Tuesday, January 26, 2010

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.

Tuesday, January 19, 2010

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:

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?

Thursday, January 14, 2010

Our Little Champ

It's hard to imagine that learning to get into the sit position could be so difficult. Just look at how hard he's working!

What a champ!-- And also check out those signs too! Go Bean Go!

Saturday, January 2, 2010

Nate's presence....

When I was about 11 weeks pregnant with Nate, I lost control of my car on a major highway. It was around 5 o'clock on a cold January afternoon. I had stayed at work late and was driving home completely exhausted. I remember driving in the right hand lane thinking there was a car approaching me to the left. I quickly jerked the car to the right so much so that I lost control of the car. I overcompensated for this and pulled the car left until I spun around crashing into the guard rail in the passing lane. It all happened so fast. Then there was silence. My heart raced and I took a huge gasp of air. I was alive. Somehow in those few moments there was a break in traffic. It still doesn't seem possible. My mind was already working at double speed. Again and again I played it over in my mind. Surely I was dead. I had to be - right? I was convinced that if I were alive I must have killed our unborn baby. There's no way we could both live through the accident. Maybe I wasn't meant to be a mother. How would Eric forgive me?

The next few seconds were a blur to me. I continued to try and reconcile how and why I was still alive. I shouldn't have been. What about my baby? As the lights from the increasing traffic got brighter I realized that I needed to get out of the car - fast. Trucks and cars were speeding by to the point where I could feel the ground shudder beneath my feet. A family had pulled up behind me and put on their hazard lights. A man (a dad I soon realized) jumped out of the car and asked if I was okay. I was breathing so hard I could barely get a word out. He told me that he would call 911. After he made the call, he headed back to his car to leave. At that point I did something so selfish that I still regret today. I asked the man to stay. I told him I was pregnant and completely terrified. It was like it finally clicked that I was alive. I had to protect my baby. The man quickly herded his wife and two kids out of the car and had them stand by me off in the median until the police came. They could have been killed. It all was terribly unsafe.

The police arrived within 5 minutes or so - Thank goodness. My car was turned in the complete opposite direction, so all traffic on the highway had to be stopped. The man and his family started heading back to their car. I hugged the man and cried. "Thank you for not leaving me," I said to him, "Thank you so much." That was the last I saw of the man and his family. I don't know how I would have gotten through any of it without him.

This event continues to live in me today. I can still recall that split second when I lost control of the car. My heart starts racing and I feel this raw, burning feeling in my gut. It is more than amazing that I survived. A split second before or after that moment and I would have been dead and my Nate-Bean would have just been a dream.

After the accident, Nate's presence in my body and heart became more pronounced. We had survived the accident together. I also felt like in some strange way, it was the intent of his little spirit that kept us both alive. He was supposed to be...

I am not 100% why I have been thinking about the accident.....Perhaps it is all the traveling we've been doing or my father dying so unexpectedly. I do have to say that it strikes me how I was in a situation (car spinning out of control on the highway) in which I should have died (or at least been hurt) and my dad did something that we all do most nights -- he simply fell asleep and yet he died. Based on our experiences we develop some rational about how things work. Neither of these events make sense to me. What or who determines how our lives will unfold or end?

One thing I do know, is that Nate's presence in my life then and now is incredibly strong and healing. Even though it has been difficult understanding my dad's death, I know it would be so much harder if I didn't have Nate in my life. He is determined, willful, curious, engaging, and just so alive.

He is our sweet and very special Bean.

Now for some pictures.......

Heading down to Baltimore...

Nate aspirating Daddy's nose...

Nate with his Grandma-ma on Christmas...

Cuddled up to Uncle David...

My sweet family......