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 : )
Friday, June 26, 2009
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.
and a kiss! 
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.
Hugs
and a kiss!
Where's Ella?
Boo!
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.
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 : )
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????
Saturday, May 30, 2009
Miracle Grow????
All of a sudden both of my kids seem to have sprouted. I do realize that both of my children are short, but to me they are getting really tall! Today I put an outfit on Ella from last summer, (all of her clothes from last year still fit, they are just a bit shorter!) and there were two things sticking out the bottom of her skirt that weren't there last year..... LEGS. Obviously she had legs last summer, but they were VERY short!!! I tried to find a picture of her in this outfit last year but couldn't. I couldn't help but think about how much Ella has changed in the past year, not just in her appearance (which is quite drastic) but in all that she can do. At this time last year Ella was still not even walking, knew maybe 2 or 3 signs, no words, couldn't eat by herself, no attitude problem : ) and on and on.
Before I post the pics I want to share a few things. First of all, I found out on Wednesday that I did get the job at Ella's school, Spokane Guild's School and Neuromuscular Center, as a team assistant. Meaning, I get to play with kids birth to 3 with disabilities and actually get paid to do it! I am SO excited and can't wait to start work on the 8th. I will be working 18 hours a week, 3 days a week so it is a perfect fit for me.
Also this past week we had Ella's IEP meeting with the school district for this upcoming school year. Seeing as Ella's 3rd b-day is August 30th she will begin the first day of school same as Hunter. The therapists and teacher threw me for a loop. They decided that they were not going to do what we had discussed in the past several meetings and have decided that they want Ella in the General Ed Preschool. WHAT???? She will be in the ECAP (like Headstart) preschool with "typical" kids and be pulled out for her therapies. While I am totally excited that they see how smart she is I am also totally terrified. Ella is such a baby!!!!! She is about half the height of the other kids, essentially non-verbal, and really I don't know that she is able to behave like other 3 year olds. They assured me that if it is too much for her they will put her in a special ed preschool class. It's so funny because my goal obviously is for her to be mainstreamed, it just kind of took me by surprise that it would happen so soon and without a fight! So, my little cutie pie smarty pants is going to big girl school this September!!!
OK now for the pics of Miss Thing today.......
Here is Ella one year ago!
Now for the cutest pic, despite the tongue sticking out....
One last thing.....Does anyone elses kid, that's Ella's age, love to lick things? All of a sudden Ella is obsessed with sticking her Gene Simmons like tongue out (seriously the thing goes down past her chin) and licking stuff, like people, TV's, tables at resteraunts, etc.......so strange!!!! I tell her to put her tongue in her mouth and she either purposefully starts licking more, or says no. *sigh*
Sunday, May 24, 2009
Lack of blogging desire...
I don't know whats up, just that I have nothing to say these days I suppose. We have been busy, I will use that as my excuse : ) I am patiently (NOT) waiting to hear if I got the job at Ella's school, supposed to hear on Tuesday. Apparently we were supposed to find out last Friday, but they were waiting for my doctor to give me a medical release to work, (which was a nightmare to get. The doctor said that he consulted with another orthopedic doctor and they decided because of the type of fracture I have in my tibia that they would not give me a verbal nor written medical release. After freaking out, I asked if he would write that after the 8th of June he would release me, as this is my next x-rays and will be 6 weeks after the initial injury, he said sure and they faxed it over right away. Whatever.) I will be so pissed if, because it says I can be released on the 8th and the job starts on the 1st, I don't get the job because of my stupid leg.
Hunter and Emily
(the b-day girl)
they are both 5
Ella and Emily
Hunter and Emily's
brother Logan.
CUTE!
We painted Ella's
nails purple. It's
hard to see but she's
showing them off.
Ella dancing on the
table, *sigh*.
Hunter came home
from school and dumped
his hat and lunch box
on the floor.
She kept saying "BYE"
I said are you bubba?
She said "yes."
What happens when
Ella sits on the new
couch. Still very
full of static
Ella's new hat
from Papa
Chris' dad, Papa, is here visiting right now and the kids have really enjoyed having him around, Hunter and Papa are out playing golf right now. Papa bought Hunter his own little golf bag and putter last night to add to two other clubs he got him on a past visit (real stuff not plastic) it's so cute!! I have really enjoyed having Papa around too, he is an excellent cook and has been fixing our meals!
Ella continues to be doing great. She adds daily to her vocabulary, right now my two favorite words of hers are purple and bubble, which she says both PERFECTLY!!! At school the other day she said "Help me please" while outside trying to climb a hill and then her teacher had yelled for a little guy to stop "Isaiah stop," and Ella yelled "ZAYA" very cute. I still get a bit frustrated though, she often pops off with words or phrases clear as a bell and in appropriate context only for them to never be heard again. It boggles my mind. I know she knows what she wants to say, and knows how but she still just babbles away. It's just so confusing. She has been showing her attitude a lot lately (nothing new there : ) she snaps at me when I tell her something, and will point at me with a dirty look on her face, and recently she has taken to shushing me, she puts her tiny little finger to her lips and blows, it is so hard not to laugh!
I went to the dermatologist this past Thursday to have a scalp biopsy done. I have had severely thinning (for me) hair ever since Ella was born. I realize that I do have a lot of hair, but there is half as much as there used to be, I don't mind the amount I have right now it's just that it is thinning mostly in the front. I have been doing this comb over thing, parting way over on one side, so that not so much scalp is showing. I am not particularly vain about my hair, but its all I got, people have commented on my hair my entire life. I had gone to a dermatologist in Texas and he has said that my loss was from extreme stress, it was about 8 months after Ella's birth, and it would come back. Well, Ella is almost 3 now, the stress I have now will probably not get any lower, maybe when the kids move out, if Ella moves out and even then not because then I would worry even more about her : ) This doc said that my pattern of loss is consistent with the typical female hair loss pattern, I asked as in old people? I am 29 for crying out loud!! Anyhow, he took two biopsies of my scalp which may I add HURT so now I have 3 stitches in my head which I am supposed to keep moist with Vaseline so I look all greasy. In addition I had a thing taken off my arm (not really a mole, something weird though and it always hurt) and that took an additional 3 stitches. So here I am stitched together, on a crutch all with greasy hair fun fun fun!!
OK, enough rambling here are a ton of pics taken in the past few weeks....
Ella and Riley
sitting on the
coffee table
watching Elmo
Tickle tickle
Hunter and Ella
laying on the
coffee table
watching
Bob-bob
We really do have furniture to sit on, but the kids prefer the table : )
Hunter's school
had a Mother's
Tea for Mother's
day.
It was so cute, they made little corsages and a little gift for us,
then they performed a few songs.
He sang but would
not do the
movements.
He's just too cool!
Our attempt at a
self picture of
Hunter and
mommy
b-day party at a
paint your pottery
place.
Hunter and Emily
(the b-day girl)
they are both 5
Ella and Emily
Hunter and Emily's
brother Logan.
CUTE!
We painted Ella'snails purple. It's
hard to see but she's
showing them off.
Ella dancing on the
table, *sigh*.
Hunter came home
from school and dumped
his hat and lunch box
on the floor.
She kept saying "BYE"
I said are you bubba?
She said "yes."
What happens when
Ella sits on the new
couch. Still very
full of static
Ella's new hat
from Papa
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