Christmas Morn

On a very cold and snowy Christmas morning, two very happy kids awoke at Aunt Katie's and Ken's place to find that Santa had found them, even though we weren't at home. The big hits of the day were the little green collapsing suspension bridge and Amtrak train (asked for by Alexander for MONTHS) and a giant ball pit. It was the most wonderful time of the year.

Merry Christmas Phoenix - You Suck

We are home from holiday travels!!! It was so nice to see family and take a long computer break, but it sure is nice to sleep in my own bed and plug back in. What's NOT nice is the credit card bill I received yesterday. A credit card bill from a Visa card that has a zero balance and that I had to dig out of a desk. A credit card we have not used in forever, but keep for emergencies. A credit card that now has $1,709 on it.

You might remember less than a year ago when Mark was in Europe and got his card copied. We got a very early call from Scotland Yard about the Euro-thieves and our international debit card debacle. The thieves got their cash but eventually we got it resolved.

A few weeks ago I received a letter from my hometown bank (where I have this Visa card) letting me know that I could get a new one as mine may have had a security breech. "But it's got a zero balance, is in a drawer somewhere, and hadn't been used in ages." Obviously I didn't get a new card and according to the statement, someone in Phoenix, AZ had a very good Christmas on me at Walmart. There are 4 charges totalling $1,709 and a fifth purchase was attempted, but the fraud alert had kicked in and put a hold on the card. Apparently $1,709 in Walmart charges, in one day, out of state, triggered what's called a prism alert. Since I hadn't given Visa my new phone number (didn't cross my mind) I only discovered this when we got the mail.

Seriously? Seriously. The Visa department says I used my card somewhere (Walmart, Target, or somewhere) even if it was over a year ago. Then recently the thieves hacked into the store (merchant), got my name and card number, and made a duplicate card. As soon as I get the paperwork back to them, Visa will take care of the rest and I should get my money returned. Since I have a great alibi (our level II ultrasound took place on the spending spree day) I can't imagine that it won't work out. Still, some jack#@@ used MY name to rip me off and it makes me mad. Twice in 1 year! Even with a police report, I seriously doubt the thief will be pursued. In the end Walmart will eat it and I think they should for not getting ID.

O Christmas Tree

Click the bottom 2 pics for more info about Reece's Rainbow

Playgroup

Developmental Playgroup has been a wonderful thing for Sophie. It incorporates all of her therapies, plus has the added benefit of social interaction with other kids. She has really done well in playgroup.

During art time a couple of weeks ago when Sophie was using the dotters, she busted out with "dot, dot, dot." Mark was able come to group last week and he caught her saying "dot, dot, dot" again!

Ice Not Nice

Today was supposed to be Alexander's last day of preschool for 2 weeks. We got socked with an ice storm overnight and school is cancelled. He had a holiday party scheduled complete with gingerbread house decorating and spent some time last night coloring pictures to go with the little gifts for his preschool teachers. Oh well. At least we already made and decorated Christmas train cakes at home.

At 4:30 am Mark and I both heard a very loud whoosh/thump coming from outside. It reminded me of when the drunken teenager crashed the car (and without the neighbor's car to block it, would have landed in Alexander's bedroom). I was seriously freaked out that there was another accident or someone breaking in. I stood outside as Mark investigated. There were a lot of tree limbs down in the neighborhood due to the ice and we figured that's what we heard. However, this morning I discovered that a limb was down near our back deck and that it snapped a wire off of the house. I'm thinking that was what we heard as it was attached to the house off of my bedroom. Since we haven't lost any power, heat, cable, etc. I can only assume it's the phone wire. We only have cell phones right now.

As for today, we're iced and fogged in. Maybe with Mark home I can sneak away and get some presents wrapped. I hear my hometown got 8.5 inches of snow and is expecting more over the next few days. Joy. This is the back deck. You can click to enlarge and see the snapped wire draped off of the deck. And, that isn't snow out there. It's not nice ice.

Hearts and Lungs

First, everything is fine. However, yesterday at my prenatal appointment with my midwife I got to hear a few not-so-fun things:

I can't find the heartbeat.

Have you felt movement recently?

Have you had an ultrasound yet?

After the nurse failed to find the heartbeat my midwife came in and asked how I was. "I'll be better when I hear her heart." "Yes, let's do that right away." I held my breath and panic at bay but when a million years passed and just as I was about to ask, what's next? Maybe popped in with a strong thumpety thump. Guess she just wanted to play a trick on her old mom. Still, my midwife called it their scare of the day. Not fun.

Second, Sophie has croup, again. It's the third time since November. Each time she gets it, her ped wants to listen to her lungs, which is fine with me. However, he trusts that I know what I'm doing and has given me extra meds (steroids) to give her if need be. Two nights ago around midnight I crushed up the dexamethasone (a steroid) and shortly after she was able to sleep without coughing. Yesterday her ped said her lungs sounded fine and she had no fever, but she never has a fever with the croup. Her ped changed up her meds upon my request. After a tip from a downsynner we got a steroid in liquid form, prednisolone. It seems to go down great as I'm sure the sweet taste helps versus the icky crushed pill in apple sauce. The pill was one time lasting 72 hours and the liquid is twice daily for a few days. Both need to be taken with food or milk. Her dosage is very small.

It seems that until she gets older and bigger that she may be prone to developing croup when she gets a bad cold. Her airway is just too tiny to be able to handle it well when her system is clogged or swollen and then barking cough starts. It's an awful sound, but the worst is during a coughing fit when she tries to inhale and can't very well (a squeaky sound called stridor). That's the part that gets me. Fortunately the spells don't last very long. She'll be on the steroid for a few more days and I have plenty of refills if we need them. She's sleeping with me so that I can monitor her breathing better. She went to bed last night at 5:30pm and slept quite well till 7 am, so I'm hoping for a better day today.

On a really positive note, Sophie has become an expert crawler and has begun to favor crawling vs. her signature sidewinder move! She's pulling to stand all the time and is one heartbeat away from cruising!!!

DSN Holiday Party

Last Monday was our local Down syndrome group's holiday party. It was a blast last year and this year was a lot of fun too. The food was great and there was plenty of room for the kids to run around, including a dance floor that Alexander really cut up. He had a sweaty head within 5 minutes of us arriving. Besides the fun music and activities, Santa's elves, the Girl Scouts, showed up to give each kid a stuffed animal. Our local DSN did a great job once again. I'm happy that Alexander will have memories of "always" playing with kids of different abilities.

I rarely paint my nails. It takes too long, I mess them up, and they chip within a day or 2. Well, I painted my nails and turned my back for a second and this is what happened. I found him trying desperately to wash it off in the bathroom.

Sophie got a bear (looks a little like a rat if you ask me) that has a neat texture

Alexander chose a puppy for his gift

Sophie and our favorite 14 year old Miss P.

Button nose

Ok ok. We were waiting for 2 family members to return calls before announcing the news, but enough's enough already.

Isn't she lovely? And now the search for a name begins...

Photo Shoot

Maybe the May baby gave us a few laughs during the US. This little one wiggled his/her index finger as if to say, "come here" and then later did the rock-n-roll sign with his/her little hand. In this one I swear he/she was posing as Rosie the Riveter.

In this shot I am reminded that although this little foot is only 1 inch, it's powerful and is getting bigger by the day.

After

After. A period of time referred to after a huge life change. Life was never the same after...

Big ones for me include after Mark boarded a plane to move to Russia for 7 months shortly after we first fell in love and I knew I wanted to be with him for the rest of my life. Or, our engagement after he proposed on Mount Sugarloaf.

Other afters include the first positive pregnancy test, then the second, then the third. After learning that Alexander was a boy, after learning Sophia was a girl, and our Level II ultrasound today.

Ultrasounds (USs) have been very traumatic for us. With Alexander, they were concerned about the size of his head. They thought it was too big and monitored him carefully. It is big. He was 9 lbs and was stuck in labor forever, coming out only after a suction cup on his noggin and the NICU doc giving me one last chance before a C-section (28 hours 40 minutes of labor - 4 hours 40 minutes hard labor and pushing). With Sophie, we were told she was a girl, then within moments that she most likely had Ds. We learned of soft markers, not the kind made by Crayola, (her heart, bowel, her duodenal atresia, nuchal fold measurement, fluid on her right kidney, limb length). We were taken to an empty room with a box of tissues. We were given grim statistics and an option to terminate. Subsequent ultrasounds with Soph (eventually weekly) measured my low amniotic fluid, which was weird given her duodenal atresia. USs were not joyous events that many other parents experience. They were hard, life altering ones, and they always led to a new - after.

Fear. As with Sophie, we will love and accept with open arms any child given to us. But, that does not take away the worry I've had. It's not necessarily fear of Ds, because we've become experts as all parents of kids with Ds must be. However, since every kid who has Ds is different, with different strengths and different challenges, having Sophie does not make us an expert on another child with Ds. See the dicotomy? Becoming parent to a child with special needs also opens your eyes to the many, many other (and scarier) things that can happen.

A bigger concern has been my own reactions and feelings about this new child. If this new baby has no special challenges, and I am happy, how does that effect Sophie or the many other families I've come to love who have kids with special needs? If this child does have challenges, how will I cope, how this child's needs effect Alexander and Sophie? Sometimes I think just too damn much.

Yesterday as I counted down the last hours of this period of time called "Before," or the last day before our level II US and Maybe getting some answers, I was a mess. Something changed in the night and I woke with such a feeling of calmness and peace, that everything would be ok, whatever may come. I've learned not to question when this happens, but to simply be grateful.

As with both kids, we skipped the quad screen and any other testing prior to the mid-pregnancy US. With my "history" I went straight to a level II and meeting with the perinatologist today. Mark was with me and the kids were having a blast at home with Cathy and the kids (THANK YOU)! Our tech, Miss J. was an angel and the doc was great.

Suffice it to say, there were limited statistics today. No discussions of our 'options.' No amnio. Just a repeat level II US in a few months and a congratulations. Kids with Ds can and have been born after USs that miss soft markers or even heart defects. This was a targeted US and I am confident in Miss J's skills and Dr. K's knowledge. Even if Maybe has Ds, or another challenge, so far we have no physical concerns. (I just hate the term birth defects).

And I am happy. And I am newly confident that this happiness takes NOTHING away from my love and acceptance of Sophia or our friends with special needs. I feel a bit like the Grinch who's heart grew three sizes that day. I'm learning. I'm growing. And the balance of males and females has officially tipped in our home. Of that, there is no doubt. As for Maybe's sex, well, I'm keeping that to our family for at least tonight. I've never been really good at keeping secrets this good and really, we've moved into our newest "After." Wanna come with? Maybe tomorrow...

I (heart) John C. McGinley

Many of you know him as Dr. Cox on Scrubs. Most in the Ds community also know him as a loving father of Max, his 11 year old son who happens to have Down syndrome and who has been the Buddy Walk spokesperson for a few years. Shortly after moving to our current state, we started receiving a magazine called EP or Exceptional Parent. We didn't sign up for it and I've wondered if it's a part of EI, but we do enjoy it. In the latest volume 38 issue 12, John is on the cover. I've seen him speak about Max and Ds before and he did a great job once again. Here's an excerpt from his interview. BTW, John, I'm game to join a new militant arm of the NDSS any day!

EP: As someone with years of experience and great success in the entertainment industry, how do you feel about the portrayal of individuals with disabilities in television and film?

JCM: Well, I have a pretty strong feeling about that, mostly as it pertains to kids with Down syndrome because kids with Down syndrome have the physical markers of persons with challenges. I mean, you see some kids with autism, and you wouldn't know until you saw either their behavior--or something. Well, kids with Down syndrome have markers and so when you see cowards like the "Ben Stillers of the world" producing films like Tropic Thunder and dropping the "R" word 17 times in 5 minutes...well, I'll tell you something, when I see Ben, that just makes me want to pick on HIM now. Because there's no militant arm of the National Down Syndrome Society (NDSS) that's going to respond to a transgression--like there is in the Jewish community with the Anti Defamation League. Or, God forbid, you go and say something against African Americans; you're going to have the NAACP in your kitchen. We don't have the militant arm at NDSS. We have kids who when THEY go to a protest, it looks funny because they ARE so nice, and you know damn well they would rather have a hug than hold a placard. So, it really cuts me to the core. And it feels like the perfect storm of cowardice when you pick on people who can't return service. So for Ben Stiller--who directed Tropic Thunder he is just a punk coward.

EP: So Ben Stiller is not a friend of yours?

JCM: He couldn't possibly be a friend of mine. Because he worked with the Farrelly brothers--doing Something About Mary--and the Farrelly brothers have championed a lot of special needs causes. So there is no way that you're not--if you're Ben Stiller--aware that you're perpetuating a negative stigma and that your doing something hurtful. And so while I don't want to be another actor who's going to tell somebody how to talk and what's politically correct and what's not, if you're aware that you're hurting either caregivers or people with Down syndrome, what's the upside?

I don't like exclusionary language. I hate it. Because all it does is perpetuate negative stigmas about different groups. And where's the upside? The upside, I assume, is when people use language like that is that someone is trying to elevate themselves by denigrating whoever the subject is. And it doesn't work that way. It just makes you a jackass. And I loathe it. I hate bullies and that to me, is like bully language. I loathe it.

Lunch with Santa on the Train

Know any kids who like trains? Yesterday we took a ride with Santa on a train and had a jolly old time. Lunch consisted of peanut butter and jelly sandwiches, sugar cookies, chips and Capri Sun juice packs. Mark and I got such a kick out of the squeezy silver juice containers that you puncture with a straw. Neither of us had had one since we were kids. The 'orange flavored juice blend drink' tastes the same as it did 100 years ago.

As for Alexander's tooth, well, it may be a 'black tooth' just like his daddy had as a kid. The x-ray showed that there wasn't a fracture to the tooth, but the dentist believes he had to have bumped it. Neither Mark, myself, or preschool can remember any such 'trauma' as it's called. Likely the tooth was bumped and caused damage to the nerve which died, turning grey. The only chance that it will lighten up and heal is if it was only a bruise-like injury. These can lighten up after about 6 months as blood flow to teeth is not good. We'll keep an eye out, especially for an abscess as that would require pulling the tooth, just like his daddy. Mark's little brother had a black tooth too. However, after going on a bike ride with his cousins and knocking 5 teeth out (including the black one), they didn't have to watch it anymore. Yikes!

Personality

If you know me, you know this description is pretty spot on. Weirdly spot on even. I took Dr. Phil's Personality Test courtesy of Renee and scored in this range:

31 TO 40 POINTS:
Others see you as sensible, cautious, careful & practical. They see you as clever, gifted, or talented, but modest (well, I don't know about this part). Not a person who makes friends too quickly or easily, but someone who's extremely loyal to friends you do make and who expect the same loyalty in return. Those who really get to know you, realize it takes a lot to shake your trust in your friends, but equally that it takes you a long time to get over if that trust is ever broken.

It's the friendship part that hit a chord with me. Wanna know your score? Click here to visit Renee's blog and take the test (its only 10 questions) and be sure to let me know your score and if you think mine is correct.

Family Fun at the North Pole

We stopped at a greezy diner last night for breakfast at dinner and I drove. After dinner while putting the kids in their car seats, Alexander informed Mark of the following:

(Alexander) "You should drive Daddy. Mommy isn't a very good driver."
(Mark) "Mommy is an excellent driver."
(Alexander) Mommy is good at the computer."

There is something wrong with that on so many levels.

Also, yesterday Alexander's top right front tooth began to turn grey from the inside (as in not a stain on the outside). The grey is the top half of the tooth. He has not had any mouth injuries that we know of, including at preschool. It's even darker grey this morning and we're going to the dentist today.

Mark and his little brother had a 'black tooth' as kids, but both were from injuries where the tooth got chipped. Mark's ended up getting an abscess and pulled leaving him without a front tooth for years. Since I too had a front tooth accident (losing both in a tree swing accident a year earlier than they would have fallen out), and remember it well, I'm freaking out a little bit. I know it's just a tooth, but he's only 3. Man!

Then, last night our local hospital sponsored an event filled with live reindeer, Santa and Mrs. Claus, teddy bear check ups by the doctors, and crafts (making reindeer hats). This time Alexander wrote his wish list and delivered it to Santa himself without running away. Sophie had a good time too.

Christmas Lights

Whew, we just finished decorating our house with Christmas lights. It took a whole weekend to do. Merry Christmas!

If you believe that, I've got some ocean front property in Arizona to sell you.

Inclusive Schools Week

Inclusive Schools Week (Dec. 1-5) is an annual event sponsored by the Inclusive Schools Network (ISN) at Education Development Center, Inc. (EDC), which is held each year during the first week in December. Since its inception in 2001, Inclusive Schools Week has celebrated the progress that schools have made in providing a supportive and quality education to an increasingly diverse student population, including students who are marginalized due to disability, gender, socio-economic status, cultural heritage, language preference and other factors.

Last year, our local Down Syndrome Network participated in National Inclusive Schools Week by donating books about Down syndrome to local schools. Since Alexander is in preschool this year, we were able to participate. Yesterday he donated "Hi I'm Ben...and I've Got a Secret" to his preschool's library.

As a bonus, here are a few shots from Sophie's playgroup yesterday.

This mat was not only colorful, but had many different textures as well.

Girls will be girls...

Maybe

Maybe we're having another girl in May. Maybe it's a boy. Care to guess? Take the poll on the right through noon next Wednesday, December 10th. We have a Level II ultrasound in the next week and a half and just Maybe we'll have an answer. The outcome is a big one. As of now our home is equally balanced. We have 2 cats, 1 boy, 1 girl. We have 2 kids, 1 boy, 1 girl and of course 1 Mom & 1 Dad. I think I know, but I'm not telling until we know for sure.

The following old wives tales are true for me and call for a boy:
You are craving salty or sour foods
You are craving protein -- meats and cheese (what am I NOT craving?)
Your feet are colder than they were before pregnancy (it is cold out)
Your hands are very dry (I do wash them 50 million times a day)
You are having headaches (got one now)
You add your age at the time of conception and the number for the month you conceived and the sum is an even number

Yet these are true too, and they call for a girl:
Your baby's heart rate is at least 140 beats per minute
You are craving sweets (ridiculously)
You crave orange juice (every morning)
You don't look quite as good as normal during pregnancy (dang)
You are moodier than usual during pregnancy (Mark, no comments please)
Your face breaks out more than usual (yuck)
You refuse to eat the heel of a loaf of bread (always have)
Your pillow faces south when you sleep
The Chinese gender chart calls for a girl (it was right for Alexander, wrong for Sophie)