Ava's baldness is quickly growing on me. She still gets quite a few stares and whispers but I am learning to smile and ignore them (as well as learning to pack the sunscreen in my purse EVERYWHERE I go, even when it's cloudy!) Today Liesel saw some boys pointing and heard them whispering about the little girl with cancer. I figured that would be the assumption. I took her to another dermatologist on Friday to get a second opinion. Basically she (the doctor) said the same as the first. Alopecia is very difficult to treat, and there is very little that can be done, especially when it onsets at such a young age and over such a large area of the scalp. She gave me several options, one being "what she would do if it were her daughter". That is all she had to say to make me agree to try it. It is a topical cream that is usually used for warts, but somehow, sometimes, makes hair grow. No promises, but we decided it was worth a try. Funny thing is, after the appointment, Hope asked me,"Mommy, why do you want Ava's hair to grow now? She looks so cute with her bald head!" I am so glad everyone in the family agrees, "she looks so cute with a bald head". I loved watching Simeon carrying her around in front of all his soccer teammates today, as proud as any brother could be.

Meanwhile, here is a rare picture. Ava wearing a hat. It lasted all of 3 minutes, but at least I got a cute picture of her. For your (and my) blogging enjoyment.

For Alison...

Me....and my Mini Me. :)

A birthday girl

Dear Liesel,
I loved that you wanted to have a "B" birthday this year. Boots, a Bible, a Bliss stuffed dog, a bike, and a Butterfinger bar. I'm glad all your birthday wishes came true. :) I can hardly believe 9 years has passed since I held that little curly black-haired slippery girl in my arms for the first time. I will never forget calling Opa just minutes before midnight to tell him his grandaughter had just been born on his birthday. I enjoy listening to you and Opa on the phone every year wishing each other a Happy Birthday. Everybody always tells me how much you look like me. I have to say, when I found my third grade school pictures in the attic recently, I have to agree! I also have to laugh when I see you protecting the frogs from your tormenting brothers. I remember doing the same thing when I was your age. I love that your most treasured birthday gift this year was your Bible from Aunt Marlita and Uncle Juan. It is so nice to walk by your room and seeing you reading from God's word. I hope you will always seek Him first in your life. I love you Liesel Charlotte. Happy Birthday!

Friends who decorate

I am blessed with a friend who is artistic, great at decorating, AND generous with her time. The way she shows love is by coming over to your house with her tool kit, usually with a bunch of frames and knick knacks in her trunk, "just in case" there is a corner in your house somewhere that needs something. Not to mention, she is really fun to hang out with. I LOVE having a friend like that.

A couple of weeks ago she and I were brainstorming ideas for the girls' room. (Hope and Ava share a room). I asked Hope how long she would like to share a room with Ava, and she said, "For 99-99-9-9-9-9-9-9 years......FOREVER." :)

Anyway, Nancy asked me to email her a picture of the 3 girls together for an idea she had. A few days later, look what she surprised me with! She got this canvas "with an ugly picture on it", she said, for $12. She told me to "just paint over it" when I'm tired of it or want a new look! There is NO WAY I am EVER painting over this. Isn't it wonderful??? I find myself wanting to hang out in the girls' room just to look at this beautiful picture.

By the way Nancy happens to have her own decorating business that she runs with a friend of hers. If you are local and need some help these two ladies do a really, really great job!! THANK YOU NANCY!!

More thoughts about alopecia

Thanks for all the kind comments about Ava! I never imagined I would be shaving my child's hair off but it got to the point that what little hair she had left (basically 3 strands of it) was so matted and tangled that it just seemed to me the best thing to do. My sister came over to offer me emotional support and video taped the whole thing, my tears and all! I will say it was one of the hardest things I have ever done! I'll be honest, I'm struggling with the whole thing. When I took her out in public over the weekend several times, she got so many stares! I feel like I'm already in a battle to get people to accept the Down Syndrome, and now no hair too? In addition to the stares she came home from the soccer games on Saturday with a pretty bad sunburn on top of her head. I thought she was under the canopy of the stroller but she kept leaning forward into the sun. :( Time to start carrying sunscreen in my purse!

I've had several people ask about alopecia, what it is exactly and how it affects the hair. From what I understand it is an autoimmune disorder where the immune system attacks the hair follicles, similar to what chemotherapy does in cancer patients. From what I read it is mostly triggered by stress, again, something that is very difficult for me to hear. I would like to think her transition here has been easy and smooth, but I suppose she has spent the last year basically in a new culture with a new language, new food, and basically strangers that want to hold her all the time. I suppose that would be enough stress to lose your hair. I pray that the hair will start growing back once she has transitioned completely. On the upside, the girl is NEVER sick! I suppose the two have something to do with each other.

Interestingly I met a lady at church on Sunday whose daughter is affected by alopecia. The daughter is 12 years old and, according to her mother, is not bothered a bit by it. She has been completely bald 4 times yet refuses to wear the many hats and wigs her mother has purchased for her over the years. :)

Speaking of hats, it doesn't look like Ava will be one to leave them on either. She thought it was really funny at Big Lots the other night to take her hat off and throw it as far as she could to see Mom chasing after it again and again. On the other hand, she is quite preoccupied with her new bald head and enjoys stroking it all the time.

So, getting to my point in writing this blog post. Even though I am struggling with how people will accept her, the guilt of wondering what stress I have put her through to cause all her hair to fall out, the sunburned head, and questions about the future, whether it will ever grow back, am I doing enough for her, etc....I received a special gift Friday afternoon when Ava got off the school bus, in her backpack, that I want to share with you. It was as if God was saying, So she lost her hair, so what? Look what she is gaining.
(In case you can't read it the note says.....Ava walked from the classroom to the office with her walker. Ava is doing very well with her walker.)
By the way, we have an appointment with another dermatologist on Friday. Please pray this next doctor will give us a better prognosis and hopefully more options.

Bald IS beautiful!

I have been agonizing for weeks as I have watched Ava's hair fall out piece by piece. For all this time I have been able to still pull it up into a tiny whale spout on top of her head, but it has gotten to where there is not even enough for that anymore.

I cried before, during, and then had a big cry after it was done, but now that I have finally brought myself to do it, I really think she looks perfect!

And in case you are wondering how a mother could possibly shave her little girl's hair completely off, maybe this "before" picture will explain....

Mysteries....

WHY is it that other families have baby gates that last more than 12 hours? And why did the previous houseowners not leave us any touch-up paint????



WHY did the bookshelf seem like an appropriate place to put the empty pizza roll bag?

WHY did the coloring book basket seem like a good place to empty the pencil sharpener shavings?

And WHAT IT THIS??????