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Effing Cast #2, How I Hate You.
It's not that I mind being accidentally kicked with it ( Read more... ) -
Cast #2 + Additional Thoughts
So here we are, day after her appointment, and here I sit, a little grumpy ( Read more... ) -
CPT Doctor Qs
So, tomorrow is the big day, takig a big step in our CPT journey. We are meeting with our first doctor at Shriners Children's Hospital, and I'm not going to lie - I'm nervous. I'm hoping for the best, but I honestly and truly believe we've been assigned to the wrong doctor. The one we have now, the site specificly says "His work is devoted to ( Read more... ) -
Medical Update: EDS, Epilepsy, NF & CPT
Afternoon! Peaches is much better today. She doesn't want or need any pain meds, nor does she want to use her sling, which she has deemed "annoying". We went to the orthopedist today to ask what, if anything, we should do. First, he said if she didn't feel that she needs the sling, to not use it- but suggests that we keep it handy for possible ( ( Read more... ) -
A Birthday and an ER Visit.
It's not a party unless we end up at the ER, is it? Ugh ( Read more... ) -
Shriner's Called! Good/Bad News
So, I got a phone call today, and Birdie has been accepted for care at the Shriner's Hospital, which is wonderful. But, her appointment is set for 9/2, which is more than 6 weeks away. So that's a bummer. Additionally, she is being seen for "leg pain" which makes absolutly no sence to me ( Read more... ) -
One Step Forward, Two Steps Back
One Step Forward!I got an email today from Dr. Paley from the Paley Institute! I had asked if there was anyone out here that he had confidence in that performed his Paley X-Union procedure. Sadly, the answer is no. So that was a bummer. However, he DID say that he has had success in the past with our insurance covering the procedure. He thinks ( Read more... ) -
Our CPT Journey, Day 1
The last two days have been crazy, but odds are, this may be the first you've heard of Birdie and CPT, and you just want to know why on earth there is a cast on her leg. The short version of the story is that Birdie has a very serious, extremely rare, bone abnormality in her left leg. Today, I learned that in 35 years of pediatrics, her doctor ( Read more... ) -
Sleep Study, Day 7 of 7
Mask on: 12:35a
Starting pressure: 4.0
Mask off: 6:32a
Ending pressure: no idea
Duration with mask on: 5:57
Sleep apneas per hour: 0.3
How did I sleep? Terrible. I must have awakened about 397 times for baby reasons. I woke up, took the mask off, and fell right back asleep. Dumb, I know. Ugh.
