Days into the airfare saga I found out that I didn't follow protocol... So what's new!?! Since my days in Kindergarten, I have had a special knack for somehow stepping on someone's toes, saying something that offends or otherwise popping off a smart remark. Guess I still got it! I have tried and tried and tried to do better and prayed and begged and pleaded to God to be able to 'do it right'. However, I have a very direct manner that sometimes helps and sometimes... ...well it just doesn't help. Fortunately (or not), I have been able to speak to over 30 Medicaid staffers, 2 doctors offices, 1 caseworker, 1 State Representative's office staffer and 1 Medicaid 'Official' (like the kind in Austin that has a real desk and a last name). It really doesn't matter if we get the airfare covered at this point, though the official is rooting for us :). I now know the protocol and know where to find the request form. I am signed up as a transportation provider (don't ask me to fly the plane though :)). I have copious notes and ticket numbers. Lots of first names and a whole lot of people that I otherwise would not have met now know that there's this mom in Texas who has a daughter from China with OI that she WILL fight for. And I will pray for them, each of them, even if I didn't understand their name, because they are people, people who need God, people who need a savior, people just like you and me.
I am so glad that I have tried. I now know just how hard the system is. I am so thankful for private insurance. I am also blessed to have Mr. Incredible who provides so faithfully. But more than that I am so abundantly blessed to have a God who knows my every need and every need that Lollipop has and provides for each of those needs. I am so happy to be HIS and be able to pour out my frustrations (and they are many :)) to my loving Father.
So whether we have Medicaid's blessing or not we will get on a plane tomorrow and go. Before we leave there are so many things that need to be done. Pack, make lists of appts., more calls. The protocol of leaving. And attend a training tomorrow. Never ending. Maybe I might get it right?!? But odds are there will be some phone call with last minute instructions or a forgotten toothbrush... I am so thankful that God loves me despite my shortcomings. He has a plan. He will see us through. Though our future looks uncertain, HE reigns.
Monday, April 30, 2012
Friday, April 27, 2012
Odds and Ends
Quick Update: Still fighting the battle over airfare coverage, State
Reps office now involved. After 4 days, I called in the big guns.
As I was heading down the road (of course going to a doc appt.) a wonderful song played on the radio today. I needed a reminder. This is why I (we) do what we do. I could sit complacently and let others do. But God has called all of us to be ministers to those in need. And if an orphaned kid isn't someone in need, then who is?!
Lastly, there is a great homeschool giveaway happening here. Be sure to enter.
Be Blessed and Be a Blessing!
As I was heading down the road (of course going to a doc appt.) a wonderful song played on the radio today. I needed a reminder. This is why I (we) do what we do. I could sit complacently and let others do. But God has called all of us to be ministers to those in need. And if an orphaned kid isn't someone in need, then who is?!
Lastly, there is a great homeschool giveaway happening here. Be sure to enter.
Be Blessed and Be a Blessing!
Thursday, April 26, 2012
Run Around
Spending copious amounts of time on the phone is NOT something I have time for, kids for or patience for. Yet that is where I have been for the last three days. Still no resolution.
It all started as an inquiry to see if Medicaid would reimburse for the airfare to NE (or part of it). It may have been about getting some money the first day, but by the second day and 20 phone calls later it was more about how ludicrous 'the system' is and follow through. A matter of principle. And today... on sheer will power I have pursued getting 'help' and it still isn't over. I have spent over 7 hours on the phone in three days. I have spoken with 20+ people representing Medicaid, 2 doctors offices and our insurance company.
Tomorrow we may have resolution... and then again maybe not.
Lord, help our country if O-care is not repealed. I now know why some people give up. Little did they know that they hung up on the wrong girl two too many times.
It all started as an inquiry to see if Medicaid would reimburse for the airfare to NE (or part of it). It may have been about getting some money the first day, but by the second day and 20 phone calls later it was more about how ludicrous 'the system' is and follow through. A matter of principle. And today... on sheer will power I have pursued getting 'help' and it still isn't over. I have spent over 7 hours on the phone in three days. I have spoken with 20+ people representing Medicaid, 2 doctors offices and our insurance company.
Tomorrow we may have resolution... and then again maybe not.
Lord, help our country if O-care is not repealed. I now know why some people give up. Little did they know that they hung up on the wrong girl two too many times.
My war paint. I am mommy hear me RAWR!
Tuesday, April 24, 2012
Nebraska Bound
Life around here happens fast. For the last week life has been happening super, SUPER fast.
Since before we brought Lollipop home, we have talked to doctors about her condition. However, there have also been road blocks. ie, the 'specialist' we contacted with her Chinese file and had accepted into their program within weeks of getting home declaring, 'she doesn't have OI bones, so we will treat the fractures but give no medication.' She was in an arm and leg cast when we had our first face to face with him and her leg and broken in a secondary place while IN the CAST.
Now granted depending on the type of OI you have (or your child has), there is a certain type that when a fracture is healing a SUPER callous forms and is very distinctive. But at this same time we had our pediatrician, an endocrinologist and a geneticist (and his whole team of evaluators) saying "she HAS OI!"
So we went to clinic #2. A wonderful first experience and then she broke her femur. Long, long story. But when a nurse tells me my child just needs to 'suck it up' after my child being on hydrocodone for almost two weeks because of the EXTREME pain she is in and they couldn't 'fit her in' and I KNOW she has walked around on a broken fibula at least TWICE.... a mom might get upset (I justified, it had been Christmas and New Year's after all). But now after two more fractures (or should I say one, hmm, ...but where there should be bone and there isn't... So what exactly IS that?!) and the average for a return call is 4 DAYS!!!! I am fed up!
With an OI diagnosis it is common to start a medication to strengthen bones. We have never been able to do that. BUT, we have prayed all along that if the protocol clinic #2 proposed is not what we should do that God would block the way. The medication they proposed has some NASTY, common side effects. But THEY haven't seen them in children..., but they won't tell me how many OI patients they treat! (sorry, I digressed) Well with fractures and indecisive doctors, the way has been blocked.
Last week, after feeling like I'd hit my head against an invisible wall for MONTHS. I decided to reach out. I applied to join the OI parents yahoo group. I have researched, I have studied, and spoke to various medical professionals but I needed more. It took a whole day for my membership to be accepted, BUT as soon as it was I was inquiring. What doctors in Texas are best? Is there a best in Texas? My child has had... They are proposing... I need recommendations! I prayed. It took a whole day to get responses. Meanwhile I was looking at past posts and what doctor they used. Thursday, I got a recommendation for a clinic (nowhere near Texas) and a doctor confirming that the medication clinic #2 was proposing was NOT the best and didn't deal with the OI issue. Yes!!! Answers!!!
Thursday of last week after the responses and our usual busy Thursday schedule, I waffled over contacting Clinic #3 and then just before 5pm I did. Then we went for a PT evaluation that lasted 3+ hours (sorry! W), but she confirmed that doctors needed to be looking at her Chinese x-rays (something clinic 1 and 2) have not done. We have this VALUABLE piece of medical history that doctors are ignoring!!! Thursday night I had a fitful sleep. Every time I awoke, I cried out to God to help us help Lollipop. It went something like this. Wake up, roll over, 'God help!' (in my head) and go back to sleep. Friday morning I called clinic 3 again, got voicemail, tried another number and talked to a human (but a hospital staffer who just wanted ALOT of information (not about why I was calling)) and I was about to be connected to a human at the clinic and then got HUNG UP on. Tried the second number again and after speaking to another hospital rep, got the voicemail AGAIN. I am persistent. So I prayed and called the direct clinic number one last time. The NURSE (?!) who answered is the same one who ended up with my voicemail from the evening before and she was just getting ready to call me!!!!!!!
I was on the phone with Nurse J for minutes and minutes (somewhere around 45!). My main goal in talking to her was to find out who they could recommend in Texas. But the questions she answered, the questions she asked, the information she had, the concern she showed... so when she said, 'Can you get here by May 3rd?' I responded with let me call my husband and I will call you at 11. It was 10:30am, I had to leave to get M&M to OT/ST. And I knew it would be a small miracle if Mr. Incredible wasn't in a meeting and able to actually take my call. A miracle happened. I started the call with, 'First I need you to get by yourself and sit down'. We talked and decided that THIS is what we needed to pursue for Lollipop.
But miracles sometimes have a price. Our price will be most likely missing our oldest's 13th birthday. My parent's are here, but we either won't be here or will not be here until late at night. God is in control though. I spoke with Z-man about what was happening and offered options (like take the whole family). His response was, "Mom, sometimes love has to sacrifice and my 13th birthday is a small sacrifice for getting [Lollipop] the help she needs. I know you have been trying to get her help and she NEEDS this. I have seen it first hand." WOW! I couldn't believe what I heard.
Friday was spent running into/out of town. OT, ST, Spring Festival... I left for a women's retreat with our church Friday evening and spent Friday and Saturday with a wonderful bunch of women. Sunday was my dad's birthday. Yesterday began the next 'phase' of trying to get us up to Clinic #3. Airfare. We are exploring different options and will hopefully be able to know our flights by this evening. We need to be at Clinic 3 by noon on the 2nd and will probably not be able to return home until the 4th, maybe later. It all depends on what the doctor deems necessary. OH! They WANTED to SEE her CHINESE X-RAYS!!!!!!!!!!!!!! The fed ex package will arrive there this afternoon.
Please join us in prayer that God will use this doctor to speak healing to Lollipop's bones.
Since before we brought Lollipop home, we have talked to doctors about her condition. However, there have also been road blocks. ie, the 'specialist' we contacted with her Chinese file and had accepted into their program within weeks of getting home declaring, 'she doesn't have OI bones, so we will treat the fractures but give no medication.' She was in an arm and leg cast when we had our first face to face with him and her leg and broken in a secondary place while IN the CAST.
Now granted depending on the type of OI you have (or your child has), there is a certain type that when a fracture is healing a SUPER callous forms and is very distinctive. But at this same time we had our pediatrician, an endocrinologist and a geneticist (and his whole team of evaluators) saying "she HAS OI!"
So we went to clinic #2. A wonderful first experience and then she broke her femur. Long, long story. But when a nurse tells me my child just needs to 'suck it up' after my child being on hydrocodone for almost two weeks because of the EXTREME pain she is in and they couldn't 'fit her in' and I KNOW she has walked around on a broken fibula at least TWICE.... a mom might get upset (I justified, it had been Christmas and New Year's after all). But now after two more fractures (or should I say one, hmm, ...but where there should be bone and there isn't... So what exactly IS that?!) and the average for a return call is 4 DAYS!!!! I am fed up!
With an OI diagnosis it is common to start a medication to strengthen bones. We have never been able to do that. BUT, we have prayed all along that if the protocol clinic #2 proposed is not what we should do that God would block the way. The medication they proposed has some NASTY, common side effects. But THEY haven't seen them in children..., but they won't tell me how many OI patients they treat! (sorry, I digressed) Well with fractures and indecisive doctors, the way has been blocked.
Last week, after feeling like I'd hit my head against an invisible wall for MONTHS. I decided to reach out. I applied to join the OI parents yahoo group. I have researched, I have studied, and spoke to various medical professionals but I needed more. It took a whole day for my membership to be accepted, BUT as soon as it was I was inquiring. What doctors in Texas are best? Is there a best in Texas? My child has had... They are proposing... I need recommendations! I prayed. It took a whole day to get responses. Meanwhile I was looking at past posts and what doctor they used. Thursday, I got a recommendation for a clinic (nowhere near Texas) and a doctor confirming that the medication clinic #2 was proposing was NOT the best and didn't deal with the OI issue. Yes!!! Answers!!!
Thursday of last week after the responses and our usual busy Thursday schedule, I waffled over contacting Clinic #3 and then just before 5pm I did. Then we went for a PT evaluation that lasted 3+ hours (sorry! W), but she confirmed that doctors needed to be looking at her Chinese x-rays (something clinic 1 and 2) have not done. We have this VALUABLE piece of medical history that doctors are ignoring!!! Thursday night I had a fitful sleep. Every time I awoke, I cried out to God to help us help Lollipop. It went something like this. Wake up, roll over, 'God help!' (in my head) and go back to sleep. Friday morning I called clinic 3 again, got voicemail, tried another number and talked to a human (but a hospital staffer who just wanted ALOT of information (not about why I was calling)) and I was about to be connected to a human at the clinic and then got HUNG UP on. Tried the second number again and after speaking to another hospital rep, got the voicemail AGAIN. I am persistent. So I prayed and called the direct clinic number one last time. The NURSE (?!) who answered is the same one who ended up with my voicemail from the evening before and she was just getting ready to call me!!!!!!!
I was on the phone with Nurse J for minutes and minutes (somewhere around 45!). My main goal in talking to her was to find out who they could recommend in Texas. But the questions she answered, the questions she asked, the information she had, the concern she showed... so when she said, 'Can you get here by May 3rd?' I responded with let me call my husband and I will call you at 11. It was 10:30am, I had to leave to get M&M to OT/ST. And I knew it would be a small miracle if Mr. Incredible wasn't in a meeting and able to actually take my call. A miracle happened. I started the call with, 'First I need you to get by yourself and sit down'. We talked and decided that THIS is what we needed to pursue for Lollipop.
But miracles sometimes have a price. Our price will be most likely missing our oldest's 13th birthday. My parent's are here, but we either won't be here or will not be here until late at night. God is in control though. I spoke with Z-man about what was happening and offered options (like take the whole family). His response was, "Mom, sometimes love has to sacrifice and my 13th birthday is a small sacrifice for getting [Lollipop] the help she needs. I know you have been trying to get her help and she NEEDS this. I have seen it first hand." WOW! I couldn't believe what I heard.
Friday was spent running into/out of town. OT, ST, Spring Festival... I left for a women's retreat with our church Friday evening and spent Friday and Saturday with a wonderful bunch of women. Sunday was my dad's birthday. Yesterday began the next 'phase' of trying to get us up to Clinic #3. Airfare. We are exploring different options and will hopefully be able to know our flights by this evening. We need to be at Clinic 3 by noon on the 2nd and will probably not be able to return home until the 4th, maybe later. It all depends on what the doctor deems necessary. OH! They WANTED to SEE her CHINESE X-RAYS!!!!!!!!!!!!!! The fed ex package will arrive there this afternoon.
Saturday, April 14, 2012
Officials and Divine Appointments
Our family with our adoption agency's president, Ms. Wu.
The delegates enjoying taking pictures of our children. LOL! They had them posing, some were more cooperative than others. But with six kids it's hard to get everyone looking the same direction with 4+ cameras flashing :)
Lolipop with the Vice Director of her former orphanage.
Lolipop with the director of the nannies at the orphanage.
Our family, the agency's waiting child staff, and all five Chinese delegates! There is the Vice Director (and I now have her card), the director of the nannies and the three men are civil affair officials.
God ordained that I picked up five gifts (2 of one kind and three of another), I could have never known before we got there!!!
We left at 6:30 in the morning and got back at 10:30 at night, but so worth it! And the kids were GREAT the whole day!
It was such a great day, I considered moving to Austin... and then we got stuck in traffic...
We began our time in Austin with a chance to speak to a couple of moms at a Chick-fil-A about adoption. I thought we were there to eat, but God had different plans. One approached us with, "how many kids do you have?". It was a great opportunity to tell her how God had grown our family (briefly). Her friend came out of the playroom and chatted as well. Apparently they both homeschool and had both thought about adoption already. When they noticed Lolipop's cast, we were able to lead into special needs adoption! Wow! Never thought our lunch could turn into a chance for advocacy! (I was sleep deprived after all :))
Saturday, April 7, 2012
To Meet or not to Meet, THAT is the ?
While I was out tending to M&M's OT/ST and doing our once a month shopping, we got a phone call AND Mr. Incredible remembered to tell me about it (a small miracle in itself as that doesn't always happen). Now everyday we get many phone calls, some of them are even not solicitors. :) So now we have a decision to make. After our instant, unplanned run to Dallas on Thursday, I am kind of inclined to say 'no'. But then I have to look beyond my wants to the awesome opportunity... We didn't visit Lollipop's orphanage in China, the all day trip and $$$ were just not something that we were willing/able to handle. Late last year the director of her orphanage was in the USA, visited our adoption agency and specifically wanted to know how Lollipop was doing, apparently asking our agency several times about her. LOL (I'm not the only one who asks repeatedly for something!) So within minutes of the request of me, I sent pictures and a brief update (in addition to the post placement report). Doesn't that make you think I just have oodles of extra time! LOL!
NOW a whole delegation from her orphanage is in the USA and want to MEET Lollipop's family!!!! They will be in Austin Wednesday. ...Well not what I had planned, but we don't have any appointments and if Mr. Incredible can get someone to cover, he could go with us too because I don't really see how taking six kids by myself for the 5 hour drive (each way) is humanly possible while still recovering from being sick for the last week and being able to keep up with the rest of next week and not collapse. aaaahhhhhhhh, deep breaths..... A Chinese delegation wanting to meet OUR FAMILY (not just see Lollipop). This #1 causes some excitement and anxiety, #2 it makes me curious as to why, #3 I want to ask "WHY, DIDN'T YOU tell US she had fractured an additional SIX TIMES in a YEAR!!!!!". (deep breaths, again) I so desperately want to know, but on the other hand, DOES IT MATTER?!?! She is my daughter. Whether there was intentional omission of pertinent information or unintentional omission, I cannot change it. We are where we are. She is our daughter. A little sister. A big sister. A member of our family. Cherished. Loved. Wanted. Not Abandoned. She is home.
In reality I think the officials really care how she is (even if they didn't disclose about the additional fractures) and want to make sure she is doing well. Or maybe they want to meet the crazy people that would adopt a child that breaks every third month?! ;-) For whatever reason they want to meet. I think we will make the journey (try to enjoy the drive) and enjoy getting to meet people who have known our daughter longer than we have. (head shaking, still a strange concept to grasp)
....and I think I have the PERFECT outfit for her to wear, all pink!
NOW a whole delegation from her orphanage is in the USA and want to MEET Lollipop's family!!!! They will be in Austin Wednesday. ...Well not what I had planned, but we don't have any appointments and if Mr. Incredible can get someone to cover, he could go with us too because I don't really see how taking six kids by myself for the 5 hour drive (each way) is humanly possible while still recovering from being sick for the last week and being able to keep up with the rest of next week and not collapse. aaaahhhhhhhh, deep breaths..... A Chinese delegation wanting to meet OUR FAMILY (not just see Lollipop). This #1 causes some excitement and anxiety, #2 it makes me curious as to why, #3 I want to ask "WHY, DIDN'T YOU tell US she had fractured an additional SIX TIMES in a YEAR!!!!!". (deep breaths, again) I so desperately want to know, but on the other hand, DOES IT MATTER?!?! She is my daughter. Whether there was intentional omission of pertinent information or unintentional omission, I cannot change it. We are where we are. She is our daughter. A little sister. A big sister. A member of our family. Cherished. Loved. Wanted. Not Abandoned. She is home.
In reality I think the officials really care how she is (even if they didn't disclose about the additional fractures) and want to make sure she is doing well. Or maybe they want to meet the crazy people that would adopt a child that breaks every third month?! ;-) For whatever reason they want to meet. I think we will make the journey (try to enjoy the drive) and enjoy getting to meet people who have known our daughter longer than we have. (head shaking, still a strange concept to grasp)
....and I think I have the PERFECT outfit for her to wear, all pink!
Monday, April 2, 2012
Little Things
Today I am thankful for the little things.
-getting math, spelling and handwriting done with the younger boys (been a couple of weeks for that)
-a cleaner kitchen, not my standard of clean yet, but the weekend pile up is slowly being beaten back :)
-the ability to breathe, it was a struggle yesterday
-possible hairline fractures, it's only a possible and it's on a non weight bearing bone
-umbrellas in the midst of a downpour
-phone, to call the specialist to tell them what is going on
-doctors who care
-electricity, to power the internet for research
-books, fun, educational or somehow both
-food, now I just need to cook some for dinner!
-smiles
-hugs and kisses
-vacuums
-rainy days that dissipate the heat, april 2nd and still the air is not on!!! yeah!
Each day is filled with blessing and today I am choosing to relish each one.
-getting math, spelling and handwriting done with the younger boys (been a couple of weeks for that)
-a cleaner kitchen, not my standard of clean yet, but the weekend pile up is slowly being beaten back :)
-the ability to breathe, it was a struggle yesterday
-possible hairline fractures, it's only a possible and it's on a non weight bearing bone
-umbrellas in the midst of a downpour
-phone, to call the specialist to tell them what is going on
-doctors who care
-electricity, to power the internet for research
-books, fun, educational or somehow both
-food, now I just need to cook some for dinner!
-smiles
-hugs and kisses
-vacuums
-rainy days that dissipate the heat, april 2nd and still the air is not on!!! yeah!
Each day is filled with blessing and today I am choosing to relish each one.
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