So true!!!

Breathing is good!

About a month or so ago I filled out this huge application, asking for a grant from St. Joe's, to cover some of Carter's mounting medical costs. When I called and asked for the application, I explained that we would have to pay like $8000 out of pocket before we could apply for any state funded medical grants, so I asked if it was even worth filling out the enormously long, tedious application. She said its always worth a shot, and that this program is through St. Joes so they don't have a lot of the same factors swaying their decision as a state funded program did. So I filled it out. I took about 2 hours, every day, for about a week for me to get all the information together.
Today, we got a letter in the mail saying that they were covering ALMOST ALL of amount we have left to pay!!! Before I even opened the letter my mind flashed on my patriarchal blessing and the line that basically says as long as we faithfully pay a full tithe, our family will be blessed. Just the other day I was telling a friend, that I'm not usually the kind of person who has impressions. Not that I would EVER want to go through all of this again, I know that this experience has given me some spiritual experiences that I would of not otherwise recieved. I read the letter over and over and started to cry. I yet again, can't put into words the amount of stress that has been lifted off. I feel like I can breathe again. Breathing is good.

Today

Today...
We had happy tummy time!

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Today...
All three looked like this, AT THE SAME TIME!

Today...during naptime I was able to do this...

What is that you ask??? Are you sitting down? Yes, that is a clean kitchen. I know, its a lot to take in :)

Today...the kids actually has a decent amount of veggies and fruit, without a fight. I came across this cute idea from Gourmet Mom on the Go. I printed off this little poem... Then you put a different fruit or veggie in each hole of a cupcake pan, and covered the entire pan in tissue paper. (I forgot to take a picture). Then according to the poem, you "dig" in each hole, and help Peter Rabbit remember what he planted in each hole. I had them eat everything that was in a hole, before they could "dig" in the next hole, except for the snow peas (they had to take 3 bites)..they are not fans of snow peas apparently. Here is Kyle chowing down on his broccoli.This was what was left after they finished digging. They loved digging, and there was no forcing them to eat it. Today... the crazies played outside for over an hour, as happy as could be!Today...I found my little corn seeds popping through the ground!Today... I found my first little bell pepper of the season.Today...our prayers were answered. Do you see this little nifty machine. It is Carters feeding pump. We also have this backpack, which allows us be able to leave the house and still feed Carter. On Saturday we were out and about, and somehow, we lost it. We called the company and we were told the cost to replace it. Any guesses how much that might be? Now think higher. Higher. $3300!! Karl backtracked our route over and over, and found nothing. The feeding pump did not have our name on it, but it did have the number for the home heathcare company. So we had to just hope, that someone would call the company and turn it in. We called the police department, the sherriffs department, and put an ad on craigs list. Well 5 days later, still nothing. The company sent us a replacement pump, and we tried to think on how we were going to pay for it. Then this afternoon, the heathcare company called and said that someone called and said they found our backpack!!! I can't even begin to describe the amazing amount of relief that came with that phonecall!

Today....was a good day!

Kyle turned 3!

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Risky Business!

For some reason, I didn't see this happen to Tom Cruise. *Turn up your volume

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Yummmm...crayons!

Kyra had snack for preschool the other day, and we decided to make crayons!! If you google edible crayons, or pretzal crayons you will get a million hits. But, basically it is pretzal sticks dipped into white chocolate (just colored with food coloring). You can find the label templetes all over various blogs. Kyra is just LOVING preschool this year. She loves everything about it. The other day, during clean up time the teacher had some music on and the kids started improptu dancing with each other.


Kyra is sooo excited about starting kindergaten in the fall, but I think she is a little nervous about not having Mrs. Jo-Anne with her each day! Ever so often I will see Kyra and Kyle sitting on the floor, and Kyra is telling him what to expect when he goes to preschool, so he isn't nervous because she won't be there to help him, because she will be in kindergaten. I think those two crazies are going to miss each other like CRAZY when Kyra goes to school!

Carters Baby Blessing

On April 21st we blessed Carter! It was so nice to have family travel to join us on this special day! We feel so blessed that all of you were able to make it!

We tried to get a couple pictures of the crazies together, but Kyle was hopped up on goof balls that day, and we couldn't get him to sit still. Here is a picture of the men who were in the circle. My uncle Lonnie, my dads brother, my dad, Karl, holding Carter, Karls dad, and Uncle Matt.

Here is one of our little family! It was such a good day!

Thanks Cariann for take the pictures for us!!!

Family Movie Night

The other day I came across this idea of Family movie night. So last night I told the crazies that we were going to have Family Movie Night the next night. We were going to have popcorn, soda, candy, and snuggle down in pillows and blankets. They were super excited! But...THEY had to buy the popcorn, soda, candy, pillows and blankets from the concession stand using tickets. They earned tickets by doing the chores (cleaning their room, helping fold clothes, help with dishes) and being nice, listening to mommy, etc. Well by noon today, they OWED me 3 tickets. Sigh.

So this afternoon I decided to give them a really simple task, that I know they would do, just so they could earn one ticket. As soon as they earned that first ticket, they were on a roll. It was nice that simple little things, that they normally fight me on doing, they did without having to be told. I'm not sure Kyle really got what was going on, because each time I asked him what he was going to buy with his tickets, he just said "A car." But once he saw the "concession stand" and watched Kyra buy her snackies, he caught on pretty fast. Here is Kyra with her handful of tickets...her goal..she had to buy everything! So she figured out that if there were 6 items, and they each cost 2 tickets, that she would need 12 tickets. So all afternoon, she would chant "12 tickets, 12 tickets, gotta get 12 tickets." She is such a goal oriented kid!Here is Kyle with his hard earned tickets. Kyra ended up with 1 extra ticket, and she said she was going to save it for next family movie night. Then she relized that Kyle was 1 ticket short of getting everything. So she gave him her last ticket!

We watched Homeward Bound. The crazies LOVED it!! I of course cried like a baby :) It was such a fun night! I think next time, I will have them earn tickets throughout the week, like one at the end of each day if they helped and were nice that day, and then bonus tickets for extra things they do.

Cooking Blog

My friend has a great new cooking blog! http://www.envymycooking.blogspot.com/. All the recipies look sooo good! I can't wait to try out the buffalo chicken. Anyway, they are doing a great giveaway, so check it out!

Peace

I am overwhelmed with love, thinking of each one of you, fasting, sacrificing, for our little guy! When I started fasting, I was praying that when we go to the doctor tomorrow, that the doctor would be inspired, would know what to do next, that we wouldn't have to travel to the Mayo clinic. I was scared of the challenges that the unknown presents. I was worried about the effect on our family, on Kyra and Kyle, on everything. But, as I sat in sacrement meeting today, all I felt was peace. For the first time, I felt that regardless of what happens, it will be okay. That regardless of where we have to go, it will be okay. That our family will be okay. We have such a great support system, through all of you, that we will be okay.

Then in Sunday school, the teacher told the story of Moses. Moses was told that if he held his arms up, then they would prevail in battle. As he grew tired, Aaron and Her helped him hold up his arms, and in the end, they were victorious. To demonstrate she then had one of the brethern come up and hold up his arms to the side, and she began to put a couple books in each one of his hands. As I watched him grow tired, I felt like I was looking at my life. That I have held up my hands for 3 months, and that I have grown tired. But then the teacher had two other brethern come up, and help him hold up his hands. At that moment, I realized that although I may be tired, that I need to continue to have faith, endure and symbolically continue to hold up my arms. But that we never have to hold up our arms by ourselves. So thank you. Thank you for fasting with us, for praying for us, for holding up our arms. I don't know when or how, but in the end, we will also prevail in our own battle.

A Rough Day...

One month ago, Carter had a swallow study. He had a dilation and a botox injection about a week before that swallow study. The study showed that the muscle was open, but there were little pockets just above the muscle that weren't emptying as quickly as they should have, and so after about 10 sucks from the bottle he would start to aspirate. So they wanted us to wait one month, get his reflux under control, have him gain weight, and do another swallow study. The hope was that the botox, if it did effect those little pockets, it would decrease the effect in about a month. The occupational therapist said "I fully expect that in 1 month we will see vast improvement". Yesterday was the 1 month post-dilation swallow study. I was trying not to get my hopes up, that he would be able to eat, because I got my hopes up with the last one, and the results weren't exactly what we were hoping for. Unfortunately Karl had to work, so I had to go by myself. At first the occupational therapist tried giving him a bottle of the barium to drink. For all of the previous swallow studies he just went crazy over the bottle. He LOVED drinking from a bottle. Yesterday he acted like he had no idea how to drink from a bottle. Like he had completely lost that reflex. So the OT said that when he does get to drink from a bottle, we will have to reteach him how to do that. Since he wouldn't drink out of the bottle, they filled up a syringe, and started dripping little drops into his mouth and then sticking in his pacifier to get him to swallow. He instantly aspirated. Wait..what....at the last one he went like 10 sucks, and now just a drop...No that can't be right. They tried another drop...he aspirated. Another, aspirated, and finally coughed. No, no, no, he was supposed to be drinking from a bottle, perfectly fine. Try again...instantly aspirate. They have to stop the study. They can't risk pneumonia. So what does that mean??? They have no idea. They couldn't give him enough barium to see really well where the problem is. He is swallowing worse than the day he was born. We have done the only known treatment for this condition, and it made it worse.
Possibilities:
1. There is a problem with the tongue and soft palate. Nope, the swallow study did show that was working properly.
2. The muscle still isn't open. Again, not really possible. The botox works for 6 months, and its only been 1 month. The muscle doesn't really have an option to stay open or not.
3. There is something structurally wrong..the esophagus is narrow....there is a flap that has flipped over that hole, etc.... Not really possible. We had an MRI, and CT scan done. Completely normal. Then the doctor had to do a scope of sorts to inject the muscle with botox, and didn't notice anything abnormal.
4. Regardless of what it is, they thought that as he gets older, he will just "outgrow" it. That obviously isn't the case, since he has finally gained weight, and is older, and it has gotten significantly worse.
5. Can we just wait for a year and see if it gets better. Not really,because if we were to rinse off his pacifier with water..that amount of liquid, he could aspirate on, and there is always a risk of pneumonia. Also, he is back to not being able to really clear out his own saliva..so we have to do something.
The OT said "I'm sorry. I have no idea...I can't figure it out." Okay..so what do we do???

We have another appointment with the pediatric ENT specialist on Monday. He really is the best in the city, probably the state, and arguably one of the best in the US. Unless he has some huge epiphany, all of the specialists are out of ideas. That would mean that our next step would be the Mayo clinic. Unfortunately the Mayo clinic that treats pediatrics is in Minnesota. So that obviously has its own level of difficulty.

This is definitely the most discouraged I have felt since we began this journey. I kept telling myself that he is getting better...that the next procedure will be the one that works.
This Sunday we are fasting for out little guy...fasting that the ENT specialist will be inspired..that they will have a solution..that we can stay together as a family, and not have to be separated to try and find the answers. If any of you are willing to fast with our family, we would really appreciate. Thank you for all of the prayers that have already been sent our way.

Carter hit the big 1-0 today....the big 10 lb mark!! Karl's grandma bought us the little scale, so we don't have to keep going to the doctor multiply times a week, just to weigh in. I love it! Here are a couple random pictures.

This one morning, at about 4 am, I was holding Carter in bed, and then laid him in his boppy. Then at about 5 am, Kyra came in to snuggle, and then Kyle about 6 am. Lets not forget to mention the 2 dogs at the foot of the bed. Is a king size bed the biggest one they make??

Here is Kyle getting his snuggles with Carter. I really thought Kyle was going to have a hard time when we brought Carter home. But he has been really fantastic with him. He loves him to pieces, and has never been jealous of the time that he requires. That has been a HUGE blessing. Kyra also loves him so much, and Carter really enjoys being held and cuddled by Kyra.
Kyra asked to hold him the other morning. So I laid him next to her, and they watched cartoons together for almost an hour!
Now that his reflux is under control, he is such a happy, content little guy! We have another swallow study on Wednesday, so we will see what happens next!