My friend Jennifer and I bought our girls matching dresses that we found on clearance at Kohls, they were on clearance so we had to buy them : ) So we had the girls wear their new dresses to church on Sunday, they were so cute! Are we big dorks for matching our kids like they are twins? Yep, but we get a kick out of it, plus we get cute pics!!! Anyhow, we've been busy the kids were both sick last week, Hunter had the croup and Ella had a sinus infection. The kids and I are heading up to Alaska to visit my parents on July 3rd and will be there for 7 weeks so I have been trying to get stuff ready for that trip. It is really hard to pack for Alaska you never know if it is going to be in the 90's or 50's. And what would you know, Ella has outgrown most of her clothes, at least her pants. It's been a little sad getting ready for this trip, it will be our last long summer in Alaska as we are all moving to Washington next year. I always thought I would be moving back to Alaska, I absolutely love it there. It's funny how things change. My mom has for as long as I can remember had the "everything happens for a reason" attitude, it used to drive me so crazy. As I get older though, especially since Ella has been born I guess I can see what she has meant. Every event in my life has prepared me for where I am. It is so weird, when I first had my quad-screen at 16 weeks pregnant and it came back with a 1 in 201 chance of Down syndrome, I was crying on the phone to my mom. She said " I hate to say this, but if I could ever imagine anyone with a special needs child it would be you." and she said " I always knew you would do something with children." It's interesting because I could totally in vision myself adopting or fostering a child with special needs, but was completelydevastated when I had Ella. I guess because it wasn't on my own terms. Anyhow, back to the everything happens for a reason..... I think that moving to Spokane, which is basically because it is better for Ella, will be better than had we moved to Alaska for all of us. My parents are very excited to be moving and starting over again, and Spokane just seems to fit into all of our life styles better. It is so strange though to sit back and think about what you had just a year ago thought your life path was and to see what it is now, but hey "everything happens for a reason" right???? Here is a pic of Ella's favorite thing to do with her dress, EAT IT!!!!
Yesterday was Ella's first trip to the water park. We have been trying to go for the last several weekends, but the weather has been pretty crazy here. We all had a really good time, our friends and their kids were able to go with us, so I had someone else with a baby to sit around with and poor Chris had another guy to go up the stairs and down the slides a hundred times with : ) All four kids were so good, and I'm happy to report that the kids did not get burned, me on the other hand, I'm pretty crispy. At first Ella didn't really know what to think of the water, it was probably a lot to take in, it's really bright so she couldn't really see that well, loud and a little chilly at first. It took a little bit, but I think we may have another water baby. When we were in the lazy river, ahh the lazy river, she actually started to laugh (which is a fairly new skill for her.) She quickly became a fan of swimming, which is a good thing because if it were up to her brother we would go everyday, that kid is a fish and let me tell you he has NO fear, he loves to go down the slides head first. Hunter of course had a blast though was really annoyed when we tried to get pictures, which explains these pics.....
Ella Grace has learned how to play Pee-a-boo, and it is just too cute!!
Ella thinks this is a pretty fun game! Yesterday was Ella's 9 month well baby check-up, even though she is almost 10 months (hard to get into the base pediatrics.) Ella weighed in at 20lbs 14ozs, is 27 inches tall, and her head is 17 3/4 inches. All of her measurements put her in the 95th percentile for girls with Down syndrome!! She is getting so big, I just can't believe it. All checked out good, they do want to retest her thyroid again since she is such a little chunky-monkey and really doesn't eat that much. I came home from the doctors and looked at Hunter's baby book to see what he was doing at this age and was surprised to see that Ella beat Hunter at playing peek-a-boo by a month!!! He was doing some things that Ella has yet to do, but she did beat him at that!
Kayla, from Big Blueberry Eyes, http://mdbeau.blogspot.com/was able to come to our house with her Mommy, Michelle, today and play. It was great to meet them in person as I have been reading her blog for several months now. It is such a special connection that all of us moms of these special babies have. Before I had Ella I wasn't exactly open with people about my personal life and my feelings, but it is so easy to talk to someone who has been where you are. Kayla is the first older child I have met with Down syndrome and I am comforted in knowing that they are just as charming, sweet and feisty as they grow older! Hunter had a good time with Kayla, though I don't think he is feeling very well. The two of them went swimming, Kayla was freezing and shivering like crazy but was very determined to stay in that pool!!! Once we got the big kids all warmed up and changed Hunter fell asleep on the couch and Kayla played with Ella. It was so cute, Kayla kept bringing Ella different toys to play with and offering to share her snack with her. It was very sweet!!! Here is the only picture I got of Hunter and Kayla in together, they were hard to get to stay still!!!
I was not aware until recently that not all insurance companies paid for the triple or quad screen, apparently it was just covered for those who had a greater risk of at risk babies, due to maternal age etc. My insurance had paid for it with both of my pregnancies, thought I didn't have it with my first pregnancy. Anyhow now all insurance companies have to cover the cost of this test. The current statistic is that around 92% of couples who have a prenatal diagnosis of Down syndrome abort their baby. It makes me sick. After my quadscreen I was told that my baby had a 1 in 201 chance of having Down syndrome. That is a half of a percent. At my age, 25 at the time, my normal chances were 1 in 1200. After a level 2 ultrasound showed no markers for Down syndrome the doctor assured us that our baby was "normal." We could have opted for an amnio but the doctor told us there was a 1 in 200 chance of a miscarriage, which of course we didn't want to chance. I was angry after Ella was born that the doctors had been wrong, and wished that I had known that she had Down syndrome. But I now know that it was definitely best for me that I didn't know. I like to think of myself as a planner, like I HAD to know with both of my kids if they were a boy or a girl so I could prepare for them. So, here is what would have happened if I had known Ella had DS, I would have been on the Internet seeking information non-stop. I would have found all of the medical problems that she could have, and how incredibly delayed she could be. I would have been a wreck. Maybe I would have been better when she was actually born, but I doubt it. I also firmly believe that had I known Ella would have been born way more premature than she was since they told me she was premature because of my stress as it was.
I try not to pass judgement on those 92% who abort their babies, instead I just feel sorry for them. Maybe they see all of the medical problems their child could have and envision their futures as the only caretakers for their child.I think the problem is that most OB doctors do not
know what it is like to actually have a child with Down syndrome. I saw the pure surprise on my OB's face when she saw how wonderful Ella is. There just needs to be more information out there and more resourcesavailable prenatally as well as once the child is born. I have given permission to Ella's therapists to give my name and number out to anybody. I have also asked my OB to give my name and number out, though I highly doubt she would, she seems to be the type who would strongly discuss your options. I think that if people who are debating whether or not to keep their baby could see a real baby with Down syndrome, and see that she is just a baby would be better informed than if they just read all the problems they could have.
My feeling is this though, if you choose to have a baby, what makes it okay for you to abort that baby because it is not what you wanted. There is no perfect baby, except the one you have. Here is an article about DS testing http://www.sltrib.com/ci_6101963
Isn't she adorable? It seems like a life time ago that those pictures were taken. Ella was such a sweet baby, (still is) and so cute. I miss her being that small, but I wouldn't want to go back to that time in my life.
It should have been a happy time, but it wasn't. Looking at this picture of me holding Ella I can still see the pain in my eyes and remember what I was thinking that day. We had just come back from a baby shower for a baby girl that was born 8 days after Ella. I remember sitting at the shower and thinking, why was Ella born with Down syndrome and this baby was born "typical." I was thinking, I bet she (the mom) is so glad her baby wasn't born with Down syndrome. Those days really were dark for me. I guess maybe I do wish I could go back to that time, knowing what I know now. I was far too racked with worry and fear, and don't get me wrong I still experience those things every now and then, but my life just seems so "normal" to me now. Ella is just like any other baby just on her own time.
Yes, it's true, my 3 year old has a girlfriend and apparently it is quite serious these days. The little girl in the picture is Wimawee, as Hunter calls her or Emily to the rest of us. She is the daughter of our good friends that we go to church with. A couple of weeks ago we drove past a very large church here in town and Hunter said
"Mom, people get married there."
"Yes, Hunter people probably do get married there."
"I'm going to get married."
with a snicker "Who are you going to marry?"
he replied "my girlfriend."
"Who is your girlfriend?"
"Wimawee is going to wear her pretty church dress. Mom will you buy me a new shirt to get married in?"
"Yes honey when you get married I will buy you a new shirt."
"Yes, I will buy you shoes too. How old are you going to be when you get married?"
AHHHHHH!!! My baby boy is growing up SOOOO fast, it is scary. Sadly when the day comes for him to get married I will look back and remember this conversation and it will seem like just yesterday.
Hunter and Emily are so funny together, Hunter will tell anyone who will listen about his girlfriend. They even cry when they are separated. Emily is 4 and Hunter is 3 and let me tell you those two play so good together, they never fight!!! It's really cool, plus Emily has a little sister that is a week younger than Ella so it makes it really easy for us to hang out with their parents!!! Here are a few pics of Ella and Emily's little sister Savannah!!
Not too terribly much going on today. Hunter is outside "helping" Daddy cut the grass and Ella was just looking too cute in her little dress that I had to take some pics.
Oh yeah, Ella has begun to get up on her hands and knees and rock back and forth, which is just so great!!! I know it looks like she is stuck under the couch but she's not, she backs up as far as she can and then gets up on her hands and knees. It is really cool to watch her, she concentrates so hard and then looks up to make sure I am watching, she is quite proud of herself, and she should be!!! It's hard to tell in these pics that she is up on all fours, but the poor kid can't help it that her arms and legs are so short : )
It struck me this past week just how much Ella reminds me of Hunter when he was a baby. I keep looking at pictures I have taken of Ella recently and thinking wow, I have that same picture of Hunter. Above are pics of Hunter when he was a little guy and Ella, they may not be the best example but they are similar pictures. They remind me of each other in their looks, but especially in their personalities. It is interesting to me now to think back to when Ella was born and realize that I didn't really have any thoughts on who she might be. I know that sounds weird, but it never dawned on me that she could turn out to be so much like her brother. I'm not really sure what I thought she would be like, or maybe I didn't let myself think that far in the future. But here we are, Ella is now 9 months old and a pretty remarkable little girl. I would say she is about a month and a half behind what Hunter was developmentally (though she was born 6 weeks early) but learns a lot like he did. Once she learns something she just takes off. I hate to say this but I think her first word is going to be da-da, every time she starts chewing on a toy she says da-da-da-da-da. Ughh!!! Hunter is such a daddy's boy, and of course said da-da first but I swore that Ella would be a mommy's girl but I already see her heading towards daddy. What do I have to do to make me the favorite?????? : )
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