Today We Met Our Goal

So being the good mom that I am (lol), I have no pictures of today's feat, BUT we went out to a public playground! as a family!!! (minus Mr. Incredible) and Lolipop was with the general population (not in some stroller or swing)!!!!!

This may not seem like a large accomplishment to some, but for us... this was HUGE! actually bigger than HUGE.  It was a FIRST!

Before we left the house, I looked at the kids and gave them the rules #1 Obey the rules of the facility #2 Come when mom calls (because you never know when you might have to leave) #3 Behave like you know you are supposed to.  Then I looked directly at L and said, "I want you to try not to break anything."

So in her Wee Walker boot on her right leg and with a shoe on and ace bandage around her left leg, Lollipop played.  She played in the water, walked the perimeter of the concrete, used the restroom, and once with brother's assistance played on the play equipment.  She sat.  She stood.  She splashed.  She played.  She had fun.  (and there was even a daycare around, I was a little nervous about that)

AND tonight as I was tucking her into bed and we talked about our day with a GIGANTIC smile on her face she proclaimed, "I didn't break anything today!".  I still asked if anything hurt as is our somewhat nightly custom, but she stated that she didn't have any pain in her legs and she even gave me a high five with her left arm (she's favored that one since it came out of the cast in May and hasn't given high fives with it).

I am truly one blessed mama tonight.

Protocol

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.

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.

Answers

This last week has been filled with so much. A trip to D, our science co-op, rehearsals, scheduling and then the normal part of life as well.

The trip to D this week makes two in two weeks and unfortunately each time while I was gone, a chicken died. Who would have thought that the person that gets lashed out at the most by a certain child, would also be the person most greatly missed by the same certain child. The chicken incidents are symptomatic of the anger and fear that ANY change causes. Hopefully more healing will occur in this area before I have to head to D again.  Hopefully.  Praying.

We also now have an official diagnosis for Lolipop. On the day that marked her 4 monthiversary with us we found out that she indeed has Osteogenesis Imperfecta. We knew she had this, but getting a US doctor/specialist willing to diagnose it and treat it has been another battle. A four month battle. In the coming weeks we will be seeing an endocrinologist about bisphosonate treatments. We also have to go back to have her cast off. :) Come to find out her right fibula was fractured, again. This makes three fractures in the four months she's been with us and somewhere around 13 in her life (that we know about). It may sound like we are bad parents, but we have no idea of when this fracture happened. However, this is common with OI and one of the symptoms of OI.

Here's some excerpts from some of the literature we have. "OI is initially diagnosed because of fractures that occur with little or no trauma or injury." "There is no cure for OI. The main goal of treatment is to limit the frequency of fractures and encourage mobility and independence."

On the way home, after hearing her diagnosis, I was overcome with emotion (while driving!  Why is it always great revelations happen when driving?!  lol!).  We finally know what the monster in the closet is.  We finally know how to proceed and we are not still searching for answers.  Though we have identified the monster and know a direction, it still doesn't soothe a mother's heart for not wanting her child to hurt and wanting to make the owies go away.  

I have comfort in that God brought Lolipop into our family.  He sees the end from the beginning and knows all and sees all.  He sees her pain and wants to comfort her, even more than I do.  In all of this, God has a plan.  But, at least now we have some answers.

A Moment of Joy

As I was on the 70+ mile drive to Shriners this morning with six kids in tow and after having gotten them up at 6am and dressed and fed and leaving at 7:15am, I realized how happy I was.  Kind of a strange time to relish motherhood as I was zipping down the interstate.  But it happened.  I was overcome with a gladness for where I am in life and for how each child brings a special blessing to our family.  I don't have to worry about them suffering from the same loneliness I experienced as an only child.  LOL!

The news that we got from Shriners was not good or bad, but still inconclusive.  The DEXA test, shows osteoporosis, but since her DNA test is normal she doesn't technically and most likely doesn't have Osteogenesis Imperfecta.  However there are types of OI where the DNA is normal and so now we are trying to schedule with an Endocrynologist (I'm sure that spelling has issues) and see if the issue is more dietary (diet in China) or are we dealing with a type of OI, or is the brittle bones because of something else...  Though I'm frustrated with still not having answers, I have a peace that God is in control and we will find out why Lillyanna breaks so easily.  It just won't be today.