Seizures & Stuttering

Anne is still having seizures. She actually had a video EEG a few weeks ago. She had a seizure during that time, which was great from a diagnostic perspective. She is having mild clonic-atonic seizures which originate from her left temporal lobe and both frontal lobes. They are considered mild because she remains conscious and lucid throughout the seizure. She is on her 2nd medication. The first did nothing but make her tired – it had no affect on her seizures. Most of the time, her seizures are mild and don’t last very long – but every now and then, she’ll have an intense one that lasts too long for comfort.

On a different front, Anne has started stuttering. It gets worse as she gets tired. We’re hoping this is just one of those “one step backwards” before she takes a few steps forward :-)

So please pray:

that we find the best medication to prevent the seizures from doing additional damage to her brain, and
that her stuttering would disappear.

Thank you! -kathryn

Good progress report

Both Anne’s teacher and PT at school read this journal. Typically, after I post an entry expressing my discouragement, they will try to encourage me the next day with all the progress she is making. I’m always touched by their thoughtfulness.

Well, this past Monday, the school PT went one step further and invited me to observe Anne’s next PT session. I guess she figured that if I saw Anne’s progress with my own eyes, I might start believing it :-)

I went today, and Anne really is doing well. Her focus is better. Her trunk strength and balance have improved tremendously, and her walking has improved. I really believe that in a few years, Anne might be able to walk independently with a cane. Wouldn’t that be amazing!

Her OT is also very positive about Anne’s progress. She is making active movements with her left arm. Again, her concentration and effort are improving, as well as her stamina.

Lastly, her classroom teacher has shown me most of Anne’s classroom work from the last few months. She’s more purposeful in her coloring. In other words, it’s not pure scribble scrabble, but you can see that she is making an effort to color a specific object.

Now, if I can learn to stay encouraged based on God’s faithfulness and character instead of Anne’s progress, well then I might receive a good progress report too!

Thank you for your continued prayers.

One year ago…

3-13-10

…Anne was practicing cheerleading moves in our living room. We had battled through food sensitivity issues, anger and behavior issues and hyper-sensitivity issues. Everyone outside our family could not believe that Anne was anything but the quiet, perfect little angel she showed to the outside world. But Anne had turned the corner on all of her “issues.” She was becoming that perfect little angel at home too. She would obey with a good attitude. She loved to help me with all of the household chores – especially cleaning and cooking. She was intelligent, artistic and sensitive – and a bit bossy. But hey, nobody’s perfect :-)

Now, I am dealing with all of those old issues. Her seizure medication is making her tired and irritable. She gets so angry when she doesn’t get her way – especially at me. She bites, hits, pulls my hair and likes to call me “stupid mommy” for the sole reason that we don’t allow the “s” word in our house. She is making progress, but it’s oh so slow. At night, my mind races through strategy after strategy to help Anne. Be it nutrition, or therapy goals or reading strategies, I have tons of ideas, but not enough time to implement them. It all leads me to feel overwhelmed and discouraged.

And God just seems hidden. It’s scriptural for God to be hidden sometimes. He’s hidden through most of Job. And when He reveals himself, Job is left shaken and repentant. Even though He’s hidden, that doesn’t mean He’s absent or aloof. I choose to believe that He has a plan for Anne and our family. We might be in a dark part of the journey, but it won’t be dark forever. He’ll give us light, just when we need it the most. In the interim, we must wait and take each step by faith. Faith in God’s good character. Faith in God’s sovereign hand. Faith in God’s tender mercies. Faith in His love for each one of us, and for Anne.

The days leading up to 4/13 will be difficult for me. One side of me hates that day. I hate what it’s done to Anne and our family. But the other side of me knows that God intends good to come out of it. God’s word demonstrates repetitively how He brings good out of the broken. I pray He does that for Anne …and for me.

Please pray:

That we will find the right medication to control Anne’s seizures – without negative side effects;
That we would not feel overwhelmed or discouraged and find comfort in God despite our circumstances, and
That God would help Anne to make progress in her walking, reading & writing.

Thank you! -kathryn

Upside-down-ness…

I’ve been thinking a lot lately about the upside-down-ness of the Kingdom of God.

I remember back when I was a very young Christian and working in a Christian bookstore. The owner of the store was a grandfather and had been walking with Jesus for a very long time. He was so learned and wise that most of his conversations involved answering questions about the bible from customers, friends or fellow church members. I would stand at the door of his office and listen to these conversations – hoping to glean wisdom or understanding. A lot of his answers to others centered on the Kingdom of God. This concept was so new, and so abstract that I understood very little of what he said.

Now, I find myself thinking more and more about the Kingdom. Everything about it is upside down… Death brings life; the humble are exalted; the weak are strong. I could go on and on. Continue reading →

Proud Mama

I’m going to apologize in advance for this update. It involves lots of – what we call – potty talk… But it is exciting! At least to Eric and me :-)

Anne – after months of only having a bowel movement with the help of harsh, medicated suppositories – had a breakthrough today. It started when – just as we were walking out the door – she said, “Mommy, I need to go poopy.”

“Really? Are you sure Anne, cause you say this alot, and then you don’t really have to go.”

“No, mommy, I REALLY have to go. Really, really, REALLY have to go. I promise.”

So, knowing we were going to be late, but thinking this might be THE time that she really has to go, I put her on the potty.

And yes, she went! We were so excited. I was cheering. Canon was cheering. Kate was clapping. It must of really made an impression on Anne because later, when this sweet, older lady asked how she was doing, Anne said, “Great! I went poopsters in the potty!” Life is full of adventure with Anne :-)

Proudly, kathryn

Pray for Anne…

March 2011’s prayer requests:

For Anne to know Jesus and for her life to bring Him glory;
Anne’s seizures are getting worse. Please pray they would improve, and
For Anne’s continued cognitive progress – for her improved language, attention and decreased impulsivity.

Holdin’ On

We received a good report from Anne’s neurosurgeon yesterday. Her CT scan showed many positive indicators including the decrease of fluid on her brain. The bad news is that Anne’s injury has caused significant atrophy on the right side of her brain (which is a loss of neurons and the connections between them.) We’ll just have to pray that Anne learns to compensate!

Dr. Reisner is such a kind and compassionate man. He genuinely cares for Anne and will probably follow her for a long time. But for now, she is stable from a neurosurgerical view and only has to see Dr. Reisner yearly.

Neurologically, however, we are just getting started. Anne will visit her neurologist on Monday. He will address her seizures (which are still present) and eventually her attention/impulsivity issues. I’m sure we’ll become well acquainted with the neurologist’s office :-)

I’ll share a glimpse of our morning with you all… After breakfast, as I was sweeping up crumbs and mopping up spills, we were listening to Toby Mac’s Holding On – very loudly:-) I dropped my mop and picked up Anne. Canon and Kate danced around me as I was spinning with little Anne. She was squealing with delight. Then the doorbell rang. Yup, the Orkin Man. So he just joins in the fun. He takes Anne and dances with her. I pick up Kate. Canon is in the middle doing his 8-yr-old boy dance (use your imagination). The Jacksons and the Orkin Man dancing to Toby Mac. Good times. Great song…

We’re holding on over here ;-) kathryn

A deposit… of things to come

I was just outside playing basketball against Canon and Kate. I was guarding Canon, and Canon yells, “Down low, Kate – go low.” Canon and I turn around to see Kate kneeling down “low” to the ground. We both burst out laughing. For you basketball newbies, “Go low” means go toward the goal and be ready for the ball. We were playing while Eric was inside putting Anne to bed. (And now Eric is playing basketball with Canon while I stay inside with Anne…)

This is just one example of how the dynamics have changed within our family. Because Anne gets so tired in the evenings AND because of her disability… Canon and Kate are together alot.

In the beginning, this was difficult because Canon projected his grief onto Kate. There was lots of bickering. Now that Canon understands the true source of his grief, he has prayed for his relationship with Kate to improve – (which is AMAZING. My jaw almost hit the floor when I heard him praying for that!)

The other day Canon said, “God has changed my heart towards Kate. I really like playing with her now.” It’s true. They have so much fun together!

Even though their relationship is wonderful, and brings me much joy… lately I’ve been more aware of Anne’s absence in their play – which has made me sad.

Last night, Anne had an extra boost of energy, so she was able to stay up later with Canon and Kate. Instead of two kids playing, it was three. They were all wrestling and tickling each other on the living room floor. There were lots of squeals and laughter.

As I watched the THREE of them playing, I felt especially aware that this was God’s gift to me – a deposit, if you will – of things to come.

It is so hard to accept this new life God has given us. I’m tired of feeling sad. I just want to submit and accept and move on. I still feel like God’s hand is pressing me down into grief – like I have more work to do – more wrestling. It WILL end, and God will help us to submit and rest – all in His timing.

We covet your prayers…

for comfort and rest for Anne – that she would know God’s love for her
for perseverance for Anne – and for all of us :-)
that we could find joy in her current recovery and trust God for her future (instead of worrying about it).
And for God to continue His healing work in Anne!

THANK YOU! -kathryn

She’s doing well…

Anne continues to improve little bit by little bit. She’s come so far since she was released in the hospital last June.

She’s doing so well during her hippotherapy (horse therapy) sessions. This past Thursday she rode frontwards, backwards and sideways. Watching her ride sideways with her feet dangling over one side of the horse and her torso moving in rhythm with the horse ALL WHILE KEEPING HER BALANCE – reminded me of how she could barely sit up by herself when she first came home from the hospital. That’s good progress :-)

Considering the severity of her injury, she has some amazing cognitive strengths – including her memory, language and reasoning skills. It’s a good base for her to build upon.

The past month or so I’ve been wrestling with God’s goodness. I’m finally in a better place – closer to surrender and trust in His plan for Anne. I’ve been reading a book by Nancy Guthrie called, Hearing Jesus Speak Into Your Sorrow. Great book…

I’ve moved to a place where I am less concerned with Anne’s physical well being than with her spiritual well being. Don’t misunderstand, I’m still praying for her continued healing! I just pray more fervently for her to love Jesus and trust Him in the midst of her tragedy. I pray that for all of us… Canon, Kate, Me and Eric – to move into a deeper more meaningful relationship with Christ.

Anne brings us so much joy! We are so grateful to God for her life!

Thank you for your continued prayers :-)
-kathryn

“Terrific Kid”

Award Day at school

Anne received an award at school today! She was recognized as a “Terrific Kid” who demostrates “a positive attitude, good character and responsible citizenship.”

Canon is a proud big brother

Anne’s teacher was very kind to give this award to Anne as a means of encouragement to her and to us, her family! We were all present and watched as Anne received her award in front of the PreK, K and 1st graders.

Anne went to her third hippotherapy session today. She LOVES riding and is showing improvement each week :-)