Sunday, September 13, 2009


We spent a wonderful weekend at the Outer Banks. We visited a lighthouse and enjoyed the beach. We rented a condo, and lucky Otis was able to come with us. The weather was perfect, and we truly had a great weekend away. Very peaceful.

With everything that we have going on these days, its easy to forget to find peace in our own family. Every now and again, its good to have a weekend where you can just sit back and watch the waves.

Thursday, September 10, 2009

Will's turn at school

We've finally gotten Luke used to preschool to a point where he walks in, kisses me goodbye and closes the door as he waves goodbye. So different from our little guy just one short week ago! The two week rule held true for us with him.

So you know what that means, right? Time to start Will on preschool! Hopefully not to repeat the whole "two weeks of drama" thing, but we were prepared to fight that fight if necessary.

On Will's first day, he went for a half day with Oma. She was there to show the new teachers the "Will ropes" and to help out with the transition. While we want Will to go to school with typically developing kids and do as many of the "normal" preschool things as possible, we know that he has a lot of things that make him special and need some additional focus.

Our main concerns are feeding, positioning, and the timing of his dosage of afternoon Neurontin (medicine) that is administered through his g-tube. His school has about one third special needs children, but that can mean so many things. We know there have been other children with cerebral palsy there before, but also many other disabilities too. So we spent some extra time with the teachers, walking through training for all of the focus areas that we have for Will.

The first day was a little rough - as expected. Will doesn't eat well for new people, and because so many of the other children in his class are also in transition, it is noisy at times with crying and upset kids. He did truly enjoy outside time with his classmates, as you can see in the photos below! Will came home to nap that day.

On day two, we had kind of a repeat of the first day. Oma walked them through Will's Kid Kart, stander, feet DAFOs, and his new hand positioning "mitts" ( Again, though, difficulty with feeding. We were a little worried, with everything that we've been through with his weight and the vomiting and the failure to thrive... but kept up hope that Will would warm up to everyone and his teachers would keep trying to feed him.

Today was Will's first day alone (Oma and Opa hit the road on their return to Texas this morning). Luke and I dropped Will off a little early so that we could walk the teachers through how to administer Will's Neurontin. We talked about our goals for Will's feeds, and told them that we have confidence that things will work out if everyone keeps working at it!

I am happy to report that Will had an absolutely fabulous day today! He ate relatively well for his teachers - while not exactly reaching his daily goal its a step in the right direction because he wouldn't eat for them at all on Tuesday and Wednesday of this week. He enjoyed outside time and art time quite a bit. And get this... he actually napped while he was there! Will - who needs music and a noise machine and perfect quiet and a pillow and a specially placed pacifier when he sleeps at home - went to sleep on a mat on the floor surrounded by 8 other not-perfectly-quiet kids in a brand new place. He was all smiles when Nate picked him up and has been in a good mood all evening.

Wow. We are so happy with today, it by far exceeded our expectations! Will did so well in his new environment. We hoped that he would enjoy preschool, but were nervous because he's really seemed to enjoy his situation at home. We couldn't be prouder of him for doing so well! Now let's hope he continues on this wonderful path!

Thursday, September 3, 2009


This week started off rough... Luke started crying when we were getting out of the car at preschool on Monday. I had to carry him inside and we had a dramatic goodbye. You're probably thinking that he doesn't like going to preschool, but I have had three separate therapists resume seeing Luke while at preschool, and all three have reported that he's happy, well-adjusted, and doing really well while there! In addition to his teachers loving him and the great reports Nate gets each afternoon from them, we are also excited to see him playing on (and loving) the playground each day when he gets picked up!

So, I thought, he's manipulating me...

On Tuesday, he again cried while we were getting out of the car. I didn't carry him this time, because he's fully capable of walking into preschool. He kept asking for "up" and I kept trying to get him to walk with me. He was angry with me, and right there in the middle of the parking lot, dropped to his knees and smacked his head on pavement (on purpose). With a nice prickly welt on his head, he proceeded to walk into preschool, screaming the whole way. Dramatic, mommy-embarassing entrance on the day I originally thought was school picture day (thankfully I was a week off...)!

Wednesday morning was a little worse. Luke pulled the whole "tantrum in the parking lot" thing again, only this time he forewent the head slam and skinned both his knees instead. I made sure he was safely to the side walk and walked away from him. I was mad! He refused to go inside, so I carried him football style into the classroom and dropped him gently onto the reading mat. I probably could have handled myself in a more adult manner, but he was being such a............. two year old! Definitely a parental test for me.

I was determined not to let Luke beat me... I mean, manipulate me again this morning. I devised a distraction plan. I parked closer to the school so we didn't have too much parking lot to cross. I also arranged to call Nate at work as we were going into school. Luke and Daddy talked as Luke calmly walked with me into school. No tantrum, no blood, nothing but a behaving Luke!

When we got into the class, we hung up with Daddy and Luke got a little trembly lip. We walked over to the reading mat and read an Elmo book together, and he pulled out a different book to read on his own. I stood up to leave, and he followed me to the door. The lip started trembling again, but he gave me a hug and we said goodbye. As I was peeking back through the door, he spotted me and I blew him a kiss. He blew one back, waved bye bye, and then walked off to go play with one of his friends.

Successful toddler manipulation? Let's hope this continues on this way, because it certainly made the morning a lot easier for both Luke and me! So, I'll be taking volunteers for us to call every morning. Anyone who is interested in receiving a roughly 2-minute phone call sometime in between 8:00 and 8:15 on a weekday morning, let me know where we should call you! Luke might not talk to you all that much, but I'll silently be mouthing "thank you" as you ask him how he's doing, and he gets into his classroom without the toddler tantrum drama!