Cute-Cute!

Just a quick note on cuteness... Lucas learned to say "I love you" this week, but he confuses "you" and "me". So when you tell him "I love you," he says back to you "I wuv me."

He does the same when he reaches "U" in the alphabet. He can say almost all the letters except for about five (which I am extremely proud of by the way)! He repeats every letter... "R, S, T, Me."

He used to say "I-O" when I said "O-H"... now because we've been doing the alphabet, when I say "O-H", he says, "I-O-P".

Thought I'd share a few of those. I haven't done a very good job of getting video up, I did finally download about 6 months of video over the weekend and there's some cute ones that I hope I can get posted later this week.

I just posted few updates from November.

Thankful

It hit me this week as Thanksgiving was approaching, that one year ago we were in the hospital completing the 3rd shunt revision in six weeks. We were one day away from having to spend the actual holiday on the neurology floor! You may remember, that we were discharged that Wednesday with instructions to return immediately if he started acting up (because the catheter had moved from its ideal location and Dr. Yaun was concerned that it would fail again). How ironic that the worst one is the one that seems to be doing the trick?!

So this week marks one year of being shunt surgery free! Wahoo! The longest stretch ever. We go for an MRI on 12/9, so I'll wait to celebrate completely until we verify that everything is holding up.

As we look back on the last year , we have so much to be thankful for, with Lucas' health at the very top of the list. I am thankful for his adorable smile and contagious laugh. I am thankful I get to hear the words "Hi Mom-eye" a hundred times a day. I am so thankful for all the gains he's made this year... with exploding speech, improved vision, use of his left arm, sitting up, and engaging personality. I am thankful that I have a good job in this economy, and that it provides the flexibility to get Lucas to his many appointments. I am thankful that we live in a place where the best specialists are within our reach. I am especially thankful for the "A-Team" that has gotten Lucas to where he is today... from the awesome doctors at Children's, to his team of therapists and the various specialists we have found. I am thankful for the special people we've met along this journey that have provided guidance, for without them we could have never compiled his Allstar team. I am thankful for our amazing nanny who couldn't love him more if he was her own child (and that her entire family loves him and constantly prays for him too). I am thankful for Nicholas, Abby, and Anna, and the unconditional love they have for their brother...I wish everyone could see them with him. I am thankful for our families--both near and far--for all of their support and love, and for being as excited as we are for even the smallest gains in Lucas... I miss the ones far away so much. I am thankful that he has the cognition to show true excitement when seeing his grandparents... that he's "GranDan's Man" and to hear him say "G"; I love that he thinks its funny to talk on the phone and hear him say, "Hi G'ma" and "G'pop". I am thankful for my friends, who have cried and celebrated with me, and just been there many many times just to listen to me b*tch. And finally, I am thankful for Bran... my best friend, a wonderful father, and Lucas' biggest cheerleader. He holds us up more than anyone ever knows.

Here's a few pictures from our Thanksgiving weekend. Jimmy, Joanne, Justin and Jathan Stisher drove up from Alabama! We spent Thanksgiving Day with them and Bran's parents, and enjoyed dinner with at our friends' Ronjohn, Carrie, and their kids. Friday was a day of football at our house, as I sat amongst seven die hard Bama fans for the Alabama-Auburn game! There was a LOT of screaming, and Lucas has now correlated "Bama" with "Roll Tide." If you say one word, he says the other. I think that was integrated over the weekend!

GranDan and his man

Playing with Uncle Jimmy

Posing with Joanne

Dancing with Courtney... we love it when she babysits!

Getting ready for dinner

Hanging out with the boys watching a gameHanging with Gran and GranDan
"I'd rather play with Gran than watch football!"

Time to Buy a Backpack!

Looks like we need to buy a backpack… I think Little Man is going to school! I can’t believe it. We visited the vision preschool class last week and Bran and I were impressed on many levels. I don’t know why, but I was really nervous going there. It was the kind of feeling I used to get when we’d have a neurology appointment and have to sit in the lobby on “Neurology Clinic” day. You can only imagine the sad things that you see in that lobby… little kids from all walks of life, battling neurological issues and handicaps from the most severe to the mild. It just breaks your heart, and it also hurts to feel that Lucas is part of this “club.” I think I was afraid that this classroom would be full of children that would break my heart. I expected to witness a group of blind children, and worried that I’d have to admit that Lucas was still somehow part of this group. But it wasn’t like that at all… I have to say I would be honored to have Lucas sitting among these incredibly sweet and beautiful children… and if this was a snapshot of where he’ll be in a year, even better!

When we walked in to meet the teacher, there were three kids in the class… two boys at a table with the assistant playing with toys, and the another boy across the room working on fine motor skills (playing) with an OT. The teacher asked the two children to walk over and introduce themselves… they walked over to us and both of them looked right up at us. One had thick glasses and the other one had some slight shifting in his pupils (nystagmus), just like Lucas... but they made eye contact and it was obvious they could see us. The first one reached out his hand to me and said, “Hi, I’m Oscar”, and the other one introduced himself to Bran as he shook Bran’s hand. The teacher prompted him to ask our names. He looked right at Bran and said, “what’s your name?” Bran answered. I was still taken by cute little Oscar, so I wasn’t quite paying attention when the other little boy who stood just above my knee was staring at me. I look down to hear him say, “and yooooouuuuuuu?” (said in a tone like he’d been waiting a long time for me to notice him) Ha. So hard to describe, but it was adorable.

We spent the next 20 minutes learning about their classroom structure, schedule, how the teacher approaches their different challenges, etc. There are only 4-5 kids in this class with a vision teacher running it, and includes an assistant, an OT, a PT, and a Speech Therapist. In other words, a very “hands on” small classroom. The kids were all four years old that we met, so they looked like giants compared to our little monkey. She said even though many of them are 4 years old, most of them aren’t there developmentally, and certainly didn’t start the class this way. Also nice to hear, since Lucas seems so far and so much younger from where these kids seem to be. I asked her how many were preemies, she said they had one right now, that was born weighing just over a pound. I asked how many kids had CVI… she said one at the moment, and the rest were impaired due to retinal issues. I told her how important it was for us that the classroom recognize the difference in educating CVI kids, and told her we were following Dr. Roman. Before I could get that out, she said “I studied under Dr. Roman, she was my professor at the University of Pittsburgh.” How about THAT?! I was so excited and relieved! She went on to explain how she approaches kids with CVI and showed me examples... like rugs with pictures that are different for CVI versus other challenges, 2-dimensional picture differences, how the letters for CVI kids were taught using bright colors on black backgrounds, and for the other children, the letters were tactile and fuzzy. They utilize Braille in the classroom, but only for the children who absolutely need it. Her goal will be to help Lucas develop his vision to handle literacy, and not use Braille or as much emphasis using tactile objects.

We took a little tour of the room and the different “stations”, and she pointed out how she uses various tools to help vision. I recognized some of the tools that Dr. Roman uses. We were about to wrap up, when in walked a 4th student. Little Lucienne came rolling in using a walker, excited to be joining the class late that morning, saying hello to her teacher and the other children. She was the only child that stood out to me as having more severe vision challenges. It was so sweet to watch the other children interact with her, they ran over to the door to greet her and as soon as she recognized their voices, I heard her say "oh hey Oscar!" It was adorable. Those kids didn't see disabilities or differences in each other, they were all buddies. It warms my heart to think that Lucas may get to spend a few months in the class with these kids, as he will start in April, and they will be finishing up their last school year as 4 year olds.

The best part of Lucienne joining the class late, is that we got to meet her father who shared a little of her story with us. She was full term, but suffered a severe brain bleed while in utero, she has CP and severe CVI condition.... and this father could not have been prouder of his daughter. She appeared to be a lot more challenged than Lucas, losing 95% of her vision with her bleed being in the occipital lobe, but she was obviously thriving in spite of her challenges. He said she has come a very long way since entering the class last year, and that he has nothing but great things to say about the teacher and the school. We then found out we're basically neighbors! He gave us his phone number and we're planning to get together with him and his wife.

As the teacher got them settled in circle time, in came the little boy that was doing OT earlier.... peddling away on a tricycle. He had just finished his session down the hall, and I'm sure the tricycle was being used as a therapy tool. I can't really describe it, but it was pretty sweet to see how proud he was peddling back into the room. Maybe some day that will be Lucas. I love the fact that therapy is part of every day in this class. We watched their lesson of the days of the week and singing songs. One of the boys couldn't pay attention, fidgeting in his seat, looking under the table, and just wanted to socialize... I smiled as I could totally see that being Lucas one day too! Ha. I loved watching the teacher interact with them and the special way she addressed them. Bran and I were even invited to join in one of their songs, and we held hands in a circle. I got to hold Lucienne's hand. She could tell by my voice that I was someone she had not met, and immediately said "who are you?" I introduced myself and she replied, "nice to meet you." Then I just watched her in awe as she swayed and sang along to the song.

So needless to say it was a good visit! We're pretty convinced this is where Lucas should be when he turns three. I'm still a little concerned with his lack of mobility and how that will impact the class, but Lucienne's father said she was not mobile when they started either. There's also the question of whether to send him in April for just 2 1/2 months left in the school year, or wait until September. We're leaning towards sending him because we think he will gain a lot from the class 2 1/2 hours a day.

Here's a few pictures of a recent day at the park...

I know I'm biased, but Isn't he just so cute?

He loves the swing!