Thursday, June 3, 2010

Taste Of Summer

Amber's first taste of watermelon!
(please excuse our messy hair it's just one of those days)

She didn't seem to sure at first but, as soon as she got a taste of it she loved it!

We tried out her new mesh bag feeder.
It's a little too heavy for her but she can actually feed herself with just a little help.
Unfortunately I'm still having video issues so I don't have any happy pictures of her eating.

We're still adjusting to life on oxygen. We're working out the kinks with the company. There seems to be some lack of communication when it comes to orders so we've been waiting all week for new tanks. It looks like we'll have just enough for our trip tomorrow but I'm worried her big tank will run out tonight and we'll have to use the travel ones. They never told us but they deliver to our area on Monday, thankfully they're making an exception and coming out tomorrow.

Tomorrow (Friday) is our big trip to Boston. We'll meet with the new Endocrinologist. I'm actually excited to meet her. From what I've read about her she specializes and is really interested in the type of things that Amber has; skeletal dysplasia, rickets and other bone disorders. We'll also be meeting with a new Pulmonary Specialist. Hopefully they (not sure if its a he or a she) will be able to set us up with a sleep and swallow study and give us more insight into how long she will have to be on oxygen.
It's a stretch but I'm really hoping we'll be able to stop in and talk to the diaphragmatic hernia surgeon. We've been e-mailing back and forth and he wants to talk on the phone tomorrow (sounds like the recipe to a cute high school romance huh) but in all seriousness I'm worried because he still has not received the x-rays we sent out last week. Ugh hopefully he'll get them tomorrow.

Amber is looking forward to seeing her PA grandparents this weekend!! It's been far too long and it will be very nice to see them again! Amber would also like to say "Happy Birthday" to all her cousins who just turned one and will be turning one soon!

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