Isaac got out this week and picked out a brand new pet fish – he has finally settled on Nemo as his name 🙂 The setting up of the bowl was very exciting, and although it’s only been 24 hours, Nemo seems to be a good addition to Isaac’s life. He said goodnight to him last night, and woke up with a “good morning Nemo”. He checks on him a lot, and reports to us on Nemo’s activities throughout the day 🙂
In medical news…. we were waiting to hear from Children’s Hospital in Philadelphia (CHOP) regarding whether or not they were interested in Isaac’s case. As we’ve said before, his right ribcage is completely fused and impeding his right lung’s ability to function fully. In time this will get worse. CHOP is among the best places to work on something like this, since the surgeon who invented the technique used to stretch the ribs works there.
It can take a while to hear back from CHOP, much less get your child in for a consultation….. after some hounding (who, me??) we got an appointment for August 19th for an evaluation. I am very excited, since they are amongst the best – but so nervous. This is MAJOR surgery, and it requires several trips a year to stretch the rods they place in the body. Along with this comes a major risk of infection. We have to do this for Isaac – we really feel this could make the difference in getting his trach out. Even if it doesn’t, Isaac deserves every chance we can give him to breathe!
As I type this, Isaac is conversing with me fully – he just typed his name and proudly announced “I spelled my name!”…. it doesn’t get much better than that 🙂

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