Update

I haven't felt like updating in a while because things keep changing & it was getting difficult to keep up with the roller coaster. Everything is settled now, so I'll clue you in. Ember's surgery has been moved AGAIN, now it's on January 19th. I'm thrilled to have it on Thursday instead of Friday, and the surgeon's office has pre-certified the date so this time it seems like it will stick. Also, we finally got everything figured out insurance-wise & she is now approved for the secondary insurance for her surgery. That's HUGE to us because today is Ryan's last day of work, he starts student teaching on Monday & we will be living off of savings for the next 5-ish months. The extra financial help for the surgery takes a huge load off of us - me in particular, as the financial executive of the family. :)

I've been talking to Ember about the surgery, she seems really comfortable with the whole thing, of course I don't think she gets that she'll really be in pain, but I have explained to her that she'll wake up with an owie & the nurses will have medicine for her if it hurts too much. She mostly seems excited about all the cool amenities at the hospital, and that's totally fine with me.

As for the mom stress, it's been really easy to keep my mind off the surgery for the most part 'cause I've been concentrating on the holidays & all that comes with them. Now that Christmas is over I just can't stop thinking about it. I'm kind of freaking out, and I have a feeling it's only going to get worse over the next 20 days.

Please keep praying for my baby & for her surgeons, Dr. Sami & Dr. Shah. Thanks!

Not So Fast...

Surgery has been postponed 'till January 20th. That's a Friday. I don't like that one bit. Last time they told us the OR isn't fully staffed over the weekend, so if she has any complications during recovery there won't be anyone there if she needs to get back in. I don't want to wait an extra 2 weeks either. Let's just get this over with!!

We Have A Date!!!

The waiting for a date is over!! Ember's surgery will be on Thursday, January 5th first thing in the morning. That's just over 6 weeks from now. I am so relieved to finally have a date, now I just need to get some insurance stuff in order and we'll be all ready for the big day. I'm so ready to get this over with. Hopefully this will be the last one!

Here's the deal...

Right now Ember is covered under Ryan's insurance. This particular insurance happens to be notorious for providing bad coverage for craniosynostosis because there is no in-network surgeon that can do the surgery. They also really love their "reasonable & customary" charges. I expected that, and I was planning on paying somewhere between $3 - $4K out of pocket. BUT Ryan will be quitting his job in January to student teach. At that time we will have zero income, and be living off of savings only. When that happens Ember will be eligible for Medicaid, and Medicaid pays 100% with no deductibles. It takes up to 30 days for MC approval which means it could be February before she can have surgery if we choose to wait for it to kick in. However, we're coming up on rainy season and if Ryan gets rained out enough days we could qualify sooner. Have I ever told you how much I hate uncertainty? I hate it a lot. Have I ever told you how hard it is to wait for surgery? It's really freaking hard. Oh how I would love for this to be over with. Ryan has worked there for 5 years, and for this to come up right as he's quitting - ugh, it's just so much craziness. I should be grateful for the possibility of having no out of pocket expenses. I'm sure God worked it out like this on purpose, it's really a good thing. I think I need to just chill out.

No Date Yet.

We saw Dr. Shah on Thursday. I was hoping for a date, but it's not scheduled yet. It's routine to have an appointment after the doc sees the CT scan, so that's why he wanted to see us. He didn't tell us anything new, just that the scan confirmed what he was already planning on doing. We have an appointment with Dr. Sami on Monday for the post-CT visit. I did talk with Dr Shah's surgery coordinator for a while. We were just hanging out in her office while she called Sami's office to try to figure something out about Monday's appointment. Anyway, we were talking about insurance & I mentioned that the girls in St. John's billing should be prison wardens (we had issues with the first surgery). Then she & the other lady who had come in to play with Ember told me very seriously that if I ever have trouble with the girls in billing or with the insurance company, I should call them. So even though we don't have a date or any new information, we have allies and that's always good.

As far as scheduling goes, the neurosurgeon & plastic surgeon each have their own offices, their own patients, & their own schedules. They used to both take Thursdays as surgery days but now they're on completely different schedules. So it's going to take a little time for their offices to arrange things so they're both free at the same time to do the surgery. We'll just have to wait & see.

I did tell Ember that she's going to have surgery. I haven't told her any details yet 'cause it's still a month or two away & I don't want her thinking about it too much. But I told her that after surgery she'd get to stay in the hospital for a few days and that there's a play room and a snack room, and that she'll have her own TV & she gets to be the boss of that TV. She really liked that idea :)

Oh! I almost forgot, Dr. Shah said they will definitely NOT be shaving her head!!

Round 2

Ember had her 3 year follow-up appointment last month. Here's the short version: Dr. Sami (pediatric neurosurgeon) thought another surgery would be in her best interest. She still has a lot of asymmetry, a nickel-sized hole in her forehead, and a large lump of bone at the top of her head. He was mostly concerned about the asymmetry but he said as long as they're in there, they may as well fix everything. So Dr. Sami sent us to see Dr. Shah (plastic surgeon) because Dr. Shah is the one who will decide when the best time for surgery is. -(wait a couple of weeks for the appointment)- We saw Dr. Shah and he said the best time is now - like within a few months. He took some pictures & said the tentative plan would be to rebuild her right orbit with a bone graft from the back of the skull, and to use (big word that means medical spackle)to reshape her forehead. He sent us to radiology for a CT scan. -(wait a couple of weeks for the appointment)- She had her scan on Friday and now we wait for the docs to look over it & make a surgery plan, then Dr. Sami's office will call us to schedule. It should be before the end of the year. Right now she's taking everything really well, she seems to love all the attention and she shows all of our house guests the photo album from the last surgery.

Ember is almost one! I can't believe it. She's such a sweet, peaceful little thing that the time has just flown by. I'm kinda sad 'cause I'm not sure if we'll be having any more. I may have only 2 days left in my life to enjoy having an infant. Not that I expect her to instantly transform on her birthday, but the birthday is symbolic of her growing up & it makes me sad. Anyway, she's a happy, healthy, helmet-free, little girl (and quite beautiful if I may say so). She still has a sizable hole on the right side of her forehead. I expect she'll need another surgery in a few years, but only time will tell. Yesterday I tackled what I believe is the beginning of the end of the medical bill mess. The billing office basically wasn't doing their job. Both insurance companies were willing to pay but the clinic just wasn't following through with the filing. I guess the girl thought her job would be easier if I just payed the $3400. But I spoke with both insurances & they gave me a detailed description of what the clinic billing office needed to do, and then I called the clinic & relayed the information. She still wanted me to pay, with the promise that the money would be refunded to me when the insurance payments came in. Yeah right! If you can't file a straightforward claim I'm certainly not loaning you $3400 & trusting you to give it back. But anyway, I think that's the last of the bills from the surgery itself. Medical costs are amazing. The value of Ember's medical care is almost equal to the value of our home.