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.
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Just what I was thinking...
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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 -

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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. 

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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.