It's Soccer Season!
9:51 PM Posted In cameron 6 Comments »
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.(I can just hear the coach now: "Focus, Cameron. FOCUS!")
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There was even some foot stomping and air punches being thrown, if I remember correctly.
The game ended with a score of 3-0 (we lost) but the kids had no clue.



He clearly was not ready for soccer at that point. Class of 2023!
10:00 PM Posted In cameron 10 Comments »
This past Friday, the most handsome boy in the world graduated from preschool. Nguyen and I BOTH were a hot mess and teared up as soon as we saw his class march to their seats.
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.The kids were soooo adorable. They sang many songs and even did some sign language to go along with their tunes which I thought was incredibly cute. Eventually, it was time for each child to walk up to the podium and receive their diploma. Look at my guy!
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.Of course it HAD to be the windiest day EVER but we still managed to soak in such an exciting event for our boy. Gabby was irritated by the effect the wind had on her hair.
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.After the ceremony, Cameron dragged me around to make sure I took his pictures with some of his best buds. First was Makensie, aka "Cameron's wife."
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.And then Cameron's good pal Ethan, aka "Eefdin."
big HUGE sigh of relief!
3:28 PM 9 Comments ».
.I was hoping for an email or a phone call sometime on Tuesday but that never happened so I went to bed Tuesday night with the intention of calling the hematologist on Wednesday afternoon. I was lying in bed on Wednesday morning after having a terrible dream that Gabby DID have Leukemia when suddenly, the phone rang. I knew it was probably the doctor because no one usually calls me that early.
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I immediately saw "Kaiser Permanente" on the caller I.D. and my stomach filled with butterflies. The doctor told me she wanted to call and "give me the good news that there were no blasts found in Gabby's marrow and that she did NOT have Leukemia." I was SO relieved and I am sure she could feel me smiling through the phone. She went on to inform me that although they were still performing the biopsy, she could confidently tell me that there were no signs of Leukemia or Aplastic anemia. It was by far the best phone call I have ever received.
.This raises the question of WHY Gabby's white blood cells/neutrophils got so low. The doctor said it was just a "Transient" (something that goes away on its own) case of neutropenia. Her WBC's are all within normal range now. This was simply the absolute BEST case scenario and again, I am so overjoyed and grateful.
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We're home!
2:39 PM 17 Comments »
.Hi Everyone! We finally made it back home. It's been a long, LONG day and I am so glad to be done with the biopsy.
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We arrived for our appointment right on time but weren't brought back to the exam room until shortly after 9:30. An actual doctor didn't see her until after 10am. Gabby was as charming as ever as she blew kisses to everyone that looked in her direction. Usually she is not in a great mood at the doctors office but she was a little ray of light this morning.
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The nurses prepped her arms for lots of pokes with numbing gel since they could tell they were going to have a hard time finding a vein on her. I am so glad they did because they ended up attempting the I.V. FOUR times. My poor little love has bruises all over her chubby arms but they were finally able to get the line in.
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We were taken to pediatric oncology to get the I.V. started. The room is actually quite lovely and fun with all of the bright windows and TOYS everywhere. Yet still, there is a lingering sadness that is undeniable once you walk in. As Gabby screamed her head off while the nurse attempted to get the line in, a little boy (about 5 or 6) walked over with his beautiful bald head, looked at Gabby and said, "It's okay baby. Don't cry." I immediately welled up with tears. It broke my heart. I found out later that his name is James.
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Around 11am they started administering the drugs that would help Gabby fall asleep. I was a little nervous because sometimes kids with Ds require more medication. This was not the case with Gabby. She fell right asleep! I could have stayed in the room for the entire procedure but I started getting anxious with all of the beeping coming from the monitor. It took me right back to our week stay at UCSF and I wasn't in the mood to revisit those emotions so I let them get the job done and I sat outside with James and his family.
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I was able to easily occupy my time while I waited thanks to my iPhone. I watched James play on the computer while he drank a diet coke (seriously). I am not sure what he was playing on the computer but I heard him say "oh shit" about ten times. No one corrected him and I giggled to myself. I figure he's probably allowed to say "oh shit" when he feels like it. He does have cancer after all.
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About a half hour later, the nurse came out and told me they were done with the procedure and I could come back in. I walked in and Gabby was still out cold with her tiny little hiney up in the air. They took the sample from her hip bone right above her right butt cheek.
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It took over another half hour for her to wake up and once she did, she was ready to ROCK. She literally lunged at me and stood up as if to say, "Let's get the hell out of here NOW." They watched her oxygen and blood pressure for a few minutes and then pulled all of the wires off of her. They gave her some juice and we were on our way.
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The hematologist told me she would contact me as soon as she had some results, hopefully by tomorrow or possibly this evening. Fingers and toes crossed!
Bone Marrow Biopsy at 8:45am
10:51 PM 6 Comments »
"Holland Days"
2:43 PM Posted In down syndrome 10 Comments ».
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...


















