Sunday, August 24, 2014

Big Things!

So first off I have to apologize for the lack of good pictures from these past couple of weeks! I've been sitting here trying to remember what we've done so I can blog about it, and I thought that maybe my phone camera could help jog my memory. No such luck. Apparently I was having SO much fun that I altogether forgot to take pics.....or maybe I was just too busy to be the one behind the camera lol.

First off was Max's post-surgery swallow study/follow up doctor appointment on August 12th. Unfortunately for me, his swallow study was scheduled for 12:15 in the afternoon, during my on week. Keep in mind I work graveyards, so this is right smack dab in the middle of my prime sleeping time. It's like this EVERY DARN TIME too. I've had a lot of people ask me why we don't just reschedule for my week off. Answer: We have learned the hard way, there is no rescheduling an appointment at Primary Children's unless you want to wait many more weeks for the next opening....and waiting those extra weeks really delays treatment (or getting an answer to your issue in our case). I suppose I could have stayed home and slept, but I was far too anxious and worried that I would miss something really important by not being there--getting the report of the appointment from Sam is just not the same as being able to ask the doctor himself questions, you know? So now you know why I drag my butt to every last appointment, even though it's in the middle of the night for me lol. Anyway, getting on the the appointment.....Max was kind of a stinker at first during the swallow study. He totally refused to drink from his sippy cup or regular cup and instead just had hysterics. I was getting concerned that we wouldn't get any results from the swallow study if he wouldn't swallow, so I suggested they do the one thing that Max always loves: liquid in a syringe. Thankfully that calmed him down enough and forced him to swallow, so they could do the study. The conclusion they came to is that he still is aspirating on thin liquids, but does pretty well on nectar-consistency thickened liquid. The speech therapist's advice for us was to go back to thickening his liquids and use a straw sippy cup, since that would force him to drink slower and give him more control over each swallow. She also told us we could give him regular water in the sippy cup for practice (but let me tell you, after trying that I have to disagree with the theory, because he just sounds awful as ever after drinking it). Her only theory for why Max sounded poorly when he eats kind of agreed with mine: a combination of excess saliva production and the fact that all foods contain some degree of thin liquids in them. Sam asked how long they thought it would be until Max was better, and the answer was kind of depressing. Based on the fact that he is 18 months old (most kids grow out of dysphasia by a year or so as they mature) and did not make great strides following surgery, they predicted he could be 3 or 4 before things really start to improve. I think part of that would be the fact that if he really needed speech therapy to improve weak muscles--and I actually suspect that he will based on his trouble saying certain letters already--he has to be old enough to have the logic to cooperate with us and say words on a consistent basis. Not much of our conversation really gave me much hope; I actually just wanted to go home and bury my head under my pillows at this point, and skip the whole doctor visit (figured it wouldn't be much happier ya know). Plus poor Max tripped and hit his head super hard on the wall while we were having our post swallow study consult. It was not exactly his most awesome moment ever lol. When we visited with the doctor next, he was kind of baffled by the fact that Max had made some improvement but not nearly the amount the we were expecting. He decided that he wanted to go back in and check out the surgical site, to make sure that everything had healed correctly and that nothing else was amiss. He also wanted to do another bronchial lavage to confirm that Max is not getting food in his lungs. I'm not exactly thrilled about my little baby undergoing his fifth or sixth round of anesthesia (I've seriously lost track by now) but I know it's necessary. And at least this time, it's all on the insurance company's tab :] So tomorrow morning I get to stay up way past my bedtime and go through yet another fun procedure with Max at Primary Children's. Those people must love us (or hate us haha) by now.

On the more uplifting side, I actually did the women's triathalon I signed up for! Back when I signed up in March, I had these super great intentions of training up for it....and then Max got really sick. You can guess what happened to training. I had pretty much dismissed the idea of completing the triathalon until about two days before. This little voice inside of me was like "JUST DO IT!!" so I told Sam I was going to give it a go. I think I wanted to prove to myself that I could do something hard, and wasn't a quitter. My goal was just to cross my butt across the finish line, and I would go however slow it took to do that. Of course I was very nervous on the morning of the race (not having trained one bit will do that to you!), but a bigger part of me was super excited to complete the task ahead: 300 meter swim, 11 mile bike ride, and 5K run. To make a long story short, I became a triathlete on Saturday August 16th at 10 am or so! While there were parts that were difficult, and I pretty much just fast walked the entire run, I overall enjoyed myself and would totally do it again. The only thing I might change (besides training a bit) is getting a softer bike seat....my tush muscles were pretty sore from sitting on the hard seat for 11 miles lol. I may have finished dead last in my age division, but I'm pretty proud of myself for not being a quitter! I am also immensely proud of the fact that after doing that big old race, I went over to my mom's house and we all had lunch and went to the planetarium downtown. The kids ran wild at the planetarium, and I was actually able to keep up with them. No sitting down and taking it easy for me!

Pre-race selfie in my new green top :] You can almost see the arm markings they gave us the day before, that ended up being the biggest pain in my butt to get off the next day!

My official race time (my number was 677 if that helps you find it faster)! I will admit I was a touch disappointed that I missed being under two hours by just a few minutes, but can't complain overall. Maybe next year I can get in under two hours!

The day after my big race we were schedule to take family pictures. Sam and I had to spend a lot of time scrubbing my race number off my arms so they wouldn't show up in our pictures, and we actually both ended up wearing pants instead of shorts because we couldn't get the number off of my leg well enough! Maybe not the best planning on my part, but luckily that was the only issue. Our photo shoot went fantastically well all things considered (nobody threw a giant fit and it was at 3 in the afternoon lol) and the location we shot at was absolutely beautiful (Mueller Park in Bountiful). Plus our photographer was amazing and gave us quite a steal of a deal on the session: 50 dollars for the session and 30 prints. I highly recommend going with Jenny Fowler if you are looking to get pictures done, she was great! We have to wait another week or so to see all of the pictures, but she sent me a sneak peek a few days ago, and seeing as how it has her watermark on it still I think it's probably kosher to post it on here: 

I was rather proud of the outfits I ended up throwing together the day before pictures, and am super glad that we don't just blend into the green background (yes I was worried about that). This would pretty much be perfect if Max didn't have that funny sneer on his face, but you can't expect too much out of an 18 month old on picture day right? He was upset that we wouldn't let him eat the dirt and leaves lol.

Unfortunately for the next two days after our family pictures I was really sick with an upset stomach and a cold. Didn't exactly make for the most fun second half of my week off. However, the day before I went back to work, some of the ladies I used to work with/still work with and I did a play date for our kiddos at the Children's Museum in SLC. All of our kids range from almost 1 to almost 4, and boys outnumber girls 5 to 1, so we're kind of in the same boat of life. Plus I love hanging out with all three of them, which helps too! I had never been to the Children's Museum (and neither had my boys) so I didn't really know what to expect. I figured that my kids would be entertained for an hour or so, and then I'd have to figure out what to do with them for the whole rest of the afternoon. I was really pleasantly surprised when my kids played there for a good three hours and I had to drag them away from the place! I think my boys' favorite part was the Bob the Builder exhibit, which unfortunately is leaving the museum in week or so :[ Consequently, I talked Sam into taking them back again on Saturday, and they still loved it just as much as the first time. I'm talking the kind of love where Jayson whacked his head on a toy and started bleeding, but still didn't want to leave to be cleaned up lol. Thank goodness for our free guest passes (I think we have enough to go two more times as well) so we don't have to pay 20 bucks each time we want to go! Although, if the kids continue to stay as occupied with the place, a membership might be well worth it. 

There is one other big thing going on in our lives. I applied for a MLS position down in Boise last week, and will hopefully hear back with a job offer on Monday! I don't know for sure if they are going to offer me a job or not, but they did seem to really like me, so I've got high hopes. There are a lot of complicated reasons for us making a big move, and I'm still trying to sort through them all, so I think I will save the long winded explanation for the next blog post I make. 

And that's our lives as of late! As always, more fun information to come next time :]

Monday, August 11, 2014

Life Can Be Really Good.....And Really Bad

Time for another bi-weekly update :]

I GOT A NEW CAR!!! Just a little bit excited about that, in case you couldn't tell haha. We decided that having a van just wasn't working out for us, in terms of commuting miles and gas prices.We were putting at least 1200 miles a month on the van, and were paying close to 300 in gas. It hurts my wallet just thinking about it again! Plus the van had just turned over 130,000 miles and we knew it was getting really close for our last chance to get a good trade on it. As good timing would have it, my friend and work cohort Cortney was in the market for a van before she moved away to Washington, so we sold it to her and her cute family last Wednesday. It was a little bittersweet though; we've had that car since Jayson was just one month old, and have made a lot of memories with it over the past three years! I still get confused when I go home and it's not parked in the garage lol. However, practicality won out, and now the van gets to make itself some new memories with Cortney's family!

Not a great picture of it, but here is my 2013 Nissan Altima, and yes, I LOVE it! I get about 500 miles to my tank of gas (admittedly it is an 18 gallon tank) which fills my heart and wallet with joy. It has lots of nice new car goodies that I'm still figuring out as I go lol. The only downside  I've discovered so far is that the car didn't come with an in-car DVD player like the van. To fix that, we purchased ourselves a twin-screen DVD player at Walmart, and now we're good to go.

Jayson enjoying the new car!

Maxwell enjoying the new car. I've really got to steal back my window shades that I left in the van, because my poor kiddos have to squint in the sun all the time now. Not to mention that those sunglasses only stayed on Max's face about five seconds longer than the picture--silly boy just won't keep them on yet!

We went up to Idaho last weekend (Friday through Monday) to visit with my sister's family, and as usual, we had a blast! We had a little birthday party for Jayson, which he thought was fantastic fun. Because it was a pirate theme party, all of the kids got to go on a treasure hunt throughout the whole house to find one of Jayson's gifts (which actually was in a treasure chest in case you were wondering): smarties, sugar free chocolate, and Capri Sun pouches. I wanted to get pictures of the kids treasure hunting, but they were too quick for me! We had a hot dog/BBQ style dinner, cake and ice cream for dessert, and balloons/decoration galore. After dinner Jayson got to open another present, which was a doctor's kit! In case you were wondering, the most argued over item was the band aid that could be worn as a bracelet.

Didn't realize that the picture was sideways, but can't really fix it now. Oh well. A shot of the cake that we all (minus Jayson and Max) enjoyed, courtesy of Walmart. My boys got to have a special chocolate cake that Sam made for them, out of cocoa powder and coconut flour (among other things). Max was crazy for it, whereas Jayson was kind of too excited with all the party going-ons to eat much.

Our three year old pirate! He got to take that hat home with him, and is still obsessed with wearing it around. It totally cracks me up :]

All seven kids enjoying their dinner. As I recall, Max ate like a beast at that meal, while Jayson ate a small amount. That's kind of the norm at our house lately--I just hope it doesn't mean that Max is going to grow out of his clothing/shoe size yet again!

Here are a few other random pictures from when we were in Idaho:

Funny story here. When we stay with my sister, Max still shares a room with us. This particular night I went to bed at about 6:30 because I had a bad headache. Max got put down for bed about 7:30 (according to Sam), but felt he wasn't tired yet and needed to wander around the room. When he finally did get tired enough to want to sleep, he was too worn out to climb back into his own bed. So where did he choose to sleep? Right on top of me! I was so sacked out that I didn't even notice either. When Sam went to bed around 11, Max finally got moved into his own bed!

Here's Maxwell-tina! He's not so sure how to feel about the headband, which I guess is a good thing. I just love his big dark-green/brown eyes and reddish hair, isn't he the most handsome thing ever?? Disclaimer: I could be just a little bit biased on that last sentence :]

As I'm sure you notice in the couple of pictures Max has in this post, he is tube free! Sadly, I'm not really sure that this means any progress for us at all. The big reason he is tube free, and has been this past week, is because we just cannot deal with it any more. Max's face was ripped up to the point of bleeding, so he kept pulling the tube out in an effort to get the painful tape off of his face. No matter how much protective stuff we put on his face, water would get in underneath the tape, and consequently cause the chaffing and bleeding. Also, the tube that we did have for him was getting old and difficult to put back in (they are only good for about a month and we had already surpassed that time period). When Sam went to get a new one from our tube supply bag, it turned out all the ones the insurance company had sent us were the wrong size. And this realization came to us the morning we were going to leave for Idaho. Awesome huh? In short, we decided that we had to call it quits with the tube. They are really only intended for short-term use, especially in kids so young like him, and we had already been doing the tube feedings for longer than the doctors had originally planned. Max has hated every day of his tube feedings as well, although I'm sure most of that is because of his no liquids by mouth restriction. It's so hard to explain to him why his big brother can drink from a cup, but he can't. So of course he screams like a wild banshee whenever we say no. That's super hard on us psychologically, always having to tell him no. It seriously wears you down to nothing after 10 weeks. It would be lying if I said that Sam and I have weathered this like pros. It has honestly been the hardest 10 weeks of our marriage, and quite possibly our lives.

After a short dilemma about what on earth we were going to do with the situation, Sam and I decided to let Max have liquids from a cup or his straw-styled sippy cup until his follow up appointment on August 12th. We knew that if we rushed him into the doctor and said we were done with the tube, and that he needed the surgery for a stomach tube ASAP, they would have just put us off until the swallow study anyway. Sad if you ask me, but entirely true. The improvement in Max's general attitude, especially at meal time, has been huge. Not perfect (he is a toddler after all!) but better. Tragically we as his parents do not really feel better. It racks me with guilt every time I hear him choke, cough, or worse yet NOT do those things, and just sound gunky and wheezy. One night while we were in Idaho (sharing a room) and he was sleeping, he actually sounded so bad that I about took him into the emergency room. The only thing that stopped me was the fact that I knew we would have to drive the half hour into Boise to find anywhere equipped for pediatric patients with his strange needs (I assumed they would want to put a feeding tube back in him). Not to mention he seemed to be sleeping just fine, and wasn't any strange shade of color. So instead I had to leave the room and spend a semi-sleepless night on the couch, because I couldn't stand all of the terrible noises he was making. 

Let me tell you all: this is NOT the kind of life you want to be living with your young toddler, and it is especially not the kind of life you want to be living feeling pretty much alone. I am tired of the doctors doing practically nothing for Max, and putting us off "until next time". Their laid-back attitude about the whole situation may be them just trying to be cautious and careful, but it rubs off as cavalier and uncaring when you have to live with the problems day in and day out. I understand that they are probably doing their very best and can only come up with so many ideas, but the lack of communication that leads to delay in our treatment is hurting my son, and this momma bear is tired of watching her baby hurt over and over again. I am also tired of living 5 hours away from the only people that could offer us (or at least me) backup and mental relief. Without blabbering on and on about it, I am just really burnt out of my life situation right now. Don't ask me what needs to give or what on earth is going to happen, but something has got to change in the good news direction. Literally, only God knows what and when that is going to be, but I am so ready to reach that point and find out!!

Anyway, that's about all for this time. I'm sure that I will have some sort of update on Max after his Tuesday appointment. And hopefully my coming week off will have some more fun things for this family to do!