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Archive for October, 2015

Oh man, I promised you an Addie post and didn’t follow through. She had such an exciting week! We need to back up a little though. So much to catch up on.

About a month ago, Addie’s school had its annual trike-a-thon. Addie hardly ever practices riding her bike but she still loves this event! Her very cautious nature and giant bike made her the slowest on the track but she had a blast! I’ve been really terrible at writing thank you notes lately but huge thanks to Gram & Gramps, Nana & Poppy, Grandpa Larry, and Grandma Lori for donating!   

    
 
This past week, Addie was chosen to represent her class as Student of the Week. Such a fun honor for her! She got to make a poster with fun facts and pictures to share with her class. Her classmates and teachers each wrote something nice about her. Then Friday, she sat in front of her school at assembly while everyone sang “Happy Student of the Week” to her. She loved it!

   
   
 Then Friday after lunch, her school had a very informal event at the pumpkin patch. Addie met new friends and played with a few friends from her class last year. We went on a hayride, jumped in the bouncy house, and picked out a few pumpkins before rushing over to pick Beckett up from school. We had a great time and were so glad to fit in our annual pumpkin patch visit though we sure missed our usual friends! Hopefully next year our lives will be less crazy and we’ll have time to get back to our traditions. 
 


  

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Happy Birthday, Haylee!

Our adorable cousin Haylee is 2!!! We had a wonderful time celebrating this past weekend at Haylee’s Clubhouse. Shawna truly out-did herself with every perfect detail of this Minnie-themed event. The kids had a blast and looked so darling in their ears. My pics are pretty sad compared to the 100+ that Shawna posted on Facebook. How she manages to throw the perfect party and get amazing pictures at the same time is beyond me! Regardless, happy birthday, Haylee Rose! We sure love you to pieces!

   
    
    
    
   

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Catching Up with Coen

Immediately after typing that, I thought it’s way too Keeping Up With the Kardashians, but I’m too tired to think of something else. Sorry 😦

So, I overload you with Coen updates for a whole year then just leave you hanging. I’m terrible.  
The week after Beckett and I returned from boost camp (yes, we’re backing up all the way to August here), Coen took his first steps. Two at Linda’s one day when I picked him up, then 8 that weekend! He promptly decided he had no interest in walking and crawled for an entire month before trying it again. In early September, he figured it out and now is all over the place. He climbs on the couch, navigates stairs (up and down), and is finally getting the hang of wearing shoes so can walk out to the car in the morning. 

At one year, he had just one word, “uh-oh” (it counts, I asked his pediatrician!!). In the past month, he’s become pretty consistent with “da” when Jimmy comes home but just last week has expanded to “mom”, though he will only growl it, “ball”, “up”, and my new favorite “oh no”. 

He’s 100% boy. In our house full of dolls and pink, he manages to find the few cars we own (seriously about 5 total) and drives them off table tops so they crash on the floor. Then says a very concerned “oh no!” Addie has these princesses with wheels that slide down a castle. He’s pretty impressed with those too. He’s also started to love books. Yay! 

So there you have it! All caught up on Coen. Maybe I’ll throw in an Addie post tomorrow. Cover all my bases!

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Beckett’s Travels

A few weeks ago, we took Beckett to his 6-month follow-up with Shriners then rushed home to have a weekend before hopping on a plane to Pittsburgh for our annual appointment with Dr. Roman. I’ve been contemplating this post for weeks. For the first time, I was very disappointed with Shriners. Jimmy didn’t walk away with the same feeling. But, he’s not the one writing the blog, so I’ll give you my perspective 🙂

In the past, we haven’t gotten a whole lot out of Shriners. It’s always been “keep doing what you’re doing” with a hint of “things look good for now, but…” I’m very happy with the team we now have in place. His OT is a gift from God, we have a great private speech and just started with a PT. His school team seems pretty wonderful, especially based on my opinion of the district after all the drama we went through to get him in an inclusive program. So, yes, of course we’ll keep doing what we’re doing but I want more. I want someone to look at my child for more than 20 minutes and see his potential. I want someone to take an interest in helping him succeed. I want someone to see him as an individual instead of just another child with CP. I went in with so many questions and for the first time, I felt like we were rushed out of the room. We left with prescriptions for a gait trainer, a wheel chair, new AFOs, and baclofen and were told to come back in 2 months. Ok, thanks.

Then we headed off to Pittsburgh. Dr. Roman is the most knowledgeable person on the planet when it comes to CVI, so I was pretty excited to get an updated assessment. Beckett was amazing on the plane. Sat in his own seat for take off though Jimmy held him for all the landings. He managed to nap just once for maybe an hour. And somehow, that’s the only picture I took of him on the plane!

  

We got in around 5, stopped at Burgatory, Jimmy’s request, and got settled in to our hotel. Beckett got his own pull-out bed all to himself, though I spent half the night in it patting him back to sleep. 
   
Tuesday, we headed to West Penn for our appointment. Dr. Roman created a scale from 1-10 to assess where a child is with CVI. Last year, Beckett was a 3.5-4 in all areas. This year, she commented that he’s changed a lot. He’s more focused and alert. He’s holding his body much better and using his arms more often with more purpose. Yet he’s only gone up a half point on the scale. She said with how much he’s improved in other areas, she would expect his score to have increased more. Disappointing, yes, surprising, no. Beckett had a vision therapist for the entire past year. Jimmy and I kept saying we learned more about CVI in an 8-hour seminar than she knew. Treating children with ocular impairments is completely different than therapies geared toward children with cerebral vision issues, yet everyone we meet gets stuck on the ocular rules. We’ve tried (very politely, at first) to point this out to our former vision therapist, but that didn’t go over so well. Dr. Roman has written books, travels around presenting at conferences, and has offered to have a direct phone call with Beckett’s therapists. No chance of our former therapist seeking out any of those opportunities. I’m so amazed at how people can be so arrogant and think they know everything already. There is always room to learn. Especially when a majority of children with a visual impairment have CVI. As a professional, wouldn’t you want to learn all you can in order to bring the most success to the children you treat? Dr. Roman has created a CVI certification course that will be available this fall. You bet Jimmy and I will be taking it and I’m certainly going to request that the school district requires Beckett’s vision therapist to get certified. 

 

Wow, this post turned into a complete rant! Did you make it through all my complaining? Well, now that I have that off my chest, next post will get back to the usual cheeriness. With fall fun and cute kids!

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Oh my goodness, so much catching up to do on this old blog.  I don’t quite have time, my taxi service for kid pick up starts in 20 minutes, but if nothing else I can start here with our early morning balloon outing. This year, it was a Mommy/Addie event. We let the boys stay home cozy in bed. We enjoyed the glow show and dawn patrol then met up with friends for mass ascension. Though the wind cut the morning short, we had a great time!

  
    
    
 

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