name for James to say, so we ended up calling him Freddy. On the chest of Freddy was some words sown in, which we never paid attention to. However, near the end of December (Christmas morning to be exact), while playing with Freddy, Steph discovered that there was writing on the inside of Freddy, and, by cracky, it wasn't mirrored writing you'd expect from the sewing, but it said the exact same thing as on the front. Almost time to call in Sherlocke Holmes, but not yet. While progressively rolling Freddy inside out, we discovered a stubby snout, then some eyes, and then, tada! there was Teddy! What a strange surprise!

Then we recalled that Freddy originally had had a tag on him, (note the pluperfect tense: had had, meaning that the tag had long since been ripped off). This tag explained how the stock market has bull days, and bear days. Don't we all have bear days once in while? [Sometimes I wake up grouchy......but other times I let her sleep :)] But anyone who has met a bull knows that they are not really jolly animals, so what's the connection? The terminology simply reflects how the two animals attack. A bull puts his head down, charges, and throws his opponent in the air when the two collide. So a bull day is when the market goes up. On the other hand, a bear will rise on its hind legs, claw his opponent down, and stuff him in the dirt. So if the markets go down, it's a bear day. And that makes investors grouchy! Back to James

Although James was as surprised to see his metamorphosised friend as us, he much preferred to chum around with Freddy. It was fun to play peek-a-boo, and suddenly the bear would appear. The bear eventually gained acceptance, and so since he wasn't really Freddy, he became.....you guessed it, Teddy! It is funny how close love and hate are. Now James gets mad if we try to give him Freddy. And if we thought he was attached to Freddy, he is much more attached to Teddy. We wonder how real Teddy is for James, since he like to talk to him, "feed" him, "give" him drink, go with him on his fire truck. One way to describe the two now is 'inseperable'.

Fun with Teddy









Freddy becomes Teddy:

Peds Appointment

We were off to the pediatrician today with the hopes of getting some better information on what's going on with James ... I'm not sure that we really accomplished all that much.

I really like my pediatrician, she's excellent at pursuing things and trying to get things together ... and I know that if she's struggling to get things done than I would be absolutely, totally, frustrated by now if I had to do all the chasing. I also know that if I need things done that when all possible to go to her to make things roll faster or the way we want.

Our pediatrician had been unable to get answers back from our Lung Specialist. I think she also had some issues with how he said they were going to do organize their tests with everything else, and coordinate it all, but in the meantime he has not done anything. I guess he thinks these things happen magically. She has now taken the reigns in her hands to make sure that things get organized. She did manage to speak to our GI doctor (just as I arrived) who is going to try to organize the bronchoscopy and CT Scan at the same time as the endoscopy, as well he will get the PH Probe test booked. She did say we may have difficulty getting the CT Scan done at the same time as the endoscopy and bronchoscopy because it is sometimes difficult to coordinate things in different departments when someone is under anesthetic ... but they will try.

It has now been almost a week since we took James off his nighttime feeds again. The first two days we tried to give him all of the normal amount during the day. By the end of day two we seen signs that this was not working at all: his belly became huge, we seen mucas and blood in his stools again and he was still waking at nights. So we had to stop with that idea and instead we put him back on his regular schedule minus the night feed. This means that once again he is not getting his proper daily requirements ... but we have had 3 nights of complete rest, not a peep from the boy!! Since it may be a bit before the PH Probe tests will be done, they (GI and Ped) felt it was a good idea to try James on a reflux medication as the symptoms are certainly leaning in that direction. She prescribe Losec, an acid reducing medication, for him to try and take once a day, he will need to come off the medication about 3-5 days before he has any reflux related tests done. James recent blood work also shows that even when he is not getting full feeds his Ammonia levels (the most crucial thing to look at when checking James) are in good range, so we do not need to be immediately concerned about the lack of full feeds, but we certainly can't keep doing this for long as he did lose a few ounces.

With regards to James' blood work and the things she could not explain last time ... she could not explain this time either, as she has not been able to get ahold of the Lung Specialist (ya, him again...anyone surprised anymore?) to get a better idea of what he was looking for and how he would like to proceed. So we have to keep waiting for more answers on that.

On the positive side ... we haven't seen fevers lately, James temperature has been pretty steady around the 37.1 to 37.3 ... higher then he used to be ... but more like "normal" people.

We have to go back again in a couple weeks to make sure that everything is getting done for his test date and hopefully to give us more information about what they want to do with regards to his blood results.

And who would of thought it would be so hard to get some reflux medication?? Turns out there are only two places that will do this medication as it normally only comes in capsules. In order to have it made into an oral suspension that I can feed through his G-tube I had to go to the Day/Night Pharmacy where they actually have a technician who can make this type of stuff. Generally they require 3-5 days notice to make such prescriptions, but she said she would have it ready for us tomorrow ... good thing because our pediatrician said to give it to him for 3 days to give it a chance to start working ... and THEN to start him back on the night feeds. Hopefully it works!! :)

Speech Pathologist

After more than half a year of being bugged by doctors, therapists, etc. we finally had James' speech appointment yesterday. Ever since James was about 18 months old we have been pushed about seeing a speech pathologist. We managed to hold off for several months before we gave in and decided we'd at least see the pathologist so they would stop bugging us and that way we'd get him into the speech system so that if he indeed did actually have a problem he would be in the system and we wouldn't have to wait at that time.

In December we had James' hearing tested, which came back normal, and the following week were suppose to have an appointment with Early Words, but we received a call changing the appointment time and date. What we didn't realize was that they had actually changed him from the Early Words program to the Infant-Parent Program, which is much like Early Words, but broader, having a wide variety of other developmental programs and connections to various help in these areas. So in December we had an appointment with the Infant-Parent Therapist to determine what James needed. At this time we stressed that we were not interested in their other programs and assesments but only in seeing a speech pathologist.

We spent about two hours at yesterday's appointment and it went much as I had expected. I had already said before we left that I knew he would not do anything that they ask since he does not like to be put on the spot. The appointment was done in a big play/toy room. We sat on the floor and discussed James while he walked around and played with all the wonderful toys ... and there were lots of nice ones there. If left alone, James plays excellent, and I was happy to hear that he was actually babbling and "talking" while he played. It's amazing what a good ear the pathologist has also. She would ask me questions about what James can or cannot do, his health history, etc ... but meantime she was also able to listen to his babbling. Every now and then she would stop to say what she had heard so far ...eg. "I've heard the g, h, t sounds". After James had had a chance to warm up she brought out her "tools" ... a spoon, a cup, a ball, and a crayon. She lay them out and then asked James to give her the spoon, a task that James can very easily follow. He looked at her and then walked the other way to play with some other toys. She tried several other approaches and asked me to try ... no luck, just as I figured. Just as we were leaving James got Teddy out of his diaper bag, who is his faithful friend who goes everywhere ... and surprising spent the whole time in the diaper bag, if that tells you how much fun he was having. I decided to take a new approach to show he could easily follow simple directions. I told James Teddy was hunger, could he please get the spoon and feed Teddy. No problem. Easily done. Teddy is now thirsty and needs a drink, could you please give Teddy the cup ... no problem. See ... he has no trouble following instructions.

The pathologist advised she had to do her calculation and would call me the next day to let me know the results. From what she could see he was not meeting the 2 year standard number of words, which is 200, and he would score low on the receptive section as he did not follow the requests/instructions that she asked him to do.

Currently James has 45 words in his vocab. I already knew that he would not meet their requirements as I had reviewed their criteria before hand. To look at the differences you can click the links to check between 18 months and 2 years. I knew that James met the 18 month requirements. I also have different developmental sheets from various other sources that only required a child to know 50 words by age two. According to the pathologist, 50 words is from a few years ago and now they have decided 200 is more accurate. Although I do not argue that it is very possible for a 2 year old to have 200 words, I also know that it is just as common that they do not ... especially boys, who most people will tell me are slower then their girls. Marietta certainly had 200 words by age two...she never stopped talking, and has yet to do so. Rebecca on the other hand was a very quiet child, more to herself, like James ... she didn't talk much, but she had no speech problems. James has just started in the past week to put together two words. We will not argue with the fact that James is on the slow side, but we also know that he has been slow with other important milestones ... he crawled at 11 1/2 months, walked at 20 months ... but when he does it he does fine. James just started to talk in the fall ... after being home and stable for a decent period of time. He is learning along the same lines as the girls did, he just started a few months late and at this time we still feel it will all come in due time.

The pathologist wanted James to see a developmental specialist (can't remember the fancy name) who would review all of James' development skills in a play setting and determine how he is doing, and thus they would be better able to tell where his speech fits into the big picture. This has actually already been suggested to us when the Therapist came for the original appointment, at which time we politely told them "no thanks." There is definitely nothing wrong with James' motor and fine motor skills! I spoke to my pediatrician about this and she also did not feel this was necessary. So I once again turned down this option as she said it would not help them in regards to his speech; it would just create a bigger picture. At this time all we want is some guidance on what to watch for and how to encourage and help him in a subtle way. She gave me some information on how to do this.

Today the pathologist called back to give me a more detailed report of what she found after she did all her calculations. She has determined that in the Expressive area (talking) James is in the 10th percentile (20th is normal) and at the level of an 18 month ... yup we knew that. In the Receptive area (following instructions) he is also in the 10th percentile and about the level of a 16 1/2 month old. This is definitely inaccurate as we know he has no problems with comprehesion. The bottom line is that he is considered mildly delayed. She has suggested that we get a referral to the Communications Support Team. This involves individuals with Early Childhold Education (ECE) coming out to our home to work with James on some of the techniques that she told me about yesterday. These individuals are under the supervision of a speech pathologist. There is currently a three month wait for this. I decided to just go ahead with it, as it will be easier to pull him out then to get him in later. The pathologist herself will also be coming to our home in April to do another assessment and see how James is progressing.

So for now we've bought ourselves another two months of time ... by then I think we may have a clearer idea if there really is any reason to be concerned.

The Long Update

The date up top says January 31 ... but that's when I started writing this ... the publishing date is actually Saturday, February 2, 2007

So anyways ... I'm due for another health update. If I can remember everything that's been going on lately ... nothing major, just lots of little things, always trying to put the puzzle together a bit better.

As I mentioned, we haven't been get a whole lot of full nights sleep around here lately. For the last month James has been waking most nights and we've been trying to figure out the cause of these wake-ups. After a week or so we began to notice one pattern, he would usually wake between 10:30pm-12am ... during or shortly after he had a nighttime feed. We began to wonder if this was irritating him in some way, altho it didn't totally make sense since he has his lunch while sleeping (nap time). But slowly this waking up began to get worse and he would wake with a scream, finally one night he had a small seizure, where he was screaming but unresponsive and floppy when picked up. He did not spasm like he has previously and he did not vomit this time, but it took some time to get him oriented and settled again. After this episode we decided to stop his nighttime feeds for a bit. Unfortunately this did not give us a clear answer, altho we did see some change. He no longer awoke screaming, but he would wimper for a little bit and then go back to sleep on his own. So it seemed that the feeding exasparated an underlying problem. With James' diet it is not wise to take him off a feed, since he does not get his protein requirements for the day; in this case he was not even meeting his hydration requirements. We had to slowly put him back on his night time feeds and right away he start waking and needing us to help him settle again.

This nighttime waking began to shift tho, just to cause more confusion and we saw him waking up more often during the middle of the night, usually between 4am to 6am (along with his pattern of 10:30pm to 12am). We also seen another change in the fact that it was not uncommon for him to wake up coughing, which would turn into gagging. At first we thought he had a cold coming on ... but after several nights of this and him being completely fine during the day ... we began to credit this to his lungs. Increasing his puffers did not help any either. (no surprise).

Along with the disrupted nights, we've seen another pattern in James. It seems that every day he gets a low grade fever at some point during the day ... usually late afternoon and evening time. We have been doing vitals on him 4-5 times a day now so we can have a better indication of what his body is doing. His breathing is consistently in the 45-50bpm and once a day we see a low-grade fever. But yet ... he functions and acts completely content and happy.

We decide to track down our pediatrician (who is currently on call at the hospital and does not have clinic, so we couldn't get an appointment) and see if there was anything we could do to help us all get some more sleep. As well, I had still hoped to get some help from her on the upcoming tests they hope to do regarding James' lung issues.

I managed to obtain a bit more information from the lung specialist's receptionist and found out the tests that are so far slated for James. At this time she said they are planning to do a bronchoscopy. This test involves inserting a small tube down into the lungs to look at them and take some mucas and tissue for testing. This test is not the Bronchoalveolar lavage (flushing of the lungs), as the specialist mentioned when we seen him. Later, when speaking to our pediatrician, she said that these two tests can often be combined as one. They also hope to do a High Resolution CT. It is interesting to read what they could all diagnose using this type of scan ... altho I think the main reason they are doing this is to get a better picture of his lungs. As well they plan to do the 24 PH Probe test I previously mentioned - this is when they put a probe with a sensor on it down the back of the throat into the esophagus, just above the stomach. This test is used to measure if a person has reflux. It will be interesting to see how he handles that test ... but then again, the NG tube never bothered him. The last thing the receptionist mentioned is an Upper GI Series. This test requires you to drink a special mixture called barium which helps show the digestive tract on x-rays. After drinking the barium, the patient has a series of x-rays done at various intervals, around 15-30 minutes apart. Marietta has had this test done before. If they require James to drink the barium then they're out of luck: we'll never get that much stuff down him! I spoke to our pediatrician and she said depending on what exactly the specialist is looking for it is possible to do it through his G-tube ... otherwise they may need to put an NG tube in to get it down ... fun, fun!!

So I did manage to get in touch with our pediatrician on Monday. She had not received the lung specialist's dictated notes since they were not posted yet, but she was able to clear a few things up based on what I had managed to get from the receptionist. When listening to what has been going on lately and evaluating James' wake-up pattern, she began to strongly feel that we may be dealing with a reflux issue that is further irritating James' already sensitive lungs. When sleeping a person becomes relax and this means that if they have reflux they may have food coming back up into their windpipe. James' coughing and gagging would be explained by the fact that when a person feels this happening they would cough in order to clear the lungs of this stomach material. But if he doesn't stop it soon enough or if too much comes up then it can actually end up in his lungs. At the same time, we've had a couple vomitting episodes and this could be that he did not not manage to cough in time to prevent the food from getting into his lungs and when too much got in he ended up vomitting. We could just simply try a reflux medication and see if it would help, but considering all these tests are pending, she thinks we should just wait and see what they say as we can get a clear indication if he has not been on the medication. She said a good indication will come from the PH Probe test and this can be done relatively quickly, so she will look into getting this schedule ... hopefully we can get sleep again soon.

While speaking to her I mentioned that we had had blood work done the week before, some specially ordered by the lung specialist and the others were his routine blood work. She quickly reviewed them, but since she had not completely analyzed them, she could not give a clear evaluation. What she did see was some levels are out of wack, but nothing so obvious to lead to any sort of answers. One thing that did stand out was that his IgG (immunoglobulin) levels were double what they should be. She did not want to speculate at this time what this could mean and wanted to wait until she spoke to the lung specialist to find out what he was looking for before she decided whether we need to have him see someone in Immunology or whether we should just retest after a period of time. I have a follow-up appointment with her next week and hopefully we'll get some more answers and ideas of what's going on by then.

Tuesday we were off to see the Genetic Doctor. He too has some concerns about James' blood results. However, James' ammonia levels were good. This is always the most important thing to look at when it comes to see if James is stable. On the other hand, his Protein levels were high, but they could not give an answer as to why. The high IgG levels could explain part of this. Being dehydrated could also explain this, (recall, we were skipping his night feed). But an important component of the protein levels was not tested, so they could not give a clear idea. Since they were unsure as to the cause of this it was felt that it would be a good idea to do some more blood work ... poor guy. Another reason for this was to have a look at his mineral levels again. The results of his blood work showed that some mineral levels were high and so the dietician was put to work to change James' formula. James has been upgraded from Neocate to Neocate Junior, just the same change as putting a child on formula designed for children over 12 months. He will continue to take his Pro-Phree formula, (this is a protein free formula with your iron, minerals and vitamins), but less then half the amount he was taking before as this was the formula that was throwing out his levels. In order to boost the calories that he needs they have added a new formula called Duocal, a formula containing fats and carbohydrates.

While at the Genetics Doctors we were told that our DNA finally made it across the border in January. We did this blood work last July! In September we were called because there was a hold up at the border ... after much hassle and struggle they finally got it through in January. So we were to expect the results in the next weeks. Wednesday the doctor called us back to tell us they got the results. All this does is confirm that the LPI diagnoses is correct. He did mention that with this in mind he does not think that the testing of James' lungs will tell us anything, as it is "simply" LPI related. But he also understands that it needs to be done, since it is still possible that reflux is taking an extra toll on his lungs.

Last night we went out for the night and came home around 11:30. The babysitter said James slept good. I started up his nighttime feed and a short time later he was crying and moaning again. We stopped his feed and are now once again going to try without feeds at night. This brings concern because we know his blood work was out of wack last time and so we can't short change him on what he gets in a day ... but it's rather hard to get everything in him during the day unless we hook him up continously, an idea that will not go over with James (nor his parent for that matter :). The funny thing is, we can feed him at nap time and he seldom wakes or coughs from that. So confusing!!

On a happier note. Last week James had a dietcian appointment and weighed in at 10.7kg (23lbs 9oz) ... much to our suprise as this was shortly after we had taken him off of nighttime feeds. Although nights can get tiring it is always a blessing to see James as a happy, content, normal two year old during the day. You simply would never guess what a huge medical chart he has just by looking at him.

In the meantime the girls have each taken their turns being sick, Marietta last week with tonsillitis which caused me to cancel my first OB appointment so I could take her in and get some medicine. Just my luck Rebecca was sick this week when I had my rescheduled OB appointment. She had fevers for a few days, first with no sign of anything else and then she began to have sore ears which I hoped she would get over on her own, but by Wednesday night it became apparent she needed to make a visit to the doctor also. My ultrasound was early enough Thursday morning that I left her home with Rob, with the hopes of getting her to the doctor after my ultrasound and before my actual OB appointment. But then they bumped up my appointment, so Rob ended up taking Rebecca and James with him on the bus and meeting me at the hospital. The kids love going on the city bus (this was Jame's first time, he just sat there and took everything in) so Rebecca survived the trip down, but by time I got her she was a hot, red faced, crying, sick little girl. She managed to sit through my Dietician appointment (which they added on to my OB appointment after reveiwing my blood sugar levels) with tears running down her cheeks. We got her home and in bed and took her to the doctor after a long nap. The doctor never specified exactly what she had, besides a very red throat, tongue and cheeks (she called it the strawberry tongue, whatever that means) and both ears infected. A prescription of Amoxicillin and we were on our way ... only to have her break out in a itchy red rash all over body after taking the medicine. So yesterday we finally got another prescription for her and she's on the mend now.

My OB appointment went fine. The ultrasound showed everything is good, blood pressure was fine ... nothing to worry about ... not that I expected there to be. They were concerned about my blood sugar levels, (should have left the book at home then they would never have known :) and sent me off to see the dietician. They have a completely different approach her then when I was in London. In London they declared I had Gestational Diabetes, went over a diet I should follow and that was it. No blood sugar tests, follow up blood work or even followup dietician appointments ... just checked the urine before each visit. Here they said I could leave my diet for now, cutting out the obvious sugar items like cakes and treats and all those yummy things. My levels were too high after fasting (first thing in the morning), which I know is because I eat all evening long. They mentioned they'd like to see my daytime ones come down a bit, but according to my records they're in a fine area. Here they also find it necessary to prick yourself 3 times a day and monitor your levels. When they found out that I had no money for that kind of stuff they supplied me with yet another new machine and some sample strips and declared I could just do the pricking 3 days of the week. Even so, the strips they gave would only last me a few weeks. As much as I like my sugar ... it will be cheaper for me to be stricter on my diet and forgot the constant testing. I believe they are concerned because these higher levels are showing up early in the pregnancy.

So phew ... big long update is done. It's much easier to stay on top of this and do "short" (if you can call them that :) updates!!

Sledding

It's so nice when the kids are easily amused. They're just so excited to actually have snow, and they love playing in it, especially Rebecca. They've taken their turns being sick the last week, but when feeling well they're out on the front hill sledding or in the backyard playing in their fort. I guess there is some advantage to having a hill in front of the house ... it's not very big, but it keeps the kids happy. I've been wanting to take them out sledding, but between kids being sick and weekends being so cold ... we just haven't gotten that far yet. I find -10 to -15 just a little too cold for James to be outside for a long period of time, especially since he can't tell me if he's cold ... so I can't be bothered to bundle them up and drag them over to a place that has a hill just to find out they're cold after a few runs. We'll have to try get out there with just the girls sometime ... altho I think James loves sledding more then the girls. But hey, as long as I don't take them out to a real hill ... they'll be happy with our little "hill".

James quickly picked up a new word the first day as he watch Rebecca from the window ... "wee" and the following day when he got his chance to try it out he had another new word: "go, go". The girls just weren't fast enough for him :)