Pictures that make me smile

Nate's nighttime routine: bath, story, snuggle with Mommy

My nighttime routine: tea, pumping, & pictures of Nate

Nate discovers himself in the mirror.....hehe



Peek-a boo! (By the way we love playing in the laundry basket!)

Nate recently became a more proficient roller
and you can see where this got him!

This is an oldie that always makes us laugh -
We saw this face a lot for a couple of weeks.

Eye to eye with the giraffe..horse..what the heck are you anyway animal??

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Beantown continued...

Friday was such a beautiful day. We got ready early and walked over to the hospital. Nate did really well with the EEG. First his head was measured and marked (for correct electrode placement). Next the nurse used sticky tape to place about the 20 or so electrodes to his head. These were attached to many different colored wires. We sang our whole repertoire of songs to Nate -- and as long as were singing, Nate was happy. After he was hooked up, the nurse used a strobe light with Nate. It hurt our eyes, but Nate loved it - ha! Then we fed him to see if he would do the concerning behavior. Unfortunately by this point Nate was super sleepy and just wanted to nurse. So I nursed him and his brain activity was recorded while he slept. Poor Bean only got to sleep a few minutes before the nurse wanted to see him aroused. When calling his name didn't work, the nurse tickled his ear. That woke him right up --- I could tell by the look on his face that he knew he got gypped on his nap. We don't think the results will show much --- but I guess we'll get the official word from the doc next week.
Here's Nate with his head wrapped up.


Nate's eye appointment was long...but very interesting. You may remember that at Nate's PT appointment yesterday we mentioned that he tilts his head to one side. Well the doc thinks that when Nate tilts his head he is actually able to focus and coordinate his eyes better. So rather than this being an issue perhaps related to torticolis, in fact it is an adaptation that Nate is doing to help him see better. The eye doctor also noted that Nate's eyes turn inward when he's trying to focus - and that this too is another way he is coping with being far-sighted. The doc thinks glasses will really help --It'll just be a matter of us finding a way to keep them on!

Here are some more pics of our Boston visit.....

Side sitting with PT, Priscilla Osborne:

Snuggling with Papa after clinic day....


Nate's grandparents came to visit us at the hotel and brought him a new pair of shoes!

Beantown!

On our way into Boston we stopped by my cousin's house. Truthfully they really feel like my aunt and uncle. We hadn't seen each other in over twenty years! We had a delicious dinner and told stories of Great Grandma Zimroot and Peter. What a lovely way to start our Boston visit! Thank you Cheryl and Richie.

So the clinic. First of all, Angela, the DS clinic coordinator is amazing. She made everything about this day feel easy. Second, our little Bean did remarkably well. He was his sweet self from 9 - until 2! Pretty amazing.

When we arrived, a nurse came and did a weight and length check on Bean. He is 19 lbs, 6 ounces and 27 1/2 inched long.

Our first appointment was with the dentist. She talked to us about the importance of preventing cavities in Nate's baby teeth. The dentist swabbed both Nate and I for Streptococcus bacteria (http://en.wikipedia.org/wiki/Streptococcus_mutans). She also did an oral exam - Low and behold she saw several tooth buds on the top and bottom of Nate's mouth!!! Besides seeing the outlines of these baby teeth, we learned that dry red cheeks and smelly pee pee diapers can indicate that teeth are on their way. Just the other day E and I were noting just how pungent Nate's diaper was (sans poop). With the increase of drool, the theory is that babies tend to get a little more dehydrated when they are teething. Maybe this explains our difficult nights! Poor baby!

Next we saw the nutritionist. Nate ate (and of course didn't do his funny behavior stuff or choking). He 's right where he should be in terms of weight and length. We talked food and milk. She did give us the go ahead to start yogurt - yummy!

After this appointment Nate got super sleepy and took a short shnoozey. He then went to see the physical therapist. She was great - so experienced and insightful. On cue Nate rolled from his belly to his back and then from his back to his belly. Such a performer. She had a whole bunch of toys and put him in all kinds of positions. He loved it! At one point she used a little wooden chair as a little desk for him. His legs were tucked under and he could play with his toys on the flat part of the chair seat. I think we really need to build him something like that. The physical therapist did notice that he is tilting his head a bit to one side. Because if this and some of his other gross motor challenges, she recommended weekly PT for him.

Next Nate went to see the developmental pediatrician. The doc asked lots of questions and did a thorough examination of Nate. He recommended that we get a post natal genetic work-up with Nate to see if there was anything else going on w/him and if we were likely to another child with DS. Also the doc talked about accessing more services for Nate. Last, we spent a good amount of time talking about that strange behavior Nate does - mostly when in his high chair. Prior to our visit we shared this video with Angela (http://www.youtube.com/watch?v=dql00S-7sS0) and then she sent it to the docs we saw on Thursday. I guess there was enough concern about the behavior that the doc and Angela wanted us to see a pediatric neurologist. Because we are here an extra day, Angela was able to schedule an EEG this morning for Nate before his eye appointment.

Speaking of our appointments today....we need to get ready! We'll post pics tomorrow.

Nuk Brush

I feel like I have this running commentary on my life going on all the time in my head. And I think if only I could write that down! Is this just a human characteristic? Are you constantly narrating your life? This chatter would make perfect blogging. So much I want to say...and yet I find it so hard to find time to write. It always sounds so much better in my head too. Maybe that's why I keep it there!

I can't write without sharing something about our sweet boy. So here's a video - Nate lovin' the nuk brush. What a cutie!

9 months

Happy 9 months Bean!

Before Nate

It's hard to reflect back to the person I was before Nate. The love I have for him is so overwhelming and scares me at times. I sometimes find myself praying out loud when I am driving -Please please keep Nate safe. Please big truck just stay in your lane...Don't pass me. Just leave Nate and I alone. Inevitably the prayer always ends with -Just please don't ever take him from us.

I can't imagine my life without him.

I don't think I understood selflessness before Nate. God I would do anything for my boy.I sometimes daydream about these awful scenarios in which Nate is in danger. These dreams are so terrible that I don't even want to say them aloud. You probably have had these kinds of dreams before too. I would do anything for Nate. I would give him anything I had.

I am also not sure I really saw (I mean really took the time to notice) people with disabilities like I do now. When I see children or adults with special needs I look for something now...Some kind of gesture or expression that tells me about who they are....what their essence is. Who are you? What is important to you? I am not afraid of what makes you different. What is your story?

I also don't think I really understood what it meant to be present in my life. Boy my days would fly by! Well ...they did before Nate arrived. Now I move from one moment to the next with Nate, never quite knowing where we'll end up. Today I decided to pack up Bean and head into Brattleboro after some snuggle time in bed today didn't result in Nate taking a nap. We ended up walking around (with him in the Ergo carrier) until almost 7 o'clock - This was way past Nate's dinner and bath time. Yes, bad Mommy. BUT we had such a lovey time together. Nate did what I call "mommy worshiping." He leaned his head back and just watched my every move..my every expression. We made funny sounds back and forth to one another. I did my "Oh Boy" surprised look over and over again just so that I could just hear his little grunt of a laugh.

Nate just being Nate is truly the most beautiful expression of what it means to live in the present.

Thank you my Bean for all you have already taught me. I am so glad you're here.

Music Class

Last Fall Nate and I tried music class. Even though he loves music, the classes inevitably put him right to sleep. Yes these were pretty expensive naps. So today Nate and I tried Music Together again. It was nice seeing familiar faces. So many of the babies we had met were now toddlers. Most were walking - or wobbling around now. Nate did pretty well. He seemed more interested in the other children. He really liked it when the teacher broke out the scarves. Of course Nate was interested in tasting the scarves. After about 4 songs (with various percussive shakers), Nate started to cry. I saw that quivering pout and his eyes just filled up with tears. My poor baby! Was it too much for him? I nursed him for about ten minutes and was able to make it back to the group for the parachute (with glow-in-the dark stars underneath). That was definitely fun!

I think today was a success, but I am not 100% sure. Is music class really good for him or is it something that I want to be good for him? Did he like it?

Well it definitely tired him out. Nate and I came home and promptly took an hour and a half nap together. I love sleeping next to him...His hand was tucked under my chin and his feet curled up between my thighs. Snuggled up tight together. So warm ...so happy.

February 28, 2008

I recently found a part of a post I wrote the day after we found out about Nate's Down Syndrome. From 2/28/08

Can you tell I am practicing saying it? Last night we got the call we had been anticipating. Little Bean has Trisomy 21. It is so hard to explain all the emotions....... It's amazing how protective I already feel about my little guy - I don't want people to feel sorry for him or for us. I know Bean will bring great joy to our lives and we can make him very happy. We have no doubt. Everyone has life challenges....from parents with cancer, to house fires, to brothers in Iraq, poverty, to drug addiction (this list goes on..)..... This is just our story. So today begins a new journey for us. In some ways, I am still similar to you...pregnant and totally in love with my baby. In other ways, I am on a different road. I have a lot of learning to do.

It's hard to explain where our emotions are now. In some ways we are just new parents who are totally consumed with our son. We take a gazillion pictures of Nate and call to each other constantly to come see one of the million of cute things Nate is doing. We talk about the consistency of peas...what to do for constipation, sleeping through the night and our quest for the perfect sock "booty." On the other hand we are part of a new family --- the world of parenting a special needs child. In this family we celebrate our small and sometimes unconventional milestones (this week it was Nate grunting if we grunted)...We talk doctor appointments and early intervention. We embrace our differences and try to figure out how to navigate this life that has been given to us.

Right now we are still in what we call the "baby" bubble. At nine months, Nate's differences are still perhaps not as obvious to all (unless you are familiar with Down Syndrome). And truthfully, we don't even really know what others see. We just see our beautiful boy -with his big blue eyes, long lashes, beautiful smile, and delicious cheeks. Eric and I know Nate's Down Syndrome will continue to become more visible. Will our way of seeing Nate change?

The beginning of blogging....

Eric and I have thought about starting a blog for several months now. We hope it'll be a good place to talk about our Nate-Bean and adventures in parenting.

I just love this picture of him.