Making strides...

I am so proud of our little guy - today for the very first time I finally got him to use sign language for MORE, we've been working on this for months. And to top it off when I asked him again after his second helping of chicken nuggets and strawberries he actually shook his head NO! I can't be sure he knew what he was communicating but I am so happy. Cameron has only communicated MORE with Dad a few times and never with me.

His hair is really coming in and I'm still not sure what color it is - somedays it's a tint of red and others blonde and them some he's got mom's dirty blonde going on.

Cameron had a wonderful time with Nana while we were in Ireland, when we came home he kept reaching back for her while I held him, it was really cute. Nana did suffer a few small bite wounds from our resident vampire though. We are so grateful to Nana for coming to give Mom and Dad a break. We had a wonderful trip and feel so lucky to have gotten away.

While we were gone Cameron made a visit to Children's for the Radiothon, he is a local celebrity with over 8800 hits to the webcam where his "story" was featured. To check it out here is a link of what was played if you went to the Mix site to watch the radiothon online. A big thanks to Matt's Company for being such great supporters of the Radiothon. Check out the link, it's so great what the radio station put together:


http://live1.bonnevillechicago.com/BICOnDemand/WTMX/Video/COTG_PreRoll.wmv

Our Boy is Gaining Weight!

It's been a busy week so far...lots of therapies, we really like our new PT (but miss Stephanie of course:)

We saw Dr Vicari regarding the head shape and torticollis, he is pleased with the progress Cameron is making with therapy so we will wait another 4-6 months to see him again.

The Pediatrician today was happy with Cameron's weight gain, he is up to 20lbs which is great. A whole two pounds since June! He is now officially on the growth chart for his age group - 5% to be exact!yahoo.

Cameron is doing well getting into four point when crawling, it's not all the time but he's making some major progress. He also seems to getting the hang of "Hi Five" and he loves to eat. Oh and he loves to comb his own hair, it's so cute!!!
He smiles everywhere we go it's amazing to me. Even after two shots today he cried for less than 5 minutes and was back to his happy ways.
Cameron is infatuated with Miller's dog crate, he even has climbed in there twice. Somehow we also seem to miss the photo op.

This weekend is the Children's Memorial and Mix 36 Hour Radiothon. Last year Cameron was having his shunt surgery during this so we spent a lot of time hearing all of the amazing and heartbreaking stories. Cameron is going to be featured on the website I believe, they put together this wonderful montage of him and told a bit of his story - they wanted us to come down to do an interview but Mom and Dad are going to be in Ireland!! Yes that's right we are leaving out little angel and heading overseas. Matt earned this trip for doing so well at work lately. We couldn't pass up a free trip to Dublin all expenses paid. Cameron will be spending some QT with Nana and Grandma Randi and many other visitors.

If you have the time this weekend take a moment to visit the website http://www.wtmx.com to see where Cameron is posted, you can also pledge on line or call in direct to1-888-831-7733. We will be checking in often from Dublin and calling in to make a pledge.
I consider us one of the luckier families at Children's as we have had the joy of coming home and despite the many surgeries Cameron comes out even better. There are many children at the hospital far more regularly than us, and some who have never left. As you are enjoying this weekend with your family and friends take a moment to think about those children. We appreciate your continued support for our family, the hydrocephalus association and Children's Memorial who has played an integral role in Cameron's care from day one.

xoxox
mom and dad

Therapy Reports are in...

We had the annual IFSP meeting with all of our therapists and service coordinator last week. There were no real surprises - in summary Cameron has 50%+ delay in his stationary motion (bascially sitting up and the like) this is all related to the hip/leg tightness we are still struggling with. Locomotion is better at 33% delay. Language/Speech is the other weakness, more so in expressive language at 50% and Receptive around 20%.
There's a whole bunch of other numbers, in some cases he's doing age appropriate thing and in others not - overall is probably at the equivalent of a 8-9 month old
Fine motor he's doing really well - hooray!

All these numbers aside everyone agreed he's the happiest baby they have ever worked with!

I am not worried about any of this really because we're just going to keep working hard. Yes, it's hard to hear that your 14 months old is like an 8 month old but i'm over it.

We are going to add in another therapy - developmental therapy. So that brings us to a grand total of 5 therapies. We also revisited talk of seeing Dr. Vicari again about Cameron's head shape. It's slowly improving, but if we decided to go the route of the helmet that would eliminate a therapy for us. It's tough call b/c we would love one less therapy but the helmet costs anywhere from $2,000 to $3,000. We see Dr. Vicari next week so we'll see what he thinks.

This past Monday we got to test Cameron all over again at the Children's NICU follow up clinic. I told them we just went through all of this so they weren't all over us, but somehow it still took 3 hours. We did get to see Dr. Matoba who we love, she was with us from before Cameron's birth so that was nice that she was in clinic that day. The PT was pretty concerned about all of his leg tightness, when I asked what should we do she suggested we discuss in depth with orthopedics. So the only thing left to do for the NICU group is get a hearing test. I suggested that we need not come back since I clearly am on top of the therapy bit. They agreed we just need to call in 6 months with an update. YEAH....no more half day NICU visits!!!

Sorry for all the medical stuff - but that's been kind of the story around here lately. In other news Cameron loves lemons - yes, RAW lemons. He has also taken to avacado and banana after many months o protest we are so excited!

Thanks to all for your continued support and donations to the Marathon to benefit Hydrocephalus. We really appreciate it.