When you have a lot of Dr's its like the game telephone in the end the message is not what it sounded like when you started. After much to do and lots of explaining we finally have a surgery consult date set up for little Amber. We've changed insurances (ugh) and we're going to Children's (at the demand of our pedi.). Our date? Well its this Friday the 19th. Sounds familiar right? Its the same day as our long awaited appointment with a different geneticist who thinks she might have cracked the code. We're not sure when we'll get rescheduled, they pulled some strings last time I guess we'll just have to wait and see. The good news is after talking to our main geneticist it sounds like her hernia is not that bad and this will be a one time permanent fix. Other than causing her difficulty to breath the hernia has not impacted the growth of Amber's lungs! It's yet to be decided if the hernia is the main cause of Amber's chest shape and poor weight gain. It could be a magic fix or it could just puzzle them more. The Dr did say that its almost guaranteed that it will fix her breathing issues. Our anesthesia fears have not been put to rest yet, especially after being informed that they will be deflating her lungs for the procedure. We still have a lot of unanswered questions that won't be addressed until we have our meeting with another geneticist who specializes in diaphragmatic hernias, the surgeon and the anesthesiologist.
On x-ray news the skeletal survey went well. It was shorter than last time and they did not have to retake any of! Thanks to daddy who has mad skills :) The full reports on her chest x-ray and skeletal survey are not in but so far nothing else bad has been found. The only new oddity with her is the rib bones look wide and spread out......yeah they have no idea what this means or if its a bad thing.
Crazy stuff but we're hanging in there. Amber has been in the best mood the last couple of day its been so much fun! Can't wait for this weekend!
So good to hear she's been so happy lately. A happy baby is a happy babymomma :) Much to look forward to & to pray about in the weeks ahead.
ReplyDeleteSkye,
ReplyDeleteThank you so much for keeping us updated with the blog. I am sure it is just one more thing for you to do but for those of us who cannot be near you, it is very helpful! Thanks!
You have been heavy on my mind. For such a little peanut, Amber was feeling kinda heavy this week..ha! What a trooper she is! I am so glad that her second x-ray went better for her. You and Luke are doing a great job with her. Keep up the good work! Wish I could be closer to offer you support but for now, you all are in my thoughts.
Love,
Aunt Julie
Thanks! It's really helpful to be able to write it all down and have one place for everyone to see it instead of having to explain it a bunch of time. It also eliminates "telephone game" problems :) and telephone tag!!
ReplyDeleteIt's also great because my dad can see pictures here and he can't always see them on facebook.