The Long Awaited Update....

Well I keep meaning to blog about Thanksgiving and Christmas and then I just don't want to do that much catch up so I'm going to just start with NOW--April! Ok with you? We had a great Thanksgiving and Christmas and leave it at that.

We are coming up on their 5th birthday! I cannot even believe it.

Some updates or things you have missed--

1. Ryan is currently going to an Occupational Therapist (OT) for fine motor skills delays. He has a hard time writing, holding the pencil correctly, and doing tasks like buttoning/zipping and basically anything where using the fingers is involved. He also doesn't cross his midline when catching/throwing balls so he is working on that too. That started in January and already he has made progress. We go once a week for an hour. He loves it there so it's no problem going. It's expensive though!!

2. Ryan fell off his bike on the driveway and got stitches on his chin on April 5th. That was our first trip to the ER. The smell of the hospital soap brought me right back to NICU days. Interesting how a smell can trigger memories. He said he was doing a trick. Of course the accident hasn't slowed him down in any way.

3. Kaylie has come out of her shell (a little) socially. She plays with the girls on the street and actually talks to them now. Still only says just a little bit at school. I'm a little worried about Kindergarten next year. I hope she will come out of this social anxiety with age. She is completely different at home so why can't she be that way at school???? Drives me nuts.

4. Still no hair regrowth for her. She lost her last batch of hair in March 2011 and we haven't seen more than a light fuzz that never seems to grow. It just falls out again. So far she doesn't seem care that she has no hair and doesn't appear bothered by it. She has wondered why she has no hair and everyone else does. I tried to explain alopecia to her. I have shown her other kids with it so she knows she's not the only person with it and I have a few books that we still have to read. I know next year there will be a lot of questions from kids at their new school. I really want her to be able to tell them what it is but with her shyness I don't think that is going to happen. She loves to do my hair. I can rock 'the 20 hair clips at one time' look really well. She may end up a hair stylist one day. Who knows.

I really like this age. Still hard at times with strong willed personalities and the fighting that goes on. They are becoming so much more independent and actual kids, not babies anymore. They question everything. They are learning and growing everyday. It's exciting to witness.

That's all for now folks!

February-March 2011

Yep, I know February comes before March but I uploaded the pics to Blogger and didn't feel like dealing with having to move them all around b/c they were out of order. So here is March first and then February.

March brought us a St. Patrick's Day celebration at school...

The kids writing their names...

March they got to get outside one or two warmer days to test out their bikes they got for Christmas.

February brought us Valentine's Day parties at school...

Lots of snow and a case of the crazies!

Cabin fever

Notice all of Kaylie's hair....unfortunately it won't be there next month and I haven't seen it since.

It's Been a Year

On January 12, 2010, it marked a year since I first found the quarter size bald patch on Kaylie's head. It was an emotional year for me. I cried a lot for about the first 6 months. A lot of people told me it was no big deal and things could be worse. I know they could be but I had the right to grieve didn't I? Sometime in the summer I gained some acceptance of it and resigned myself to the fact that she might be bald for the rest of her life. At that point, she had lost all the hair. I also stopped reading about alopecia and everyone's personal struggle with it. That probably stressed me out the most, hearing how everyone struggles with it and how I didn't want that to happen to my daughter. Then in July we spotted the fuzz growing back on the top of her hair and I gained some hope back. Slowly with her hair growing back, my hope keeps growing back too. I just hope it doesn't get crushed again.

So where are we a year later...here.

You can see hair is growing back on the top. Hair on the sides and back are taking their sweet old time. I spotted some fuzz on the side today so that is promising. You can still see circular spots a clear sign of the alopecia. But of course all of this new hair can fall out again and we start the cycle all over. The unknown is what gets you.

I stopped using the cream we were using. I wasn't seeing any reaction like it was supposed to cause so I figured what's the point? Her body clearly got used to it. Even without the cream, growth is happening. That's a good thing.

Kaylie knows her hair is short but she doesn't know that it's not supposed to be like that. She is not self conscious of it at all. I have told her she has something called alopecia where her hair doesn't grow but she doesn't quite "get it." She has never asked me why other people have long hair and she doesn't. It's funny b/c she plays with my hair from time to time pulling it back into a ponytail and messing it up but never asks for her hair to be put up. I actually have not put it up in pig tails since January 12th of last year. Kids in her class have never asked about it. I do see older kids--maybe age 7 and up looking at her trying to figure out just what was going on. No one has ever asked me about it either. Kind of strange I think. I don't know if they are just avoiding it or what but then again I probably would never go up to someone and ask either.

Oh and you know what? Her hair actually gets messed up now. I actually have to do her hair. I had many months of not having to do anything to her hair. It feels good but at the same time, man having no hair was so easy!

How I'm handling it: I'm trying to be strong about it. I just tell her she is beautiful every day because she is! I need to build up her self confidence as much as I can. When she asks, I will tell her. I am hoping all the hair grows back before then. :)

New Growth

I don't want to get ahead of myself but I noticed some peach fuzz on Kaylie's head tonight. It seems to be in patches and not all over but still, some growth is going on! I'm still praying every day that her hair returns.

We went to the dermatologist a few weeks ago and they recommended using the Dritho-Scalp treatment for 10 minutes every other day instead of the 5 minutes we were doing. In the first few weeks of using the cream Kaylie's scalp was showing signs of irritation and she was scratching it. Exactly the response it is supposed to cause, but then that all stopped like her skin/body was getting used to it, so we are trying the increased time to see what happens. So far, I haven't seen the same reaction like it caused before but I do see some growth.

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.