We love our Daddies...

...Nate with his Daddy

with Grampy...

with Grandpa John..

with his Papi...

and his Papi with me....

So much love!

He ate a whaaa?

A cinnamon raisin bagel.......



and a BLACK.....


BEAN....



QUESADILLA!!


So essentially Nate went from eating 4 foods, to about 8 in a week! We're over the moon! I actually got a little teary when he put the quesadilla in his mouth. Any of you who have dealt with picky eaters who try new foods know the feeling I am sure..

"Look Ma, I can even eat it with no hands!"

Becoming a Momma....

took a very long time for me. I remember when Eric and I started trying to get pregnant. We were so sure that first night of unprotected sex would surely knock me up. We laugh about it now.

It's hard to describe the pain of infertility to those who haven't experienced it. I felt broke...incapable...and end...not enough...and so very alone. I was an outsider to a club I wanted so desperately to be a part of. So many nights I would put my hand to my belly trying to will life out of it. It felt so cruel and unfair to me. I felt like a misfit. Each month I didn't get pregnant I felt myself giving in more to the anger and hopelessness. I secretly cursed my pregnant friends. Although I knew it wasn't their faults (that they had what I wanted), I hated and envied them anyway.And I just couldn't (or wouldn't) accept being childless.....

Four years later, after 8 IUIs, an IVF and subsequent miscarriage, and a FET (Frozen Embryo Transfer), I became pregnant with Nate. Although I had taken about 8 pregnancies tests (at least!) I got the official HCG blood test results the day before Thanksgiving. Yes, how perfect is that?

Becoming a momma...and more specifically becoming Nate's momma has been a journey into love.

I still remember the first time Nate really saw me (and not just my boobs!). We were out apple picking and Nate was in the baby bjourn. Eric likes to characterize this time as the beginning of "momma worshipping." That look was full of anticipation...curiosity and vulnerability (Or maybe it was me who felt vulnerable with those eyes locking into mine...)


Over the last two years, we have learned how to communicate with the most subtle of looks or touches....I know all of the ridiculous faces he makes by heart...I know what will make him laugh and that tears won't last as long if I sing My Favorite Things (yes, this is one of Nate's most favorite songs). I feel phantom touches - little fingers pinching my neck - or hands gliding up and down my arm - when we're apart. I know him (as he knows me)...

This love we share is intimate, full of trust, knowing and belonging....

for both of us.

More cheese pizza please!

After his surgery Nate would only eat a handful of things...yogurt, baby cereal, Earth's Best Turkey Dinner, pureed fruit (only in jars), Pirate Booty and Goldfish. AND he hardly had an appetite. It was like we had taken a few steps back again with his eating and we were already feeling behind. There seemed to be so many issues to address with his eating - desire, texture, quantity (for calories), and movement towards some self feeding. Ugh. We felt super stuck and rather depressed about it all. Eric and I kept telling ourselves to keep plugging away with the food we offered Nate. That's all we could do - Right? We were reminded that it sometimes takes 10 tries to get a little one to start eating a new food.

As some of you know, Nate and I took a wonderful trip down to B-more to see my family. We're not exactly sure what magic happened while we were there, but it seemed like Nate changed during that trip. Besides just being in the sweetest mood ever, he was more active, more communicative, and more hungry!! By the time we left, he was eating peas again and a lot more snacks. Whew!

When we came back, everyone seemed to notice something different about Nate (besides his new haircut - hehe). The ENT we saw for his post adenoidectomy follow-up remarked that Nate seemed older. At school, his teachers shared that Nate was signing like crazy and moving around on the floor a lot more - -He could sit and pivot around to get something! Also they were able to get him to eat some regular fruit, English muffin, and waffle. Super exciting.

BUT, Nate still wouldn't try anything for us at home.........

....Well until last Friday........

We were shot from the week and neither us felt like cooking, so Eric threw an Amy's cheese pizza into the oven. After Nate had some pureed peas and a jar of turkey dinner, I decided to offer him a little cheese pizza. Now I should tell you that one of Nate's favorite songs is from a Signing Time DVD. It is the famous Silly Pizza Song. I know some of you will know what song I'm talking about. Since watching those the Signing Time DVDs, Nate has been signing many foods he hasn't tried yet, one of them being cheese. He also was familiar with pizza - and for him, the sign for pizza kinda looked like snake too - a new favorite sign (which also kind of looked like Nate giving us the middle finger too! haha).

Here are both signs:
Pizza (Nate does variation 3): http://www.lifeprint.com/asl101/pages-signs/p/pizza.htm
Snake: http://www.lifeprint.com/asl101/pages-signs/s/snake.htm

Once I offered Nate one bite of pizza, he asked for more and more and more until he ate an entire piece of pizza! I nearly cried.

So without further adieu --- More cheese pizza please - starring Nate!!

My joy......

Tubes In Adenoids Out

Since his birth, Nate has had chronic congestion. On top of that, recent hearing tests (specifically tympanometry) indicated that he has fluid in his middle ear. Very often people with Down syndrome have poor Eustachian tube function. This tube connects the middle ear to the pharynx and allows for ventilation. When the tube is shorter (which is often the case with in children with T21), there is increased potential for fluid to collect (instead of drain). The gunky fluid that collects in the middle ear can make children more prone to ear infections and can cause conductive hearing loss. According to the book, Early Communication Skills for Children with Down Syndrome, an estimated 65 - 80 percent of children with Down syndrome have conductive hearing loss. Even though the hearing loss varies, a build-up of middle ear fluid may make a child hear, "It's fine to go get fed" when you said, "It's time to go to bed."

At our recent ENT visit in January, the doc still couldn't see in Nate's ears. Based on his hearing test, chronic congestion, sleep apnea, and ear infections she recommended long term ear tubes and an adenoidectomy. Well, she said she'd at least try to get tubes in and take his adenoids out.

Well the good news is that Nate had his surgery on Tuesday and it was a success -the tubes are in and the adenoids out. Our amazing doc was pretty determined. She also mentioned that his tonsils were bigger than she thought. It could be another factor contributing to his sleep apnea. Hopefully we'll know more about that after his sleep study in May.

The not-so-good news is that Nate has had a pretty high fever since his surgery. He had some difficulty waking up from anesthesia and did need extra oxygen. After a few hours (with lots of singing and us reading his favorite books to him), we finally got him to stop crying and eat some pureed pears and drink a little milk. We thought he was perking up! Well we got home and felt super hot. He had a lot of difficulty breathing and developed a yucky croupy cough. I think some of that is expected after surgery. Though what is not expected, is that Nate has basically had a fever daily (spiking to 103 and higher) since Tuesday and has been quite lethargic. He's been up for only a few hours each day. Just not his spunky little self.

Today, Saturday, his pediatrician had us come in again. We decided to go ahead and get a CBC on him. This afternoon we got the good news that his white blood cell count is in the normal range, indicating that Nate probably has a virus. He has been more thirsty today and finally ate a little of his favorite snack - Pirate Booty! Of course he crashed again by 5, falling asleep in our arms, poor Beanaroni.

I am trying not to worry....I keep reminding myself that children get sick. They all do. We've just never seen Nate quite so tired - he can't keep his eyes open. He's like a little droopy flower. When he is wake, he has a continuous little whimper. Oh it is just awful. He clearly doesn't feel well and he can't tell us where it hurts. And the worst part -we can't fix it - which is what we really want to do. He looks at us with those big teary eyes and all we can do is hold him tight and say, "I know, I know, it's going to be okay, you'll be better soon...Mommy and Daddy love you..."
(Boy, I wish all it took was love!)

***Edited Tuesday --- Nate's fever is gone!! Wahoo! --***

So here are a few pictures from our week. They seem to capture it all........

Ooooohh - toe light (the highlight of surgery day)


After the novelty of the toe light wore off and Nate realized
that he would rather be home.....

Our sick little boy sleeping in Mommy and Daddy's bed.

Including Nate

As some of you know, I am a special educator. Recently, our school district participated in a study that included taking a closer look at our special education delivery model, how we use paras in relationship to providing FAPE (Free and Appropriate Public Education) and LRE
( Least Restrictive Environment). The study was headed up by UVM professor, Michael Giangreco (see his work at http://vtcite.info/~mgiangre/). The dialog between our special education coordinator, our school principal, and speech language pathologist brought up many questions for me both as a teacher and as a parent about what inclusion means. Do I think all students should be working towards grade level expectations? Or should some students work on life skills? Is the LRE always the general education classroom? How do we fit therapies into a student's day (especially when it often means that students are coming out of their classrooms)? Should all students with disabilities be learning alongside their non-disabled peers most of the time?

Micheal Ginagreco recommended the documentary, Including Samuel. If you haven't seen it, find it and watch it. It is powerful and thought provoking.

Here is the trailer:
http://www.includingsamuel.com/media/Video/ExtendedTrailer.aspx

After watching the film, Eric and I started to talk more about how we wanted Nate to be included. We realized that it was much easier to talk about what we wanted for Nate, rather than focus on the model.

We want Nate to feel included and part of a meaningful learning community. We want Nate to have friends. We want Nate's friends to know and appreciate who he is. We want Nate to develop his reading, writing, and math skills. We want Nate to have the opportunity to participate in the general education curriculum whenever he can (and it seems appropriate). We want Nate to have times in his day where he doesn't have a 1:1 stuck to him. We want teachers to see his strengths and build on them. We want a strong collaborative team that is able to be reflective and think creatively about how to help Nate have a successful school experience. We want Nate to develop life skills so that he can be independent in his adult life.
If I give myself a few more minutes I am sure the list go on....

It's difficult for me to say that there is one way or one model to work with children who are differently abled. Besides there being such a range of disabilities, our children are unique as well. On top of it, there are such differences in the size of our schools, the resources they have, and the teachers they employ. Also what is best for Nate one year may not be what's best for him next year. Needs change (I guess that could be interpreted two ways!).

I am not sure I can say what inclusion means to us in a three paragraph blog entry. It's complicated and full of layers. I do know that after I watched the documentary, I know that how Nate is included has to be fluid, flexible and full of creativity.....

What does inclusion mean to you? What do you want for your children?