Thursday, February 28, 2008

So Far, So Good

Well the weeks not over yet, but I just thought I'd send a quick post out to say that this week is going better then last.

Our last vomitting episode was Saturday and our last fever on Monday and his stools have been consistently good. (Resp rate still high, coughing still gone.) Monday was a rough start to the week, with fevers all day and him being inconsolable again, but Tuesday he was quite the opposite and even I was impressed with how good he was ... which meant I got to enjoy a nice long visit with Amy without trying to silence a complaining boy the whole time. The rest of the week he's been more his normal self ... not the happiest child on the planet, but endurable, no more fevers, no more vomits. If he remains stable we will attempt to reintroduce his old formula, something we'd like to try before we see the GI Doctor next week (yes, we got an appointment for next week already).

So that's the run-down ... bet you didn't know I could keep it that short!! :)

Saturday, February 23, 2008

Miserable Matthew

Matthew has been nicknamed Miserable Matthew before, but he sure worked hard this week to make sure that it rightfully suited him. The last couple days have been better (or maybe I've just accepted that I'm going to need to hold him more often), hopefully it will stay that way for I'm not sure how long I'll stay sane otherwis. I don't know how I ever survived through the Rebecca and James colic from sun-up to sun-down, at least Matthew is always in bed by 7pm.

So another week has ticked by and we haven't really made any progress in the Matthew puzzle. I'm not sure if we took a step back or just changed the puzzle pieces around a bit.

Vomitting has been introduced into the puzzle. The first episode being last Saturday night after he cried and was unhappy for a period of time in the evening (very, very, very odd for Matthew to be awake past 7pm). With another episode the next morning we thought he might possbily have developed a flu, but when the next time came we realized the inconsist pattern of the vomits likley meant we were dealing with something else. (If a flu should have been 24-48hrs straight and/or more frequently, not just here and there.) We were also dealing with the occasional low-grade fever (which he doesn't tolerate all that well).

We had a bit of a lull in the vomitting from Tuesday night to Friday morning, but if his attitude those days says anything then I much rather clean up vomit once or so a day and be done with it for if I thought he had been unhappy Sunday to Tuesday, he was absolutely the most miserable child on Wednesday and Thursday .... cry and cry, even when held, and hardly napping (altho being held would offer some short-term quiet/peace before he started again). After his Friday morning small vomit he was more toleratable again.

There's always a bright side to things ... his cough is gone, or mostly gone, he has it sometimes that he starts coughing while drinking his bottle, but I almost think that's a lack of concentration on his part (dozing off while drinking) that it's almost like a gag reflex cough, other then that rarely hear a cough ... yah!!! Resp. Rate is still in the 55-65 bpm ... high, but better then initially. His stools continue to be good. Unfortuntaely the rash is still there. It has improved and was doing pretty good, to the point we thought that this too could be attributed to the formula as it was slowly diminishing with the new formula ... but the last couple days we've seen some brigher, short term flare ups again.

So it was back to the Pediatrician to ask the "now what" question. We were suppose to try put him back on his old formula at the end of this week, but as his baseline on the Alimentum is not good we wouldn't benefit from challenging him right now. So we will need to keep him on the Alimentum a bit longer to see if the vomitting settles. Thankfully she filled out forms to have this covered ... it was getting a bit costly at $7.50 a day for the stuff. We talked about allergies but she really doesn't feel that it is likely an allergy as you should get a more straight tolerates or doesn't tolerate reaction, instead of okay for a bit, then not so good. Others have said that their child had symptoms later on for various allergies, but most of the time these seem to be more mood related or discomfort, but not so much vomitting or diarrhea. So I'm not sure what to think on that. She is sending us to the GI (Gastrointestinal) Doctor first, maybe still an allergist afterwards, depending on what GI thinks.

We talked about what this could be, but all she could say is that our boys are a puzzle ... not all that comforting. We did discuss the possibility that we could be looking at something James also had. James was diagnosed with LPI Colitis. Colitis is really a brood definition that doesn't say anything and simply means he had inflammation in his intestines. Usually they narrow colitis down to a specific cause or disorder but with James they could not find one, so they assumed it was related to his LPI since it's rare for a person to have two rare and unusually things. They went with this diagnosis even though there were no other reported cases of colitis in LPI patients. It wasn't until near the end of his life that we began to question if there was something more of different going on in his stomach ... we never got an answer to these questions as his lungs took precedence over this issue. That being said we will always wonder if James had two seperate issues or not (unless the autopsy reveals something, but we're not expecting it too). Could it be then that Matthew suffers from the same stomach issues that James had, which we thought were LPI but may not have been??

Normally we should be able to take comfort in the fact that in most aspects Matthew appears healthy. He looks healthy, acts healthy (okay, is miserable healthy?), is chubby and doing excellent on the charts. So really there shouldn't be anything wrong with him, and if there is it's not likely to be serious!! We wish we could feel confident in such logic, but we know that James also appear well most of his life, deceiving not only the average person, but also the doctors ... appearance is not everything. It gives us a great sense of deja vu as we mop up vomits again, chart formula intakes and bowel movements, check temperatures and resp. rates .... and pray continuously that this will all disappear as quickly as it appeared.

Until this week we had not said anything to the girls about Matthew, although they had realized that I was taking him to the doctors. A light dawned for Marietta this week, probably in connection with the vomits, but she also realized that we were not feeding Matthew solids anymore and so she asked about it. I sat down with her to explain that we had to wait until Matthew was feeling a bit better and the doctors were trying to figure out what was irritating him. She seemed to accept this fine, but it wasn't until Rebecca informed me later that Marietta had told her Matthew was sick and was going to die that I realized what this all means to her. She doesn't say much, just makes her own conclusions (and thinks she's always right) and this makes it difficult for us to know what is really going through her head. Rebecca on the other hand didn't seem the least bit fizzled by this information which struck me on the fact that this is just acceptable to her, people get sick and die ... although knowing Rebecca it's probably just that she hadn't put any thought into it as she's not too deep of a thinker most times. She has clued in that Matthew's not feeling the best as she asked me the other day at lunch time "Hoooooowwwwww many days has Matthew been crying now" with this exasperated sigh that was basically saying "Is he ever going to stop?"

Well this became must more long-winded then I planned. So ... we continue to chug away at the formula issue and continue to fervently pray that Matthew's appearance is indeed accurate and that we'll look back at this not long from now and be able to breath a big sigh of relief. At the same time we pray realistically and ask the Lord to help us to deal with whatever has been set on our path at this time.

Monday, February 18, 2008

Family Day

So we have this new holiday called Family Day. Given the name of the holiday I'm assuming that means we're suppose to enjoy the day as a family. With a hubby thick in the studies right now that isn't all so easy to do, but we did have an enjoyable day still.

It's been a bit since I played around with my camera, so I took a few pictures of the family and kids this morning. I never seem to have much success in that department, but oh well, we had fun (mostly). Matthew usually is good for about 2-3 pictures and then he's done.

While Matthew napped I took the girls skating for a bit. We haven't gone the last couple Saturdays because there's been snow outside and we've been doing the sledding thing instead. The girls prefer sledding over skating, it seems the novelty of skating has worn off, although Rebecca still enjoys it quite a bit (Marietta was never to extremely keen on it). On Saturday they went sledding again as it was suppose to rain all day Sunday (it did rain, not all day tho) and we didn't expect to have any snow left today. Well there was still snow out there today, but I'm guessing one would have gotten mighty wet going sledding.

The girls spent some time in the kitchen after skating making some cupcakes with their Easy- Bake Oven (have I ever mentioned what a waste of money that is!!). They have three more packages left and then that things is going out the door ... time to teach them some real baking, at a fraction of the cost.

We then decided to head out to Swiss Chalet for supper. They had free kids meals for each entree purchased, so the girls were free ... and we still have some gift cards leftover that we had received during our time with James .... so all in all a free meal, no complaints here. It appears a good part of the rest of our dutch-blooded church community was cashing in on the free kids meals as well ... hope you all enjoyed your meals, ours was good!! :) I'm just thankful we decided to be there at 4:30 ... few minutes later and we would have been waiting like everyone else (okay, we would have just gone home, no patience for that).

And so the day ended with a Bob-the-Builder video (the girls still love watching that show as much as James did) and then some over-priced Easy-Bake cupcakes with hot chocolate and off to bed. And here I sit ... when I should be doing the paperwork.

So ... hope you all enjoyed your day off ... won't be long and March Break will be upon us.

Wednesday, February 13, 2008

Peds Appointment

Okay, so another Matthew update. (I'm not planning to change the title of this blog to Matthew's Story, so this better all clear up soon :)

So last time I wrote about the diluted formula. We did that for two days and did not see any change in the diarrhea, only thing we noted was he was more content those days ... coincidence? (famous question!). So we figured we better not deprive him of his nutrients for too long and we put him back on regular formula. Miserable boy that day, no change in diarrhea again, vomitting at the end of the day. Time for a new plan of action. So we took him off of his milk-based formula and put him on a hypoallergenic formula called Alimentum. This is for milk and/or soy allergies and is also made with pre-digested protein. One day later we had proper stools again and back down to two a day. We've only seen mucas in one diaper so far.

This is all great and wondeful, but what does it mean??? It would be odd for him to develop such a reaction to milk after being on formula for six months, yet it is not impossible for there is such a thing as slow onset milk intolerance which usually develops after digesting a moderate amount of milk protein. But yet, he should have had some symptoms earlier (he hasn't had diarrhea before, but has had vomitting episodes before) and you wouldn't expect him to be effect for so long afterwards.

To add to our confusion and constant famous question of coincidence, last week Matthew developed a rash/bumps on his face, mostly his cheeks. Looks mostly like hives with raised red bumps, but is contained to his cheeks. Flares up and settles down, but doesn't go away, even after the formula change. Related to the diarrhea issues? or something totally seperate?

As for the cough. That one is more confused now by that fact that he might actually have a cold, although it's really hard to tell. Since the girls have colds and he's gotten worse the last few days I'm thinking right now he has a cold ... but doubting the original cough was a cold. He redeveloped his cough 10 days after coming off antibiotics, mild but back. It's nothing serious, just a congested sounding cough mostly during the beginning of his nap or in the late evening. It's not very often he does it when awake, he just sounds a bit congested when waking up.

His Resp Rate has come down to a high, but more acceptable level of around 55-65bpm. This is better then the 60-75 we were getting a couple weeks ago ... hopefully it will continue this way.

So the combination of everything ... means?? ... not sure!! The doctor thinks the rash is likely just a typical baby rash/eczema from the weather. Possible - altho I've had a lot of eczema and a the other kids have also and it definitely doesn't look like that. Milk allergy can cause a rash, but not necessarily contained to the checks tho. As for the diarrhea and formula she had no answer and no results from the stool tests we did last week. She suggested giving him another week or so on Alimentum and then putting him back onto his old formula, feeling the only way to really figure it out is to challenge his system. If symptoms reoccur then we'll have to do some further testing. Nothing we can do about the cough issues right now as we're not sure if he has a cold or not, and not even sure what it would mean, epescially considering the resp. rate has improved a bit.

After we got the LPI results back we were a bit more confident that we could just sit back and let the Resp Rate issue be for a while since that was the only symptom we were seeing. Then we got a good report on his heart, which added more reason to let it be. He continues to grow well which tells us his bodies not struggling too badly. The diarrhea issue just through a loop into everything and the presistent cough isn't all the comforting either ... but hopefully just a cold (fingers crossed). So we'll chug away at the formula issue and see what the next weeks bring.

Matthew's Rash. It flares up more and the red bumps get bigger and more of them at times, often after a nap. Pictures don't really show it very well. Seen anything like it? Just eczema?

Sunday, February 10, 2008

Sleddin' in the Rain

To be fair it didn't rain the whole time, first it was blowing and snowing and sleeting and raining, then it just rained, then the rain stopped and so did the wind. And shortly after we got home the sun came out. But regardless we had lots of fun.

Our usual routine has been to go skating on Saturday afternoons, but the last two weeks we've actually had snow and so we figured we'd take the opportunity to go tobagganning instead. The kids love this ... better then skating. Last week we went as a family ... with Matthew all bundled up to watch us. The snow was fluffy and perfect for sledding ... and I forgot the camera. So I remembered the camera this time (unfortunately I was rather disppointed with the outcome as many were blurry, altho they did not appear so on the camera screen). This weekend Rob was buried in the books writing essays, so I went with the girls. The snow was very wet and not near as nice, limitting where we could sled, but the kids met other friends from school there and had a blast!!

The trek up the hill
Fun on the GT

Marietta and Rebecca hanging on to each other so they come down together
Oopppps .... wipe-out

Yup thats me! Can you tell?
One more of Marietta

Unfortunately I missed pictures of the best times when we started to get more creative .... two crazy carpets, six passengers; three crazy carpets, eight passengers, etc. I was kindly reminded (and continue to be today) of why I do not like crazy carpets ... I only went for one such trip on these thin carpets that do nothing to protect you from the bumps on the way down ... and after that I had trouble walking ... ouch my tailbone ... today I could walk and stand okay, but sitting was still a challenge!!

Other then that not much exciting has been happening around here lately. The kids enjoyed a couple snow days over the past week or so (and Rob had one too) and they had a ton of fun at Winterfest at school on Friday. It's not every day they're allowed to have snowball fights at school ... and better yet ... to be allowed to throw them at the teacher too!! Rob is totally swamped in the books and is looking forward to Reading Week next week (where I've been given strict instructions not to make any plans for him as he'll need the whole week and then some to study). And I've just been busy doing ... well ... ah ... all those things that wives/mothers do on a regular basis.

Thursday, February 7, 2008

What did I do??

Remember my story about concentrating the formula? I had figured " a short term high calorie diet wasn't going to hurt". Apparently I'm wrong, or so it would seem. I'm regretting that hasty decision right now ... altho maybe when it gets sorted out I'll be thankful ... who knows.

I wrote about the effects this had (we're assuming it was related to the concentrated formula) the next day - he vomitted and had loose stools, the following day more loose stools and mucas. Friday to Sunday did not see anything majorly significant, he continued to have loose stool about 3-4 a day. Monday we started a whole new level ... it's like James is back. We dealing with 6-7 loose, diarrhea, seperated, mucasy type stools a day. So far only once we've questioned whether we're seeing blood. Matthew has been unhappy and needs extra attention, but if given it he is usually pretty good. Monday was his worse day where he cried most of the afternoon and I had to walk the floors with him off and on throughout the evening because he kept waking and crying and wouldn't stop. Since then he's slowly been getting more toleratable

And so we ask ourselves: Is this still an effect from last week? Could 20oz really have done that much damage? Why would it have suddenly gotten worse instead of slowly better? Could he just have picked up a Gastro -type Flu and this all be coincidental? On Tuesday we put him on strictly rice pablum since we know for sure he tolerates that fine, since there was no changes today we took him off all solids and also diluted his formula to keep him hydrated but give his gut a bit of a rest. Argghhhhh, I thought we were done with medical questions.

On a happier note. On Tuesday we went for a ECG (they put 12 leads/stickers on to monitor the heart function and let the machine print off the readings) and seen the Cardiologist. The 1 minutes (if that) ECG they did says his heart if fine and since he has no other signs of heart problems the Cardiologist says it's likely a "innocent" murmur as a true murmur would be heard all the time. We were not surprised by this answer as we know that most murmurs are "innocent" and he should have shown other signs if he had a murmur. So we have ruled out another concern and avoided having a sedated Echo done. While I was there I was able to get another SAT reading on Matthew and this one came up good at 99-100%. They're still waiting for a machine to come in for us to borrow, if it takes to long they've offered a few other options, but right now we're okay with waiting.

Oh ... and the cough is back ... not as bad and only comes shortly after going to sleep, and a couple clearing coughs sometimes when he wakes.

Over the weekend I was getting more relaxed about the idea that this may just all be a lingering cold that we picked up because "we know too much" and notice things others would not (as the doctors like to point out) ... now ... I don't know what to think ... *big sigh*

We have another appointment next week, we'll see what that brings ... until then ....

Friday, February 1, 2008

Urine Test Results

Today our Genetic Doctor left a message on our answering machine, informing us that the results of Matthew's urine tests were back. We had expected this to take about a week, as we've previously experienced, so this was a surprise. We thank our Heavenly Father for so quickly relieving our tension, stress and fears for the Dr. reported that the urine test came back "completely normal" and there is "absolutely no possiblity of LPI."

I did not get a chance to talk to our doctor, but we have always been completely happy with the work he does, feeling confident that he knows what he is doing and has reviewed everything thoroughly. Since he so firmly stated his message on our machine we feel that we can move forward in confidence that we will not have to deal with another LPI PAP case. You can imagine what a relief this is to us.

We realize that this leaves us without an answer to our concerns about Matthew's breathing, but we feel some of our anxieties have been relieved and maybe even have some hope again that this is indeed just a lingering cold. We also realize that as time slowly ticks on, this is becoming less and less likely (but it's still not impossible.) At the same time, we're aware that just because we've ruled out our greatest fear, that doesn't mean that there is nothing wrong or to be feared. Once again, time will tell ... as we go through the various tests they think are necessary to get an answer. We pray it will not take long to receive this answer, or better yet, that we simply see him improve.

We thank you all for your prayers, e-mails and genuine concern, most of all we thank our Heavenly Father for the results we received today.