One Year Ago

One year ago I sent out my first e-mail regarding James.
One year ago we had just arrived home from our first of many hospital stays.
One year ago we had no idea what a long year we had ahead of us.
One year ago ...

It sure seems like more then a year ago. As I look at pictures of our little guy's first hospital stay I'm reminded of how much he has grown up in the last year. Iwas also reminded of that yesterday when I happened to pass by the playroom in the hospital, and with a few minutes to spare before meeting Rob, we stopped to play. It was neat to see how James' play habits have changed since the last time he spent time in the playroom. His last two hospital stays were spent in isolation, so he has not been in there since the end of August. But his memory is good, because he quickly became concerned: "uh-oh, uh-oh", while pointing: they had rearranged the room and moved things around. But not to worry, he had no trouble finding his favourite toys ... his ride-on car that he flies down the ramp on (at a much faster and more carefree pace then previously) and the train table.

I was really struck by how much he's grown up and how thankful I can be for how healthy he is all things considering ... which the doctor was also impressed with yesterday when he checked him over and pointed out that he has the appropriate fat and muscles for his size and looks healthy. As we go through each stage and each new battle it's so easy to forget what the past held. I'm glad for the old e-mails and blog to refresh my memory ... altho nothing can stop me from remember how sick he seemed the first visits to the hospital and how he cried and cried and cried for hours and hours and hours. How I walked and walked and walked and tried everything ... including crying myself. It makes me feel like crying just thinking about it. What pain he must have been in! I want to cry even more when I realize how much damage we did to our little guy from the time we realized something was wrong to the time we found out the diagnosis. We did all the things we shouldn't have, without realizing it. We put him on high calorie foods and formulas ... all of them equally high protein ... and we tried to pump this stuff into him so he would gain weight. He was already so sick because of too much protein and we made it so much worse ... no wonder he cried and cried and cried. Poor guy!! If we had known sooner there is a very high chance he would not have colitis now ... all the signs of colitis showed up after we started pumping the high calorie formulas into him. Whenever I think about it I want to pick him up and hug him and tell him how sorry I am. I know ... we didn't do it on purpose, we couldn't have know ... but oh, if only we had.

But our little trooper has come through this year looking healthy and like a typical two year old. Although he will have to deal with LPI for the rest of his life, we continue to remain thankful that it was not cancer that was found. We also continue to pray that as the year moves forward and the puzzle pieces continue to fall into place, that the road will become easier. God has given us much to deal with, but he has also given us the strength to cope and to remain focused on Him. He is our refuge. He does shield us from despair. For this we give thanks and praise, and that He also provides some friends and family to share a portion of this burden for us and with us.

GI Appointment

Todays' visit to the GI Doctor went much as I expected, not really telling us anything new since most of that was worked out last week. The one thing I did learn from this visit is that they are having their "Meeting of the Minds" this afternoon. I see our pediatrician on Tuesday, so we'll see if anything comes of that.

The results of the endoscopy showed that James has some mild reflux related esophagitis. It is interesting to note that we waited 6 months for this test. It was originally booked in November at which time it was cancelled because of James' continuous unexplained fevers. At that time they also told us that having the endoscopy done would not help us to figure out what the cause of the fevers were and so they felt no reason to put him on the fast-track list. I feel they were wrong here. If this test had been done in November we would have known that James shows signs of esophagitis. For the past three months we have been going through a rollercoaster of trying to figure out his fevers, runny nose, and coughing and unstability. In November we had no idea that James even showed any signs or possibilities of having reflux, it was an unheard of thought. Had we known he had reflux related esophagitis we would have sooner been able to pinpoint some of the reasons for James' unstability . It took us until February to put together that he had "silent" reflux ... by closely monitoring his symptoms, which had been getting worse and worse up until then. If they had know he had reflux they would have sooner been able to question whether his lung issues - his coughing and gagging - were related to the reflux issues. But this is neither here nor there now and we must remain thankful that after one year the puzzle continues to slowly be put together to help our boy grow healthy and strong.

The PH Probe Test also indicated that James has acid coming up throughout the day. Bear in mind that James had a good day the day of the test (coughing episode wise), as well he did not touch any solids. I was surprised that we got any results at all out of this test. They also said that they did not see any connection with his coughing (he only had two short episodes, which seemed more from discomfort then like his normal episodes) and reflux.

One thing I did get out of the visit was that I can increase the amount of probiotic we are giving James. I was unsure of how much to give him, but he advised that instead of just giving it once a day I can give it twice a day. It's really hard to say if this has helped any, there have been too many things happening to tell us.

A Better Week

Well I'm thankful to say that this week has gone by much quieter and smoother ... I can even say it was rather productive.

We immediately took James off the antibiotic he was taking last week and first we seen our little boy come back again, then the fevers disappeared, and finally the rash went away, next the runny nose and cough came back. Already the following day James was more himself again, content and happy, playing nicely for a good part of the day. He did still get a fever later that day which brought him down again, but we could see improvement. By Saturday James was James again, the sparkle was back in his eyes, he was chattering and "talking" again and we didn't see anymore fevers that day either. The rash slowly disappeared and by Sunday morning was gone. The best part of all is that since Sunday I've finally been able to get some sleep again. He still usually wakes/cries/calls at least once a night, but it's just to make sure I'm still around ... no more unhappy, feverish, unwell, "owees", etc.

So on Monday we had to start him on his new antibiotics (two this time), something I really didn't want to do because we finally were seeing some real stools and it would sure be nice to get the formula issues sorted out. But on Monday we also seen the clear runny nose back and heard that phlegmy cough again, so even though he reacted to the last antibiotic it was still helping. He seems to be tolerating this round of antibiotics well, except for the normal stool problems that comes with antibitoics ... but he's mostly happy and content.

We can also see now that the Losec (reflux med.) does seem to be helping and that it was the other factors (infection & medicine reaction likely) that were causing his nighttime disturbances, coughing fits, etc. Since last Friday he's been doing well at nights and only seems to wake/cry because he's insecure ... or so it seems. Hopefully we continue to see this pattern and the Losec remains effective so that we do not have to add anymore medications to keep his reflux/aspiration under control.

Tomorrow we have to go see the GI Doctor. I don't think this appointment will bring any further changes, especially now that we think the Losec is helping the reflux ... but we'll see what information we can gather this time.

I enjoyed a week of catching up - paperwork, cleaning, baking, etc. Instead of having my regular cleaning done this week we tackled the last of my spring cleaning. The kitchen was the only room left that needed a good scrubbing, between the two of us it was done in no time. Also, on Monday and today I dropped Rebecca and James off at the sitters for the morning. This had a dual purpose ... quiet time for me to get some stuff accomplished at home as well as training time for the sitter. I have come to realize (especially with the upcoming baby) that it is not good for just Rob and I to know how to feed and take care of James ... so I've had to part with my "baby" and allow someone else to enjoy his presence for a while. This gives the sitter a chance to learn how to do James' tube feeds and still have me within phone (or computer) reach to answer any issues that arise. I drop them off in the morning while James is still having his morning feed and pick them up shortly after she has gotten his lunch feed started. So far it seems to be going well. James has been enjoying these outtings as well and cries when I come to get him. It is not often he gets left behind as he is usually the one with the appointments, but as the weeks go by he'll be getting his turn more often.

And ... spring is here!!! We've have some lovely days and lots more to come I'm sure.

Here's a picture of something new James has taken. He's been wanting to get his hands on the keyboard for some time. I finally gave in and started him on the same program the girls started on at his age. He's so happy to be able to be just like everyone else.






And Marietta is sporting a new hairstyle. She's been asking for a while to have it chopped off ... I finally gave in, and must say I like it, altho the pictures doesn't do it much justice.

MAC Day

So after about two hours of sleep last night it was off for another Mac Day. James had a rough night of fevers, rapid breathing and then "owee" (pointing to tummy and chest). He was quiet adamant about the "owee" and I felt awful not knowing what was really "owee" or how to help. Rob spent some time with him early in the morning so I could at least get an hour of sleep before the alarm went off.

James awoke in the morning to confront us with a new dilemma - he had an obvious rash on his face, neck and head as well as a speckled version of it over the trunk of his body. And of course my mind runs through all the questions of what it could be ... something contagious? from the medicine? reaction to something? does this have anything to do with how he's been acting? the fevers? I also did not have a whole lot of time to decide what to do with him. He seemed relatively fine, so after checking with his babysitter for the day, who said it was fine to bring him, we were off.

I spent the morning at Mac for another ultrasound, OB appointment and Dietician appointment. They did another ultrasound because last time they were unable to get all the measurements they needed. For the rest everything is going fine, blood pressure and sugar levels are fine. I'm feeling somewhat better (again ... hopefully it will stay that way this time). I learned yet another new thing about the body again today ... it's just never ending, what an amazing creation the body is. I learned about the S I Joint. The sacroiliac joint (SI joint) is one of two joints in your pelvis that connect the tailbone and the large pelvic bone. This joint does not move much, but it is critical to transferring the load of your upper body to your lower body ... as I have experienced in this pregnancy. I've had troubles with this joint in previous pregnancies (just never knew that was what it was called), but not until later in the pregnancy and not near as bad. Right now I am experiencing pain in the joint area (buttocks, tailbone) when lying down and it that makes it hard and painful to get up after laying down. Once I get past the pain to get myself standing my lower body cannot handle the weight and doesn't want to function at first. Sometimes I also have trouble walking down stairs, where it seems my legs do not want to do what they're suppose to do. There isn't much that can be done during pregnancy for this, heat and ice and massage ... 20 more weeks to go! The joys of being pregnant. What an interesting and complex system our bodies is.

So after spending the morning at Mac it was back to the sitters to pick up James for his appointment with the Lung Specialist ... and off to Mac again. By this time his rash had gotten worse and had spread more obviously throughout his body. The doctor looked at him and believes that this is from the antibiotics. He said that it is possible to get a delayed reaction 7-10 days after starting an antibiotic ... poor guy, wonder if this is what's been making him so miserable lately? So we are to stop the antibiotic immediately; we will wait out the weekend and see if he gets betters. On Monday if the rash settles we are suppose to start two new antibiotics, the combination of these two should fight off the bacteria.

Because James has generalized bronchitis (or chronic bronchitis) he will need to go back on his orange puffers for a more permanant basis in order to try calm the irritation and inflammation. The Lung Specialist will continue to monitor James by x-rays, starting with another one taken today, and the upcoming CT Scan

We discussed James' reflux as well, but are leaving things as is right now. He said he would like to do things systematically, if we throw too much in the equation (like we don't have enough) it gets too confusing. So we need to start with getting rid of the bacteria. What I didn't ask is how we do this if he continues to have aspiration. If food continues to get in the lungs how can we keep the bacteria away? As well he advised that in order to truly know if the Losec is working we should give it about 3-6 months and see what happens over that period. It is possible that he could just need a higher dose of Losec. The other reason for not right away putting him on a medication that reduces reguritation is because this medication helps empty the stomach ... and in so doing, a common side effect is diarrhea - like we aren't dealing with that enough right now. He said that GI would determine if James should be put on this and that it will likely be discussed at the "Meeting of Minds". We see GI next week, so we'll wait for the information we get from there.

So in the meantime, if nothing else is done in the reflux area I guess I can expect more sleepless nights ... and here I thought that we'd were moving closer to getting something to help with that area.

I've been listening to the Mac Kid's Radiothon (for you locals: FM 102.9, AM 820, AM1150) the last couple days. I've never listed before but I know that over a year ago I would have found it "interesting" but as I listen to the stories I feel I'm so often close to tears because I can imagine and feel all that goes on behind the scenes. It all sounds so simple until you're confronted with it yourself. It also has made me realize how fortunate we are, there are so many kids that have to go through far more then they ever should for their years. Although most of the people who speak on the show are positive and uplifting it also reminds me of the comfort we have in each day again as we open our Bible and realize where our strength and hope comes from. How good and necessary it is that each Sunday we begin the service professing that our help is in the Name of the LORD!

Some Answers ... We Hope

So this morning I managed to track down our big-word using Lung Specialist and I think I followed some of what he had to say ... hopefully enough to make some sense out of what is going on. Guess it helps that I've had time to research some of the different concepts and so some of these words are not totally foreign ... and I can guess at the rest of them.

The Lung Specialist firmly believes that James' reoccurring fevers, cough, clear running nose, general irritability and hospitalizations are related to his lungs. The broncoscopy has shown them two things: chronic aspiration and recurrent infections. It is his belief that the first is likely causing the second. They found food and junk in his lungs as well as his airways being inflammed.

He advised that if we do not want to we do not have to carry on with the CT Scan and he can follow James with x-rays, but the CT Scan can give them a clearer picture as to the extent of the damage and inflammation in his lungs. As well, it would be good just to have on record for comparison in the future. We will move forward with the CT Scan, it is booked now and any little piece of information we can get to better treat this problem will be helpful ... especially if this is what has cause his instability for over half a year now.

So if James' lungs are indeed the problem then how do we fix the problem. James has now been on the antibiotic for his bronchial bacteria for a week and we have not seen any improvement, at first we even seen him get worse, and then he began to develop fevers. This giving us the indication that the antibiotics were either not working and/or we are dealing with two different things. I asked the doctor how we know his lungs are better (without doing another broncoscopy) and that the antibiotic is working. He said that you treat him and you see improvement, if you don't you try something different. So it looks like we have to try something different and tomorrow we go in for another appointment to determine what "different" means. He suggested we may need to change the antibiotic, or add another antibiotic to the equation ... oh his poor tummy and bum. We may have to look at inhalers, I'm hoping he means something different because what he's has now has been useless.

As well, James is currently taking Losec for his reflux. Losec reduces acid but it does not reduce regurgitation in the stomach, so it sounds like we'll be needed to add another medication to help in this area. The Lung Specialist did not have any results on the PH Probe test as this goes to the GI department, but the test wasn't really necessary (poor guy) since the broncoscopy clearly shows reflux/aspiration. He did mention that the endoscopy showed a little bit of esophagitis. After they did the endoscopy we were told they did not find anything significant, but we have an appointment next week to clear up those questions.

The other question we had was regarding James' IgG (immunoglobin) levels. When the Lung Specialist last spoke to Rob he said their were no auto immune disorders ... so what do the increased levels mean? He advised that they were looking for low levels, which would indicate a immune issue, but in this case James' levels were double what they should be. This happens when the body has an infection or trauma and so this would fall in line with the rest of the situation.

Tomorrow we go off for another appointment to see what changes are going to be made. I'm not sure why he needed to see James, as his lungs have always been clear when they listen (one of the reasons they never jumped on it as an issue) ... but I guess it's more for officialness.

This of course doesn't answer the diarrhea problems. Some of this is almost guaranteed to be from the antibiotics, but we were having trouble before that already ... just not near as bad. One improvement we did see from the most recent formula change is that it didn't make his bum so sore and the yeast settled down some ... but the diarrhea and mucas has gotten worse. Last night I gave up on his current formula and put him back on his old original formula. I'm hoping we'll at least get some indication as to whether it's indeed a formula problem, but the longer he's on antibiotics the longer it's going to take to get a clearer answer.

Our pediatrician called shortly after I talked to the Lung Specialist. By that time I had gotten my main answers, but we discussed everything, as well as James' ear tugging. She is going to go ahead and send him off to the specialist, just as I figured she would. She figured if there is anything we can do to ease his discomfort or help take questions out of the equation it would probably be a good idea ... and we can always cancel if he clears up. She also told me that they are having a "Meeting of the Minds" with all of James' main doctors sometime in the next couple weeks to make sure they are all on the same wavelength and aren't missing anything. It is comforting to know that this extra effort is taking to "coordinate" his care.

In the meantime, the fevers, crankiness and clinging have continued, although today was a bit better ... or maybe I've just gotten used to having him sit on my lap all day long! :)

The Neverending Questions

March Break is over and Marietta is back in school, with that comes routine again. The break was nice, but the routine is welcomed. The kids finished off the week with some small things like a trip to the library, spending their hard earned money at Dollarama, watching the bird show at the mall/plaza and then off to Grandpa and Grandma's for the weekend.

Well we can say that this is the longest stretch in the past year that James has managed to stay out of the hospital ... 3 months now. February was a good month, we were seeing some signs of trouble, but he was happy and healthy looking, active and busy with no more fevers. March seemed to bring in a new tone and it's slowly been downhill. And it just starts the ball rolling again for all those questions we never seem to get any answers to.

The sign of trouble that we seen during February was his stools, once again they were mucasy with occasional blood. So we have changed his formula, but the question of course remains of whether this is truly the problem. We are hoping. How long should it take to get an answer? Usually in a week or so you can begin to see signs of improvement, but unfortunately this time he's on antibiotics, which adds the next question. The last few days have been the worst, back to 6 dirty diarrhea diapers a day, mostly with mucas. Does this give us a negative answer? Not really since we have no way of knowing if it's the antibiotic. Although the dietician said to call after the weekend if I was having trouble, I'm thinking we still need to stick it out a bit longer ... but he's not done the antibiotics until next Wednesday.

I started James on a probiotic on Saturday. Didn't know it would be so confusing to figure out what to buy ... but I picked one out and are giving it a try. We're starting on a low dose and will slowly work it up. With everything else going on in his little body right now I'm not sure if we'll be able to tell the effect of it ... but they say it can't hurt, so no use waiting until things settle down.

We have begun to see fevers again, usually in the late afternoon and wee hours of the morning. What brought these on? James has been miserable for the last two weeks, clingy and crying, unhappy and not know what to do with himself ... this makes us think that whatever brought on the fevers has been adding up for some time. Yesterday he threw up out of the blue, no sign it was coming (usually we get a certain cry before hand) ... what's this related to?

James has learned a new word "ow" ... actually he already knew the word, he just seems to know how to apply it now. You would think this would help. He uses the word during the middle of the night when he's crying ... "ow" and points to his g-tube most of the time, but sometimes to his chest. He even used this word about 3 or 4 minutes before he threw up yesterday and that time pointed to his stomach. So what is he trying to tell me? Is his g-tube bothering him? it looks really good right now. Is it a general way of saying his stomach hurts? if so, is it a reaction to the antibiotic which can cause upset stomach?

One place he has never pointed when he says "ow" is to his ears ... but yet lately he's been pulling and digging in his ears to the point where he draws blood because he scratches it. He does it when he's half asleep and he does it during the day ... sometimes you can even hear water when he does it. Suddenly a new lightbulb goes on. He did this all the time when he was little and everytime I went to the doctor I asked her to check his ears and they were always fine, no infection, no eczema. But .... we now know that for the last few months he's had fluid behind his ears ... so how long has he had this problem? Is this fluid causing more trouble then we thought? Is this part of the reason he wakes at nights ... a common problem with fluid behind the ears. Just a few more questions to put into the equation. Today the dietician and Occupational Therapist were down and said that the waiting list is long to get in for tubes if they are needed and that we might want to start now and just pull out if it clears out in the summer ... it's next to impossible he would get them in before the warm weather. We were originally not in any hurry to push through another procedure, but maybe we'll have to rethink that idea.

And to add more questions ... we wonder how effective the Losec (reflux medication) is since we didn't see the same immediate effect when we put him back on it ... he was still waking during the nights. We haven't heard back from the Probe test yet to see what it said. Or was it effective and we were already starting into other problems that kept him waking up?

And the questions just carry on ... so please anyone, feel free to answer them for us!! :)

The good news is he continues to gain weight at a slow but good pace. He weighed in today at 10.82 kg (23lbs 13oz) and measured at 86cm (34 inches).

Flexible Flat Foot and Probiotics

Today we were off to see the orthopedic surgeon with regards to James' feet. Since James learned to walk he has walked on the inside of his feet. At first he walked with his toes pointed outwards, but with time they slowly turned inwards, yet he continues to walks on the inside of his feet. You can see this trend start at his knees, where he's knock-kneed causing his lower leg to be on an outward angle. You can get a few diagrams of what I'm trying to say at the following link. Our pediatrician had advised that this would likely get better on it's own, but wanted it checked just to make sure.

We were advised that James has what is called flexible flat feet. This is actually not an uncommon problem and many children have some decree of flat feet. This means that the arches of James' feet have not (yet) developed properly. The word flexible means that James' feet are flat when standing , but when not standing there is an arch to his feet (versus rigid flat feet, which would be flat all the time and painful, requiring surgery). They have advised that it is likely that this will correct itself within the next two years; they will continue to monitor him to make sure that it is and that he isn't developing any complications. If it doesn't begin to correct on it's own or it becomes painful then he may be required to wear some sort of arch support or orthotic shoes.

In the meantime we have to buy shoes with mid-support, flexibility in the toe area but firmness in the arch area ... she said they don't need to be anything fancy or expensive, they just have to have that extra support in the middle. Guess we won't be finding second hand shoes as easily for this boy. As well, barefeet is good, it helps strength the arch and muscles. So he can go without shoes at home ... just when he wears shoes we have to make sure they have proper support.

While at the hospital today I also spoke to James' dietician. She advised that there isn't really any rhyme or reason to why they changed his formula as they did ... just like there never seems to be a rhyme or reason (that we can figure out) to James. They just figured that the problems started when adding the Duocal formula, so they would take that formula out and rework the formula with something different. It all balances out mineral, calorie, vitamin wise ... just trying it a different way. We'll give this a try for a month or so and hope things settled down. At this point we are guessing that the formula is the problem, but can't say for sure. So if we're still having trouble after trying this, then we're going to go back to the original formula and see if things balance out ... that will help us better determine if it's truly the formula or something else going on in his little body.

At the same time, I also discussed putting James on a probiotic to help control his yeast infections, especially now that he's on an antibiotic again. I haven't done all my research on probiotics yet, so I can't say too much about them. I know that they help build up and maintain the organisms in the body and are especially useful when on antibiotic which kill all organisms, including the good ones. The little time I did have to research on probiotics I did read a couple times that the studies being done suggest that probiotics may be helpful for those who have colitits. Our dietician felt it wouldn't harm to give it a try; she was going to check and confirm with our GI and Genetic Doctors and then call me with what they suggested would work best.

March Break and More Medical Stuff

Well March Break started on Friday, so we've been trying to relax and enjoy the time off a bit. I'm enjoying sleeping in anyways, especially since I'm usually awake with James at nights for a bit. The lack of schedule isn't good for James, but it's nice for a week anyways.

James has not been himself lately. He's clingy and cantankerous, one minute busy doing something, the next wanting to be held; he can't make up his mind on anything and since he can't talk he just gets us all confused and frustrated. As well he's up at nights, sometimes coughing, occasional gagging, sometimes yanking on his ears, other times with no sign of anything being wrong ... just that he wants you to come and comfort him. His coughing seems to have come back since the broncoscopy, not sure if this is normal.

Over a month ago we changed James' formula. At the same time we also tried to give him his entire feed during the day because we were not giving him night feeds (thinking the night feed was causing the trouble). This seemed to cause problems and so we gave up on that idea. But the problems continued. His stools were inconsistent, sometimes 3 a day, sometime 6 a day, sometimes thicker, mostly thin and seperated. He's back to having mucas in his stools and we've seen blood again as well. We slowed down his feeds once again and now it takes 2 hours to feed him a 1o ounce "meal", seems like he's always hooked up. I finally sat down and looked at my lack of notes over the last month (I go through stages where I take lots and then get sick of it, then regret it because I have no idea what's been going on ... I'm in the regret stage now) and began to think that maybe the formula change was the problem and not our overfeeding him. So today I contacted the dietician in charge of his formula changes and she got back to us with a new formula mixture again. They have taken the Duocal out of his diet and changed it to Polycose. Duocal provides fat and carbohydrates, whereas Polycose is just extra carbohydrates. I'm not sure why they chose this change as I did not speak with the dietician. James has previously used Polycose and I remember them mentioned that we couldn't use too much because it can cause diahrea, so it will be interesting to see how this helps, if it does.

I left a message for the lung specialist today regarding the blood work he had done on James that showed some things out of line. He called back and spoke to Rob, so not all my questions are answered here either as Rob doesn't always think of the same questions that I do, but a few things are answered. He basically called back to say there was nothing to be concerned about, he did not see an amino acid deficiency or any auto immune issues. This is different then what the pediatrician and genetic doctor thought when they looked at the results. I'll have to probe further into that one yet, but at this point he obviously doesn't think there is anything to be too concerned about.

He also advised that they found bronchial bacteria in both of James' lungs. Both lungs had yellow mucas and phlegm in them. I tried to research what exactly this means, but there must be a more techinical name for it because I couldn't find anything. So I'll have to ask further on that one too. But for the time being we do know that this means James has to take an antibiotic for 2 weeks. More fun to add to our schedule since this antibiotic has to be taken 1 hour after or 1 hour before a "meal". Well in James' case there isn't always 2 hour between "meals". So this means setting a timer after a meal to remember to give him the medicine on time so that I don't have to delay the next feed. It also means I have to make sure that we have supper on time so that he's done that feed by 7:30, so I can give him his medicine at 8:30 and feed him again at 9:30 so he's done at 11:30 so that I can go to bed (on time?). If I'm not on the ball I'll have to stay up even later to wait for him to finish his late feed. This antibiotic will also throw another loop in the never ending puzzle since it will cause his yeast to act up and make his bottom more sore, so we won't know if the change in formula is helping. But hey, at least it's only for 2 weeks.

Marietta finally went for her ultrasound and x-ray on her finger today ... a little late, seeing as the bumps disappeared about a week ago. I decided to still take her because her finger is still swollen and she keeps saying she can feel the one bump still, although neither Rob nor I can feel it. We'll see what the results say, but I know the ultrasound tech didn't find anything since she called the doctor in to make sure she had checked good. She too notice there was swelling, but she commented to the doctor that she couldn't find any pockets and the tendons look good. Hopefully the swelling will disappear just like the bumps and we'll be done with it.

The kids have been having fun with their holidays. Nothing special, just a lack of schedule and a more relaxed pace. We enjoyed an indoor picnic and made a fort in their bedroom for them to sleep in. They went to Early Years Gym Day on Friday and hope to go to Grandpa and Grandma's for a few days yet. Rebecca had her birthday party on Saturday. She chose to have my family down for the evening. We all went swimming and then afterwards came down for cake, presents and food. It was a nice evening together.


5 o'clock for 5 years

Chips and ketchup ... two things that James will eat

22 Weeks to Go!!

Yup, I'm counting down already!! :) I usually start counting down around week 35 :) Never have liked being pregnant, even when I had easy pregnancies.

Since everyone keeps asking how the pregnancy is going figured I better update on that too. All is well, no reason for concerns. I spoke to soon about feeling better, but now we're on a more rocky road, some days good, some not-so-good ... but at least they're not all not-so-good anymore. Lately the tired gene has kicked in. I've been very thankful that I have not been tired (exhausted would be a better word) like my other pregnancies, but I can definitely say I've been more tired lately and I better learn to go to bed earlier or I'm gonna hit exhaustion.

So I had an ultrasound and OB appointment today. Blood pressure and sugar levels have been fine lately. Ultrasound showed baby's size is good and placenta is in a good position. One thing that they did pick up on the ultrasound is that the baby's kidney(s? ... I'm not sure if just one or both) was on the large size. This is no cause for alarm, but on a personal level it does send us small little warning bells. I asked if they could see the spleen, but he said they couldn't on such an ultrasound. Enlarged liver and spleens are a symptom of LPI and the kidney's have to be watched for kidney failure.

For me this was just a little bit of a wakeup call. I can't say I've put much, if any, thought into having another child with LPI, but this made me realize that maybe I should mentally prepare myself a bit more for this possibility.

I spoke with our Genetic Doctor this afternoon. He said that the enlarged kidney really wouldn't be any sort of way of saying that the baby has LPI and could mean nothing or even balance out in future ultrasounds. That wasn't the reason I was calling him tho. I wanted to talk to him about Cord Banking. I remember hearing about it before, but we never put much thought into it. I came across some readings on it recently and began to wonder if this was something we should consider, especially in light of recent blood work showing some of James immunology to be a little out of line. Banked cord blood is more useful in cancer cases, but can also be used in some genetic disorders and immune system disorders (that was the one that prompted us to wonder). We had previous rejected the idea of prenatal screening, but upon seeing the cost just to register for cord banking (and then yearly storage fees) we thought that screening might give us a better idea of if we needed to bank the blood. So I discussed both of these with him. He felt that Cord Banking would not help in our situation, his only hesitation was that if this child is completely LPI free (meaning not a carrier either) then the banked cord blood could possibly help James down the line. He also pointed out that if the child has an inheritted disorder it's possible the blood is already "contaminated" (can't think of a better word right now) and would not be of any use anyways. In the end our decision was made easy when we were told that when doing prenatal screening there is a risk of 1 in 200 that you can lose the child. So we won't be doing any screening and unless our Genetic Doctor thinks of a good reason that the Cord Banking would be worthwhile I think we'll leave that idea behind too.

James did relatively well today. He didn't start off very good this morning. His was cranky and clingy and I made it worse because I didn't have time for him. I figured once we got some food in him (he had only had 2 small feeds yesterday so he was a hungry boy) and got out of the house he'd cheer up. It seemed to work because when I dropped him off at the sitters the sparkle came back in his eyes as he ran after Rebecca to go play, which made me feel better, especially considering it was not a place he's familiar with. He was so tired when I picked him up that he dozed off a few seconds down the road. This afternoon he had a bit of a fever and his breathing was rapid, but tylenol seemed to level it out and he carried on, just need some extra snuggles and one on one time.

We're home!!

The good news is that James had his endoscopy and broncoscopy done today and that we're home tonight and I get to sleep in my own bed ... and I'm going there nice and early ... ahhh sleep ...zzzz!! The bad news is that James' g-tube did not get changed today as it was suppose to.

We were up and going on time today since we had to have Marietta at the ortho/dentist by 8:30, the 2nd time this week due to her appliance breaking. James did well today, considering his tests were not until 2pm and he could not eat before or afterwards. He was allowed 8oz of water this morning before 10am, but by 10:30 I had a cranky, tired looking boy who had been asking for crackers since 9:30am ... when James' ask for food you know he's good and hungry. Thankfully Barney's a pretty good entertainer and he got to watch a bit of extra TV today.

James was tired enough that he fell asleep on the way there, a little 10 minute powernap. When he woke he knew right away where he was and asked for Daddy. The nap and the playroom kept him entertained for a while but then we ended up sitting in an empty hallway with nothing to do for an hour before his procedure. By that time he was tired, miserable, hungry and thirsty ... lots of fun. When they came to get him he was all eager to go but stopped dead in his tracks when he stepped into the room, one look and he knew what was going on ... the tears came quickly. To make it worse they decided that it was best to put him down via IV instead of using the mask because of his reflux ... a more painful and much slower process ... poor guy.

Just before the procedure I found out that they were not planning to do the g-tube ... or should I say they had no idea about it. I was not a happy camper and they got to hear about it too. The g-tube change was listed on the pre-op forms as well as on the consent form for the endoscopy, if they could read they would have questioned it sooner and looked into it. They said they would proceed with the other tests and track down surgery and see what could be done. They came back then to say that their was no surgeon available and that the surgeons nurse tried to blame it on the GI department saying that they had not told her the date he was going to be sedate. I had spoken to her TWICE to confirm that everything was a go for today ... needless to say she's gonna be getting an earful tomorrow!!!!!!

Let me point out this is the 2nd time that this has happened. In November when James was originally booked for his endoscopy (that got cancelled due to fevers) it was also realized that surgery was not prepared to do the g-tube change. In the end it didn't matter since the procedure was cancelled ... but hence the reason I checked twice this time to make sure it was a go. So now we get to hear all the promises again ... he has a CT Scan next month they will make sure it's done then. Looks like I'll have to call everyday for a week before hand so that they get so annoyed they don't dare not show up. Yup, I'm a little ticked!!

James came out of sedation typical James style ... crying and screaming, throwing himself all over, crawling out of my arms and just inconsoleable. They were not busy in the recovery room this time and so I had three nurses hoovering over him try to figure out how to calm him down ... even tho I kept telling them he does this every time (why do they think I hate going through this time and again??). They gave him some gravol but it didn't help, after about 45 minutes of this and no improvement they gave him some morphine and 5 minutes later he was peacefully asleep. The tests were done by putting a flexible tube down his throat, which makes it raw and sore, so you can imagine how sore his throat would be after all the crying, it sure sounded raw and sore. Once he settled down his SAT (oxygen) levels came back up into normal range and he did fine. They woke him an hour later to check him over and he was drowsy but back to normal. He was transferred back to the Same-Day Surgery department where we had to hang around another hour just to make sure all was well and then they sent us home.

James has not been sleeping as good as we hoped lately. He is not having coughing, gagging or vomitting fits anymore, but he has been waking during the night. He also seems to have a slight cold so at this point we're hoping it's just his ears waking him. So I'm hoping he'll sleep good tonight because I'm good and tired. Gotta be up and going on time again tomorrow since I have to make a visit to Mac for an ultrasound and OB appointment. We started James on a feed of pedialyte when we got home and now he's having 3/4 pedialyte and 1/4 formula. I hate to desert him tomorrow morning, but he seems to be tolerating his feeds so far, so hopefully I can give him a half decent feed before I go tomorrow.

But ... it's not to early anymore ... but not so late yet either ... so I better get my butt off to bed before it gets late again.

Rebecca's 5th Birthday

Today our dear Rebecca celebrated her 5th birthday. For her birthday Rebecca had chosen to go swimming instead of having kids over for a birthday party. It was decided that we would go swimming on Saturday, the same day family was coming down to celebrate. She also asked if she could go to Early Years on her birthday. Seeing as it has been a very long time since I have taken them, I didn't have too much problem agreeing to this. We spent most of the morning at the Early Years Centre. It's been a while since we had gone and it was neat to see the change in James since the last time we had been. He had lots of fun exploring.

Rebecca had requested cupcakes for her birthday cake. Mom liked that idea ... much easier then making a cake. We had fun together icing the cupcakes. Rebecca picked the colours to mix together and tried to guess what colour the combination would make. After we iced the cakes I gave her a few different kinds of sprinkles to put on top. The final touch was adding individual letter candles to each cupcake to spell Happy Birthday.





When Marietta arrived home from school Rebecca was dressed and ready to head outside to paint some snow. I filled squirt bottles with dyed water and away they went to see what they could design. They had never done this before, so they found it quite fascinating. It would have worked better on a warmer day as Rebecca found it quite hard to handle the bottles with her mittens on. I was suprised at how far they managed to get off of each little squirt bottle. I thought I'd have to refill them more, but it being cold they were ready to come in after finishing off the four colours.



Never to be left behind, James had to come outside and give it a try too. He couldn't actually squirt the bottle, but, as difficult as it was for him, he was content to carry one around and look like he was doing the same as the girls. This was the first time he had been outside to play since the freezing rain we got last Friday and he found it difficult walking and couldn't understand why he kept wiping out. But still, he refused to come back inside until everyone else was done.


Once done outside, it was time to eat the yummy cupcakes and then on to the next thing Rebecca had asked for. This item she had actually put on her wishlist as a present that she wanted. We usually get our eggs fresh from a farm and they are always brown. It is rare that we buy white eggs. Rebecca seems to think that if we buy white eggs we should also colour them (I let her try brown eggs once just to show her that they don't colour, or at least not very well). So on her wishlist she asked for white eggs that she could colour ... an easy child to please! :) So the girls spent some time colouring eggs while I prepared supper.




Grandma W. called after supper to wish Rebecca a Happy Birthday. James was rather disappointed that he did not get an opportunity to talk. He loves to listen on the phone and as soon as one of the kids gets to talk on the phone he thinks he gets to ... "talk, talk, talk" ... his way of asking for his turn.





After patiently waiting all day it was finally time to open presents. We hid the presents and then Rebecca ran around finding them and opening them. One present she opened and thought that it was headbands for her hair. We let her try them on to see how they would work as headbands ... what do you think??

Another Hearing Test

This morning we were off to Chedoke to have James' hearing rechecked. Yes, they even do appointments on Saturday ... works kinda nice since Rob is home, they aren't very busy, you get front row parking and it's free on Satruday.

In December they tested James' ears and his hearing was in normal range, but he had fluid behind his ears. So we had to bring him back today to see if the fluid went away on it's own. It had not. This is commonly known as Otitis Media with Effusion. James had not had any ear infections and at this time his hearing continues to test in the normal range. They have decided to give him another 2 months and then test again, with the hope that once the warmer weather comes it will clear up on it's own. If it has not cleared up at that time they will likely send him to an Ear, Nose, Throat Specialist.

Although this fluid does not seem to be effecting James at this time it is not healthy for the little bones in the middle ear to continually sit in fluid. Since James hearing it okay, it is assumed that this fluid is thin at this time, but it can suddenly change to a thicker substance, which will cause hearing troubles. The thin fluid can also make it so that what James is hearing is muffled, making it hard for him to learn to speak.

James is Back!!

Just our luck, James did not have a coughing/gag fit on Wednesday night. He was awake for about half an hour crying and whimpering. It is hard to say if this was reflux related or if he was just uncomfortable from the probe.

Thursday morning I made sure I got the hospital early enough to have the probe taken out before our Pre-Op(eration) appointment. James cried for a few minutes after they took the probe out, mostly because they had to peel the tape off his face. As soon as we left the room and I put him down the bounce was back in his step, the smile on his face, and off he went to push the elevator button, at the same time asking for Daddy. Ah ... our little boy was back!! :) James knows that hospital visits usually include a daddy visit at some point ... since he had not seen daddy before the appointment that meant daddy should come after. He was a bit upset when I told him there was no daddy and a little perplexed when he realized we were not going home yet. But after I checked in for the Pre-Op appointment I told him he could go play ... he went bouncing off to the playroom, feeling right at home.

I had hoped that having a Pre-Op appointment at 9am would mean that it wouldn't take 2 hours like the other ones I've had ... but no such luck. James was so excited to be back to himself that he was flying on a happy vibe all morning ... with an extra bounce in his step. He was quite happy waiting and colouring in the small hall that they make you sit in for 1-2 hours. Just when I was getting bored of my book and waiting Ingrid and Gerrit showed up to entertain me ... wish they had come earlier because as soon as they arrived we finally got called in to see the last person. (At a Pre-Op you visit with a Child Life Specialist ... they work more with the kids and explain procedures in simple language to the parents, we have been often enough that we just skip this process now. You see a Nurse who checks blood pressure and weight and goes over your form to make sure you filled it all in, gives you the details on what you can and cannot do before the procedure. Last you see the Anesthetist who goes over the medical issues, medications, etc.)

James was completely back to himself, even extra chattery and happy to the point I thought he'd never nap, but he did eventually. He even ate a bit more then normal, which was nice to see ... and back to his normal bedtime routine of taking forever to go to sleep. We have gotten him past the stage of us actually sleeping on the floor beside him, but he needs comfort and assurance that you are nearby, which means that I usually cling, clang, bang in the kitchen or make a phone call in the kitchen so he can see and hear me. Somewhat of an annoying habit that we are trying to get him out of ... I almost wish we could put a probe down his throat every night ... that sure worked nice! Mean mom I am! Poor guy :)

I received a call from the Anesthetist this morning. After the pre-op she had discussed James with the various doctors involved in the procedures and it was decide that they would like to reserve a bed for James for after the procedure. Due to his intersitital lung disease, they are concerned that the broncoscopy may cause his lungs to act up and so they want to make sure a bed is available for him to stay over night if he is not stable. He will likely be able to go home afterwards, but we have to come prepared to stay overnight.

James High Resolution CT Scan of his lungs has been scheduled for April 20. As long as his health stays the same his Pre-Op appointment will still be valid at that time, so we don't have to waste another morning going through that again. We started him back on his Losec (reflux) medication and have taken him off his night feeds for a couple nights to give it a chance to work.