Wednesday, April 28, 2010

About Kaylie

This is hard to write...

Since January, Kaylie has been losing her hair. She has Alopecia Areata. It's when your immune system starts attacking your hair follicles and the hair doesn't grow. For some it may just be a patch or two, but for others it can be the entire head. It's true Kaylie never had thick hair. It was always wispy and on the thin side, but she had hair all over.

I first noticed the bald spot on January 12. It was the size of a quarter on her left side. I was in denial. I thought it would grow back, so we played the wait and see game. I thought she had maybe bumped her head when she had a pigtail in and it pulled some hair out. Then that spot doubled in size by February. Well, by early March, her hair was thinning out and another patch had developed. We had her tested for things like vitamin deficiencies, autoimmune disorders, and thyroid. All blood work came back fine. So this is where we are at--alopecia. There is no known cure for it and they really don't know what causes the onset either. She may continue to lose all her hair and be that way forever, or it may grow back and if it does grow back, it can happen again. It's a very unpredictable disease. In all honesty, I believe when she had a virus in December that lowered her white blood count level to 2.1 (very low), it triggered something to make her immune system start to attack her hair follicles but I am no doctor. Or else, she just has bad genes (which I feel guilt about).

The reality is that Kaylie shouldn't even be here with us--she beat the odds. I am eternally grateful to have her in my life. I know she could have a life-threatening disease like cancer or something and I am so thankful she doesn't. But on the other hand, I'm so saddened by the fact that she may have to go through life being bald and DIFFERENT. I'm so worried about what this is going to do for her self-esteem. I'm worried about how this is going to change her. Right now she has no idea that she is beginning to look different. We are almost at the point where we need to shave it off completely because she basically is bald on one side of her head and it looks a little silly. I'm just waiting for the day when she asks me where her hair is. It breaks my heart. Bob has made me see that WE are the ones that are going to have to help her get through this and become a self-confident individual. The question of HOW remains.

In the grand scheme of things this is trivial, but I am mourning the fact that I won't be able to brush and braid my little girl's hair. A mother's dream gone. I have read that when people (or parents of kids who) are diagnosed with this disease (or any for that matter) later in life, they go through the five stages of grief--denial, anger, bargaining, depression, and acceptance. I'm not at the acceptance stage yet. I'm happy that Kaylie won't have to go through these stages--or maybe she will at some point, some level, I don't know.

I do know that Kaylie is one tough girl--she's been through so much already. One thing is for sure---she is a fighter. We will try to do our best to raise her with self-confidence.

Meanwhile, I pray everyday that my beautiful daughter will get her hair back.

Monday, April 26, 2010

Please Vote for Ryan & Kaylie!

I entered into a contest to win a free photoshoot on the beach. It's for multiples only. Please take one second to vote for Ryan & Kaylie at the link below!! Thank you so much!

Sunday, April 11, 2010

Potty Progress!

Kaylie pooped on the potty today! If the pooping continues I will consider her trained. It's been 4 days and no accidents. She tells us when she has to go. She has even pulled her own pants down, peed, and then dumped her pee and flushed all by herself! Way to go Kaylie!

Saturday, April 10, 2010

Prelude to Easter

In the weeks leading up to Easter, the kids attended an Easter egg hunt at Grandma's work. They posed for a picture with the Easter Bunny--just standing next to him. They didn't want to get on his lap and as usual didn't want to smile either. After, we visited with Grandma & Pop Pop and played in their yard.

We also dyed Easter eggs for the first time. They were really into it and loved watching them turn colors. I should have boiled more than a dozen eggs, but no one in our house eats them so I didn't want to waste them. They didn't even want to try a taste.

I love how you can see Ryan's excitement as he drops an egg into the dye.

Ok and this has nothing to do with Easter, but it happened last month. Since they love her music so much, we took them to The Laurie Berkner Band Birthday concert. We saw them last year as well. Our seats were great--4th row & center! Ryan sat mesmerized by the lights and instruments for most of the concert. Kaylie seemed to enjoy it too although she didn't do any singing or dancing. She gets super quiet when we are in places with a lot of action going on--or anywhere for that matter. She is the shyest girl ever!

Potty Training Update II

I will warn you: If you aren't into the whole potty training experience you might "glaze over" reading this novel. :) I wrote it mostly for other moms out there who are looking for potty training stories.

Well, since my last update about potty training, which you can read here, we have made leaps and bounds and we are almost fully trained. I say almost, because the pooping part is not coming-- well sort of.

I made the switch to pull-ups a few weeks ago, but they just used those as diapers, so the week before Easter I had them in a pull up in the morning and underwear for the afternoon. I'm not sure why I didn't go to full on underwear but I didn't. Maybe it was the fact that I had two kids to watch and bug about going to the bathroom. I don't know. This week, I just said, heck with it, we are going to wear underwear all day except for nap & nighttime. There were accidents, and some resistance to going (mostly by Ryan). But as each day went on, there were less & less, especially for Kaylie. She started telling me when she had to go by the end of the week and hasn't had an accident for two days now. Ryan still has at least one accident (maybe 2 if I forget to stay on top of him) a day, but that has come a long way from the 4-5 he was having. He seems to pee more often than Kaylie too. He still isn't waking up dry in the morning, unlike Kaylie. I see Kaylie being able to sleep in underwear long before him.

We have had two outings this week, other than playing outside (where I bring the potty out into the garage), where they wore underwear. A playdate and a birthday party. They did great at the playdate ( I had brought along our potty). They did great at the party too. It was at a banquet hall so they had a restroom. They were VERY interested in the restroom because for them it was the first time seeing a bathroom outside of a home. Ryan of course had to open and close the stall door a thousand times. He requested going to pee quite a few times I think just to check things out. Kaylie sat on the toilet a few times, but wouldn't do anything. She liked to visit often as well. The little stinker ended up holding her pee for 4 hours until we got home! I was sure she would pee in the car but nope! So that is the long winded way of saying they are doing well with peeing.

Now onto the pooping issue: Kaylie WILL NOT POOP! She is holding it for days and then goes in her underwear but she won't let you even try to put her on the toilet so I don't know what to do for her. M&M's are good motivators for her to pee, but nothing has worked for poops. I mean I'm ready to buy her first car and she won't bite. :) Ryan was resistant all week until TODAY! He pooped once a few weeks ago in my last update, but went again today. I think the key for him right now, is to let him go without underwear at the times he may poop. I know when he is going to go because he leaves the room like he wants privacy. I have to watch him like a hawk now and see if I can catch him. I figure the more I can catch him, the more he will get used to going on the toilet. But let me tell you, poop in the underwear is NO FUN to clean up! I hope Kaylie will try to poop on the potty once she sees Ryan doing it more. We shall see...

So we are almost there and I see the light at the end of this tunnel.