The Official Face of MCAD

We got confirmation today on the type of MCAD that Madisyn has. It's the Classic form which means that she has two mutations of the same gene. I was devestated even though I knew she had it. You can't tell that she has the condition just by looking at her, in fact, no one will ever be able to tell as long as we keep managing the condition. I thank Heavenly Father every day for living in the time that I do where we have the medical knowledge to help my baby. We found out she had the condition from the Newborn Screening the state does. I also found out that Newborn Screening is not something that every state does. The state of Utah only started testing for the 29 different genetic conditions two years ago, before that they didn't. I read a bunch of inspiring stories of people who fought for these tests in the United States and over seas. The March of Dimes is actually key in helping legislation get passed in other states so that this test is required. It saves so many lives when you get a diagnosis early and can manage these conditions. Much of the reasoning for these tests is because of parents who lost their children to conditions that could have been managed with something as little as a change in diet but weren't given the opportunity because these tests were not available. There are many states that still do not offer these tests, places like Arizona do not think it necessary. No child should suffer and die for something that can be managed. I urge you all to support the March of Dimes in their fight to get every newborn child screened for these conditions. It saved my daughters life, maybe it will save yours as well.

Pee On Her Face

Josh and I went to lunch with Aaron and Allison at KFC the other day. When Aaron was done eating he offered to take Kate from me so that I could eat, he's such a nice uncle. Anyway, when I was done and took her back he noticed his arm was a little damp. Sometimes the girls sweat a little so I said that she might have sweat on his arm. I gave him a napkin and he wiped it up and then went over to Allison and rubbed it on her face. I then noticed that his pants were wet. Yeah, she had a little accident on Aaron and he in turn put it all over Allison's face. I've never felt so bad or laughed so hard. It was a classic moment that will go down in my memory right up there with the "a...a...double B?" We love it.

Family Night

Once a month my family gets together for Family Home Evening. We usually have a lesson, last night it was provided by Andrea and Kyle, and then we do some sort of activity. Well, this month Kyle chose Croquet (I have no idea if that is spelled right). Anyway, Kyle beat us along with Aaron and Dan as a close second. Who knew that game could be so much fun?

Our Little Family
Andrea and Kyle (Ouch!)
My happy little Kaitlyn, she makes me smile.

Madisyn was on Daddy's team.

It was a little sunny outside, we did what we could.

Never A Dull Moment

So today was one of my two working days this week. Most of you know that I work at Granite Credit Union; but are you aware that my branch is in a Walmart? Well, most of the day is somewhat fun because we can always find something to laugh about (usually resembling the "people of walmart" website. Check it out, it's funny). Anyway, today I did not have to make my own fun, people at walmart did it for me. My day went as follows:

1- We were discussing funny names of members and someone walked in right as Felisha was saying Jen Nettles. (say it fast...lol) I think we just about gave the poor lady a heart attack. Needless to say there wont be a high Member Service Score from her this month.

2- While walking the isles (we are suppose to be out recruiting members; but usually we just use it as time to shop and goof off; but don't tell the boss, she's grumpy) I ran into a lady who was super nice. She was over 6 feet tall and her boobs were right at eye level with me. Now, I'm so not a girl who goes around staring at other peoples boobs, and I know what it feels like for people to stare at mine; but I couldn't help it, they were gigantic. I'm talking huge. I could probably use one cup and cover my entire head, I totally thought "hum, I wonder if she uses 2 hats instead of a bra?" I know, rude right; but it just sort of popped into my mind and I couldn't help it. Poor girl, I was wondering if she knew that she could probably get her insurance to pay for a reduction, however I didn't think it appropriate to suggest so early in our relationship; maybe on the next store walking.

3- While out to lunch with Amy (we went to Cafe Rio ... yummy) we were walking to the car when I see a lady with her two daughters all decked out in Hello Kitty Garb. The pants looked like Pajamas but they were too short to be pants yet too long to be capri's. I wasn't sure what would possibly motivate this Mom to wear that junk. I think she's taking the "Dress Younger Like Your Daughter" to the extreme, or maybe she just likes Hello Kitty, I don't know, but I will give her the benefit of the doubt and assume she doesn't own a mirror.

4- I think that it should be a requirement to show a valid Drivers Licence in order to operate the motorized shopping carts in Walmart. A lady pulled into our branch. Now, we have a very narrow branch, not a lot of space for turning around (by not a lot, I really mean NONE). I help her fill out an application for a loan and find out she has no income. What? Why in the world would we give you a loan when you have no way to pay it back? Sorry, tangent for a later post. Anyway, when we were finished she floored the motorized cart while flying in reverse and rams right into the table that hold all our deposit/withdrawl slips and sends it flying into the checkstand across the isle. She just puts it in drive and turns to go while muttering "These things are dangerous". Of course, I'm thinking it's not the machine it's the operator; but I hold my tongue. It's already been a hilarious/judgemental day for me.

So Walmart has just reconfirmed my theory that some people should have to get a permit to reproduce.

Easter

We had a super fun Easter this year. I am totally aware that my girls don't care that they get Easter baskets or decorate Easter Eggs but I think it's important for them to know that they never missed out. (Plus I have adorable scrapbook paper for Easter). Madisyn would not smile at the camara. She's just barely getting to the point where everything is not so serious that she needs to scowl at it, but just barely.

Kate on the other hand is always willing to smile. Anyone who talks to her can usually get a smile out of her. In fact, lately when we've talked to her she stares at our mouth so that she can try and immitate it after you, it's the funniest thing.

Josh decorating Easter Eggs, Madi is so not amused.

It's 9:30 at night here and Kate would obviously rather be sleeping.

Sometimes I wonder if Madi just thinks that we are all ridiculous.

A Date With Dr. Longo

On Monday Madisyn had her first real appointment for a checkup on her MCADD. We had to go up to Primary Childrens Medical Center to meet with Doctor Longo, whom I found out is from Italy not Germany as I had originally guessed. Things went pretty well. We met with 7 different doctors ranging from specialists to dietitians and geneticists. They all bombarded us with information but because I've studied up on this condition I believe I retained most of it. They measured her and weighed her (23 1/4" long and 11 lb 9 oz), she's in the 30th percentile for her age, so things are going well. I had to keep a chart for the previous three days of everything she ate, that was fairly easy since all she eats is formula; but I can see that it is going to get much harder as she grows.

They wanted to do DNA testing to see which of the two types of MCADD she has. They figure that it is the 'Classic' form which also happens to be the most severe. They treat both forms the same they just will see Madisyn more often if this diagnosis is confirmed. They asked me if she'd ever had her blood drawn before. I said "Well she's had her heel poked for blood", that is so NOT what they meant. They actually have to hold her arm down and poke her with a needle then suck out her blood with a syringe. The phlebotomist was great, he was saying sweet things about how beautiful she was, he asked Josh if he had a gun to fight off the boys when she grows up. All those things were made to keep our minds off the fact that they were about to hurt our baby; but it was still nice of him to say. He really took his time trying to find the largest vein in either arm, he said it was about the size of angel hair spaghetti. They took out three large viles of blood, I honestly wondered if she had any left. She fell asleep almost immediately, we kept checking her to make sure she was still breathing. I drove home with my hand on her chest.

Needless to say, we don't have to go back until October unless she has an "episode". They increased the amount of supplement she's taking and told us that as she grows we can increase it ourselves. WHAT? I am not comfortable increasing her dosage without a doctor telling me it's fine, so we will just let her pediatrition do it. They will have to take a blood sample everytime she goes in (I can just see how that is going to go when she's 2). I've already decided that Josh gets to be the one to hold her down, it was painful enough just listening to her cry, I can't imagine when she can talk. However, being at that hospital with children who have far worse conditions than Madisyn made me so grateful for the blessings I have. So what if she has to take a supplement, so what if she has to have a special diet (at least we will all be thin, once we start following her diet, it's not hard just different), at least she's not fighting something horrid like cancer. To me she is absolutly perfect just the way that she is.

Three Month Photos

We had their blessing pictures taken at JC Penny. They did a good job but I really hate how expensive it was (and I even had a coupon). Neither one of them cried but they didn't enjoy the flash very much.

Look at Madi's face, I think she's done.

My girls

Madisyn

Katie

We had this picture taken at my Mom's ward. They actually got a pretty good picture considering that they had just woke up. They did get a lot of goofy ones though.

Two Month Photos

I had some pictures taken of the girls about 8 weeks ago. Due to some family problems the photographer didn't get the photos back to me until about two weeks ago. Needless to say I had already had their three month pictures taken so these wont see the wall in my family room but they are still super cute.

Kate and Madi not enjoying their tutu's very much.

Kate

Madi in her Valentines outfit. (Josh thinks she looks more like an Easter Egg so it became her Easter dress as well)