Wednesday, February 25, 2009

Little Heroes





So I found a couple really good sights for information for families with children with AA. They are Children's Alopecia Project. - http://www.childrensalopeciaproject.org/ & National Alopecia Areata Foundation- http://www.naaf.org/ . They have some really great links and information. The National Alopecia Areata Foundation even provides a schoolpack that we can print out and give to Megan's Kindergartin teacher next year. Which has information for the parents and teachers on how to promote awareness and educate the other students that Megan will be in class with and also areas that they can promote self esteem within her. It is also very educating for moms and dads as well. Anyway on to the good news, when I was checking out these sights the other day I came across a link for a sight called Little Heroes Project, it is a non-profit based organization made up of professional photographers nationwide that provide free photo sessions to children who suffers from any type of serious illness or life altering disability. Not really thinking about I filled out an application for Miss Megan. Well not even two days after that I received an e-mail stating that she had been accepted for a Little Heroes photo shoot. They had a whole list of participating photographers in Nebraska, so we e-mailed back with the 3 that were the closest to us. So this was some great news after the week we had last week. Looks like they will even shoot her with her siblings, so the boys can be part of this! If you have time you should really check out the sight, they have some great stories on there and feature different kids every week. http://www.littlestheroesproject.org/ . Read the story about the founder it is heartwarming and very awesome because she is only 17 and started her life out with a medical issues as well.

Friday, February 20, 2009

The beginning story


My daughter was diagnosed with Alopecia Areata when she was probably 2 1/2. When she first started getting "spots" as we called them back them she proabably had 2 or 3 that progressively got a little bigger. Eventually they grew back on their own, until after that anytime she would get any sort of illness she would lose some hair. So we took her to pediatrican and they really did not know what to do with us. I basically had to beg to have any sort of tests done and eventually found out she has a elevated thyroid (which has nothing to do with her Alopecia). They finally just gave us a $80 foam and sent us into the local dermatologist. By the time we got in there they took one look at us and said "oh she is too severe for us to look at" made us an appointment in Omaha and that was that. It was a horrible experience - we waited a hour and 1/2 and he talked to us for 5 min. He told us that since she had just had spots she would grow out of it and it was just the "luck of the draw" that she had it!! That we had to use the Cortizone Oil EVERYDAY.. So her hair at that point started growing back a little, and the oil would thin her skin and she would have little sores. Me being a mom hated that - so I would stop using it for a little bit and she would get a cold or something and she would get another spot and it would be bigger. So then I would feel as if it were my fault and I could do more for her. That me not following Dr.s orders somehow caused it. So we acually switched pediatricians and this DR. checked her thyroid again and then sent us to Children's Hospital in Omaha for blood tests to see if maybe she was allergic to something, and also sent us to a Pediatric Dermatoligist affiliated with Children's just this last May. It was a tough appointment but a good one also. Dr. Jill Nelson, she was very good with kids but she basically told it like it was. She told us that it was not our fault that the oil was not proven to do anything, and why put a 4 year old through that if we didn't have to. She did warn us that Megan could possible lose all of her hair and eyebrows as well. Up to that point no one had really told us anything. The other Dr. told us that she would grow out of it and now we know that she possible probably won't. She also said the only thing really proven to help at all was the injections, and that she wouldn't do that to a child until they were old enough to understand it and ask for it themselves. She just said make her as comfortable with herself as you can teach her what she has, so when a mean child (which we know are out there) says "whats wrong with you" she can say I have Alopecia whats wrong with you !!! So, at that time she had maybe 3 spots that were maybe golf ball size, and then in November she started losing more and since Christmas she has lost nearly 80% of her hair.We did get her a wig this last month but she has only worn it a couple times. It is just there is she wants it, I don't want to push her. We wanted to wait until she asked for something, but we will catch her looking at herself in the full length mirror at dance . She has also asked her Grandma if her hair will ever grow back.... At this point we are just beginning our jouney without hair. We are trying to get in a support group in Omaha that way Megan can be with other little girls that are going thru the samething. I have found a couple moms online that do not know it but have been so much help! I thought I was crazy because I have been an emotional wreck lately. So here goes I have never blogged before but I am hoping I can vent out my fears and frustration on here and not at home .

Rough week..


Sunday night we were taking our bath and I washed what is left of Meggy's hair - and YES I use Nioxin. I know that it is probably pointless but we use it anyway. Megan likes the way it smells and likes that she has her own shampoo that the boys don't use. Anyway, I noticed when we were drying off that she has 2 news spots on the side that still has alittle hair left. You know I tell myself that this is gonna happen but when that much is gone in the little time that we were in the bath it breaks my heart! I am just down this week, I am happy when my kids are with me, but in private I am just down.. It's got to get easier - RIGHT??
At Megan's age it is harder on the mommys! We want to shield our children from any pain and saddness. I want to shield her from the looks that she gets in the stores from the ladies that come up to us and say "whats wrong with her". You just feel helpless b/c you want to make it stop and you can't it is not in your hands. I have been talking to another mommy who's daughter started losing her hair about the same age as Megan was. She is now 7 and has lost all of the hair on her head as well as her eyebrows. She is such a beautiful little girl and has such a great outlook on her condition. She said that in the beginning when it starts to get bad it is a mourning process . I know exactly what she means , I am mourning the hair that was once there. Mourning the possiblilities that my daughter might never have. Getting her hair done for prom, having girl's night sitting around doing hair and make-overs. Its the little things that I want for her and it is not fair! There is nothing we can do to make it go away, except tell them how beautiful they are and how much we love them. Be greatful for what we do have. She is here and otherwise a very healthy happy little girl who picks on her brothers ALOT!!