Wow, I can't believe it my baby girl is 21 months. That means in 3 months she will be 2??? Oh my goodness!! I was looking through old pictures online tonight and found this bunch of Hunter. He is 21 months in these pictures and this is about 2 weeks before I found out I was pregnant with Ella. It makes me a little sad, seeing all the things that Hunter was doing at this age. Anyhow, this is mostly for my family but enjoy these pics.
I love quotes. I have always loved them, especially inspirational ones. I have found that since I had Ella I find a lot of comfort in words. I have been reading off and on Chicken Soup for the Soul - Children with Special Needs. I have actually owned the book for awhile but was kind of burnt out on reading about special needs, so have just now opened it up and much to my delight there are several really good quotes in the book. So every once in a while I will share some that I really liked. I'll start with this one......
"Some luck lies in not getting what you thought you wanted but getting what you have, which once you have got it you may be smart enough to see it is what you would have wanted had you known." - Garrison Keillor
Wow. I think that every mother of a child with Down syndrome that I know will relate to this quote. We have some many dreams and hopes for our children and lets face it, Down syndrome is not one of them. But, knowing what we know now, and loving these kids, we wouldn't want it any other way.
(Don't ask about the hair, this is the product of extreme mom boredom.)
Today Congresswoman Cathy McMorris Rodgers held a meeting here in Spokane to discuss the Congressional Down Syndrome Caucus. It was a really informative meeting. She discussed the mission of the Caucus, some of their goals, and asked for imput. Her beautiful son Cole was there, he is SO cute! We also discussed trying to have a Buddy Walk here in Spokane this year, I'm very excited about that. I took some pics of the kids when we got home, they were looking pretty cute, if I do say so myself!!
Last week, Thursday I think, Hunter and Ella were playing in their room. Ella had climbed up on Hunter's toddler bed and sat a little too close to the edge and fell off. She started crying, more from scaring herself, so Hunter comforted her by giving her his Build-A-Bear police bear. He looked up at me and said "mom remember when we made my bear you said we could make one for Ella when she got bigger." Yep I did. So, Hunter decided that Ella was big enough and that we should go build her a bear. Who could say no to that kind of sweetness? Anyhow, we headed to the mall and Hunter built Ella a bear. He picked out everything, he gave the little heart that goes in the bear a big kiss, and he picked out a sound to go in it, which says "I love you, I love you." Melt a mom's heart why don't ya!! He picked out the outfit including little pink and purple croc's that look just like Ellas. Hunter is such a good big brother, he is so comassionate and is the perfect combination of rough boy but also so sensitive!
We went and hung out with Ella's boyfriend Riley and his family tonight. Riley had surgery on Tuesday to seperate two of his fingers that were stuck together. What a tough little guy he is. He has to wear this big heavy cast and can't use his hand, but boy he sure has adapted well!! It is so cute to see the two of them together! Here are some pictures of the little love bugs together! (oh yeah, I should mention that Ella's eyes look funny because her pupils are still dilated from yesterday's eye doctor visit. I called them and they said she was fine.)
Hey Riley let me help you get this thing off your arm.
Ella's eye exam was today. I was SO nervous about this appointment. I don't know why it worried me so much, I mean yeah glasses would be a pain in the butt to keep on her but in the grand scheme of things it's not horrible. Anyhow, Ella's eyes checked out just fine. The doctor said she is far-sighted but that it is normal for her age. He also said she may sometimes seem cross-eyed but it's because of her wide flat nasal bridge and somehow that gets in her line of vision but that she is not actually crossing her eyes. So, no glasses hooray!!!
I've been having a kind of hard time these past couple of weeks, I guess because Ella has basically had appointments everyday. I'm glad she had all the appointments because it's a lot of things that hadn't been checked out ever that her new doctor wanted looked at. Sometimes it is easy to forget that there is anything "wrong" with your child but then you do all these appointments and it seems new all over again. So with that newness has come some sadness. But I am happy to announce that other than her school we have no appointments on the horizon, so things can get back to normal (whatever that means!)
Yesterday Ella had her appointment with the allergist. They did the skin test and found that she no longer (or possibly never did) has an allergy to egg whites or peanuts. Hooray!!! This morning she had an appointment at the ENT and they were able to dig all the gunk out that was blocking her ear tube (how can so much disgusting stuff be in one tiny little ear?) so she doesn't need a new one!! She has an appointment on Thursday with the eye doctor. I am nervous about this one. We received a letter from her school on Saturday that said she has possible alignment or focusing problems. When she was in the process of getting admitted into the school they take two pictures of the kids eyes with a MTI Photoscreener (whatever that is) and then a team of professionals reads the pictures. I don't think she has any major problem, she doesn't seem to have any problems seeing stuff up close or far away. Man, if she has to wear glasses I am really in for a battle. I can barely get her to keep on shoes, she is a VERY strong willed child! That's it for today!! Oh and keep Ella's boyfriend Riley in your thoughts today, he is currently in surgery at the Shriner's hospital!!!
It was so nice this weekend and we spent most of it outdoors!! On Saturday night we went to a parade here in town and it was a really good one. Saturday kicked off the Lilac Festival (what that is I don't really know) and they had an Armed Forces Torch Light Parade. It lasted 3 hours!!! The kids loved it. We were worried that Ella would be overstimulated and scared from the loud noises (which she sometime is) but she absolutly loved it. She claped and waved for most of the 3 hours! Here are a few pics from the parade.
The start of the parade
and no she is not sun burned
both my kids turn red when they
OH MY GOODNESS a
Look mom. It was so funny he had
to turn around and tell me to look
Ella waving to me as the
parade wore on.
Making the boo-hoo face at dad.
I like this pic cause she looks so
long (thought she's not : )
Earlier in the day we went out
to Nana's house that is being built.
Showing me his muscles!
These next 3 pics are me trying to
capture Ella's new skill. Whenever
music starts she snaps. It is the cutest thing ever! Of course there
is no sound but boy she is trying!
How's that for fine motor skills!
These were at the park on Sunday, we were supposed to be having a get together of the Down syndrome network but only us and one other family showed up. That's okay though the kids still had fun at the park.
That's what Ella's shirt says, and that pretty much sums her up. Ella is very much a do what I want, when I want kind of girl. I keep being told her attitude will serve her well in life, but it's hard to deal with now. She is getting increasingly frustrated with my inability to read her mind and know what she wants. (Her speech therapist has a great idea on how to help her communicate her wants, I will take pictures and explain when it is all done.)
Beautiful side shot of the belly : )
The weather has been really nice these past few days and is supposed to be great through the weekend, so I'm sure we will be spending our days outside. Sunday we are having a get together for the Down Syndrome Family Network at a park here in town, so I am looking forward to that.
Oh yeah, I got an email today, here it is....
Please join me for a special meeting on Tuesday, May 27th to hear about the work I am doing on the Congressional Down Syndrome Caucus. Our goal is to raise awareness of Down syndrome and let parents of children and adults with Down syndrome know about resources that are available to them.
As many of you know, my son Cole was born with Down syndrome. My husband Brian and I are committed to doing everything possible to ensure Cole has every opportunity to reach his full potential. I believe the Congressional Down Syndrome Caucus will be a vehicle to help bring this information to the forefront so all families of children and adults with Down syndrome can lead happy lives.
We will meet from 9:00-10:00am on Tuesday, May 27th, at the Health Education Center Rm. 5 at Holy Family Hospital (5633 N. Lidgerwood). Here is a link to a map of the Holy Family Campus:
It is exciting to see politicians, researchers, and the Down syndrome community coming together to coordinate and advance our shared goals. I look forward to seeing you on the 27th!
Cathy McMorris Rodgers Member of Congress
How cool is that? I'm excitied to hear what she has to say!
Today we ran to Walmart to pick up a couple of groceries on our way home from Ella's school. I was just about done when a man with 3 kids came up to me and said "that must be your van with the sticker out there." Huh? Oh yeah, I have a bumper sticker on my van that says "I love someone with Down syndrome." I said yeah, while staring at his 3 sons and realizing that none of them had Down syndrome. He said "that is nice to see." I said thanks. He talked to Ella for a second said she was cute and then walked off. As he was walking off I heard him say "you boys never did get to meet your cousin." Made me want to cry.
Here is Ella reading books. Her new favorite thing to do.
I asked Hunter if I could take his picture he said "yeah, but I'm NOT going to smile."
Here are pics of Ella's new little ankle braces, Sure Steps.
These shoes are cute but are going back to the store, they won't stay on with these braces on.
I am a mother to two incredible children. Hunter is 8 years old and Ella Grace is 6 years old. My children are my life, my true joy. My life was turned upside down when my daughter was born and surprised us all by having Down syndrome. Since her birth I have come from sorrow and a sense of loss to greater happiness than I ever imagined and I owe it all to The Amazing Ella Grace! Contact me anytime by email firstname.lastname@example.org
My face may be different,but my feelings the same.I laugh and I cryand take pride in my gains.I was sent here among you to teach and to loveas God in the heavenslooks down from above.To Him I'm no different,His love knows no bounds;It's those here among you, in cities and townsthat judge me by standardsthat man has imparted,but this family I've choosenwill help me get started.For I'm one of the children,so special so few,that came here to learnthe same lessons as you.That love is acceptance, it must come from the heart;we all have the same purpose,though not the same start.The Lord gave me lifeto live and embrace,and I'll do it as you do,but at my own pace.-Unknown