Monday, October 22, 2012

Perfect Monday

Today was a good day. I have new swimming gear, so my workout this morning was a blast.

I was feeling energetic and ready for the day (although a little aprehensive as I had 3 stores to hit shopping this morning and the boys had been up since 5am) we offered to take Evan to work. There was a massive pile of leaves from the windy wind (ever seen Dora) this morning.

After letting Kyle know all the things we had to do, we had an unexpected surprise: new children's carts at Smith's!

Yes, he did run full speed into my ankle three seconds in. But after showing him how much skin he removed and telling him emphatically how much that hurt, he stayed a good distance (some times too much). He told me he needed to go potty instead of peeing his pants. They were fully stocked on my soy milk and we found..... Baybee Punkins!!!

Aiden would not leave that thing alone. It consoled him because he is not responsible enough to push a mini cart. He was distraught about leaving the baybee punkin in the car at every other stop.

Kyle got a giraffe gourd (he picked that one) and they also each got one little mini white pumpkin.

We bought our Halloween candy. We went to Costco and looked at all the new Christmas toys with no incident. It did get a little trying at the end when I dropped/lost my Costco card while in the store. Luckily, it was replaced no problem.

We got things unloaded and put away. There were just so few melt downs and issues today. The boys played well together. Aiden even took a 3 hour nap! And Kyle had a great length of quiet time. It was so blissful that I got more done on a sewing project while watching a WHOLE movie.

For our FHE: the boys played in the car while Evan changed a brake light. I restocked our soy milk.

Then Evan joined in on the action. Pretty soon we were all inside our space ship going to Mars.

Kyle and Daddy hopped in the back seat. Kyle had Evan buckle in his "invisible friend." It was the first time for that...he is a boy, he is a robot boy, and there was some other defining characteristic. He came to play and drive the space ship too.

After that we took an hour long walk in the gusty wind, with the blowing leaves, but warm temperatures (Evan and I held hands the whole time---which hasn't happened in a while). We saw several neighbor friends and had nice pleasant chats with all of them. To top it off, we grabbed Zoie and went to Red Robin. I found my new favorite dish there---Ensalada Platter. Delish!

It was just a gorgeous day, that was ordinary, perfect, and so fabulously balanced with productivity and sweet family moments. My boys righted their previous fussy, whinny, horrific behavior as of late....and we had very little medical drama (although still a little--it is our family that we are talking about :)-

On days like this, I can imagine the celestial kingdom.

Sunday, October 21, 2012

Out of the Mouth

Kyle has been hysterical lately. What he comes up with stops me dead in my tracks so frequently and I wish I wrote more of them down, maybe I need to start sending myself text messages when it happens.

He has started to sing to himself and Aiden songs he must be learning in preschool (cuz I don't know them). I don't know the words except one ends in a loud BOO! with jazz hands.

Kyle keeps asking when we can move to China. Today he said, "we should move to China and live with Ekitzel. We can be a big family."
Me: I like that.
Kyle: And when we get there we should get another daddy.
M: Like for Ekitzel.
K: No. Like Daddy should stay here and live with another family. And we'll get a new Daddy.
M: (Trying not to laugh). No, Daddy is part of our family. We can't go anywhere without him.
K: Okay.

At our last feeding therapy appointment, Helen, our therapist, said that he could call and leaver her a message each time he eats a new food.
The next day, I said to him, "Look you ate cabbage, tofu, lettuce, and peanut sauce. Let's call Helene and tell her."
Kyle: "No, I want to email her, not call her."

One night before Nate left, he spread his change from his pocket on the floor outside the boy's room. He made me promise that I would tell Kyle, Nate pooped and it turned into money over night. I did promise. In the morning:
Kyle: Mommy, there is money on the floor!
Me: Oh yeah, Nate pooped and it turned into money.
Kyle: I think, Nate put his hand in his pocket, got the money and put it on the floor.
Me: You're probably right.

He calls the University of Utah the "football school." He tells everyone that "when I get big, I'm going to the football school to play football." He sees the signs, clothes, bumper stickers and point the U out to me everywhere. He is slightly obsessed :)

My son is also wise beyond his years. He said to me two days ago, "When are we going to take this out [referring to the button] and not put a new one in and have the skin grow back?" I asked him where he had heard that, and he didn't know. I don't know where he got that idea, but he is dead on in terms of how the process works.

Adventures in the Fall

This is just a conglomeration of pictures from the last few months, random moments from our daily lives.

My mother sent Kyle a game for his birthday. It is an Eric Carle game. It has dominoes, bingo, and match all in one game. It is high quality and we just love it. This was our first go, and even Aiden can play.

She also sent a paint set (see left in this picture). Kyle is very into painting and and being crafty lately. I don't love the design but it is still fairly cool and it is an all in 1 system which is nice.

Aiden gets to water color paint because he is somewhat messy with normal paint and it is not worth his short attention span :)

We took a beautiful fall stroll around Silver Lake up the canyon. Elliot, an old roommate of Evan's and a close friend, was able to come and enjoy the leaves and antics of small toddler boys. Kyle did not want to participate in pictures that day.

We bought some Costco sushi for a quick meal added to our leftovers one night. Neither of the boys have enjoyed sushi in the past---and to be honest I did not think about the fact that it had cream cheese in it until several hours later. However, with only 1 piece of sushi each, we avoided any major reactions. And they got to experiment and practice with chop sticks.

Because Evan and my official marriage anniversary is Leap Day, we don't have a huge celebration most years. Just another normal dinner date. But it also allows us to celebrate other things more fully--our sealing date, our first hangout (we've been together ever since then), and other special dates. Because my way to show love is gift giving and Evan is to get gifts---he got new head phones this year for the celebration of 5 years of being a couple.

Aiden models them frequently. And they look precious on him!

This was my vantage one day during some family bonding while watching some TV show.

One day, we drove to visit Nate, who was not there. His amazing amount of leaves was....he has a tree that basically vomits them in the fall. Aiden is obsessed with leaves right now. We have a huge pile that has been blown into the corner of our driveway (we still have half on the tree, so I haven't raked yet :) every time we go to get in the car he runs through the pile. Multiple times, until I'm chasing him to get him in the car. It is just the biggest joy in his life right now. 


Saturday, October 20, 2012

Blood in the Corn

Yesterday, we went with Evan's mom and sister, Zoie, to Cornbelly's down at Thanksgiving Pointe. I have never been. It was a lot of fun, although even with our $2 discount, it was not cheap. It seems like most of the good corn mazes, pumpkin patches, and other outdoor October activities are down in Utah County or way up north.

They have a ton of stuff to do like a trampoline pillow bouncy thing, bounce houses, mazes, corn/pumpkin cannons, hay rides, haunted stuff, lots of play structures (shaped like tractors, trains, castles, and arks), and pig races.

We did the pillow bounce thing first. Zoie came with me, while Mom and Evan sat and chatted on one of their millions of benches.

Aiden loves to run and then just throw himself down. He doesn't do a ton of actual bouncing.

Kyle really just wanted to slide down the side.

Then we did the maze. This year it was shaped into pick your president with a trail through each one of the candidates heads. There was a little bit of dissension on which head to do, but eventually the correct candidate was chosen (by the majority, as it should be) and we were off. Even though this was really the reason we came, it was the lamest thing we did. The corn was all dead and not very high, it was walked through in lots of spots that weren't trails, and the exit was the same as the enterance. It just seemed kind of pointless. I think if the kids were older, it might be more fun in the dark, but I could see Evan's head over the corn and I am not that tall.

There were also two instances of blood. Kyle cut his finger in two places on a corn stalk. Aiden tripped and busted his lip. Lovely, right.

Then we watches some pumpkin cannon and corn blasting. Aiden screeched and whimpered every time they went off. Evan slipped on some gravel and cut a pretty good scrape that actively bleed so we had to get an employee for some bandaids. We walked around and looked at some cool carved pumpkins in a tree like display and made our way to the hay rides with some play structure time thrown in as we walked and waited.

I was the only one who really wanted to go on the hayride and the kids did not care. Kyle only looked at his map and Aiden fussed the whole time (much like the whole rest of his life as of late). And Mom told another mother that her child would most likely not get e coli from the dirt (based on a true story of a kid on her unit at the hospital). Mom was horrified at how dirty the child's hands and face were. I was horrified that she told another mother that. I bet the other mother was horrified that she was being critiqued. I think everyone was fairly uncomfortable after that, it was a funny awkward situation :)

All in all:
3 incidences of blood
2 fussy, crying children when we left
1 funny, awkward hay ride
Lots of priceless family time

Red Paint

Last Friday, I was trying to clean my house. Hopefully, we all know where this is going because every time we try to be good mothers and try to be productive, right? Oh no, it's only me....well I'll still share my story.

So I am upstairs cleaning my kitchen, vacuuming, and mopping the kitchen. I go downstairs to change some laundry and put this away and notice that Aiden is now able to get into our third bedroom (where my craft stuff and their craft stuff is). He has gotten out our paint station and the paint. I put it away, grateful that he didn't open the bottles. Thirty minutes later, Kyle comes upstairs. He has paint on his hands and pants. I realize that Aiden had taken the red paint bottle into the play room and I didn't notice it missing when I put the rest away.

I was not very angry. Although his reasoning was, "I wanted to know what was in it." That excuse did not hold water, he knew what was in it.

Then I found out, it was not only on the Costco sized bear downstairs, but also on my carpet. I thought maybe a few drops, but in reality it was a huge amount of paint. I was livid. After cleaning with resolve and water for 30 minutes it looked like this....

I sent out a desperate text to all the mother's of little boys that I My landlord is vicious and with a huge pink stain in the middle of the carpet I knew was going to be a big part of our massive deposit.

A good friend from down the street brought me some oxyclean. After saturating the spot and leaving it for about 45 minutes, I re-tackled the cleaning. It was tedious work, but it is now just a slight slight tinge of pink if you know where to look. Hopefully it will fly under the radar at checkout.

I was so livid. I told Kyle multiple times that I was extremely angry at him. I even told him that it would be a good idea for him to stay upstairs away from mommy while she worked on the stain. She was too angry. However,  I never raised my voice or yelled at him. That was a huge step for me. Needless to say, this project ended up taking my cleaning time.

When I was done, I had Kyle empty his piggy bank. It has about $30 in it that he has been saving for Legos. I had him put it in another jar to give to me and Evan because he was going to cost us part of our deposit and for the time it took to take care of it.

I felt very mean when I was doing that, I still wonder if it was the right punishment. I haven't decided what we really will do with the money, but I thought it was a good learning experience for him. Bad choices cost. When we were done, he asked me very sweetly, "are you still mad at me?" I told him that I wasn't, which I honestly meant, but that I did want him to know how serious what he did was. Unfortunately, that was the beginning of what has been a very long week with that kid.

Anyone have any good parenting advice? Kyle goes through weeks of fabulous, kind, polite behavior and then through weeks of obnoxious, rebellious, rude, demanding, crying, wetting his pants, aggressive (he has drawn blood on Aiden several times this week) behavior. I just don't know what to do during that time, because I know that he  has it in him to be good. He knows the difference.

Some Shopping, Mostly Playing

During Evan's fall break, which is seriously the best thing ever, we took an afternoon to go to the new sporting goods store in Sandy, called Scheel's.


They have a Ferris wheel in the middle of the store. Does it get any better than that. So we all went, which I believe is the first time for either of the boys. Evan, Nate, and Kyle went in one car.

Aiden and I went in another. Aiden gave me multiple heart attacks, because I swore he was going to slip under the bar and out. He tried very hard one time to do just that.

They also have several game stations around the store---like a shooting game, bowling (or roller ball), and video game simulation sports. They also had several "photo booth" opportunities stationed around the store.

The store had everything sports related, a food court, and the weirdest part was the wax figures of dead presidents (think Lincoln) stationed around the store who would move electronically and talk about history related incidents. Strange, right? It even had large sections dedicated to both BYU and UoU gear, and other sports teams. The boys favorite part was the McDonald's like play land (that was easy for a parent to climb in to get them out) and the huge fish tanks.

It was an awesome outing. And we all enjoyed it tremendously. 

P.S. Evan and I have an old friend, Nate. He was a roommate of Evan's before we got married, a witness at our wedding, and just a good friend. He hasn't been around much while we've been living in Salt Lake because he was gone in Alabama for two years training to be a helicopter pilot, and then other guard related training. Recently, he has been around a lot more. Over the course of the summer, Nate started coming to dinner and FHE, then he started coming to more dinners during the week. We have now gotten to the point where Nate eats more dinners with us than without us. It has been a joy for all of us. The boys probably love Nate more than Evan and I. Aiden is in the habit of asking Nate for things like candy and desert that he knows he won't get from us.

This is proof of how much a part of our daily family life Nate is. He is laying in Evan and my bed with Kyle and Aiden watching TV after bath and before bed :)

Good Night, Sleep Tight

Kyle recently had a sleep study. There is only one pediatric sleep specialist in the state of Utah. So we have known this was coming for awhile, as we had to wait 6 weeks for an appointment and then another 4 for his sleep study.

I've never seen so many leads on anyone. He had 12 on his head alone, not including the two brain wave leads on the back of his head. He also had leads on his legs, chest, two belts around his trunk, and finally an oxygen like tubing under his nose to measure his breathing. There were four different monitors in the room to measure all the data and 1 camera to record his sleeping. They gave him a double bed just so there was space for him and his lead boxes.

Unfortunately, with the study report, we now have another diagnosis to add to his list, but with the right medication that we are working on titrating, we might not have an overly exhausted child regardless of how much he sleeps. Added to that, we also found out that this disorder tends to run in families (I mean, why wouldn't we have another diagnosis like that). Aiden is up next for a sleep study because he is following in Kyle's sleeping patterns.

The one thing that I have learned is that Kyle is a guinea pig.....a true guinea pig. He is my anomaly, he is my tester, he is my pin cushion. I some times wonder if Aiden would not be as seemingly "healthy" as he is, if it weren't for Kyle. Aiden certainly owes Kyle a debt of gratitude for making his childhood a great deal easier. 

Super Heroes Dentists

At the beginning of the month we had a dentist visit. Kyle had a lot of anxiety about going...a lot. He has had a drastic increase in his anxiety levels. I discussed what was going to happen in great detail, recounted the previous experiences, and made it clear what behaviors were acceptable and what was completely out of the question. In the end, he did fabulously and we reinforced the memory that nothing bad happened and all the loot that he got. I am also super glad that we got the one private room because Aiden would not stay still :)

Watching the Toy Story movie on the ceiling while waiting.

After we came home he was able to dress up with the new pieces they added to his super hero get up......have I mentioned that we are all going to be super heroes for Halloween----it is a big thing in our house right now!

Tuesday, October 2, 2012

First Day

Kyle had his first day of preschool----

I am a horrible mother---I didn't put him in cute clothes (or even a coordinating outfit--maybe because I didn't dress him), I didn't have time because we were rushing to pose him well or write a cuter sign. But we did document it. And he was excited. 

In reality it has been a whirlwind 10-ish days preping for this. He was put on a wait list in March. When school started,  I thought he just wouldn't get in. Then we had surgery and several weeks of recovery and then we know we are moving from this house in March and he won't continue. So I thought, oh well! After his surgery though we got a call that they had a spot and it snowballed from there. 

So he started today. Neither of us remembered to say goodbye to each other---we were both distracted. The only one who was upset was Aiden, he wanted to stay. Aiden was also upset when we picked Kyle up, he wanted to stay and play on the playground. So I think that it was hardest on Aiden :)

There are several things about how the school is run, that I am not jumping for joy about. But I think that is because I don't like being told what to do and I am not really a joiner. (are you all surprised). They are so far nice enough, it fits our budget, they will work with his medical needs. But it is affecting his ability to nap and they treat him "special."

They talk about his "special snacks," his "special cupboard," his "tricky tummy." Honestly, I know they want every child to feel special---but I want him to be less special. I want Kyle to be normal to blend. I also feel uncomfortable with losing control---my control

It is my control. I am the one who has taken him to every doctor's appointment (except one where I was having a baby---literally---see this post). I am the one who has consulted on every procedure and test results. I have read the chapters of medical text books that our GI doctor has mailed me. I have research clinical trials. I have filled every prescription. When he breaths in his strange pain rhythm, I know. I have fought for him to get the right drugs when he is in pain. I have held him when he has screamed and writhed in pain. I have charted every intake/output for months. I have taken the g-tube class. I have changed every button. I have been there every time he has been under anesthesia, every scope, every same-day surgery, the traumatic ng tube, the trips to the ER after the g-tube, reminded Evan of every dosage of every medication when I am unable to do it myself.  I have spent every night in the hospital that he has. I have fixed every special meal to take to feeding therapy. I have gone to the nutritional clinic for a 3 hour appointment. I have filled out every form, every medical history. I have picked up every order of his special formula (except one) and placed every order for his home health supplies. I have made every call to the insurance company, scheduled every medical appointment. I have researched recipes, food plans, food triggers, read labels. I pack extra snacks in my purse everywhere and consider the menu at every event and restaurant. ME! 

And I don't say that to be proud or toot my own horn, it is my job as his mother (Evan takes all my venting phone calls, all the wrestling, math teaching, Wii playing, gives all the blessings, and holds me up so I can fulfill my role. Sometimes Evan even carries me while I carry Kyle).

When my pediatrician saw him for his 4-year checkup he said, "I know it has been quite a project, but he is growing." That child, that boy, that is my project. It is through my diligence, attentiveness and sheer will that has gotten us to this point. I have taught him about his food trigger to dairy (which he tells everyone--although he often has to be reminded if he can eat gluten or not). I have taught him the foods that make him sick. He is my good kid that knows to ask before he eats anything away from home, he knows that it is no big deal to eat things different from others. He is smarter than a "tricky tummy" answer. 

That is the control I don't want to give away. I want to control his health, his food, and how he is treated about it. That is what makes me uncertain, sick to my stomach, and just overwhelmed by a feeling of dread. He is a brave boy. He deserves all the credit for putting up with it. He deserves all the support for the chronic pain, discomfort, and confusion. He is strong. He is capable. He is amazing. I have been blessed beyond belief to have him. 

Monday, October 1, 2012

Nissen Fundoplication

Two weeks ago today, Kyle under went surgery for a nissen fundoplication. This is a procedure where you wrap the top of the stomach around the esophagus this reinforces the lower esophageal sphincter and stops his reflux. His reflux was no longer being controlled by the maximum antacid medication. In August, on his yearly scopes for the first time we saw damage to the esophagus and stomach in the form of chronic inflammation and the beginnings of ulcers.

It was only a two day stay in the hospital; however, it is the most intense, invasive, and painful procedure that he has had done. It causes such internal swelling that until days ago, Kyle was only eating soft food like yogurt, ice cream, and smoothies as much else caused intense pain in his esophagus. He was even on round the clock oxycodone after release from the hospital for several days. 

This picture was taken in the playroom at Primary's. The OR was running 90 minutes behind. Kyle for the first time was interested in the video games. He played every time we went to the playroom---and we even had a PS2 in our room, although it wasn't working and lucked out by scoring the only Xbox on the floor. We do play Wii Sports at home, but nothing more than that---so playing Lego Star Wars and Disney Cars was a huge treat for him.

In recovery.....he was quite a sleeper.

This was on our way to the playroom on Tuesday morning, the first time he was out of bed since the surgery. He had been waiting for about 4 1/2 hours for the room to open and his meds to be fully dosed so he could go---yes, that does put him awake at 4:30 in the morning.

He is, as always, a trooper. It was a real horror of a stay for the first 16 hours. We have just never had the kind of problems with any procedure at Primary's like we had this time. We now have a follow up with the surgeon next week, we aren't sure how this is going to affect his pain, but at least it will keep further damage from happening to his esophagus and stomach. Plus, after a few more weeks the expensive meds will not necessarily be needed and we will be down a med (if the GI doctor agrees with the surgeon).