Friday, June 26, 2009

Too cute!!

Last week my friend Mary and her kiddos came to play. As you all will remember Mary's son Riley is Ella's little boyfriend, they are on again for those of you keeping up : ) Anyhow, they ate ice cream (pics of that to come) and snuggled on the couch together with Ella's new afghan (also pics of that later) made me sing songs to them, and danced on the table together. Here is my best attempt at recording their actions.... as usual Ella would not perform on command, but RILEY did most of it!!! In the video if you listen closely you will hear Ella's favorite word, "NO!" she is just so cute when she says it, and Ry's favorite word "yes!" Also Riley is without a shirt because of the kids ice cream cone eating adventure, it wasn't pretty! One last thing, nevermind the horrible singing in the end! Enjoy : )

Saturday, June 20, 2009

An Afghan of Her Own!!!

Our blogging friend, CJ, made Ella a BEAUTIFUL afghan and we got it in the mail yesterday!!! CJ is the crafty mind and hands behind the T21 Traveling Afghan project, and had such a great response to that she branched off and is doing an Afghan of Their Own. Check out the T21 Traveling Afghan click here.

Here are some pics of Ella with her new blankie, she loves it. Never mind the horribly messy hair. Late last night was the only time she stopped crying and being mad at me (do NOT know what her problem was yesterday) long enough for me to take pictures.


and a kiss!
Where's Ella?
Baby needs
a turn.
SO funny!!

Sunday, June 14, 2009

A few pictures

I just thought I would add a couple of pics so that my last pitiful post would not be the first one people see : )

I started my job last week at Ella's school, Spokane Guild's School, and it was wonderful!! Thank goodness I work everyother day, those kids wore me out, ha ha.

Here you go,

These first few are of Ella after she stripped herself and then put her headband on by herself. She is oh so stylish.

Then I took a few of her in her cutie overalls, I love kids in overalls then add pigtails to it and it's the perfect outfit!!!!
Pure beauty. Pure perfection.

Sunday, June 7, 2009

My woe is me post

Please bare with me, I need to vent and I need to whine.....

I mentioned a few posts ago that I had had 2 biopsies done on my scalp because I have been losing hair, particularly in the front bangs area, for the past almost 3 years (since Ella's birth.) I had been told be a couple of different dermatologists that this was simply from stress and that my hair would come back. Well, after 3 years that is not the case, and I found a doctor, actually a PA, that took me seriously. So on Monday I got a call from the nurse with my results, she tells me I have "non-scarring, non inflammatory alopecia." Holy shit, I FREAK out. Really I just start laughing, you know the I'm laughing hysterically because it is the only way I can prevent myself from bursting into tears.
I remember watching a show on TLC years ago about children with Alopecia, they were totally without hair on their scalps. So, immediately I start searching the Internet and find out that there are several types of Alopecia. So, I calm down a bit. There is a form of it that has a possibility of new hair growth by getting steroid shots into the scalp, so I prepare to go to my appt on Wednesday and demand shots to my head.
So Wednesday comes. I take Ella to school from 11 to 1, then head to my appointment with Ella in tow. The nurse takes out my stitches from the biopsy. I ask to speak to my PA and she says he isn't there. I tell her why I want to talk to him, probably with desperation in my voice, and she goes out and gets one of the doctors to come and talk to me. Well, apparently Alopecia simply means hair loss. I have premature Female Pattern Hair Loss. Meaning that I am not a candidate for shots and basically my only hope is to try Rogaine. There is no pill for women. I really freak out. The doctor asks me if my parents have thinning hair, um NO. He says it is hereditary, hmmm. I inform him that I AM 29 FREAKIN YEARS OLD. My hair should NOT be coming out. He also informed me that this is often kick started by a traumatic/extremely stressful event, aka Ella's birth/diagnosis. But the kicker for me was that the doc informed me that the follicles that were biopsied had thinning hairs and that the hairs were in the catagen stage (the resting stage) which is what they are in right before they fall out. Fabulous. I of course break down and start crying in the exam room. He attempts to comfort me a bit and then books it out of there, not before saying that I can come in and to talk to them anytime, why so they can tell me there is nothing they can do? Urgh.
I know that it is not the end of the world for my hair to fall out, I really do. I am not sick and I am very thankful for that. HOWEVER my hair is all I've got. People have commented on my hair my entire life. I vividly remember ladies coming up and touching my hair when I was a little girl. I was told probably thousands of time as a little kid "has anyone ever told you look like Annie???" My elementary school music teacher would stand at the entrance to the school every morning and every morning when she would see me she would begin singing "The sun will come out, tomorrow...." You get the point. Of course it was mortifying, but it's all I've ever known. I still get compliments on my hair quite often, "Is that a perm? I would kill for those curls." "Is that your natural color?" etc. I even got "most recognizable hair" in high school. I really am not vain about it, it's just the way it has always been. I'm not very good at accepting compliments and of course blush profusely. I have horrible self esteem, but at least I know people think my hair is beautiful. It seriously is all I have (besides extremely beautiful kids : ), I don't have a nice body, I'm not exceptionally talented at anything, the thought of not having my hair is so depressing.
So I have started the Rogaine, it is a bit smelly and I have to put it on twice a day, it makes my hair hard (it's applied like a mousse) and a bit greasy looking. But I'm doing it. I'm desperate. I've searched and found vitamins that are supposed to help so now I am loading myself up.
What really bothers me I guess is when is enough, enough? I have had a good life, I have a great family etc, but I have had some really rough spots throughout there. I feel like my life is just finally calming down. Ella is getting older, all of her medical testing is tapering off, she is doing fabulously, my accepting and understanding of her having Down syndrome has become more normal to me (if that makes any sense.) Hunter is doing great. Chris and I did a lot of work on our marriage this past year and are doing better than we ever have. We bought our first home. I just got the job of my dreams. And then this. It's just always something. I can't ever just feel secure and enjoy life. (oh yeah have I mentioned on here that I am medicated for depression and anxiety, not really helping...) I feel sometimes like I have done something to piss off God, that he is testing me and obviously I must be failing because it happens over and over again. It's just how I feel, when you have so much happen in the past oh 17 years you can't help but wonder what you have done wrong to deserve all of this.
Anyhow, has anyone out there experienced hair loss????

Well, enough of that. I'm heading to bed. I am starting my job in the morning and am really excited about that, so that's a good thing. If you made it this far, thanks for reading : )

Wednesday, June 3, 2009

June 08/June 09

I am in a crappy mood, lots to write about but no desire to do so. Ella wore an outfit today from last summer so I attempted to pose her the same way as previous pics to show her growth!

Oh yeah, I forgot last post to say.... even though Ella has grown she is still a shorty : ) She is a whooping 32 1/2 inches tall, which puts her in the 25th percentile for girls her age with Down syndrome (she doesn't even register on the "typical" growth chart) and weighs 29lbs which puts her in the 90th percentile for weight. She still wears size 18 to 24 month clothes. Poor kid. Oh and her head circumference is 49.5cm, which puts her totally off of the Down syndrome chart and in the 75th percentile for a "typical" kid!!! What can I say, big heads run in the family : ) The genetics doc we saw when Ella was 4 months old actually told us that kids with DS have smaller heads, and that it was really good that hers was large because it meant that her brain was growing normally and forcing her head to grow. While I am on the subject of her head, I know that kids with DS's softspots close later than the typical kid....but here we are 2 months away from her turning 3 and her softspot measures 1 1/2 inch wide by 1 1/2 inch long. It is DISGUSTING, I mean, I think they are all a bit repulsive but her's pulsates and is just this huge mushy place on her head. So, the question is how old was your kiddo when their softspot closed????