The Happenings at the NIH...

Finally I have gotten an opportunity to write a longer explanation of what is going on and what has been learned while here at The National Institutes of Health UDP program.

First things first they think they know what is happening to Kamiyah. They are currently running tests to confirm it and one of them is being sent to New England to compare genetic markers that would have caused this. They believe it is Narcolepsy Cataplexy.  If this is the case there is no cure, no treatment, it will not progress but it will never get better or go away. If this is in fact what it is we will just have to learn how to adapt. Kamiyah will never be able to drive or live entirely independently because an accident will kill her before the actual disease.

That is a hard pill to swallow.

Physiatry

This department discovered that Kamiyah is double jointed in ALL of her joints and that is why she is so clumsy and has a hard time stopping once she gets going. It explains the falling (not spell related) and why it is strange to us that she may fall and trip even when she is not "gone".

They have also figured out why she walks on the front of her feet. Her feet are so flat and her joints do not lock so it is her attempt at controlling the pain and to control her motion. We will be getting the very very expensive shoes and supports when we get back to Sioux Falls.

Developmentally they suggest demanding a Peabody developmental test to be done outside of the school district because she is behind and clearly the school is trying to skirt having to pay for an aide. If she does not get an aide she should not be in a public school or riding on public transportation because she cannot stop this from happening and the noise and hustle and bustle of alot of people will cripple her. The NIH is connecting us with the right team to come along side of us so when we get back home we are all on the same page and Kamiyah can lead the most normal life possible.

Physiatry also wants me to get a special type of swimsuit so she can still do something she loves but would reduce the risk of drowning if she were to have an episode in the water. Swimming has always been very very dangerous but Kamiyah absolutely loves it so I will order that as well.

As far as a helmet to be able to participate in activities they believe it will do nothing but cause more attacks because of the nature of what is wrong with her. They are hell bent on her just having a one on one person.

Sleep Lab

The sleep lab has recorded almost every type of attack and that is currently being gone over by a specialist. No results have been released as of yet.


Heart

This is absolutley normal and for this I am thankful.

Other findings

It has come to the attention of the doctor and us that Kamiyah's SAT's drop when she has these attacks. Her heart rate decreases and her oxygen level drops and then spikes back up when she comes out.

Weird.

Sedation

They are taking pieces of skin, doing a full body MRI/X-ray, getting a lumbar sample, doing an ABR for hearing, as well as checking her vision because the doctor thinks her vision has declined yet again.



That is all I have for now.... I have posted a picture of this weeks schedule, the team of people working for Kamiyah, a pic of her being a tiger even though she was exhausted, as well as the swimsuit they are saying she should have. Be sure to be following on facebook for short blipits of our journey and what we are dealing with in real time.

Much Love,

Breteni

The truck.

As I was driving home from work on the interstate this evening I was following a semi.  It was a simple semi, one that looked common with its typical silver back drop door. It did not strike me as a livestock hauling truck by any means. However, I started smelling something really off.  I looked at the side of the road to see if any animals had died or what could be causing the foul odor.  There were no animals.  So I crept a little closer to the truck and realized that it had to be carrying horses.  So I decided that the only way to get away from the smell was to pass it.  The problem with passing it was that I would have to watch out for cops and speed up enough to top its speed in a timely fashion. 

This seemed like a really great idea.  I got up the confidence, I checked my blind spot, I made sure no one was getting hurt in the process, however, I failed to predict what happened next.  As I picked up speed animal excrement started blowing out of the side of the truck and hitting my car.  I started to doubt whether this was the best decision and I quickly became discouraged and wanted to give up.  The odor became stronger and now it was coming at me in Mach speeds.  I almost let off the gas and slipped back behind the semi just to avoid this incredible mess. 

Then it dawned on me.

The semi truck was like my marriage.  It seemed normal from the outside but once you realized the extent of the damage you could not help but believe that there has to be another life. One of health and holiness if I could just get to the other side. One free of broken bones and concussions. One where my wrist was not fractured and my foot did not cause me to lose my step. One where sleep can take place without the fear of what he will do next. A life where lie after lie after lie to cover up the bruises was no longer the reality.

It was at that point I decided to just gun it. I was just sure if I could get beyond the truck that life would improve.  I was even starting to see the sunset from the left hand lane. One thing I did not think of was that I needed to let the air out of the car I was driving because it was just circulating that smell even though the truck was 5 cars back.

I thought once the divorce was final I would be past the worst of it.  The truth of it is,  the healing has only just begun.

Folks. I cannot say much but I can tell you this.  The truck smells alot better from the rearview mirror.  I hope that as time goes by the pain will decrease and the joys of life will increase.

Pass the truck. Whatever the truck is for you. Pass it. It is the only way to experience life the way God has it planned for us. 

And I just know it has to get better than this.

Garbage Pt. 2

Remember my last post when I touched below the surface and said what the rest of the world wishes I wouldn’t have?  You know, the one about Garbage.

Today I am going to go even further and talk about what can happen when you try to deal with the problem at hand.  I may even give you a few hints on how to conquer it.

Now that we are past the point of recognizing that the garbage needs to be taken out the next step is to actually implement a plan of attack.  This can get tricky.  Sometimes the people in your life like your garbage and will try to convince you that you need to keep it and maybe paint it a different color.  Mold can still grow on the color purple folks.  Even if you choose green it will still eventually start to reek.  You and ONLY you can decide whether or not your garbage can truly be salvaged.  Do not let anyone make you feel bad that it’s only future home is going to be the landfill.

Once you have decided where your garbage is going the next task at hand is to figure out how you are going to get it there.  Do you need to create a support team?  Is an accountability partner an option for you?  Does someone else need to be protected too?  Sometimes it is hard to see but our children can smell the garbage long before we can see it and many times they do not have the words to get help like we do.  Make sure all of their bases are safe too.  If we leave them out of the equation we will never hit this ball out of the park.

The plan is in place, you have your bucket full of confidence and you are just sure that you can overcome any obstacle.  You think that there is no way this can get any harder than the last few steps you have taken.  I am here to tell you that it can and you need to have your shield ready for when it does.  Garbage needs to be removed in layers.  It cannot all happen in one day.  Maybe today you will go buy some sturdy bags.  Or perhaps you will get a broom that can tackle the biggest piles of dirt.  When it comes down to brass tax, however, you will realize about half way through you become exhausted.  It feels like the garbage is procreating right in front of you faster than you can scoop it into a canister.  This is when you call upon your team. Tell them to bring bags. And smelly spray.  Let go of your shame.  Warn them ahead of time that this is the hardest thing you have ever done and to be sensitive.  Express that you are embarrassed, accept their hugs, cry, and then remember to actually breath.  When you calm down and pick yourself back up you will notice that the pile is getting smaller and more manageable.  Much less daunting and scary.

Never ever forget your team.  And remember, we all have blessings and struggles at different times.  The people that you have called upon will someday need you to help them take out their garbage as well.  When you get that call, grab up your extra bags and your bins and high tail it over there. Who knows? Once you arrive you may notice their garbage has become so moldy that it has grown its own pair of legs and is ready to take everyone down to their knees. 

Be. Ready.  Because heavens knows there is no way you can let the garbage do the same damage that it had done before.  You are ready this time around. 

You've got this. Your strength is immeasurable. If you don't believe me just ask God. He has been there all along. And he loves you more than you can ever fathom. 


P.S. These pictures were taken AFTER 12 car loads of garbage had been taken to the dump. This made me tired. This messed up garage was the story of how bad it had been for way. too. long.

Garbage.

I want to touch on a little issue that all people have and we know it but we spend most of our time trying to hide it.

Garbage.

You know what I am talking about. The stuff we hurry up and shove in a closet when we find out someone is coming over and they are 5 minutes away.  We might even spray febreze so that the lingering odor from it does not give us away when it comes wafting out of the closet at our unsuspecting guests.

But lets take this one level deeper.  What about the garbage of our life that is not so superficial?  What about the abuse that has been taking place for years.  Or the addiction that has been swept under the rug.  Maybe it is a secret that we just cannot keep anymore because it is eating us up from the inside out.

That Garbage.  That is the garbage I am wanting to take to the landfill today.  The kind that should have been there BEFORE it got moldy.  The last few months of my life have not been easy.  I have had to make decisions that no mother/wife wants to have to make and yet. I have.  As I was emptying out the garage today I was realizing how much it had been building up over the years and also how exhausting and freeing it was to just. Get. It. Out. 

I have rescued my daughter and I from a relationship that was going to take my life and would show her how woman never deserve to be treated.  I am not saying everything is fixed and that hurdles will never spontaneously land in front of us but I do know that the garbage that had been festering for a very long time is now being put in its proper place.  Where someone who knows how to maintain it’s horrific smell and can stop it from weakening the foundation of our home.

I have discovered a group of people who come in and help you rebuild yourself after the damage has been done and they lift you up as you start crumbling again.   They encourage you to keep pressing on because you are worth it.  Sometimes God places them strategically because he knows this would bring you to your knees if they were not there. For this I am thankful.

Garbage.  Take it out before it ruins your house too.  Hurry up! What are YOU waiting for?

“Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to?

The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage, but He is building a palace. He intends to come and live in it Himself.”  -C.S. Lewis

Things that were unknown…but are very real now.

I was diagnosed with Hypothyroidism in 3rd grade but the medication never did much for me so I just quit taking it until I became pregnant with Kamiyah and then I was more concerned about her than anything else. The funny thing was, though, that my thyroid problem went away according to all of my blood work so I never thought anything of it. My pregnancy progressed and my baby seemed to not be growing very well and by the time I was 37 weeks she was only 3.5lbs.  Well, she was born and her weight was just barely high enough to fit in her carseat and we went home!

When Kamiyah was about 10 months old we started realizing there was something wrong neurologically and we have no clue what happened. Until yesterday. I found out that I have Hashimoto's Disease and that infertility runs wild with it and usually people who finally do get pregnant their baby will not survive. If the baby does, however, survive their life is put in danger and they will more than likely be born with neurological problems.

This. Explains. My. Whole. Life.

I realized yesterday that my first two kids could not survive because of me and my daughter that is a straight up miracle will forever have to deal with a neurological deficit so rare that the Mayo Clinic cannot even treat her.

My heart is just crushed. How could we have not caught this before it reeked havoc on our family?

I have no clue. We are in the process of caring for Kamiyah and picking up the pieces of the cards we have been dealt.

Perhaps now that we can see our hand in this game of poker we call life we can trade in a few of these bad cards for a few that make our hand a lot more playable. We will get back in the game and we can still win.



"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." -Romans 8:28

Where he shows up...

I have been wanting to post for awhile but time has once again slipped away from me. Imagine huh?  Anyways…

Kamiyah has been falling a lot and we found out some not so good news about what is causing it.  Our friends, family, acquaintances, strangers, businesses, church and just people in the community have stepped up to support our family in this time of unknowns.

The funny part about trials though is that you realize where God shows up.  He is always there.   Sometimes though, it is hard to see him and sometimes when your sadness consumes you it is even hard to feel his presence. You feel like you are suffocating and, when you are finally able to look back, you realize he was just giving you a big bear hug. Sometimes those too can restrict the lungs. :P

Here is the list of places I have seen him over the past few months:

- In the eyes of the people who stepped up to help at Pizza Ranch

- In the hearts of all of the people who donated online and in cash

-I saw him in a complete stranger dressed in a cowboy hat and business suit who walked into Pizza   Ranch with the sole purpose of donating $500 and no one knew who he was before he disappeared.

-In the minds of the businesses who rallied together to make a raffle happen

-On the backs of people who got shirts to show their support

-On the dance floor in the face of an elderly man who loved his wife so much that he put on his best outfit and danced even though the years had gotten the best of him.

-In the souls of people who sent amazing cards and heartfelt letters offering us the help we needed in that moment

-In the eyes of two little girls named Ryah and Presley who love Kamiyah and pick up her as she is falling and tell her it is going to be okay

-In the arms of my husband as we thought the stress of this was going to tear us apart but all we can do is pick up the pieces and find hope

-In the moments that seem to be fleeting and yet stand still just because I got to share them with Kamiyah

-In a pair of bicycles and a bike trailer that causes little girls to giggle

-In baking cookies at 10pm just because she asked and I cannot deny the deliciousness of chocolate


There are many more places I have seen him but those are just to name a few.  One thing I have also realized is that when I felt like I wanted to give up and not love so hard (in fear of losing) was that the only chance my daughter has is if I give all of me.  This song (click here) pretty much explains where I am at.

Thanks for checking in <3 br="" nbsp="">

Pancake lessons of a little girl...

Time sure does fly when you have a fast growing miracle that, just a short while ago, was a figment of your imagination.  I am here to tell you she is real and she is simply amazing.  I have learned many things as a mother that could not have been taught in a classroom or lecture hall, and they could not have been preached on a pulpit.  The only way to learn them is hands on experience and a bit of encouragement from those who have gone before you.

If someone would have told me I was going to be a mom I would have scuffed.  If they told me she would the most beautiful tan I could have ever imagined, I would have ignored them. If they told me she would have epilepsy and would require something more of us I would have said, "We are not good enough for her."  But guess what? I would have been wrong all three times.

Pancakes have taught me many things in the past but this time Baby Pancake has taught me that I am good enough, strong enough, beautiful enough, and faithful enough for her.

Could it really get any better than this?

What has changed in the last two years?!?

How did we go from needing this piece of advice... To feeling like our world is out of control and this post is exactly where it is at?

By the Grace of God. That is how.  Can you believe that our "8 year wait" miracle baby turned 1 year old already?  Unbelievable.

We went from having empty hands and hearts to having a little girl who filled in the blank spaces and added more places where love would just continue to grow.

Go ahead... Idulge in some pictures...You know you want to. Summer is coming up and you will hear plenty more about the upcoming "Pancake" lessons that seem to make their way onto our griddle :)

 While we thought we were teaching her about life she taught us what life is all about...

  

This Christmas season...

Ya know, it is kind of funny how I imagined my life happening.  I pictured a house, a job I enjoyed, no children, no husband, and a BIG HUGE bird. That was what I thought my life would be like and I was sure it would be just perfect.  Then I met Steve, fell in love, lost a daughter, lost a son, lost 200lbs, gained perspective, am in college, and just when we started to build our life without a child, here comes Kamiyah.  Bakannah would be 7 years old now and instead of curling up in the Christmas ball we usually do we have been blessed to share this year with one of the sweetest little girls I have ever met.  I did not get much for gifts, in fact, I got into a car accident, my husband was stolen from and then his car ended up totaled.  Did that stop the joy? nope. Jesus has blessed us with so much more than we could have ever asked for and NOTHING could have taken that away.

 Many great people poured love on us and Kamiyah. I never knew Kamiyah would own Toys-R-Us in one Christmas! From friends giving us clothes, to family helping putting the car back together, to just visiting with people we have not seen in awhile, it was amazing.

This is not how I planned my life and it sure is a good thing God is good at what he does because I like this plan way more than what I had in store for myself. Please read through to the end. Perhaps you will catch a glimpse of the greatness. :~)

“Imagine yourself as a living house. God comes in to rebuild that house. At first, perhaps, you can understand what He is doing. He is getting the drains right and stopping the leaks in the roof and so on; you knew that those jobs needed doing and so you are not surprised. But presently He starts knocking the house about in a way that hurts abominably and does not seem to make any sense. What on earth is He up to?

The explanation is that He is building quite a different house from the one you thought of – throwing out a new wing here, putting on an extra floor there, running up towers, making courtyards. You thought you were being made into a decent little cottage, but He is building a palace. He intends to come and live in it Himself.”  -C.S. Lewis

Changing my path by 1 degree...

I have had to change my path by 1 degree many times.  My path to parenthood, my path to health, my path to college, my path to becoming a wife. Now, however, I am having to change my path yet again.  By 1 degree.

I have mentioned people that have been a blessing to my journey many times before but my journey as of late has given me another group of people that seek after God and have opened their hearts to our family.  Jackie, Dave, Andy, Heather, Eric, Jillian, Ryan, and last but definitely not least Jenni have been placed in our life at just the correct moment to open my eyes to see the awesome things that God has in store for my life.  They have been an amazing support, a lot of fun, but most of all have shown love to the least of these.  This group has pulled us under their wing and pulled us in tighter when the path became rockier than we hoped. Encouraged me as my path needed to change by 1 degree.

What is the 1 degree? I am changing my degree through Augustana College and am majoring in Interdepartmental studies with an emphasis on Education for the Deaf and Hard of Hearing, Sign Language Interpreting, and Religion. I can still become certified through NIC but I will do it a little differently than other people. I will do it while still fulfilling my role as a wife and mother.  I am excited for what God has in store for me and my family!

Sometimes the path just needs to change by 1 degree.

From a Nightmare to a Dream Come True...

Last year, right before the Jeremy Camp concert was set to start out at Lifelight, I started bleeding.  The bathrooms were at least 50 people thick and our car was in the middle of a corn field and 150,000 people were piling onto the festival grounds. I told my husband, "I do not think this baby is going to make it.." A young man from KLOVE radio station grabbed up all of our belongings and threw them in the trunk of the car.  My husband drove and prayed and cried out to the Lord the ENTIRE way into town (which took 45 minutes with the traffic jam pouring into the concert).  Jeremy camp was set to start at 9:00pm and we were hooked up to the ultrasound machine at 9:01 and we met our baby for the very first time.  The baby was healthy with a heartbeat of 146bpm!

Not gonna lie, the sound of this little ones heartbeat was the best concert I have ever been to or will ever attend in the future.

Who would have known Kamiyah would be rocking out to the same song that ran on this blog the whole time I was struggling with infertility?!? God did, and he delights in the joy that fills our hearts every time we look at her.