My Owie Bear

Raising Noah requires endless thought into focusing on his learning opportunities, doing therapy exercises, policing his behavior, and worrying over his general health. Where does my sweet Owie fit into all of this?

I know everyone's child is special in their way. Owen's way is that he is so kind and helpful. He actually won a trophy on the last day of school for being the best helper and most congenial in his class. His Uncle Shane calls him the oldest 5 year old he's ever seen.

These qualities make Owen an especially terrific big brother. He praises Noah's accomplishments and is fairly patient about Noah bulldozing through his toys. These qualities also make him a great helper to me. He loves to vacuum and cleaning windows is one of his favorites. He told me yesterday that he needs to get a new broom to sweep the house.

These same traits however make me concerned that Owen won't speak up if he's not getting the time and attention he needs. He is only 5. He understands a little that Noah has health problems that mean he goes to the hospital a lot and make it harder for him to learn. But how can any kid understand how Noah's issues mean he takes up so much more of my time than I have for him? I try really hard to be aware that Owen is just 5 and to take time every day for just he and I to do an activity. Geoff spends a lot of time with Owen, so I think Owen gets enough "parent time". But I miss him. I don't want to miss a minute of Owen growing up. He is such an amazing kid. Owen is off to kindergarten this fall and he's becoming a big kid too fast. I want more time to ride bikes with him, read stories to him, play garbage trucks with him. I just need to find more time. --Amy

Getting Noah Ready for School

On Wednesday we had a transitional meeting with Noah's physical therapist, Kelly, and Speech Pathologist, Jean to discuss our little guy attending school all by himself this fall. This will entail riding the bus and spending 2 1/2 hours in a classroom without me. This is sort of exciting and scary all at the same time.

On the plus side I am curious to see what Noah can learn without me there to help him. I try really hard to make him do things for himself, but I am his mother and may be making things easier for him when he needs the challenge to learn. I think he'll enjoy a classroom with other kids his age (to hit). The teachers are all therapists and will be working with him to address his specific needs. He has never had twice weekly therapy and that can only be a good thing.

My concerns include that he doesn't yet talk. He signs a mean "more" but that's about it. Will his teachers have the time to decipher his non-verbal clues? Will his teachers be able to control his excitement that sometimes (most the time) bubbles over to hitting other people?

Kelly and Jean say they have both worked with other children who didn't have Noah's skill set and they thrived at school. And they would know right? So, we are getting ready to say good-bye to our two at home therapists, Kelly and Jean, who have given us so much support and attention. They have worked with Noah since he was a year old. I don't know about Noah, but I am going to miss them being his cheerleaders for each and every little accomplishment Noah has made. Now my big (nearly) 3 year old is off to school!

Noah in the grass

Fun day at the Park

Home at Last!

After 3 1/2 weeks out of our house, we are finally home! The construction on our home is still not complete, we had painters here on Friday, cleaning people here yesterday. We are still waiting (and waiting) on the electrician, fence-guy, and landscapers to help bring this disaster to a close. We hope by the end of this week. The good news is we have walls again and air quality tests came back clean. So, no toxic mold for us!

Noah is happy to be home. Our first day back he just sat and played in his bedroom for about 2 hours, by himself, completely content. He had a bad day on the 4th, with 8 seizures. That is a record for the most in one day. He didn't even have a chance to eat. He'd have a seizure, sleep for 45 minutes, wake up and in 20 minutes, have another seizure. We took him to our neighbors' to play in their pool and he did that for about 5 minutes and then just wanted to sit in my lap (all wet, of course).

On August 17th Noah and I will be checking in to the hospital for 3 days for his video EEG. I am trying to line up lots of visits to pass the time while we are there. Did I mention there is a Starbucks in the lobby? So, if you need coffee anyway why not just come up Pill Hill to get it? And the sky tram? Remember that? It goes right up to Dornebecher Children's Hospital. That's fun right?

I'll keep you all updated and promise to be a better blogger now that we are home, I promise. --Amy