Ava makes two.......

Well, today was Ava's big doctor appointment, and we still have several labs out and some that did not get done due to us having to help Ava come out of it.  Several labs have come back though, and our intuition was right.  Ava and Anna's labs were almost identical.  I am not sure about numbers matching but Ava has low carnitine, and also several amino acids that are low as well, indicating a mitochondrial disorder.  Now the results that she has back are going to be taken for another doctor to look at to decide what the next step is.

I am thinking it is just a matter of time before I curl up in a corner and cry.  I'm not sure that would solve anything though.  But sometimes it just feels good.

I have given this to God.  I see this as a mess  and He is seeing the bigger picture so I have to sit back and just let Him have it.


 I look into their eyes and although I feel like I am carrying this on my shoulders......  I also know this is something they are living with.  True they don't know everything I do about their condition and they don't know the risks involved with certain things but it is still something they have to live with.  It is something they deal with.  It is something that is affecting them personally........and just look at those smiles would ya, so if they can smile so can I  :)

Sometimes the journey we are called to walk seems too long, and sometimes the mountains we are called to climb seems so wrong.............. but we have no choice but to keep walking...........

Thanking God in our nightmare

This was the scene earlier today.  Ava had that episode we had been waiting for.  She was trying to trick us at first as she woke up with sugar at 71, which isn't low enough to take her in, or even send her into what we call "an episode".  After refusing her breakfast 5 minutes later I took her sugar again and it had dropped to 63.  This was it. We had to go.  The problem here is that my sons blood sugar was also low and we were trying to get it up as well.  We got him stabilized and off we went. 

Our prayer was that this was all going to go smoothly but how my faith was tried as I realized how fast her sugar was falling.  I was shaking and God had placed on my heart a "defence"  I guess He knew I was going to need it...... again.

Three weeks ago we had the blood orders in our hands.  We went to the hospital and pre registered her.  I  had even gone to the lab and showed them the orders and told them that when I came in with this baby it would be an emergency and I would not have time to wait.  They were very understanding and passed the word to everyone in the lab.  Oh how much they ALL forgot in three weeks. 

The game plan was, my husband was going to take care of getting that stupid bracelet while I rushed Ava to the lab. 

In our hospital there is always an elderly woman to point you in the right direction and I didn't have time to catch the look on her face as I blew past her and admissions with that baby in my hands.  I went to the lab and rang their little door bell.  What happened next was UNBELIEVABLE!!!  The same woman that I had confronted and caused a scene with when I brought Anna in for her testing.  That same woman who told the others in the lab "when she comes in with a sick baby she is not to wait"  This same woman said...."have a seat we will be with you in a moment"  Oh my, the gate was opened and the "momma bear had been released"  I said "I will not wait I have discussed this with you and I need labs run on her now!!"  She then told me to "calm down I will get someone"  Out came the next UNBELIEVABLE.  This lab tech said "why are you so uneasy? you seem uneasy"  (like I had time for a therapy session in the hallway!!)  I said "her blood sugar is at 60 and dropping can we just get her blood drawn please"  She (in no hurry) walked us to the E.R  and what happened next was the most UNBELIEVABLE  of all, as she looked at some nurses in the E.R and said, "I think you all need to find someone to calm her down."  Oh I know she didn't just go there.  There were many things going through my head right now, like  my child could die here if her blood sugar gets too low, or you have no idea what we are going through right now.....or  should I just say HOW DARE YOU!!!   what I settled with was "I don't have time to explain to you right now why I am so upset, just get your little kit and get these labs done" 

They struggled to find a vein.  I tried to remain calm but God had placed a feeling in my heart  of caution.  I watched her and cried with her.  I got down on my knees next to the bed and prayed for her.  As a mother in that situation it is hard to find the words.  But I prayed if our answer is in that blood than to please please guide their hands to that  vain.  I looked up and blood was poring in the tubes.  They had found the vein.

What happened next was heartbreaking as my oldest daughter came in, Anna, who knows first hand how Ava feels.  She sat on the bed next to Ava and rubbed her head and held her hand and didn't say a word.  Ava was in a stare at this point, and just looked at Anna.  My Jaden put himself into a corner and cried.  He didn't know how else to deal with this.  I soon got him to come over and talk to Ava as he rubbed her head and said "you okay"

After monitoring her sugar levels we saw they were getting too low for comfort but later realized, after talking to the doctor, that they were lower than our meter was showing.  We decided enough was enough we brought her out of it.  We didn't get the urine we needed but hope to get that with her next episode. 


Later that same woman who tried to find someone to "restrain me" came in and humbled herself and asked forgiveness for the way she had acted.  I later found out why.  Ava's blood sugar had sank to 47 while they were doing the tests.   I had no idea.  But at that point she did.  She knew how critical this had gotten.  All was forgiven.

I came home and cried and wanted to ask "why?"  Why us?   Why them?    But I didn't.  I am not suppose to ask "why"  So then I started to thank God.  Thank you for getting us through.  Thank you for giving me the fight I needed.  Thank you for watching over this poor baby when she got more sick then we knew.  Thank You for being there and thank You for what you are going to do with this mess we are in and how it will all glorify You someday........Thank You...............

Facing your Giant..

Last weekend my husband and I watched a movie called "Facing the Giants."  A movie about a family that ,with every move they made and everywhere they turned, they were faced with another "giant."  I could very much relate to this movie, as I am sure we all could.  To watch how they just kind of stopped in the middle of their "battle" and put everything back into perspective.  Then put their priorities in the right order.  Once they put God first in everything they did, they began to conquer their battles and their "giants" began to fall down, one by one. 

These are the moments when the blessings are so much greater and the outcome is more awesome then we could have ever imagined, that we would go through it again to get the same results.

Every giant we face is put in front of us to shape us.  To build character and to even make us more humble. 

I would have never dreamed 7 years ago when we were talking about starting our family that we would have three children who would be facing a rare genetic disorder and that we would be buried in books and documents up to our eyeballs trying to figure out what would be our next move.  Where do we go from here?  I look back on our last 6 years of testing with Anna, taking her to every doctor we could and in some cases even being laughed at, as if we were making all of this up.  I didn't pray.  I guess I didn't think to pray.  I guess for some reason I thought that I was going to do this on my own.  Or maybe so many people told me that praying for your self was "selfish"  "find someone else to pray for and God will take care of you", is what I was told.  I had people tell me that there were so many other people who were worse off then me.  I was made to feel guilty for praying for myself.

Not only was I faced with a "Medical Giant"  I came face to face with a "mental giant" as well.  I had to quit listening to others and go back to what I believed my God was.  I believe my God handed me "giant" that He did not intend for me to fight on my own.    I believe that He placed a Giant before me to show me how small I am and just how big He is.  What I have been handed in my life has nothing to do with me but everything to do with bringing glory to Him.  I cannot face this "giant" on my own and I was not expected to.  If I did then I would only be trying to bring glory to me. 

When David fought his giant ,Goliath, he said, "You come against me with sword and spear and javelin, but I come against you in the name of the Lord Almighty"  God is bigger than any "giant" put before us.  He is bigger than your marriage that is falling apart. He is bigger than your negative checkbook balance and cupboards that are bare. He is bigger than your empty gas tank with only a dollar to fill up.  He is bigger than cancer.  He is bigger than any illness that you are facing. He is bigger than your foreclosed house. He is bigger than your uncontrollable temper. He is bigger than your negative thoughts. He is bigger than your depression. He is bigger than the hurtful words spoken behind your back. He is bigger than the laughter that brought on tears.  He is bigger than all of your fears. He is bigger than that job that you just lost.

 Maybe it is time that we look our "giant" whatever it may be, in the eye and say "you come at me with a spear and a sword but I come to you in the name of the Lord"........we were not called to face these "giants"alone..........

A date to remember

Well, there we are.  That is me and my husband Jim Bob, back when he had hair, and I had a waist.  I guess you noticed the trophy I am holding so let me just get that out of the way right now.  That is a trophy that we  had won at a dance contest.  More specifically a "Twist Contest"   Now before you have us labeled as Robert Goulet and Cissy King, I must tell you,  that this trophy was won fair and square.  Just because we were the youngest couple on the dance floor and we where the only ones not concerned about breaking a hip that night, does not mean we cheated.  What a night that was.

We use to do all kinds of things.   We would go out to eat,  go dancing, one time we went  through McDonald's  drive through to order apple pies.  When we got up to the window I leaned forward and said, "I would like mustard with mine and he will take some barbecue sauce."  That is the first time I let my wit shine in front of him and it totally caught him off guard.  But bless that woman's heart ,she gave us lots of mustard and barbecue sauce that night.  We did lots of things but one of his favorite places to be was the drag strip.  He loves to drag race...and I......well I was good at packing up the trailer when he lost and then we went home.  He would always get so mad at me because we would get there  and unpack everything and he would get in the staging lanes and then I would start putting stuff up.  Something about how I was not very supportive....or something.....but he married me anyway.

My husband and I met on a blind date.  I had just moved to Kentucky with my parents and started some college classes.  I had the option of taking music or art.  I chose art.  Behind me sat Jim Bob's cousin. One day she said, " I have a cousin who is perfect for you!"  I am thinking,  finally someone who is perfect for me.   So I asked her, "what's his name?"   She said, "Jim Bob."  I said, "really???"  I then agreed to let him call me.  I turned him down for the first date but he kept calling me.  I guess apart of my northern heart had trouble envisioning what someone named "Jim Bob" would actually look like.  I just new I was about to go on a date with a 9 foot tall man driving a truck that I would need a step ladder to get into, and that he would be  wearing bibbed overalls, and missing half of his teeth.  So when the time came I agreed to meet him, I was very scared to say the least.  I just knew this was going to be the worst night of my life.  But it wasn't.  He was the opposite of everything I expected him to be and in this case, that was a good thing. 

After three years of dating.  My parents told me they would be moving back to Illinois.  So I then looked at Jim Bob and said.  "You had  better ask me to marry you or I am going back to Illinois with them"  We were engaged September 21, 2002 and married June 21, 2003.

After 2 years of marriage we started our family, and that is when my waist line left,  never to return again.  When our oldest learned to talk that is when Jim Bob's hair started to fall out.  When we added number two and three that's when my hair started to turn that shade of "wisdom" that we all try to hide.

We had forgotten about us.  I  had devoted my time to the kids and he had devoted his time to providing for us.   And in the midst of it all we had forgotten about the foundation on which the family started.  And like any foundation that isn't taken care of we had noticed it starting to crumble.  Counting it up we figured out  it had been 4 years since our last date.  So we packed up the kids and sent them to "Nannies and Pa Pa's" house and off we went.

                                                                       

My how the times have changed huh???  Well it had been so long since our last date that we couldn't remember what to do on one.  I have so many food allergies so eating out isn't an option. He doesn't stay awake without a cup of coffee in his hands so we couldn't go dancing.   So we went to the movies. The movies is a good place to realize how old you have gotten and how old your about to get.  There were younger kids climbing over the seats.  I guess I appeared , to them,  to be someone who was not going to move to let them in.  And out of nowhere,  it came out of my mouth  "what is wrong with kids today??"  About that time and older couple comes in and the man says to his wife with quite a tone to his voice "well I am not sitting up front!! I cannot stand to sit up there, because it just gives me a headache!  So we are going to have to sit back here somewhere"  his wife just rolled her eyes.

I won't be long and the day will come when  we are sitting in a dark living room waiting for the timers to turn on the lamps so we can read the obituaries, in the paper, and plan our next date....