The DoD and a few lawyers walk into a bar...

Sounds like the beginning of a bad joke right? And yet, it's how the Shanahans roll these days.

We are waiting on the specialty pharmacy to give me a letter stating that they will deliver to me at Osan. The Air Force understandably wants that in writing. We've been working on it for almost 2 weeks now.

Today when I spoke to the pharmacy, we learned that the delay is because this all has to be done through their legal department. Again, a pain, but I understand. He went on to explain that there is no problem...and they aren't changing what they agreed to do, but when he says the legal department is working on it, this is no small feat.

You see, my pharmacy is the pharmacy that runs or is part of Express Scripts. Express Scripts is the mail order pharmacy for all of Tricare. Tricare pushes Express Scripts a lot because you can get your meds 3 months at a time, automatically delivered, and the cost is cheaper. I prefer to get them on base where it's free, but it's a good option in some situations.

Since there is an existing contract between the pharmacy and the DoD, it complicates the issue. The lead pharmacist of the company is working with the legal department of the company and they are all working with the DoD up in Washington. The people who negotiate and oversee the contract between Express Scripts and Tricare are now involved. They want to write the letter very carefully so that they don't change or affect the contract that is already in place. They are also setting a precedent by agreeing to ship meds to me and so it's being carefully evaluated as to how they want to word it.

They keep reassuring me that there are no problems, it's all about the legal department and the DoD writing the letter so that the contract in place isn't affected. He described it as "we are asking the DoD what they want us to write in the letter that we are writing for them."

Charming isn't it? Yesterday we find that our case with the adoption agency is approaching their longest case ever...EVER. And today we find that the simple request of asking them to write down what they agreed to do now has people at the Pharmacy, their legal department, and the Pentagon assessing every word and sentence, so the contract between Tricare and the Pharmacy is not affected. All I need is that 10 x 17 x 8 box sent to an APO box once a month. Really...it's just not hard people!

I don't know what's about to go down. I just know to pray for God's hand in all of this. I figure He's gotta be rolling the His eyes by now, and thinking that we sure do make this difficult. It's quite inane. I'm sure Paul didn't ask the Ephesians what he was supposed to say so that he could write them a letter and say it.

Gotta love when lawyers and the government get involved. I'm pretty sure I'll be living in Korea, getting my meds shipped, and living the good life...and the DoD and the pharmacy will still be haggling over nouns, verbs, and prepositions!

And we're another day closer to bringing our sweet girl home. Her birthday is April 5th...I pray she's home or that we are at least with her there on that day. Pray. Pray. Pray!

It's not my imagination

We talked to our agency today. This wait seems never ending and it seems like we have had an especially long road (compared to their other cases and compared to what they predicted for us). 

So today she says in email "Your case is approaching the longest we've experienced as an agency so we've been in touch with them often about progress and have been assured that there are no problems with the case other than then slow processing. We will keep on top of them and hope for good news soon."

I'm glad we're another day closer. I'm glad that there are no problems. I'm glad to know that they won't keep saying "well it's just going slow, but you should get your final decree soon..we just have to wait." At least now they are to the point where they're checking on it frequently and questioning the wait. Hopefully that will spur the court system to finish this case! 

Still praying!

I have THE best husband around

I am so thankful for my husband. Knowing just when I need that hug, a prayer, and a reminder "this is going to work out...it will be okay" is priceless.

Oh how I want that call this week.... Praying!

Exceptional and not in a good way

We met with the doctors here for our medical clearance. They need one more piece of paper (from specialty pharmacy) and then will forward the package to Osan.

My complaint for the day is that by going through the medical clearance process, I am being forced to be enrolled in the Exceptional Family Member Program (EFMP). This "wonderful" program is going to be my greatest headache.

They require that any future base be able to provide care for me. This is a good thing. I don't want to go where I have no access to care. However, their idea of "care" and mine can be vastly different.

Their idea of a PH specialist and mine can be very different as well. They will try to provide and look for a PH specialist, but I know from experience that those specialists can vary widely. The first one I saw in South Carolina told me at my first visit that I had less than 5 years left to live. I never saw him again. I will now be forced to rely on a doctor unfamiliar with PH, and unfamiliar with me, to decide what specialist I can/should see. I regularly interact with doctors who have NO idea what the realities of PH are, current treatments, current prognosis, or what PH specialists do or how they differ from regular pulmonologists.

Secondly, all future bases will require that a specialist be located within 50 miles of the base. If I had been enrolled in EFMP before, I would not have been able to go to Shaw (my doctor was 2 hrs away) and I would not have been able to come to Maxwell (I drive 2.5 hrs). Even UAB in Birmingham is 88 miles away and would be outside the 50 mile radius. Completely and utterly ridiculous.

The two doctors I've seen have been the best of the best. They've taken me from very, very sick, to living a life where I have few limitations. The medications they know to prescribe  have been life changing. I've been part of a clinical trial. I've had top notch care. If I had followed EFMP rules, I would not have had these opportunities.

In fact, the doctor explained that in the future, I will have a specialist that may not be "cutting edge or a PH specialist like you have now." So let me get this straight. You are forcing me to enroll in EFMP. This program is in place to ensure I have access to care. And this access to care means my care may be of lower quality, and it will severely, SEVERELY limit the places my husband can get a job? Fantastic.

Without EFMP, I've had the best of the best. My husband has had excellent opportunities for his career. And I've done substantially better than I would have with a regular pulmonologist. I HATE when common sense is not used. I almost laughed out loud when she commented that she couldn't believe I wasn't already enrolled in EFMP. Seriously?

Every time we move in the future, I will have an enormous fight on my hands in order to get the care I know is out there. Andy's career is going to be directly affected. I'm angry. I have no choice in the matter now. Whether we go to Osan or not, I'm in this program for the duration. I couldn't be more unhappy about it.

If only Waiting was a professional sport...

We'd be RICH!

Well, we've done all we can do as far as obtaining medical clearances for Korea. We met with out doctors today and they signed off on all 4 of us. We meet with the doctor who actually decides to recommend or deny our clearance on Wednesday the 20th. He has every form known to man...1466, the 1472, the 145380...it's all in his hands and we just have to wait on his recommendation. We'll know for sure what it is on Wednesday.

We've been working with him so closely and he seems very encouraging about it all. After he decides, he will forward all those forms to Osan and we should hear within 2 weeks. Waiting.

And I'm so excited it's Friday. The government in Taiwan (including the courts!) has been closed all week but will reopen on Monday. NOW we are going to get somewhere with this adoption.

I am literally picturing our paperwork sitting on the top of a big stack of court cases...sitting on the judge's desk. I just need his hands to pick that stuff up and issue a decree. Or I need that court clerk to find those papers in the big stack of "we have been ignoring this stuff" papers, and decide to bring it to the judge's attention.

I pray we are sitting in Korea 6 months from now with all 3 of our children. I picture it every. single. day!

New Assignment

We haven't mentioned this yet but amidst all of the adoption "stuff" we also received orders for a new assignment. To Osan Air Base, South Korea. Andy has been chosen as the Deputy Group Commander. I am beyond thrilled for him.

I wish it were simple, but before we can go, we have to obtain medical clearances for the whole family. Basically the base there has to agree that they can handle and deal with whatever health issues any of us have.

Once again, having PH sucks. Well, it always sucks, but lately worse than usual. The medical doctor at Osan who approves (or denies) clearance is pretty freaked out by the words Pulmonary Hypertension. I understand why. But one of my biggest pet peeves is doctors who know "just" enough information about PH to be dangerous. They don't realize the difference from even 5 yrs ago when it comes to prognosis and treatments. They all must picture the last PH patient they saw while in medical school or residency. I guarantee that was on some ICU floor where a person with severe PH was waiting to die. Imagine reconciling that with me calling up and saying "hey...can I come to Korea?"

We are working all angles. My PH specialist is involved and advocating for me to go. We are sort of building a case for approval. We want to present it to them and show that I have sustained stability and that I am very low maintenance. I've researched and emailed with Korean PH specialists. And today, we solved a big problem with the delivery of my meds.

Three of them are delivered by a specialty pharmacy every month. They do. not. ship. overseas. Period. No ma'am that just does not happen. This little 2 lbs. box could be the reason we don't get approval. And I wouldn't want approval if I can't get my meds.

I called my doctor and she said she would try and work it from her end. I had run up against a pretty hard "no" at the pharmacy so I didn't really think she could change it.

Meanwhile, we've been emailing back and forth with the doc at Osan. Last night his last email said that he could see we were really trying to work this but his job is to determine whether or not they can support me while I'm there. He feels that with no meds delivery and the limited experience of the on base docs (they're all brand new shiny just off of Grey's Anatomy type of docs) they cannot, and while we are welcome to submit the package for his approval, he didn't anticipate he would change his mind.

This morning, Andy called personnel center to ask the "what if my wife doesn't get approved" question. We anticipated they would turn it into a 1 year assignment, or perhaps cancel altogether. Nope...wrong and wrong again! Instead it is STILL a 2 year assignment...whether we go or not. As in...he could be sent there for 2 years and we could not go with him. Seriously?

Being apart for 2 years is out of the question so then you begin to realize the only way out of it if that happens is for Andy to retire. As his board for Colonel meets this November, and with the state of the economy, retiring is not anywhere in our plans.

So Andy and I are talking this morning. My head was spinning with the news it's a 2 year deal no matter what. So I prayed. I prayed for God to help us. I prayed and asked that if we are supposed to go to Korea, that he move some pieces around...make this happen. I asked that he solve some of these issues. I felt like I was at a wall and confused that God would want us to be apart for 2 yrs just as we got Katelyn home. And I just prayed and asked for help.

I stood up after praying, and my phone range. It was Curascript.

My doctor had spoken with them..and this rep explained that they are all set to ship my meds to Korea. They already have it planned to send me with 3 months worth, and then send to my APO box there every month thereafter.

Medication issue? Not anymore!!! God is truly awesome.

I pray fervently now that the doctor here and the doctor at Osan (both consider the package and approve or deny) will look past the words "pulmonary hypertension" and really consider it. They are both going to need to listen to my specialist and look at my stability and overall situation. I know God is in this. I can't tell you the peace it gives me.

And for the record, Andy and I are both sort of exhausted. We haven't even mentioned Katelyn to any of the medical people. But honestly she's not in DEERS yet and we don't know when she'll join us. Either way, we can't be the first family in the Air Force to add a child (via birth or adoption) to the family during or after we've gotten medical clearance. That's what I keep telling myself anyway... I just keep picturing the doctor there...who's been so nice and working with us and we just hammer him with all this info and really present a package to him to which he cannot say no. And we wear him out and then in a few weeks we say "oh and by the way..we just adopted this little girl and we need to add her name to the orders..and get clearance."

I'm going to have to buy him a drink, take him to lunch...something. Unless he just runs in fear the second he sees me. Ha!

Chinese New Year

It's Friday afternoon in Taiwan and the entire country (including the court system) will (already has?) shut down for a week. The Chinese New Year starts Saturday the 10th.

I prayed so often and so hard for the final decree to be issued before the holiday. But for a reason I don't know, it was not to be. I was stuck on this date in my mind. I can't describe how disappointed I am that we are s. t. i. l. l. waiting. I know better than to plan like that or set a deadline in my mind. We are now into the 2nd half of February before anything else can/will be done.

I'm angry. I'm sad. I'm irritated.

We don't have another Skype session set yet either.

Not a good week in the adoption world for the Shanahans. Honestly, more often than not, I'm sort of done pretending this is all okay, that we are okay, and that this wait is no big deal. I love that people ask about it and that they care. Knowing myself, I'd probably be hurt if no one asked. Ha! But it's getting more and more difficult to answer the "any updates?" question.

Argh. It certainly isn't pretty is it?

I've said it before, but HOW do people do this without God to lean on and trust? I'm pretty sure I'd be rocking in the corner if not for my Bible right now. He is how I answer those questions. He is how I remember that the giver of timelines is human and can/obviously is wrong. He is how I don't hurt that person. Ha!