100

While I sincerely apologize, for what seems to be, falling off the face of the earth the last two months, I am thrilled to be writing this post on this very special day.

My heart is jumping for joy today, as I am once again counting my blessings during a very difficult season in my life.  Today I am celebrating three precious lives that were given to me to love, to teach, and to cherish.

My dear Olivia has been my ‘buddy’ since the day she was born.  She truly is a mini-me.  We laugh, cry, ask questions, solve the world’s problems, sing, and just love being so silly together.  She is THE BEST oldest child I could ask for and has amazing skills that will make her such a strong woman. 

My little man, Elias, came to me during such an uncertain and emotional time.  He was a bright star that brought me out of darkness.  I was 8 months pregnant with Elias when Ahnya got deathly sick in 2006.  While some might think that it is not exactly ideal timing, I don’t think that I would have wanted it any other way.  His birth reminded us of the wonderful gift of life and brought happiness and positivity back to our home.  To this day, he is our comic relief and the reason for many Kloster-belly-laughs.

Miss Ahnya is the one you hear about the most, since this blog is mainly about her journey.  So, I would like to share some very special news today.

This morning I greeted the best Mother’s Day gift I could receive.  Today marks 100 days of Ahnya being seizure free.  For the past 100 days, I have been praying, unceasingly, that we wouldn’t have to live in fear of when, where, and how bad her seizures would be when they come.  Words cannot describe how incredibly grateful I am that this current anti-seizure medicine is working.  What little side effects she has experienced, we have been able to correct.  While this does not count the seizures she had at the Mayo Clinic, which were brought on by the doctors, her ‘remission’ is amazing everyone involved.  The only trigger or pattern we have ever been able to determine for Ahnya’s seizures is the fact that within 12 hours of a family member or doctor asking if there has been any seizure activity, Ahnya would have a seizure.  Since being back from Mayo, I have somewhat been walking on eggshells, hence the absence of blog posts...  It has been a long time since I’ve been able to walk away from my cell phone in the middle of the day… or not super-reacted to a noise when the kids were playing… or allowed her to ride her bike.

This past Tuesday (May 2, 2011) marked FIVE years of God’s continued blessings on our lives.  In the days that followed her hospital stay in 2006, we were beginning to recognize not only God’s unfailing love for her, but also His desire for Ahnya to continue to be a part of our family.  What wonderful experiences and challenges Ahnya has faced in the last five years.  Her unfaltering faith is motivating and encouraging to me.  She NEVER questions God's intentions for her life.  She knows without a doubt that He'll continue to be by her side in everything she does.

In March, we welcomed Miss Gloria into our home.  She is absolutely precious!  I decided I needed a little sunshine in my life and the kids were old enough to help take care of a dog.  We had no idea the endless love and energy she would bring into our lives!  100 is also significant to Gloria today.  She is 100 days old today.  That’s right, Gloria was born on the very day that Ahnya had her last seizure.  Little did we know that 8 weeks later we would be adopting her from a shelter to be a part of our family.  I can’t help but think that this little pup is God’s way of smiling at us. 

This day is significant in so many ways, and all I can really think about is how thankful I am to be surrounded by people I love.  Thank you for taking this journey with me and my family.  You have supported us through phone calls and texts, cards, money to help with medical expenses, giftcards, visits, meals, transportation in Minnesota, comfy beds for Ahnya and I in Minnesota, and above all...prayer.  Words will never be able to express how much all of this means to us.  Thank you for being the hands and feet of Jesus.  

Humbly yours,

Melissa

Putting into words what my heart longs to say...

I love music, but my desire to sing a song that I have written from my heart, is my ultimate dream.  This week I was listening to the radio while I was getting ready for work.  A song came on and, while I was not drawn to the type of music initially, I kept listening to see if I would ultimately appreciate the lyrics.  Man, am I glad that I did.  My heart began to tighten as I listened more intently with each note.  I couldn't believe that this voice was singing my heart's song....

I'm often asked how I can remain so strong with life's circumstances that have been given to me...circumstances shared on this blog and others that are not.  I am no hero.  I am no saint.  I am definitely NOT perfect or even close.  I don't write this blog to make me look a certain way or to receive accolades from friends or strangers.  I do, however, put myself in a vulnerable position to try to make something good out of something so awful.  As my faith has grown into this extreme passion of desiring God, I have come to realize through my prayer life that He just wants me to constantly seek Him.  At times I pray for something specific, knowing well that it comes from my shallow, one-sided "wisdom".  God is patient and has been teaching me that through the waiting, the crying, and the restless nights He is showing me His love and purpose for me.

I am thankful that someone has put into words what I have desired to say.  I hope it can be a blessing to you, as it has to me.

Please connect to this webpage (http://www.laurastorymusic.com/), then read the lyrics below as you listen...

Laura Story - "Blessings" Lyrics

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love us way too much to give us lesser things

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
What if trials of this life are Your mercies in disguise

We pray for wisdom
Your voice to hear
And we cry in anger when we cannot feel You near
We doubt Your goodness, we doubt Your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
But long that we'd have the faith to believe

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights
Are what it takes to know You’re near
And what if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know the pain reminds this heart
That this is not, this is not our home, is not our home

‘Cause what if your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

Prepared for any storm...

239 hours. That's how long my sweet baby girl had 32 electrodes (or as Ahnya would say, "stinkin' darn wires!") on her head before she finally had her first seizure.  Oh my, was it an adventure.  We did EVERYTHING we could possibly think of to, not only entertain Ahnya, but 'encourage' seizures to come! 


We had nurses bringing in stationery bikes; we played Wii bowling and boxing; we made up games with balls and balloons; we had a Music Therapist who gave us shakers, a hand drum, and a keyboard; we painted; we played Old Maid until I started looking like the Old Maid; we did her schoolwork; we stayed up until midnight (yes, on purpose); we had a 7-year-old friend come visit for a few days; we sang; we played Simon Says; and many, many more highly intelligible activities. :-) 

Every day the team of neurologists would visit and ask if we saw any sort of seizure activity and all we could do was shake our heads in disbelief.  They would encourage us and our devotion to the process, tell us they were lowering the doses of her anti-seizure meds, shake their heads in disbelief and smile at Ahnya on the way out the door.  This was the daily process for 11 days. 

On Day 10, the doctors finally said they were basically waiting for Ahnya to tell us she had enough.  They were absolutely amazed that this little girl had not crawled out of her skin yet!  This picture captures her state of mind...joyful!


Her spirit was so high despite the fact she had not stepped foot out of her hospital room for 10 days.  Everywhere she went, she had to lug around all these wires and equipment that were attached to her. 

I was crawling out of my skin!  I thought for sure they were going to discharge her and send her on her way, but admit me for a psych evaluation!  And yet,  because Ahnya was being taken off her anti-seizure meds, she was an 'Ahnya' I hadn't seen in so long.  She was vibrant, witty, mature, quick to respond, and alert!  It made me so sad to think about how her medicine has been affecting her quality of life.  My heart sank at the thought of all the time spent away from the rest of our family, her school, and my job.  I decided that Ahnya had been a champ and deserved to have a rest from all of this craziness and we needed to go home.

I'm sure you can guess what happened within hours of me making that decision!  Sure enough, on Day 11, Ahnya and her friend, Eliana, were unusually quiet as they devoured their meals on the floor of the hospital room.  I had this indescribable feeling that I needed to shift the focus from my card game to Ahnya.  Within 1/2 a second, I recognized the look an Ahnya's face and ran over to her, saying to myself, "Well, here we go!"  As I approached her, my spirit was sad and yet eerily relieved.  As many of you have mentioned, what a strange feeling to be asking for seizures.  They are so scary to watch and experience with Ahnya.  This one was so much worse for me.  She had now been completely taken off all of her anti-seizure meds and was only protected by 'rescue meds' prescribed by the doctors who were watching her closely.  I knew these 'rescue meds' would only be given to her in the event that Ahnya's breakthrough seizure would be so violent that she would not recover on her own.  As Ahnya began to fall limp into my arms, the nurses rushed in and assisted.  I saw that Ahnya's lips and toe nails were turning purple and all I could think was, "Thank you God for giving us the information we need in order to help Ahnya, but please don't leave us now."  Once they gave her oxygen and moved her up to the bed, I had this overwhelming peace come over me and I began to weep.  Within three minutes, Ahnya was no longer seizing and was able to breathe without her oxygen mask.  It took her awhile to wake up and speak to us, but she came out of it on her own and did not need any medicine to help her.  However, they still needed to capture 1-2 more seizures before putting her back on her meds and sending us home.

We were told that her EEG readings over the last 4-5 days were so strong that once she had her breakthrough seizure, she would probably have more to follow, and quickly.  And boy, did they ever!  She had 5 more seizures by 7:00 a.m. the next morning!  There was a test they wanted to conduct that would give them really good information about where the seizures occur and what part of the brain they affect. So around 9:30 that morning, they took us to a different location where they could inject a radioactive isotope into her IV within 15 seconds of the beginning of a seizure, then do a scan to track the seizure.  By 12:15 p.m. she had another seizure and they were able to get the information they needed.  She was finally able to rest and they gave her some heavy medicine to calm her brain down and recover.  She slept and slept and slept.

On Monday, February 28, the Neurologists came to share what we had been waiting to hear the entire visit.  A plan.  They showed us the results of the MRI, EEG, and SPECT Scans they conducted.  The bad news was that they saw seizures coming from all over the left hemisphere of the brain.  We were hoping that they were coming from one area because it would be easier to go in and take out the part that was causing all the seizures.  The good news was that we still had a few positive options/outcomes.  The first recommendation was to try one more medication to see if it can help Ahnya.  If by the summer it is unsuccessful at slowing down seizure activity, we will return to Mayo Clinic for other alternatives.  Some of which include a special diet, nerve stimulator, or a cortical stimulator.  I won't get into the specifics of each of those, unless we are looking at them as options down the road. 

The point is that our visit to The Mayo Clinic was a successful one and we were given additional information on Ahnya's condition as well as possible solutions.  I am so grateful for Ahnya's neurologists, both new and old.  Their wisdom and perseverance is beyond dedication to their profession.  They have loved on Ahnya and think of her as a miracle child.  We are humbly reminded of that every time Ahnya's case is reviewed and studied by a new physician.  I am not embarrassed or shy to tell each one that I appreciate their hard work, but want them to know I still save room for a miracle to work in Ahnya's life...completely understanding that they may be an essential part of that miracle.

We spent a total of 13 days at the hospital on Mayo Clinic's Campus.  It's a wonderful, old building called St. Mary's Hospital.  About half way through our visit, Southern Minnesota was blasted by a winter snow storm.  Minneapolis received a foot of snow, while Rochester got about 8 inches.  One morning, in the middle of the blizzard, I noticed something peculiar about the sidewalk leading up to the main building of the hospital.   I was trudging through the snow after acquiring my morning (mandatory) cup o' joe and I noticed that the sidewalk was completely clear of snow.  Being 5:30 a.m. I thought, "That's nice! The maintenance people are on top of things this morning!"  I soon realized that wasn't the case at all!  As the snow was falling, it was melting away immediately.  Most of the cement was actually dry.  I asked the wonderful, elderly volunteer at the information desk about the sidewalk that faithfully kept me safe in the winter weather.  She said that there is a heat source under the sidewalk that always keeps it warm, to a temperature that allows the precipitation to quickly dry.  As simple as this sounds to some of you, it made me think about how prepared I have to be, as Ahnya's mom, to weather any storm.  I need to be able to take in information, deal with it emotionally and physically, keep her safe, guide our path, and be ready for the next storm.  How could I possibly keep my spirited daughter safe on the road that lies ahead without my 'heat source' under me, to make sure that I have the courage, strength, and wisdom to weather any storms that may come?  These are the very things I pray for every day, all day.  Thank God I don't have to rely on my own 'shovel' to guide us through safely.

Keeping my eyes on Him,
Melissa

Is this room getting smaller?

The purpose of our stay is for the doctors to capture some of Ahnya's seizures and pinpoint the area in which they are coming from.  From this information, we will be able to come up with a game plan. 

Well, I'm happy(?) to say that this little girl has been seizure-free the entire visit here at Mayo.  We have sleep-deprived her and pretty much taken her off all anti-seizure medication...all of which should make it more likely for her to have seizures for them to record while we are here.
...
...
...
Just what I was thinking...
...
...
Now what? 

When it came time to pray for our dinner tonight, I paused for a moment when I asked for protection over Ahnya.  I quickly came to the realization that the very prayer I have pleaded to God over the last 14 months was being answered.  I am often huddled over Ahnya's bed at night, listening to that sweet child ask her Father in heaven to take away her seizures.  My heart skips a beat when she says, "Maybe He'll answer my prayer tomorrow, Momma.  Maybe tomorrow will be the day."  As a parent, how do you teach your young child the relationship between faith and prayer - between God's will and prayer?  Well, I think I'm the one learning from her.  This is best described by a conversation between Ahnya and one of her nurses today.

Ahnya has been hooked up to wires...on her toes...on her head...on her chest...everywhere!  It is a big mess!  Because of that, she can't leave her hospital room at all.  She eats, sleeps, plays, reads, does her crafts, and drives us crazy in that tiny room.  She is such a rockstar and has been truly amazing the last five days (she was admitted on Wednesday).  She hasn't complained much, or constantly said that she's bored.  She stays busy with pbskids.org and the crafts they bring to her.  We also have watched the movie Up five times. :-)  Well, today she was tired, irritated, and started showing some unacceptable behavior.  The techs keep coming in and adjusting the leads on her head, so this doesn't help.  After being denied sympathy from her grandmother and myself, she tried it out on the nurses.  She was complaining to them that she was tired of us and that we 'didn't know anything'.  The nurse said, "Well, your mommy knows a lot, but I don't know anyone that knows EVERYTHING.  Do you, Ahnya?"  Ahnya sat up immediately and proclaimed, "Yes I do.  Jesus does." 

I don't know what tomorrow will bring.  Ahnya may have a seizure or two and give us the information we need.  Or, the doctors may send us on our way with a "hold" in our plans to see if seizure activity comes back.  Or, I might be here another three days... waiting... :-).  As I drift off to sleep tonight, I am comforted that God is already there - He already knows.

Humbly,
Melissa

The glass is changing...

I consider myself a positive person most of the time.  This whole experience, beginning on May 1, 2006, has done its best to take me 'off the course' of optimism.  Just how many conversations can one endure that begins, "Well, we don't have a crystal ball, but we could try..."?  I don't expect perfection, but wish the percentage of positive outcomes outweighed the negative.  After meeting with the Neurosurgeon on Friday, I walked away with my heart weighing on the negative outcomes. 

The type of surgery that can be conducted on Ahnya's brain is a two-part surgery.  I found a pretty good, reader-friendly description that I took from www.epilepsy.com -

______________________________________________________________________________

How is the two-stage procedure done?

During the first stage, a surgeon creates an opening in the skull and exposes the surface of the brain. No brain tissue is removed, but small electrical contacts, or electrodes, are placed over the surface of the brain. Once these electrodes are in place, the scalp is closed. The patient then returns to a hospital bed and is closely monitored. The electrodes not only record the patient’s seizures electrically (thereby allowing physicians to identify where the seizures start), but also allow mapping of brain areas under the electrodes. During this kind of mapping (called extraoperative brain mapping because it happens outside the operating room), the patient is always awake and conscious. He or she is able to participate fully during the mapping. The completeness of the final map is limited only by the number and location of the electrodes that were placed on the brain’s surface.

The second stage of surgery, which may be several days later, is when the surgeon performs a second operation and removes the abnormal brain tissue, using the information gathered from the electrical recordings and the brain mapping. 

_____________________________________________________________________________

The second stage of surgery, described above, would be the IDEAL outcome for Ahnya because it would cause no further damage.  Unfortunately, the doctors at The Denver Children's Hospital are very concerned that the damaged tissue is too close to functioning tissue.  This makes it difficult to operate because of the risk of affecting the 'good tissue' during surgery.  While Ahnya's brain has transferred most of her language ability to the right hemisphere (since the infection 5 years ago), we now understand there is concern for her motor abilities as well.  We left Friday's appointment feeling defeated in our options and powerless to make a 'safe' decision.  

Today was different. :-)

With more options then what Children's Hospital is able to offer us, we have decided to do the surgery here at the Mayo Clinic.  A conference call, after our appointment, prompted the decision to move forward in anticipation of a more desirable outcome for Ahnya.  In order to start qualifying her for surgery this summer, there are two tests that need to be conducted here at Mayo - an MRI and an EMU (Epileptic Monitoring Unit) study.  This will take a couple more days this week. 

What a wonderful turn of events to finally attend an appointment that is optimistic and hopeful.  While I continue to hear about the notorious crystal ball, my vision of a positive outcome changed the moment I left the doctor's office and walked into one of the many atriums in the Mayo Clinic -

This beautiful chandelier reminds me of how complicated, precious, and fragile this little brain is.  I pray that her brain, and how she chooses to use it, will bless others and give them something to enjoy - that it will show God's goodness and love. 

My job is to stay focused and wise, while loving on Ahnya.  Please join me in praying for several things -
1.  We need our insurance to (quickly) pre-approve Ahnya's MRI and EMU stay in order for her to be admitted in the morning.  Please pray that everything is taken care of first thing in the morning and nothing will stand in our way of completing these tests while we are here.
2.  COOPERATION!  Although Ahnya could write the book "Complete Idiot's Guide to MRIs and EMU stays", she's quite the patient when it comes to IVs and EEG leads! :-)  Let's just say - she makes a name for herself!
3.  Our safe travel back to Denver on Saturday.
4.  Our sweet family who is not with us.  Jonathan continues to hold down the fort in Denver.  Please pray for them to remain safe and healthy.

Thank you for your concern, prayers, encouragement, and love. 

Now with my glass half full,
Melissa

"...and I will give you rest."

Bows in her hair, twirling to any type of music, bright red fingernail polish, the newest Disney Princess or Barbie movie, diligently playing 'crack the egg' on the trampoline when the Colorado weather reaches more than 55 degrees, singing (at the top of her lungs) with a CD of old-school Sunday School songs, coloring, 'crafting. . . .

How I long for these things to be as simple and carefree as they sound, for my Ahnya.

Unfortunately, as her mother, I am fighting the urge to keep her inside the house, attached to my hip.  If it were up to Ahnya, she would ride her bike, three blocks down to the park (by herself) and NOT mind stopping along the way every time a dog happens upon her path.  While I don't want to squander her independent and fiesty personality, the last six months have been a series of crisis data points, proving she is not to be left unmonitored.  The prior postings in this blog have, hopefully, described a little bit of what has brought us to this point thus far.  It does not, however, describe why the sudden change in seizure activity. 

Despite our liberal attempt at controling seizure activity with epileptic medication since her encyphalitis, Ahnya started having partial seizures in December 2009.  From January 2010 through June 2010, the seizures became more intense and more frequent.  A major seizure in July presented us with several new avenues.  We changed medicine and were referred to an Epileptologist. After an MRI, Epileptic Monitoring Unit (EMU) hospital stay, a PET Scan, NeuroPsych testing, and a Wada Test, it has now been determined (by a team of Pediatric Neurologists, Epileptologists, and Neuro surgeons) that Ahnya is a candidate for Epileptic surgery.

We meet with the Neuro surgeon, from the Children's Hospital, tomorrow and will have a better understanding of what kind of surgery, how long it will take, what the recovery will be like, etc. after our meeting.

In addition to setting up the surgery for mid-March, we have also requested (and been granted) a second opinion at the Mayo Clinic in Rochester, Minnesota.  Even Ahnya's specialists at the Children's Hospital recommend a fresh set of eyes taking a look at Ahnya's very unique medical case.  It has been a very daunting task to get everything ready to go at Mayo and remain in our time frame for surgery.  As a matter of fact, I was told yesterday afternoon they want us in Rochester by Tuesday, February 15, at 7:30 am!  Yikes!  The weather being as it is between here and Rochester makes it extremely unreliable and really not a practical option.  Many friends and family have stepped up to help (and continue to do so) in order to get Ahnya and I to The Mayo Clinic before Tuesday morning!  We currently have flight arrangements, and we are now working on transportation and lodging.

Nothing in our life seems easy, let alone 'normal'...oh what I would give for a boring life. 

Thank you for your continued prayer, support, and unconditional love.  Between the challenges that Ahnya's day to day needs bring, medical bills piling up, and the desire we have to just love on all three of our beautiful children, it is often easy to forget that I have a God who loves me, who is the source of ALL my strength.  All He desires of me is a relationship with Him.  I believe that if I remain close to Him, I need not worry about the details.  He's a BIG God that enjoys taking care of me and what is important to me.

My job is not complete, but I have nothing left...I am exhausted.  I cannot rely on my own strength.  I hold onto the promise that I don't have to...

Matthew 11:28-30
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest. ²⁹ Take my yoke upon you. Let me teach you, because I am humble and gentle at heart, and you will find rest for your souls. ³⁰ For my yoke is easy to bear, and the burden I give you is light.”

Please feel free to pass this blog address on to anyone that expresses an interest in being updated on Ahnya's story.  I hope this will not only be a tool that faciliates my healing and processing, but also an avenue of communication to our family and friends that we love dearly.

Blessings,
Melissa

Our autumn walk with an angel

by Melissa Kell Kloster on Sunday, October 24, 2010 at 8:16pm

 

Today, my family and I went on a walk and gathered some fall leaves.  It was a beautiful day and I felt like getting the kids outside.  Our daughter, Ahnya, has epilepsy and struggled with a few small seizures this morning.  I thought some fresh air would be good for her.

Before starting our outdoor adventure, Elias fell and broke one of my favorite baskets that he was using to collect his leaves.  He rose quickly after his sisters started picking leaves from our neighbor's tree.  Yes, we had to inform our children that in order to keep our neighbors happy, it is best to get the leaves off the ground. :-)

The walk was beautiful and I got some great pictures of the kids building their collections.  We walked around our neighborhood lake (more like a pond for those of us from the midwest) and Ahnya was so excited to see the playground!  She dropped her basket of leaves and took off running!  She and her brother and sister were swinging and climbing all over the place.  If you know Ahnya well, you know she's a little monkey!  As I got closer to the park myself, I saw an older gentleman sitting at a picnic table, reading his bible.  I thought, "What a great day to take some time outside with Jesus!"  He didn't look up at us the whole time we were there.  After playing with the kids on the monkey bars, I sat down in the grass and looked up into the sky.  So relaxed.  After about 45 seconds of solitude and relaxation, Elias came running over to me and said, "Momma, momma!  Ahnya's having a seizure again!"  This happened to be the phrase of the day, unfortunately.  My darling Elias was with Ahnya every time she had a seizure today.  I looked over to find Ahnya at the top of one of those cork screw climbers, with her legs wrapped around the pole, holding onto the pole with her hands, but her head was leaned all the way back.  She wasn't responding to us and just kept arching her back.  I ran over to her and reached up so she wouldn't fall over.  Jonathan got up on top of the playground to get her off.  The entire time I was absolutely amazed that she was still holding on...with this type of seizure she was having, she usually goes limp.

I happened to look around to see if there was anyone that might be able to help if we needed them to.  I saw the older man, now standing and holding his bible.  He was watching intently, but had a peaceful smile on his face.  He started to approach us and I thought he was going to ask if we were okay.  Instead, as he walked by, continuing to smile, Jonathan said that Ahnya had gone limp into his arms and was safe.

I have no idea how Ahnya was able to remain on top of that 6 1/2 foot pole until we got to her, but I do think that an angel had something to do with it.  Whether he was a man of God that knew the power of immediate prayer or was an angel himself, God is with us.  I was reminded of that earlier today when I received a text from our pastor that literally said, "God is with you."

My God reigns.