Captain's Log: Week 193

This was a fairly average week in our life. A few big things, but nothing too over the top. I can't tell you how glad I am to say that, because it's been so long since we've had a "normal for us" kind of week! Anyway, here's some highlights for you.

Things I Caught On Camera 

Meet Tonka (top) and Gidget (bottom), the newest members of our family! I got them a few days before Christmas from the animal shelter in North Salt Lake as an early present for Sam, and we have absolutely loved having cats around. They are the most mellow and sweet creatures ever--the boys just love hugging and chasing them whenever they don't run away haha. In turn, the cats love parking it on our laps whenever and wherever we sit/lay down. The shelter estimated that Tonka (a boy) is around 11 years old, and Gidget (a girl) is about 2. Because Gidget was so young, she hadn't been de-clawed yet. Hence, she was scratching up all the furniture and people in the house. That was a slight problem, so on Monday the claws went bye-bye. FYI, I was just as stressed out for her surgery as I've been for both the boys' surgeries! But, she did absolutely fantastic, and has adjusted great to life without the claws. I actually think Gidget and Tonka get along better now for whatever reason, so I'd say this experience was a big plus for us.

Just had to throw in the picture of Max, because I wasn't at his ENT appointment to get a pic of him, but it was too cute to not put up on here somewhere. Sam took Max into the ENT on Wednesday because he has had practially non-stop ear infections since October. As bad as that has been for us (he wakes up at least twice a night, and I'm sure it's because he's in pain) it's got to be way worse for him. Anyway, the doctor determined that Max is a perfect candidate to get tubes for his ears, so this coming Wednesday (the 15th) is the big day. I am actually thrilled to be able to do something that might make him feel better, even though I regret that he has to have minor surgery to do so. Ah well, he's such a trooper that I know he'll do great. More updates next week on how it went, of course.

Last week I ordered some much needed furniture for our house, and we finally picked up most of it this weekend! We put together a headboard for our bed, along with two small bookshelves that go on either side of the headboard. I didn't get a picture of that (shame shame, I know) but I did get a picture of Jayson's new car bedding! Ever since we discovered "Mater's Tall Tales" on Netflix a few months ago, he has been obsessed with Mater, so I decided to get him some Mater bedding as a late Christmas gift. He was so psyched when we picked it up that he wanted to go straight home and put it on the bed, no joke (and this kid usually wants nothing to do with the bed lol). We about had a major meltdown in Walmart because we couldn't open the packaging right there. I don't blame him though, because as I made his bed at home, I was getting all excited about how awesome the bedding was! The only things we have left to pick up from the furniture order are the entertainment center for downstairs, and a bed frame for our guest bed--that's kind of this week's house project. Then I'd like to get a new couch and decorate the house....no big deal right? I will accept any and all donations for such a daunting cause :p 

Cool Things I Didn't Catch On Camera

-We went to the zoo this weekend, yay! Jayson and Max both definitely enjoy getting to see all of the animals....as long as we don't get too close to the giant ones lol. Jayson and Max got the pleasure of zoo going with their cousins Rachel and Audrey, which I think they greatly enjoyed. It's a lot easier to stay at the zoo and enjoy the exhibits when there are more kids there to ooh and ah over the animals. And it's a lot nicer for the adults involved to have company/people to talk with. I think Jayson's favorite animals this time were all of the reptiles in the reptile house--he knew exactly what the snakes were thanks to the little pet snake that often visited his daycare a little while back, and he was proud to show that knowledge off. Pretty sure Max's favorite thing was the seal exhibit, because he got to toddle around the area and smack loudly on the glass walls! My favorite part of the whole experience was that it was a balmy 40 degrees outside, so we really didn't freeze at all like I had expected. Major bonus if you hate the cold like I do!

Goal Progress
-Sam is looking forward to getting an exercise program going. We are trying to make a schedule where he can go swimming three nights a week at the community center pool. This week we will see whether the pool is actually open at night, and if Sam actually has any energy left by the end of the day to work out lol. Hopefully he gets there at least once this week and enjoys some peaceful laps :]
-I did terribly at my goal this week. I had to work this past Sunday, and the weather was frightful the two days I had off--so that eliminated going to the temple. I am just not brave enough to traverse all the way up the mountain to the Bountiful temple in snowy weather, especially in a van with two wheel drive. To top it off, we got all ready to go to church this Sunday, and when we arrived the Tongan Ward was meeting in our usual chapel. Sam is pretty sure he missed the memo about Stake Conference or something last week, because we showed up at the right time and at the right building.....but nobody was there that we recognized. That was frustrating to me, because I was really looking forward to getting my church fill for the week. However, I still have a chance to get to the temple this week; it's definitely a high priority on my to-do list.
-Jayson has made some good steps in potty training. He is starting to tell us when he has to go, and holding it for longer periods of time. We even went a whole day without accidents yesterday! He has some good days at daycare, and some not so good days. A good day is two or less accidents; a bad day is being told he just about ran out of clothes (I bring him five pant changes, to give you an idea of how many accidents that is). At least he didn't come home in the little frilly green shorts that he loves so much this week (seriously.....one time that's all they had left to put on him at daycare, and he really wanted to wear them all the time after that!) Overall, I'm really proud of him, this has been a much easier week potty training than I anticipated.
-Max is trying more variety in table foods, even though he is determined to feed the high chair more than his mouth! It's not that the little guy doesn't try to eat food.....it just never seems to stay in his mouth lol. He had a bout of diarrhea this week that kind of derailed us from feeding him more foods, because I wasn't sure if it was "bad foods" or a sickness tearing through him, so that was frustrating. We are stepping back and remembering that Max is more limited at this point in starch and sugar digestion than Jayson is, and trying to be more careful in what we put on his plate (i.e. no fast food burgers that have American cheese on them, or chicken nuggets that contain any breading). I think he is getting better, regardless of what caused it, which is nice. He has really enjoyed greek yogurt this week :]

Captain's Log: Week 192

Before 2013 ended, I intended on making a nice blog entry about the year, in review. I had gotten about 2/3 of one written at work the week before New Year's....and then it got too busy and I never finished. Reading back on the post, it was kind of negative and rather personal for most of you guys to be interested in anyway. We will just say that 2013 was a rough and tough year for this little family. We were trying very hard to figure out our responsibilities--and balance--to family, full time jobs, chores, and general daily life as "real grown ups" for the first year. We had many joys (like Max and the cats joining our family, or going on two big vacations).....but many trials as well (like Zoey joining and leaving our family in just 14 short weeks, or finding out our boys have a life-altering dietary genetic disorder). In short, we are excited for 2014 and hope that we have the strength to face whatever hits the fan this year :]

One of my goals for 2014 is to blog weekly about the (hopefully) mundane going-ons of our family. When I started this blog last March my goal was to blog every couple of weeks--needless to say that epically failed. I hope that with a shorter time frame to write about that just maybe I will come closer to succeeding this year! I'm also hoping to take more pictures (and figure out how to download them from my phone to the computer lol), because I find that I tend to blog more when I have fun pictures to showcase an event.

So, starting next week I will try hard to actually make note of things that could possibly interest the public reading audience and put them on here. I apologize in advance if this whole blogging attempt turns into a long shpiel about me and my day .....I just happen to be biased about how cool my life is and don't see as much of my family on certain days to figure out what they are up to. But I'll try really hard to keep in interesting, unlike this paragraph ;p

Since I didn't really prepare--aka leave much time--to write this week, I will just share one 2014 goal per person with you, so you all can feel like this wasn't a waste of time to read! I know I already shared one, but another big goal of mine is getting back into the swing of going to church and the temple on a regular basis--it's crazy how working every other Sunday really gets you out of those habits, and I need to change that. Sam really wants to drop some weight and be super buff man lol, so hopefully he can find a way to get out and exercise more often (those goals are usually hand in hand right)? Jayson has just started potty training (hurray.....I think.....) so obviously his goal is to master that before his third birthday in July, whether he knows it or not haha. Max's goal is to get better at eating solid foods, so he can transition off that yucky formula in a bottle and into drinking milk from a sippy cup. I'm not biased in my children's goals at all now, am I?

Fun fact: the week number in my post title refers to how many weeks Sam and I have been married and hence started our own little family--I've seen it done before and figured it could be a fun number to work into the blog title. And the whole captain's log thing was something cool that I stole from another blog, thus doubly proving how uncreative I actually am haha.

Oh, and happy 2014 (we hope)!

Samantha's Genetic Testing!

I promised that I would write a post about my CSID genetic testing results when I heard back, and I finally got my results on paper today, so here goes the post :]

Back in September, Sam and I met with a genetic counselor here at the hospital where I work, and hence get our insurance through (St. Mark's in Salt Lake City). Her name is Megan, and she has been totally fantastic to work with, I honestly love her to death. At our first appointment, we talked about all of our family history with CSID and about our enzyme biopsy results. We explained our frustrations and why we were interested in genetic counseling. And Megan really listened to us. I felt like she honestly cared about our struggles, and understood why we needed to know our odds of passing on CSID. That was the biggest relief to me, to feel like someone in the medical profession cared and understood about how rotten and tough our lives can be sometimes! It's not that we've worked with real jerks before or anything, but I think sometimes the GI docs can get wrapped up in the clinical and aren't there so much to hold your hand through it all.....ya know?

Megan also did her homework. Before we even walked through the door, she was talking on the phone to the main genetic counselor at the University of Washington (the one lab in the country where they do the genetic testing for CSID) and reviewed with them about our case/enzyme levels/Max's genetic test results. Based on all of that, they were suspicious that I could carry two mutations on one gene (talk about rare!) and Sam potentially not carry anything. While I could never quite swallow the hypothesis that Sam didn't have any mutations, it wasn't the biggest stretch in the world for me to start wondering if I harbored multiple mutations. It would certainly account for why both of our boys came with CSID (the usual odds are 25% each time, and we either totally nailed the bad luck twice or had worse odds). It definitely gave me something to think about. After some time spent mulling things over/fighting the insurance company for coverage, we went ahead and sent out my blood work for analysis at the beginning of October, as I previously mentioned.

On my way into work today, I decided to swing by Megan's office to see if there was any word yet on my test results. I figured it had been about three weeks, and they were probably done by now. I also figured they faxed results over to my GI doctor's office, and as nice as they are, they are terribly slow about getting around to lab result phone calls if you aren't dying. So I stopped by, and Megan gave them a ring. The lady over at University of Washington confirmed they were done, and sent them directly to Megan's fax. So we waited a few minutes, and finally the fax machine kicked out the results. In a way, time seemed to slow down as she pulled the papers off the fax machine. Months of curiosity and waiting were about to be put to an end. I almost wished I was alone to process whatever it would be.......but at the same time, it was good to have a professional there to discuss the next steps. Anyway, here's a picture of the results:

And there you have it. I'm just a carrier. A symptomatic carrier most certainly, but just that. Part of me is relieved, especially because Sam is probably only a carrier too--at least based on his enzyme results. I am hoping that the doctors and genetic counselors think Sam should be drawn too, because I would love a confirmation of that. If we both are just carriers, we really do only stand a 25% chance of another CSID baby. Admittedly, there is a 50% chance of symptomatically carrying CSID, but obviously Sam and I survive on a regular diet with slight modifications just fine. And then there is the glorious 25% chance of producing totally normal CSID free offspring. I'm a little bit sad about the results, only because having CSID would have fit into my hypothesis of why both our boys ended up having CSID. But ultimately it really is good news that I only carry it.

I was surprised that I don't carry the Try975His mutation. That's the mutation Max has that they told us was a never before discovered mutation. I assumed, based on my research, that since it was in the isomaltase domain, it might code for more starch issues. And since I have more starch issues, it would make more sense for that to be my mutation. Plus, the Phe1745Cys mutation is one of the four most common and codes in the sucrose domain, so I assumed that would belong to Sam. But nope, I was once again totally blown out of the water with my hypothesis. Goes to show how you can think you're totally educated and smart about science, and it throws you for a curve! Since it is Sam that has the new mutation (and they hence don't have much of an explanation of how it affects people), I wonder if the reason his enzyme levels are so normal looking is that he possesses an adequate number of enzymes, but is missing out when it comes to transport of the enzyme or something of the like. Just getting into the molecularity there, and could clearly be so wrong with that hypothesis! But it's my current thought LOL.

Anyway, I will keep you updated on where we go from here. And as soon as we get our edited family pictures back, I will throw a few up on here. Be prepared for some serious cuteness from the boys :]

October = Pumpkin Patch Time!

Happy fall! Since (mostly) recovering from our nasty bouts of sickness, we've tried to get out when we have a chance and do some fun stuff :]

One of the most fun things we did a couple of weekends ago was visiting a pumpkin patch up in Farmington. Entry was free (fantastic for young families like us with short attention spans lol), and you even got to push your own wheelbarrow around to haul around pumpkins. That really turned into hauling a toddler around in the wheelbarrow, but hey, he enjoyed it so it was well worth it. The pumpkins were only 29 cents a pound, which wasn't much more than the stores at the time, so we escaped with five smaller pumpkins for under 10 dollars. Big win in my book. We were only going to get four pumpkins (one per person), but Jayson got really attached to a little baby pumpkin he saw on the way out, and didn't want to let it go. Since it was little and cheap, we went with it. But enough talk, here are some of the pictures I took:

The boys enjoying the nice weather at the pumpkin patch--5 pm was a good time to go on the weekend!

Jayson also enjoyed pushing around the wheelbarrow, as opposed to just sitting in it. It was practically as big as him though, so it didn't last for very long.

Three of our five pumpkins. I believe Jayson was excitedly pointing at a giant pumpkin in this picture.

Jayson and Max posing for a picture. I don't think Max has quite figured out how to smile on command haha.

Jayson and I being a farmer; just proof that I actually tagged along on this expedition!

 I'm not sure what type of strange gourd this was, but Max seems just as confused as Sam was to its name.....

Max didn't help us pick out any of our final five pumpkins (he's just not strong enough to pick them up yet) but he did enjoy getting to explore the mini-pumpkins since he could hold them all by himself. Ultimately, he preferred to chuck them on the ground, but hey, he at least had a chance.

We've also visited the zoo several times, but I will have to post those pictures once I figure out how to get them off of my new phone and onto the computer. We are going to attempt to take some family pictures this weekend as well, so hopefully in the next couple of weeks I will have some of those to show off as well :]

P.S. On October 3rd, I had my blood drawn to be sent out for CSID genetic testing. We are eagerly awaiting the results to come back (but will probably have to be patient for at least another week) and I will most definitely post about that when I know!

Looking Back: Sickness Follows Us EVERYWHERE!

Getting hopelessly behind here.....so we are going to slam 1.5 months into one post...........sounds good right? Really though, the only exciting things I can think of that have happened to us since then are primarily sicknesses. So enjoy the read, and be glad you weren't us!

Mid-End August
The boys had seriously only logged a couple of days in daycare before we got our first nasty bug. On Wednesday when Sam picked up Max, they said he had thrown up a little earlier in the day. I figured that they were talking about a large amount of spit-up since no one at the daycare seemed to be concerned enough to call us when it happened. Later that evening, as I was holding Max and bouncing him on the counter, he had the biggest baddest nastiest throw up ever. I felt awful for him (and almost as bad for me, because I was totally covered in butternut squash/soy formula throw up). But it only seemed to be a one time thing, and he was his happy self the next day, so we sent him off to daycare. We were being so naive. Not only did he throw up a few more times that day, he started having awful diarrhea...like even worse than uncontrolled CSID diarrhea. It wasn't contained by any diaper ever invented, and smelled like rotten eggs gone all wrong. Max was still drinking his bottles, but I'm pretty sure everything was running through him from one end or the other. It was terrible.

On Saturday (something like three days later) Max was still pretty sick. My sister, who hadn't seen him in days, happened to drop by, and mentioned that it looked like he had lost some weight. At this point, Sam and I figured we would just all go in as a family to Primary Children's and get Max checked out. No sooner had we decided this than Jayson totally barfed up his breakfast. Now we were two for two. So I took Max up to Primary Children's all by myself--that kid wore me out! For a sick baby, he was sure interested in being mobile....it made for a long five hour experience in a small ER room. To make a very long experience short, they ended up admitting him to the recovery unit for the night. He had to get an IV because he needed to get/keep in some fluids so his little body could heal. It was so sad to see my little baby with a needle in his hand, but I knew it was necessary. The worst part of the whole experience was that he couldn't eat through the night because they wanted his gut to get a break. And I just can't swaddle him the way Sam does, so he lacked that comfort too. It made for a long night with not enough sleep. I was very excited when they let him start eating that next morning, and especially when they decided we could go home around 11:30. He had stopped throwing up, and the diarrhea had lessened. What I didn't know was that the diarrhea was quite lingering, and wouldn't go away for several more days. But one day, about a week after the illness, he was just magically all better. That was seriously a fantastic day.

I thought after Max's ER experience that we were over the worst of it. Unfortunately, Jayson took a turn for the worse on Monday evening, and I ended up dragging him into the ER around 10 pm after I got off work. (Poor Sam, this was all on his birthday!) By this point I was feeling like a pro with this stomach virus, and the doctor recognized me from a few days ago, so we both agreed to just go the IV route. I was SO proud of Jayson--he didn't even flinch or cry when they put in the needle (they even had to move it around a bit to get in the vein). When the labs came back, they showed he was quite dehydrated like Max was, so we stayed in the recovery unit overnight. The actual night wasn't so bad, because once we got into our room, he slept through it. But right at 7 am sharp, he was awake, and so ready to be off the IV. We did several wagon ride trips and played with big boy legos to distract him, until the doctor came around and said he'd probably be good to go home. His sickness was about a day shorter than Max's in duration, but it still seriously felt like forever.

The ER doctor theorized that the boys picked up a mutation of rotavirus that had been going around, and I'm sure it was from daycare. All I have to say is thank goodness for immunizations to the common strain of rotavirus, because it would totally stink to have that around all the time! Sam got a little bit sick from this weird illness in the long run, but it totally passed me over. This may very well be the only occasion I can ever remember in which my family got sick and I didn't!!

Early-Mid September
I'd say we had a week of general healthiness before Sam got a terrible cold. Sam doesn't usually get sick, so this is saying something. It was so bad that he lost his voice for about four days. Probably because he had such a hideous cough! Max totally picked up on the hideous cough thing too. Especially at night. Oh man, it was a drag every time Max coughed so hard that he puked all over his pajamas and crib sheets. It was sad for him, and way not fun for us to clean up (particularly when Jayson tried to help out with the cleaning). I was sick with all the fun colored mucus stuff (and still am), but no terrible cough, to which I have been incredibly grateful. Jayson seems to only have a slightly runny nose, which is great all things considered. As I learned with our last illness, two kids really sick at the same time is CRAZY, so it was nice to only have one down for the count this time. May you all avoid this cold, because it is the longest lasting thing I have ever seen. Almost one month out we still haven't entirely kicked it.

Mid-End September
My sister's moving date to Idaho was Saturday, September 20th. My main job in this was to watch the 7 kids the Friday night before, so the boys could move the Penske up that night and Autumn could clean the old house. Plus, I had make the five hour drive up there the next day to fetch my husband and check out their new house/town. This was a daunting task after 10 hours of work anyway, but then sickness made it way worse. My eyes had been burning all day (Friday) at work, and I thought it was just because I was really sleepy. Oh no. My right eye just kept hurting more and more as the day wore on. I went to bed around 11 pm and woke up with Max about 1:30 am. In that short 2 and a half hour time window, my eye made so much goop that it had sealed itself shut. Pinkeye had struck. I'd seriously never had pinkeye in my life before, so the timing was hideous! I had to drag myself down to St. Mark's ER at 2 in the morning so I could get a prescription for eye drops. Then I had to drive to a 24 hour Walgreens pharmacy at 3:30 in the morning to obtain said eye drops. 70 dollars later, I had what I needed.

I crawled back into bed around 4:30 with my cranky toddler (I still don't know why in the heck he thought it was time to wake up when I got home) and crashed until 7 am. Then I got two kids and myself ready, threw together our bags in a frantic hurry, and hit the road by 8:45. You can call me wonder woman now LOL :] Thank goodness my eye remained open enough (and not in terrible pain) so that I could safely make the drive. But man, I hope I never get pinkeye again, it was a nasty experience!

And just when I thought we couldn't get any sicker, we found a weird rash all over Jayson's bum, legs, feet, and hands on Sunday afternoon. It was really the last thing I wanted to see. I'm thinking hand/foot/mouth disease. Hoping he doesn't spread it to all his friends at daycare. At least it isn't bothering him all that much.......

Just for fun, since the post was so full of depressing stuff, here's a super funny picture of my kids being bad children/playing in the kitchen stuff--seriously, Jayson knows way better, and is already trying to teach Max how to misbehave!

Illness Update: Sam's cold is almost gone, hurray! Max is still trying to kick the nasty cough, but it hasn't made him throw up in like a week. Now we are just dealing with two teeth trying to come in lol. My pinkeye is getting better, and my cold hasn't gotten worse. Jayson's rash hasn't gotten worse since we discovered it, and his nose isn't any runnier either. Here's to hoping October is healthier for us!!!