LPI and Formula

My entry was getting a bit long yesterday so I didn't bother getting into all the details when explaining what's up with Matthew, but a questions hs popped up, so I figure if some are asking more are probably thinking.

Since Matthew is formula fed, would we not being see true LPI symptoms in him

Matthew is on formula, so this would mean that he is getting protein all the time. When you are breastfeeding you breakdown the protein for your baby so that they do not have to process it, but formula does not do this. It is believe that the symptoms only appear if the persons system is being "overtaxed" by protein. That being said, it is possible that Matthew has a relatively good tolerance of protein and so he's not being overtaxed.

If we look at how we calculated James protein requirements for a day then it would be said that Matthew can have around 11grams of protein a day. Currently he gets about 13 grams per day. I have read of some cases where the tolerance is about 3 times higher then what James' diet was at. In reality this means the person is barely protein intolerant, they just can't binge on steak. So if Matthew had a high tolerance then we may not be taxing his system, and therefore we would not be seeing symptoms at this time.

When James was diagnosed we also had the girls tested for LPI. They had no symptoms so why was this done? It is possible that you can have a high tolerance and not have obvious symptoms but because your body isn't able to process the protein well it taxes the kidneys and in the end does severe damage. There are cases of LPI where the person was not diagnosed until

older ages (I recall two, one at age 6 and the other at age 9), but to be fair they did have some symptoms, it just wasn't all tied together until later.

All this being said, the doctors are still "quite confident" that you would still be able to detect in the urine if a person has LPI even if their system is not being overtaxied. Not knowing enough about LPI the test is not a guarantee, only DNA testing can finalize the question.

With that being said, what I did before Matthew's test was to increase the amount of protein he was receiving. To do this I concentrated his formula for about 4 bottles. I have no idea whether this will make a difference on the results or if we reached a level where his system was taxed, but I figured a short term high calorie diet wasn't going to hurt and might just make me feel a bit more confident in the test results.

Two things happened yesterday that increased our concern. A couple hours after the 4th bottle Matthew threw up (a lot), and an hour later again threw up (a little). Matthew's afternoon BM was thinner then normal. I would not classify it as diarrhea, but it was definitely thinner. To add to that today Matthew had four BM when he's almost always has two a day. Three of these were thinner, and one had mucas in it. (He also did throw up today, but I'm quite sure that was caused by coughing/gagging).

Now to be fair, this could be concidence. It could be because of the additional protein. It could be because of the concentrated formula, for not only was there additional protein but additional everything. So this doesn't spell LPI, it just adds another thing to the list. The other thing is that when you concetrate formula you should end up getting thicker stools (or constipation), altho I'm not sure that would happen in just a few bottles. So the thinner stools doesn't fall in line, but at the same time can be from any of the additional ingredients in the formula. So the whole process just confused us more instead of helped us ... or maybe it helped us ... I'm not sure -time will tell.

So in reality there are no true obvious signs of LPI (the fact that he is growing so well goes strongly against LPI). The symtpoms that we see that are similar to James could be related to many, many illness, or could even just be minor viruses, sensitive stomach, etc. Only time will tell so for the time being we keep busy and try not to focus and think about it too much ... so to the ladies I visited today ... thanks for keeping me busy I had an enjoyable day:)

Thank you all for your e-mails, comments and prayers. We pray the answer will come soon.

*sigh*

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4: 6, 7

Over the past half year I have often turned to this text to remind me of where my focus should be when I am struggling to understand something that is put before me. We must always remember to put our faith and trust in the Lord, for He is always there, never changing and carrying us through each and every day.

Since I talked about Matthew in my last blog, and many of you have asked about him since then, I should probably provide an update so that I don't have to tell the same thing over and over ... isn't that the point of a blog?! :)

Although nothing has really changed in the past few days, our anxiety over the situation has. For those of you who know our family, you will know that we like to make sure the doctors won't run out of things to deal with (like that would happen), whether it is myself with headaches/TMJ, or was Marietta and her stomach, Rebecca and her bladder and then Justin and James are self explanatory ... so I guess we shouldn't be surprised that we have to do our doctor run with Matthew also. But this time around it's harder to take it in stride, even though we tell ourselves we're just making life more difficult by worry about things that are beyond our control ... especially when at this point it could all be absolutely nothing ... although that hope is slowly fading.

Yesterday I took Matthew in to see the pediatrician. He has completed the antibiotics which had stopped his coughing; a good thing I suppose. It ruled out the whooping cough, for antibiotics will not help the cough from whooping cough, but will keep it from spreading. This did dash our hopes for a simple answer. We're now at 10 days off antibiotics and will soon get the tell-tale on if the cold-like symptoms will stay away...this morning he did sound somewhat congested, and the last few days he's had a stuffed nose (new cold, or symptoms?) So the coughing stopped but his resp. rate increased: I seldom get below 70bpm now, and definitely don't get 50bpm anymore (used to get that occasionally).

So I called SickKids before I went to see the Pediatrician to see what they thought. They didn't really have any thoughts on an answer, but said to have an x-ray done and they will gladly see him. We are suppose to go there in a few weeks for James' autopsy results, so they've booked Matthew in to see him then, (even though it's not their clinic day) and told me to call if he needs to come in sooner.

Back to our appointment yesterday ... our Pediatrician heard a faint heart murmur yesterday. If he truly has heart issues it could put stress on his lungs and increase his breathing. He doesn't show any signs of heart troubles or distress ... but then he also doesn't show signs of breathing distress ... even though he's breathing so fast. Most heart murmurs are "innocent" - where it sounds like a murmur but isn't really. But we cannot ignore this murmur and need to take a closer look ... and a closer look means an Echo (ultrasound of the heart) ... and at his age that means a sedation ... oh the fun! :( The big thing we have to remember when dealing with Matthew is not to treat him like James or to just look at James' issues, but to cover the whole situation ... even though James and LPI PAP are our biggest worry.

With that in mind, she said we should do a retest for LPI. They are quite confident he does not have LPI, but given how rare LPI is, and that they really don't know when the signs of it actually show up, it doesn't hurt to test again. It is only a urine test and is not invasive, so it's no big deal to repeat the test, and we do feel it's a good idea as we are losing our confidence that he is truly LPI-free (even thought he appears symptom free at this time). I just hope I can accept the answer we get this time if it is LPI and if it's not to actually feel confident he doesn't have it. The only way to get the true guaranteed answer is to do a DNA Test - but he doesn't show any signs of LPI so there's no valid reason for the test.

So today I was off to Mac to have an x-ray taken and drop off his urine sample. While I was there I did some visiting and also made a stop to use a SATs monitor on 3C. Unfortunately the results on the first monitor only made me more discouraged as he came in at 94% (healthy you should be 98-100% ... if you have lung issues above 92% is okay). Since the Respirtory Therapist we dealt with when James was at Mac was not in, my dietician hooked me up with someone who works with her. While I did a few other things, she looked into whether they had a SATs Monitor that we could borrow for a few days to see if we could get a better idea of where Matthew is SATing throughout the day and night. The issue with the one we were using at the hospital is that it's just a spot checking one and so it isn't really a good fit on a small guy, so although the tracing was good on the machine, it's hard to be confident that it was completely accurate. When I came back she told me they didn't have any machines available right now, but there is one that is suppose to be returned and then we can use it for a few days. She suggested having an overnight oximetry test done (when they come out and test/record overnight the SATs levels) if we cannot get a machine soon. It would at least give us an idea of whether there is an issue and what his baseline is at. Before I left we got a different machine and tried again and this time he came in at 98%. So it's hard to say whether he was truly SATing lower before (very possible, as it does fluctuate) or whether we aren't getting good readings. She said she would contact our Pediatrician to let her know the readings we are getting. We'll wait for a bit to see if we can get a machine at home, otherwise we'll have to consider the overnight oximetry.

So we'll hear back on the x-ray shortly if there's anything of concern. The urine test will take about a week to get results on. Our Ped is trying to get the Echo done before we go to T.O. so we have a better indication of whether the heart is an issue, but realistically I'd be extremely suprised if that actually happens. But I really cannot complain, for all the doctors/nurses/etc that we have talked to have been very helpful and quick, for which we are very thankful. We are thankful we know the system, how a lot of it works and who to talk to ... we just rather not be using it.

I ended my last entry by saying 90% of us says nothings wrong with Matthew. I'm afraid that number has changed drastically, I'm not even sure what it's at right now. There is something wrong, whether it's serious or not is now the bigger issue. I really shouldn't blog when I'm discouraged so I'll stop, get some sleep and wake up brighter tomorrow.

"The Lord is my strength and my shield; my heart trusts in him, and I am helped" Psalm 28:7

Matthew

At the end of this week Matthew will be six months old and as I was skimming through the blog I realize that there are lots of pics and stories about the girls but little about our Matthew. So now it's his turn!! :)

It's hard to believe Matthew's already 6 months old. I know it always goes fast when you have littles ones, but this time it's especially gone fast. It really hits home how we missed two months of his life. In some ways it feels like we've only had him for two months and here he is six months old already. Those first two months of his life are quite a haze. Even though I kept a journal (which I am so glad I did, even if I wasn't as on top of it as I'd like), when I read it I often find I can't remember the things I wrote about, but I can still go back and read Marietta's journal and picture it like it was just yesterday. It brings back how we functioned in survival mode back then and how little time we had for this new life in our family ... quite the opposite from now. Although we got little updates and seen Matthew occasionally during the two months we were in hospital, we became detached from him. When he first came home permanantly I felt like I was just babysitting. I knew he was home for good, but I was not attached to my baby as I felt I should be. I nursed my others until they were 7-8 months old and already when he was wee little bottle feeding had made me feel less attached . It took two weeks for me to develop that bond with him again, to feel that love and to hug him like he was/is truly mine. Matthew developed a bond with me also, for it did not take him long to decide that even though bottlefed, he was going to be dependant upon mom only, for slowly he began to refuse bottles from everyone else, even Rob, who fed him just as much (if not more) as I did during those first weeks he was home (you know, with all the galavanting I was doing :) So now I have a bottlefed baby who still ties me down (sort of, for I figure if he's hungry enough he'll eat ... but poor person who's babysitting my miserable child), but this time around I do not find this so burdensome, but rather enjoy it and realize that it will only last a few more months, at which point he'll learn to hold the bottle on his own and I'll be free again. They grow up so fast, mind as well enjoy it while I can.

Matthew is growing and developing as he should. He's a porky, but he hides it well with his long narrow face. Although not overly big to start with, he did have a head start over my other kids and now at 5 1/2 months is about the size my others were at around 8 months old, weighing in at 16lbs 15oz (7.7kg). He's just getting the hang of sitting on his own and this past week I dragged out the jolly jumper which he absolutely loved. He's been in the exersaucer for quite some time and would bounce like crazy in it, so we introduce the jolly jumper ... wow, does he ever like it and we're all relieved to have found something to make him less miserable at times. We introduced solids a couple weeks ago, but are not having any luck with it. He either clamps his mouth shut or spits it back out. The girls were easy when it came to solids, so this brings back memories of James, but I take comfort in talking to other people who also have babies his age and are having trouble getting food into them. For now we pray he's just another normal fussy, slow going child.

About a month ago we did develop some concern over Matthew's respiratory rate. In November he came home with a cold which he never got over. He recuperated from the worse of it but continued to have coughing fits a few times a day. We decided to wait it out until his appointment in January, but at Christmas he developed another nasty cold. For interest sake I thought I would listen to his chest to see if it sound different then James did only to realize that he was breathing 60-75 bpm (breath per minutes) (normal is 20-44 for a child 0-6 months). Even a cold should not have elevated it that much, especially considering he did not seem to be labouring extra from the cold. At this time he was also having vomitting episodes. It took us a bit to clue in that we had changed his formula not long ago and so we switched back, but the episodes continued and we couldn't determine if they were related to the cold or not as sometimes it happened after a coughing fit and other times just out of the blue. Thankfully these episodes stopped over the past week, so whatever it was has settled and we'll just leave it at that. We seen the family doctor, who figured he was okay as he appears healthy and is definitely growing well (even with the vomitting), but she sent him to the pediatrician just in case. At the same time they discovered an ear infection and so he was put on antibiotics. There was also the hope these antibiotics would help the coughing fits and therefore the resp. rate. It was thought that possibly he had developed a pneumonia and even the whooping cough since he has only had one immunization so far ... although he has really had no symptoms that support either of these, so it's likely just a long lasting cold. He was also put on Flovent/Puffers for extra measure. He's done the antibiotics and the coughing fits have subsided but the resp. rate has not. Now we wait it out to see if the cough comes back again after the antibiotic effects wear off. The doctor has suggested that he might just have a fast resp rate and nothing is actually wrong. We'd like to believe this, but it's more then just a little over the accepted norm, which makes it a bit harder for us to just ignore. We struggle to make sure we don't become overparinoid parents, but at the same time we've learned our lesson about ignoring things that seem minor. Acting upon James' issues earlier would not have change the end outcome, but we would have been able to ease some of his discomfort earlier on. For now 90% of us says that there's nothing wrong with Matthew, but at this time the other 10% is speaking louder and making us desire to confirm that this is indeed true.

On to the pictures.

Just hanging out watching the rest of us












It is time to pack away the swing. Matthew has decided not to relax and sit back when he's in it, but rather likes to show off his sitting abilities, as well as swing his arms all over, making it a bit of a dangereous ride ... and then ... when he falls asleep it becomes rather uncomfortable.

Matthew's favourite toy: the jolly jumper. He's quite content to spend long periods of time bouncing around in it. It is nicely situationed between the kitchen and dining room and allowing him to look down the hallways and keep an eye on pretty much all that is going on upstairs.

And then there's fun times with his big sister Rebecca. Rebecca has a knack for playing with kids, although she does have to be reminded that he's still young and has to be treated gently. The two get along quite well and can have some good times together.

Surprise!!

Well it's been three weeks since my birthday and I had completely forgot about it ... really three weeks is a long time ago ... especially to be thinking about ones past birthday. I already had forgotten a day afterwards, only to be reminded again by the welcoming snowmen on our front porch the next day. It would appear that certain other individuals had not forgot about my birthday, for yesterday morning ten ladies appearred at my door at 8am, armed with a birthday breakfast.

It being 8am on a Saturday means I would still be in my pj's and hair all frazzled. Well I was, but I had no excuse, for they had given me ample warning ... just not in the form that is to be expected. I was suppose to go out for breakfast with friends and we were suppose to be there at 8:15, which would mean I was suppose to leave at 8:00, therefore meaning I was suppose to be dressed and ready to go. Note the word suppose!! :) Well typical Steph style ... I was running late and then I had decided it was better to be late and have Matthew fed and hopefully have him fall asleep on the way so that I could have a peaceful breakfast. And knowing how I can never keep myself clean, I always stay in my pj's until the last minute when having to leave early in the morning. So the doorbell rang just as I finished feeding Matthew and there I stood in my pjs and wet-hair as ten people came on in and took over my kitchen.

But several minutes later, fully clothes and hair dry I was ready to welcome the committee a little more warmly!! Thanks ladies for the enjoyable morning. The breakfast was delicious and the fellowship lovely. I hope Laura learned her lesson and won't bother me on any future birthdays ... for first she froze her hands off hanging up snowmen and then she burnt her fingers cooking breakfast ... a lovely way to remember a friends birthday. And hey, I'm glad Rob made your plans a little more stressful when he decided to work and leave me the van, but in the end you did a good job and I had no idea ... until I heard that doorbell ring, then I began to wonder ... unfortunately it was too late then.

It was a nice start to a lovely day, where we enjoyed socializing, skating, shopping and a relaxed pace. Just a nice day all around.

The Rest of the Holidays

So holiday times is over already and it's back to school again tomorrow. I must say we had a very enjoyable holiday, actually the whole month of December was a bit like a holiday, but especially the last couple weeks. We enjoyed having Rob around and Rob enjoyed the chance to relax and catch up on some reading, work around the house, odds and ends and just feeling less pressure all around and even putting in a few days of work here and there. For myself the beginnining of the month was busy, but yet it seemed relaxing, for it's different when you can choose how busy you want to be. For the past two weeks we did lots of visiting, relaxing and just enjoying doing nothing more then the basics around the house. And tomorrow Rob and the girls start back at school, we reestablish a routine and I get back to work again. The list of things I need to get done is long as there is still much to catch up on from the past year, but I look at the list with a different view then before, for it is actually possible for me to get things done on the list now.

And here's some pictures that show a bit of what we've been doing over the past week or so.

To start off with we have an indoor picnic which we usually do during the winter holidays. This time there was not enough room in the dining room and so we had to resort to the kitchen floor, but regardless the girls still have some fascination with eating sitting on the floor ... why is beyond me, I quite like my comfy chair, but it's always nice to find small and simple things that will amuse them.

The girls enjoyed some time decorating cookies one afternoon. Marietta is our crafty child, but surprisingly it was Rebecca who ended up doing the most cookies and Marietta who lost interested after a few.

Another afternoon we decided to make some Egg White Cookies. They found this even more fun then using their Easy Bake Oven, for it was actually like real baking (well yes, it was real baking). And of course, for Rebecca, our dear sweet tooth, the best part was clean-up time.

For New Year's Eve we spent the night at friends in the Attercliffe area. Our small group getting together just like "old" times. It was an enjoyable time and we were thankful we were able to make it out even though Rebecca had come down with the flu the night before. But she appeared to be better and so we decided to go still. This was suprising to us, for whenever Rebecca develops a stomach flu it usually takes her 4 days to get over it. First she gets over the initial flu like everyone else has, but then her sensitive stomach takes another 3 days to recuperate and she must take in only liquid, for even a small cracker will come out the bottom end in about half hours time. Slowly we began to realize that she wasn't actually better like we thought. She went to sleep while we were at church. We had told her she would have to stay home and take a nap and could get up after to play for a bit, but she was out so cold that I couldn't wake her up. She never once mentioned the fact that I didn't wake her up. Then the next day she turned down a few foods that she loves and by the end of the day she wasn't looking so well and the diarrhea set in. As long as she didn't eat any solids her stomach was okay and so she was still able to mostly play, but every now and then she needed to take a time out and usually by nighttime she was worn out and ready for bed. But regardless we still enjoyed ourselves. So back to the pictures.

New Year's morning everyone went outside to enjoy the snow we had gotten overnight. The kids started with trying to build snowmen, which then changed into forts, but all was forgot when "Uncle" Dave brought out the four-wheeler and GT Sled. And so the fun began for quite some time. The girls absolutely loved it and we were once again reminded of the things they miss out on when living in the city.

You always know when Dave is driving, for then the name of the game is to see how quickly you can get the passenger off the GT. He was a bit gentler on the kids, but you can still see them above after they wiped out going over a good bump ... too bad I missed the pic of them actually falling off, kinda neat to see both of them slidding off at the same time. And below we have Rob giving it a try ... true Dave style he made sure Rob headed right into a snowball (by the way the steering handle on the GT broke off, so the driver has little control over where he's going).

After an enjoyable morning out in the snow it was off to Grandpa and Grandma's for a family get-together. We had an enjoyable dinner and time with family with an evening playing games and doing card tricks. We slept over and the next morning it was a work day. We spent the day making croquettes ... yum, yum. So after chopping, grinding, stirring, cooling, rolling, dipping, more rolling, more cooling and finally deep frying (we deepfry them all and then freeze them so we can just pop them in the oven when we want some) ... we were finally done by 10pm, the end result was 530 croquettes. The girls enjoyed helping out too. Both girls had been looking forward to rolling the croquettes. Rebecca had been asking already for a couple months when we were going to make croquettes again, and poor girls stomach told her enough that even if we allowed her she wouldn't have wanted to eat any.

Rebecca has this great fascination with colouring eggs and thinks that whenever we have white eggs (we usually have farm fresh brown eggs) in the house we need to colour them. Since she hadn't done this for a while I let her make a dozen of them nice and pretty looking.

The girls also were asking for pizza so this time I let them make it themselves ... so it seems we spent a lot of time in the kitchen, but really we spent very little in comparison to "normal".

And one last photo of when we went skating again. This year we decided to get a skating pass so the girls could learn to really skate and enjoy it a bit more when they go with the school. The City offers a discount to families with low-income so we thought it was a worthwhile investment for some entertainment over the next months. We've only been a few times, but we can see them coming along and getting the hang of it.

It took Matthew quite some time, but he finally seems to have recuperated from his cold. We still get the occasional coughing fit from him, but the worst is over. After a week of having him vomitting several times a day the light finally went on (duh, you think we'd know better by now) that we had changed his formula not long before this spitting and vomitting started, and so we changed him back to his original formula and that seems to have done the trick. He still has thrown up or had a few larger spit-ups since then, but they seem mostly related to coughing ... so right now we're thinking we've got that under control.

And so that sums up our holidays. We hope you all enjoyed your holidays as well, for we certainly enjoyed ours. It's nice to see that you don't need a big fancy holiday or to spend lots of money to enjoy your kids and to see them having a good time ... you just need to take out the time to focus on them and the simple things become so much more enjoyable.

Hugs

Have you ever had it that you are busy doing something and then you have this feeling that you didn't finish your coffee (or tea). You get this strong sense that there is still coffee in your cup where you left it standing on the table and you can't get rid of that feeling until you check your cup. And sure enough ... there is coffee still in there, and even though it's cold now you feel you need to drink it just to get rid of that feeling that you didn't finish your coffee.

Maybe I'm just nuts, but I know I've had that feeling many times, and just to comfort myself that I'm not completely insane, Rob also gets the same thing ... so maybe we're both nuts :)
Ever since James passed away I've had this strong desire to hug him and tell him how much I love him. I need to hug him ... a great big gigantic James hug (that would probably result in crying). This desire will not go away for it feels like I still have tea in my cup and until I drink it that taste will remain in my mouth. Hugging someone or something else will not do, for nobody hugs like James, who gently patted you on the back when he gave a hug, and nobody smells or feels like my little James.

I often wonder why or where this desire comes from. I wonder if it is because for three weeks he was completely hooked up to cords and tubes and all we could do was hold his hand. I wonder if it's because on October 31 I really didn't mentally prepare myself for the worst and so I didn't give him that strong hug I should of before we let him go off for his WLL. After two successful WLL we knew the risk but didn't take them as serious and so I didn't take the time the day before to let him know how much we loved him, to pick him up and snuggle and hold him. For three weeks after that I could still hold his hand and tell him how much I loved him, I cannot imagine how those cope who did not have a chance to say good-bye to their loved one. During that time I could still talk to him, he could still listen and even though he could not respond with his voice his eyes sure said alot. When he passed away I was holding him for the first time in three weeks, but he was sound asleep (aneasthetic) and so this does not compare at all to a real responsive two-way hug.

I can analyze all I want, but whatever the reason, I continue to feel this strong desire to hold the boy I miss so much. I suppose this is to be expected, for it is all part of grieving and missing what we no longer have. For the first couple weeks after he passed away this feeling almost drove me nuts, and although it has lessened, it still is there and resurfaces more strongly at times when James' memory is especially strong (like after watching homevideos, or spending a period of time "just thinking").

So I guess it's like when you think there's coffee in your cup and then discover your cup is actually empty, eventually that sense that there is still coffee you need to drink goes away .... with coffee that sense disappears a bit faster then with James hugs.

Happy New Year!!

Well it seems another year has gone and a new one arrived, and with that we say to all our readers: Happy New Year!!

The end of a year and the beginning of a new year usually brings a time of reminiscing the past and dreaming of the future. We have done plenty of reflecting lately, especially in the past month. Our minds are constantly thinking about the things of the past year. It was a long year, an eventful year, a happy year, a sad year ... a year we will always remember and never forget. And now we look forward to a new year, with new beginnings and many changes. We pray it will be a happy year, but realize there will always be sad moments and times in our lives. Our prayer is always and remains that our Heavenly Father will continue to guide us each day, week, month and year as we strive to live a life to his service.

We wish you all a Happy New Year, may you also find your strength and comfort in the Lord and may you feel His presence in your lives each day, week, month and year also.