I have been meaning to blog about this for quite some time but I wanted to get some good pictures of my sweet girl before I did...
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Last year I blogged about the crazy little signs I experienced when I was pregnant with Gabby. Well, last week I was spring cleaning and going through Gabby's clothes, preparing to store her winter duds and make way for summer attire. As I was folding and sorting I came upon the cutest little dress I purchased when I was pregnant, a week after I found out Gabby was a girl. I was SO excited to finally be able to buy girly stuff and I specifically remember sitting in front of the gymboree website one evening, scouring over all of the possibilities. Among several items in my cart was a precious blue dress with Tulips dancing along the bottom of the skirt. It was so different from what I would normally buy, in fact, even today Gabby has very little clothing that is not pink! But something about this dress appealed to me and I envisioned my little hapa-girl dancing around in it so I clicked "purchase" and it arrived 5-10 business days later. ;)
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Finally, at two years old, Gabby is able to wear this dress (size 6-12 months) but seriously, how sweet is she in it? I just love it.
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There is a point to this story, I promise, but just a little background info first...
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Most of my "mommy" friends know that I am a junkie when it comes to gabby-clothes. I'll be honest and call it a sickness. I can be out and about in public and recognize immediately if a child is wearing Janie and Jack, Boden, Gymboree, etc. What's worse is that a lot of the time, I can even recall the name of the specific line (I know, I know...I told you I was sick!) So anyhow, as I pulled out this precious dress last week, I immediately remembered the name of the line it came from.
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"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

This poem is well-known amongst the Ds community. I doubt there is a mother out there with a child with Ds who doesn't know of it. It's so beautiful and so true...

Thanks to Chrystal for always finding the coolest videos and links. I cannot wait for this!

It should air on HBO sometime in October!

A fellow blogger and mother of the sweetest little girl you ever did see has just made a very exciting announcement over on her blog.
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Reece's Rainbow is an International Down Syndrome Orphan Ministry and just last week I found myself viewing pictures of adorable children with Down syndrome who are waiting to be adopted. My heart broke as I read that most of these kids will not survive once they are institutionalized around age five as the institutions do not have the funds to properly take care of the children.
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I have been thinking about these kids for the last few days and then today as I was catching up on my blog reading, I read that Michelle and her family are beginning the adoption process to adopt sweet "Lily." I am so excited for their family and ESPECIALLY Lily who will undoubtedly have an amazing life thanks to her new family!! I was definitely crying happy tears today!
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Wow!! I am just so excited to read about their journey and to see Lily come home!!
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You're an amazing family, Zoromski's!!

Okay, so...I hate speech therapy. I know I should give it a chance-and I will- but seriously, our first session sucked!
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The first half was fine. We basically just played and emphasized sounds of the objects we were playing with (which I do regularly, but whatever) and then our therapist decided we should have some snacks. This is when I started to get nervous because you see, when you mess with Gabby's food, you should be prepared for a war. She wants it her way and you BETTER be quick about it. Sigh.
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A common characteristic in children with Down syndrome is that their teeth come in later than typical babies. At sixteen months old, we are finally seeing signs of two top first molars and they are slowly taking their time to appear. I first discovered them about three weeks ago (after suspecting them for a good six months) and today they are still sitting where I found them. Just chillin'.
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Anyway, because of this, Gabby has since moved on to more solid foods and has learned to just swallow everything whole. And can I just say- Thank God for that mini food processor I bought recently! Anything we eat, Gabby eats as well (after a quick spin in the mini FP!)
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So here I am thinking I am doing a good thing by letting Gabby eat pretty much anything we eat however it is she wants to eat it (ie: swallowing whole.) I figured once those teeth came in she would figure out what they were for and start properly chewing. WRONG. Apparently, babies chew even when they don't have any teeth (who knew?!) and I have been instructed to start offering crackers or puffs to Gabby by putting them in the side of her cheek. One problem- Gabby HATES this plan. Her philosophy is that if it doesn't come on a spoon A) It's gross, and B) It can't get in her mouth/stomach fast enough which leads to major tantrums and hyperventilating which = choking on cracker/puffs.
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I should probably take video one of these days so you guys can really understand what I am dealing with here...it aint' pretty. Needless to say, the second half of our session was a big fat FAIL and I really felt bad for our speech therapist. She seemed at a loss. I was sweating, she was sweating, Gabby was sweating...it was a hot mess.
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My homework for the week has been to offer foods that require chewing in between meals to get Gabby used to it and to get her accustomed to the fact that just because she throws a tantrum doesn't mean she'll get the food her way. I must admit that I haven't been offering her crackers or anything dry because I am SO terrified of her choking. Instead, I have been offering cereal bars (broken up into tiny pieces) and other soft things like corn bread, etc... and she has been self feeding herself those foods without incident. I'm not convinced she isn't still swallowing them whole, but I think it's still progress.
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Sigh. Next step is that darn straw cup.

First of all, Happy Mother's Day to all of the wonderful Mother's in my life...you are all amazing and very much appreciated.

I have been reading many-a-blogs lately, the majority of them written by mothers of designer babies. Tonight I realized something....something so powerful and encouraging. Out of all of these mother's, not one of them feels sorry for themselves. In fact, I will venture on to say these mother's are the HAPPIEST mother's there are, myself included.

Of course, 5 months ago I could have never imagined I would be typing these words. But HOLY SMOKES, I am HAPPY!

Almost six months ago I was thinking to myself how craptastic my life was. I was thinking about how we would never go on cool vacations...how my daughter would never get married or go to a highschool dance...or have sleepovers. I wish I could travel back in time and slap myself across the face and say "WAKE UP SHEREE!" I wish there would have been a crystal ball for me to peer into. That would have been fabulous.

I hear a lot of people say "your attitude is amazing" or "wow, you've really got it together." I find myself trying to disect those words after the fact, like when I am laying in bed at night..."Is my attitude really amazing? Do I really have it together?" The more I think about it, the more I realize...Gabby is a freakin' miracle worker. She makes my job of "doting mother" easy as pie. How could I not have anything but an amazing attitude?

In fact, it's not just me she has this effect over...it's anyone she happens to cross path's with. She brightens people's days...I see it often. I have yet to go out in public with her and NOT hear at least two people SQUEAL over her.

Four years ago I had a vision of "the perfect life." My perfect life consisted of my husband and I living in our fabulous home, driving our fabulous cars with three fabulous carseats in the back. Cameron came along and added more to my dream...my handsome boy. He would protect his baby sister...whenever she came along. We would have the all-around perfect, multicultural American Dream! My kids would excel in school and go to great colleges. Maybe one would be a doctor, a lawyer, or a school teacher. Then, we would retire and move to our beach house somewhere in Southern California. Our kids would come to visit every weekend. My husband and I would travel the world...just like in the movies.

Then the stork with the pink scarf came five months ago and crapped all over my dream... or so I thought at the time. I was happy for my beautiful girl, but let's get real...I was pissed off. I was in serious mourning. Where was my baby girl that would grow up to be a beauty queen, a cheerleader, a mother?!

Next is the Ventricular Septal Defect. This is a hole between the hearts two lower chambers.

Partial AV Canal Defect: There are two common types of atrioventricular canal defect — partial and complete. The partial form involves only the two upper chambers of the heart. The complete form allows blood to travel freely among all four chambers of the heart. Both types allow extra blood to circulate to the lungs. Ensuing problems overwork the heart and cause it to enlarge.
Atrioventricular canal defect is often associated with Down syndrome.

Persistent Left Superior Vena Cava...this isn't really an "issue" but she has this going on too...

Okay and now I just realized that I forgot to do a diagram for her PDA (Patent Ductus Arteriosus) so I'll just copy and paste about that:

Patent ductus arteriosus (PDA) is a heart problem that occurs soon after birth in some babies. In PDA, there is an abnormal circulation of blood between two of the major arteries near the heart. Before birth, the two major arteries—the aorta and the pulmonary artery—are normally connected by a blood vessel called the ductus arteriosus, which is an essential part of the fetal circulation. After birth, the vessel is supposed to close within a few days as part of the normal changes occurring in the baby's circulation. In some babies, however, the ductus arteriosus remains open (patent). This opening allows blood to flow directly from the aorta into the pulmonary artery, which can put a strain on the heart and increase the blood pressure in the lung arteries.

So there you have it! The princess was among the 40-50% of babies with Down syndrome born with congenital heart defects. She is monitored very closely by her regular pediatrician as well as a pediatric cardiologist. In fact, we had an appointment today for a follow up EKG. Everything looked well. We are scheduled for another one in three months. To be honest, the more it get's put off, the more nervous I get. Of course I am terrified of my baby having open heart surgery, but at the same time, I just want her fixed.

Her cardiologist noted today that in the past seven weeks she has gained exactly one pound...no more, no less. This isn't great and it isn't horrible. We will have to continue to watch her closely through these winter months, especially. Gabby has qualified for Synagis which is a series of injections given monthly from November through April to help preven RSV. RSV is common in premature babies as well as babies with heart problems. Dr. Riverra told me today that if Gabby get's RSV and heart surgery is needed, it CANNOT be performed for at least two months after the onset of RSV. So, we were sent home with special instructions to be EXTREMELY careful around ill people. Everyone in my house HAS to get a flu shot. No way around it. It's going to be a stressful winter.