Per my earlier post, Ben is starting to show us his voice (we think). All he gets out are these little squeeks, but to us it is the sweetest sound in the world. He has never, ever been able to make noise and now that he can we are just loving every minute of it. And I think Ben is too!
Thursday, June 19, 2008
New Surgery Date - AGAIN
Ben's new surgery date for his airway scope, ear cleaning, and head catscan (to look at the enlarged ventricles in his brain) is August 13. I'm very excited to hear the results from his airway scope. For the first time since Ben's had his trach, he is able to deliberately make little noises (we think through his mouth). That would suggest that the swelling in his airway has improved, which needs to happen before the doctors even discuss repeating the coanal atresia repair (opening the nasal passages) and airway reconstruction. The upcoming scope in August is the only real way to tell how his airway is looking. We are hoping the best!
Tuesday, June 3, 2008
Back to square one
What are the odds, the doctor performing Ben's surgery on July 1 has to testify in court that same day. So, we are back to square one and in the process of waiting for a new date. Hopefully we don't have to wait as long as last time.
Monday, June 2, 2008
Ben's New Stander
Ben got his stander last week. This HUGE and HEAVY piece of medical equipment will help improve Ben's leg strength and bone density. After his leg break, he has been very weak. I'm so excited to have this piece of equipment to help him. And the best part, Ben really enjoys being in it. I think he likes being up high with his arms free to play with toys on his tray.
Ben has another cousin!
Mike's sister Theresa and brother-in-law Rich, had their baby today. He is a healthy boy weighing in at 9 lb 5 oz (big babies run in Mike's family). His name is Ian. We can't wait to meet him! Congratulations Tree and Rich.
Dentist
Ben had a dentist appointment today (he had his first appointment 1-year ago and they just did a quick look). Today, I thought we were in store for the same thing. Boy was I wrong!! They put Ben on the chair and tilted him back. They did some teeth counting, checked out his gums, did a little teeth scraping, and a full cleaning! Even more shocking was that Ben LOVED it! He loved laying in the chair, he loved the sunglasses they put on him to protect his eyes from the light and he loved having the dentist play around in his mouth! It was so cute. Here are a couple photos I snapped from my phone. I held his hand because he was wanting to take the dental tools.
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Sunday, June 1, 2008
Surgery Date - FINALLY
We got a call on Friday with a surgery date for Ben! His head cat scan, ear cleaning and airway scope will be on July 1. It took almost a full month to schedule this... can you believe it?! I followed up politely once a week for three weeks. On the fourth week, I lost my patience and started getting a little testy (which I hate to do but at this point it was ridiculous). A few hours later I received a call with his surgery date and time. I hate pulling out the angry and demanding card, but sometimes that is the only way to get your child what they need. But, we have a date now - let's hope and pray for some good results!
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