Last Thursday night was NOT a good night for us. Jayson was up crying practically every hour of the night until 3 am, even when I tried putting him in bed with us (which I NEVER do, and was reminded why when I kept getting kicked and bashed in the head). Tylenol wasn't cutting the pain, which made me think teething wasn't the issue. Ibuprofen finally kept him quiet after 3 am, but of course I had to roll out of bed at 5:20 to be at work by 6:30 am. That was pretty awful too. Sam decided to take the day off and get Jayson into the pediatrician. I was suspicious he had picked up an ear infection from his almost three year old cousin, and indeed I was right. Bring on the antibiotics!
Antibiotics wouldn't be a problem for pretty much any other kid, but throw CSID in the mix and you've got an issue. Every children's antibiotic suspension in existance has sucrose in it. When Jayson went through his "serial ear infection because I'm in daycare" phase from about 6-12 months old, we had so many rounds of antibiotics, which brought on even worse diarrhea than usual and terrible diaper rash. I know antibiotics can do that to any kid, but this was exceptionally bad. I'm conviced that they were less effective too, because they ran through him with remarkable speed, and often the infection took multiple rounds of antibiotics to be cured.
The last time Jayson was on antibiotics was in February, not too long after his CSID diagnosis. After talking to one of the pediatric doctors at our practice, my local Smith's pharmacy told me the only thing we could do was: either have Jayson take the sugared up antibiotic and deal with it, or not treat for the potential sinus infection he had. After three days of trying to cope with the side effects of the antibiotics we decided it wasn't worth the hassle, and stopped giving them to him. Risky I know, but the darn thing turned out to be viral anyway (I'm still not really over it, but that's a different story). Luckily we saw a different doctor in the practice this time, and she prescribed adult capsules of amoxicillin that we could cut open and sprinkle in food/drink. We've been putting it in his milk sippy cups twice a day (he never fails to empty them), and thankfully he (and his body) can't tell the difference. Plus he's been a much happier kid and sleeps through the night again, phew :] One other option was to get antibiotic shots, but I thought it would kind of be a pain to have to visit the doctor three days in a row--but at least that would be a choice if necessary too.
On Saturday we went and visited the animal farm down in Thanksgiving Point--it was Sam's niece's second birthday, and my mother-in-law was also visiting from New Jersey. Jayson had a pretty good time, except he did NOT want to ride the little ponies at all. Max on the other hand wanted to eat and stay inside just about the entire 1 1/2 we were there. Apparently he is not a fan of farm life lol. They had a sign on the animal pens that said "Please do not feed me, I am on a special diet". I seriously wanted to get one for our house, because it sure reminds me of us!! Our only sad moment was when everyone else went to go get ice cream after the animal farm, and it was probably only sad for me. We didn't go because I figured it would make Jayson mad that he couldn't eat any when everyone else was--but at least he's not old enough yet to know what he missed out on, right?
Yesterday we started Max on Ross Carbohydrate Formula. It's soy based, so I'm hoping to see his lactose sensitivity issues fade away--he already seemed a bit less bloated this morning, which is good news. We are adding dextrose powder in for the carbohydrate, and it doesn't seem to give him any issues (I was only worried because it was some that Sam picked up from his work; he claimed it was 99.8 percent pure dextrose but I was still wary/cautious). Of course, Max's tummy will be the ultimate guide as to what is ok, but so far so good. It's not so great on the wallet however, and very inconvenient to run out of (I ordered it online though Abbott Nutritionals as a standing order). Incovenient and/or expensive really goes hand in hand with CSID though, so I shouldn't be surprised at all by this point.
I haven't forgotten what I said in my last post about writing my more encouraging thoughts on CSID, but I've got to save some fun for the rest of my shifts at work this week! I have one more swing shift to work tomorrow night, and I'm also here Saturday and Sunday, so bring on the blogging fun......
P.S. It's national lab week so give your favorite laboratorian a big hug and lots of free food ;)
Wednesday, April 24, 2013
Sunday, April 14, 2013
Birthday Blogging
Well folks, it's official: I'm another year older. And maybe wiser, because today I am feeling very grateful for a lot of things in my life! Here are all the great things that have happened because I exist and aged lol:
Friday night my family threw me a really fun little party. We had enchilada pasta for dinner, along with a yellow cake/chocolate frosting and THREE different kinds of ice cream. Obviously Jayson didn't--he had homemade meatballs and a sugar free chocolate--but hey I can request something starchy and sugary for MY birthday right?? Although, I have to admit, I felt pretty guilty when he crawled into my lap and wanted to try my cake and ice cream. Thankfully, he decided not too long after I denied it to him that that he really wanted to play outside instead, so my guilt eased up a bit :]
Apparently lighting 24 candles on a cake is a fire hazard, because midway though the Happy Birthday song, the smoke alarm in the house started wailing! I almost totally spit all over the cake trying to blow out the candles because I was still laughing too hard (it's the little things in life, right?). I got some nice trinkets from my family, and my dear husband got me a certificate for an at-home professional massage. I seriously cannot wait to redeem it! I was thinking this Saturday, but we have two more April birthdays in the families to celebrate that day (plus Sam's mom will be visiting). I love getting to celebrate birthdays though so I figure I can live a few more weeks until a massage.
Today I got to sleep in until 7:45--the beauties of not working a morning shift a work! However, we did have to go to church and teach our 9 year old primary kids, and then I did have to head into work from 12-10:30. But, if I'm looking on the bright side, Sam taught the primary lesson this week, and work has been really quiet. I have enjoyed the time to catch up on blogging and whatnot, while doing the occasional item of work that comes in. A few nice co-workers of mine brought in brownies and ice cream that I got to enjoy on my evening break a few hours ago. The boys even called me before they went to bed to tell me good night. Jayson is so cute on the phone as of late (he tells me hi, night-night, and love you) and Max cried in my ear lol. I've been promised a clean house when I get home, which is a pretty exciting way to end my birthday day if you ask me.
I've had a lot of thoughts on CSID lately that I want to share. The good news is that they are a bit more positive than my last downer post. The bad news is that I'm running short on time to talk about them now, so I think I will save that for another slow work shift in the near future :]
Friday night my family threw me a really fun little party. We had enchilada pasta for dinner, along with a yellow cake/chocolate frosting and THREE different kinds of ice cream. Obviously Jayson didn't--he had homemade meatballs and a sugar free chocolate--but hey I can request something starchy and sugary for MY birthday right?? Although, I have to admit, I felt pretty guilty when he crawled into my lap and wanted to try my cake and ice cream. Thankfully, he decided not too long after I denied it to him that that he really wanted to play outside instead, so my guilt eased up a bit :]
Apparently lighting 24 candles on a cake is a fire hazard, because midway though the Happy Birthday song, the smoke alarm in the house started wailing! I almost totally spit all over the cake trying to blow out the candles because I was still laughing too hard (it's the little things in life, right?). I got some nice trinkets from my family, and my dear husband got me a certificate for an at-home professional massage. I seriously cannot wait to redeem it! I was thinking this Saturday, but we have two more April birthdays in the families to celebrate that day (plus Sam's mom will be visiting). I love getting to celebrate birthdays though so I figure I can live a few more weeks until a massage.
Today I got to sleep in until 7:45--the beauties of not working a morning shift a work! However, we did have to go to church and teach our 9 year old primary kids, and then I did have to head into work from 12-10:30. But, if I'm looking on the bright side, Sam taught the primary lesson this week, and work has been really quiet. I have enjoyed the time to catch up on blogging and whatnot, while doing the occasional item of work that comes in. A few nice co-workers of mine brought in brownies and ice cream that I got to enjoy on my evening break a few hours ago. The boys even called me before they went to bed to tell me good night. Jayson is so cute on the phone as of late (he tells me hi, night-night, and love you) and Max cried in my ear lol. I've been promised a clean house when I get home, which is a pretty exciting way to end my birthday day if you ask me.
I've had a lot of thoughts on CSID lately that I want to share. The good news is that they are a bit more positive than my last downer post. The bad news is that I'm running short on time to talk about them now, so I think I will save that for another slow work shift in the near future :]
Sunday, April 7, 2013
Venting Time
UGH. That word right there pretty much sums up today.
I think I've had some of the crankiest children in existence this afternoon. Max has been crying more of the day than not, and I am pretty convinced that it's all to do with his lactose sensitivity. Every time he eats, his poor little tummy gets all bloated and of course that makes him feel miserable. Thanks to his CSID, he can't have any of the formulas without lactose in them--they all are chocked full of sucrose to compensate. We tried lactose drops, but for some reason we can't fathom, they give him diarrhea too. I've about had it with his misery, so I've decided to call the dietician tomorrow and get him on a special formula. It's soy based (so no worries about lactose in it) and is made so that you can add in your own carbohydrate of choice (so no sucrose/starch either). The big cons are that it isn't a powder like the formulas you buy in the store--it's actually a liquid concentrate--so it's not going to be exactly as portable, and it's going to be more expensive than the regular powder formula. CSID and expensive pretty much go together though, so no real surprise there. I will do just about anything to make Max feel better though, so I'm thinking it's worth a try. I don't think it could really make things worse in terms of his health anyway.
And then I have a teething toddler. Who, thanks to his age and dietary limitations, probably doesn't eat enough to keep up his energy levels...which ultimately doubles his cranky level. I'm getting pretty fed up with the lack of things Jayson will eat that are good for him. Or eat period. I guess every parent of a toddler feels that way....but for some reason it seems worse to me with Jayson. Maybe it's because his fruit and vegetable choices are a lot more limited. The bread products/carbs he can't eat probably aren't fantastic for him in the larger quantities he would want anyway. But it's unfortunate he can't have some, because maybe it would help keep him less cranky. I'm really starting to run out of ideas of what to feed him, and he's already gotten sick of a few "favorite" foods because I overused them (primarily cheese sticks).
I hate to always whine about CSID, and I HATE for it to rule my life so much--because my family is stuck with it regardless and I need to learn to make the most of it, but MAN some days I just wish it didn't exist! There are a lot of times that I wonder why on earth both of my boys (and possibly Sam and/or I) are afflicted with this--what were the odds?? Life almost seems normal....and then it's snack time, or meal time. And I remember. I'm finding it's pretty much impossible to eat out, so doing anything on the fly is out for us. Our Easter Vacation to California kind of confirmed that to me. I feel that sometimes we are an awkward burden to people when we go out; like they can't enjoy themselves because we are there and can't eat what they want to eat.
Okay, enough pitiful whining. I think everyone who has a CSID family member needs to vent a little every now and then. It makes me feel a hair better for doing so, like maybe somebody will understand my situation. And now, I will leave you with a few cute pictures to make up for the downer post :]
I think I've had some of the crankiest children in existence this afternoon. Max has been crying more of the day than not, and I am pretty convinced that it's all to do with his lactose sensitivity. Every time he eats, his poor little tummy gets all bloated and of course that makes him feel miserable. Thanks to his CSID, he can't have any of the formulas without lactose in them--they all are chocked full of sucrose to compensate. We tried lactose drops, but for some reason we can't fathom, they give him diarrhea too. I've about had it with his misery, so I've decided to call the dietician tomorrow and get him on a special formula. It's soy based (so no worries about lactose in it) and is made so that you can add in your own carbohydrate of choice (so no sucrose/starch either). The big cons are that it isn't a powder like the formulas you buy in the store--it's actually a liquid concentrate--so it's not going to be exactly as portable, and it's going to be more expensive than the regular powder formula. CSID and expensive pretty much go together though, so no real surprise there. I will do just about anything to make Max feel better though, so I'm thinking it's worth a try. I don't think it could really make things worse in terms of his health anyway.
And then I have a teething toddler. Who, thanks to his age and dietary limitations, probably doesn't eat enough to keep up his energy levels...which ultimately doubles his cranky level. I'm getting pretty fed up with the lack of things Jayson will eat that are good for him. Or eat period. I guess every parent of a toddler feels that way....but for some reason it seems worse to me with Jayson. Maybe it's because his fruit and vegetable choices are a lot more limited. The bread products/carbs he can't eat probably aren't fantastic for him in the larger quantities he would want anyway. But it's unfortunate he can't have some, because maybe it would help keep him less cranky. I'm really starting to run out of ideas of what to feed him, and he's already gotten sick of a few "favorite" foods because I overused them (primarily cheese sticks).
I hate to always whine about CSID, and I HATE for it to rule my life so much--because my family is stuck with it regardless and I need to learn to make the most of it, but MAN some days I just wish it didn't exist! There are a lot of times that I wonder why on earth both of my boys (and possibly Sam and/or I) are afflicted with this--what were the odds?? Life almost seems normal....and then it's snack time, or meal time. And I remember. I'm finding it's pretty much impossible to eat out, so doing anything on the fly is out for us. Our Easter Vacation to California kind of confirmed that to me. I feel that sometimes we are an awkward burden to people when we go out; like they can't enjoy themselves because we are there and can't eat what they want to eat.
Okay, enough pitiful whining. I think everyone who has a CSID family member needs to vent a little every now and then. It makes me feel a hair better for doing so, like maybe somebody will understand my situation. And now, I will leave you with a few cute pictures to make up for the downer post :]
My sweet little Maxwell, who now giggles and coos back at you.....love him!
Jayson with his Daddy and Grumpy Rick--we went to Funworks on our vacation, and I'm not sure which one of the boys had the most fun!
Sam and I enjoying the really nice weather outside (and not having to work!)
The picture quality isn't so great, and the boys weren't so into posing for a camera, but don't you just love our Easter outfits? My mother in law got the boys' clothes for us, and they are the cutest things EVER!
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