Our 1 year well visit...

went well! I again was asked to educate a medical student about Nate and his Down syndrome. I am of course happy to do this, however, sometimes I would like us to just have a regular visit with our doc. Our doc always asks me to point out all of Nate's physical characteristics that are related to DS. I kind of go into automatic pilot now when I do this. Maybe it bugs me because I want the visit to really be about Nate...not just his Down syndrome. Does that make sense?

Anywho, here are his current stats:

Weight: 21.1 lbs
Height: 29 1/2 in.
Head Circumference: 45 cm

Yes, thank goodness, our Bean continues to be healthy. Our big issues now are with his swallowing and possible reflux. Today we meet with the nutritionist and will introduce "thick-it." Thick-it will hopefully help Nate be able to better swallow water. We also got a prescription for a reflux med, Ranitidine, to try. Nate does need to get his hearing tested again, but we have decided to wait and have that done at our next trip to Beantown and BCH.

AND of course we need to give a glasses update! Nate can now keep them on for 10-15 minutes at a time! We actually think he likes them!

I wonder what his world looks like now.........

Nate's new glasses!

Nate's glasses finally came in yesterday. I think the verdict is still out on them. Unfortunately we don't think they fit him very well. Not only is he still a peanut, his ears are lower set and the bridge of his nose isn't as defined. There are wonderful glasses for kiddos with DS, but they don't have sizes small enough for little ones like Nate-Bean. Right now we're just working on keeping them on!

A week ago yesterday....

Our little boy turned one!

There is so much to say about our year with him. It's interesting to us that although we of course loved him dearly since the day he was born (well truthfully conceived!), he felt a little bit like a stranger to us. In the past year his personality has started to reveal itself. Nate Bean is clearly a little person with his own place in our family. He is curious, busy, funny, and just so musical. He loves his yo-baby yogurt but detests spinach and potatoes. Sometimes before he falls asleep, Nate gets super silly and can end up in a fit of giggles. Favorite toys include butterfly, dad's nose, the big white spoon and of course the mirror. He's a talker too --- Dadadadada and some new monkey noises too!

We can't imagine our days without our sweet Bean.
We love you Nate!

Perspective

I have been thinking a lot about perspective. Sometimes it is shifting the way we see something (literally in Bean's case) or life's backdrop that changes our perspective and ultimately our experiences with ourselves and one another.

Nate's big shift is that he's pretty much sitting on his own. About two weeks ago he basically sat all by himself for his whole music class!! It was amazing to follow his eyes and see what he noticed. He played with all the instruments and just loved looking at all the other children. And the cool thing is - once he started engaging more, the other children wanted to engage with him more. At one point, a little girl decided that Nate's lap would be the perfect place to sit. You should have seen Nate's face - It was priceless!

Just a simple shift in in our thinking allows us to see all the things Nate can do.
Again, it is all in perspective.

This and That

The last few weeks -- or has it been a month (yikes) have felt like a blur. Lots of sun...laughing...sleepless nights...and baby babble....

First the swallowing study....Here's a pic:


The good news is that all is well on the swallowing front. Nate still can only handle pureed food. Looks like we may have to talk to a SLP or feeding specialist about that. In general eating is going better. He is eating 3 meals now!

Also - the EEG came back, "relatively normal" - however, the doc still recommended that we follow-up with a neurologist. I should note that at first we thought we would just wait to see a neuro. But over the last few weeks, Nate's odd behavior continues to increase -and not just when he is eating. He also is doing some weird eye-rolling-in the back of his head stuff. Not sure what to make of it, but are thinking we really do need to see someone.

Ahh - the sleepless nights. It's still so funny to me how many times I heard that Down syndrome babies sleep well. Ha! Last night was our hardest night yet. I am not sure how any of us will function today. I think Nate was up every 30-45 minutes last night. At this point we just want something to show for all of our hours awake. A tooth would be nice.

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??

.

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!