Family Pictures

I have compiled some of my favorite family pics.  Once I got started I got carried away. LOL

Levi in the hospital with meningitis, in drug induced coma.

Aunt Shelly

Aunt Misty

My first time holding him after the coma.  It had been three weeks since the last time I was able to pick him up.

Baby Dedication.

Before the colostomy.  Celebrating a poopy with no medicinal help.

One of my favorite pics!

First time sitting in a cart alone.

Spica cast due to hip dysplasia.

I love Moga! (grandma)

My boys :)

Our rock star son, Tommy, in the church band :)

Our grand son Charlie.

Daughter Raven and grand daughter Kylynne :)

Graduation from Early Intervention :)

Our grand daughter Roni.

Our grand son Carson.

Tommy's senior homecoming.

Snickers

Skittles

Dad, Lisa, Raven

Myoclonic Seizures

Levi had an appointment with the neurologist yesterday, and we've learned that the new seizures he's been having are myoclonic.  He's had infantile spasms and partial (focal) seizures since he was a baby.  We've tweaked a few medications, and he wants Levi's daily calories to be reduced.  He is only at the fifth percentile for his age on the growth chart, but his BMI is at 85%.  He's too chunky for his length.  The doctor thinks cutting some calories should help the ketones stabilize, which will help reduce all the seizure types.

Otherwise, he's doing very well.  He was so happy and active at school yesterday that he was exhausted by the time we picked him up.  He wouldn't give in to a nap, though.  He stayed up through the neuro appointment, dinner, and the majority of church group.

Thanks for your continued prayers for our little miracle boy!

Ups and Downs

For the most part, Levi is doing very well.  He is growing stronger and learning so much in school.  He can sit up in the recliner without sliding to the side, he is able to hold his head up for longer periods of time and more often, he's learning to giggle, which comes out more like a squeal and is so adorable!  Levi wakes up happy in the morning, and only rarely has evening fussiness, which used to be an every day thing.  His smiles light up the room.  He loves riding the bus to and from school, probably because the ride is so bouncy and the driver and aide shower him with affection.

Unfortunately, he is still battling an increase in seizures, and the partial seizures, which were eradicated after starting the ketogenic diet two years ago, have returned.  The ketogenic diet makes the body burn fat for energy, instead of sugar, which produces ketones.  Somehow, it is not really understood why, these ketones can stabilize seizures.  Some children have actually been cured of epilepsy with this treatment.  Levi's ketones used to be high and stable, but for some reason over the past couple months, we have had a hard time keeping them in the range they are most effective.  The dietitian has been tweaking the diet ratio, which has helped.  Some days he has only a few seizures, others are more concentrated.  This morning, he had 15-20 in a row.  That's very rare for him now.  It wore him out.  He fell asleep three hours ago and is still snoozing.  If you know Levi, you know that is very odd for him, indeed.  He fights daytime sleep with an iron will!

We tried frankincense essential oil for a while because we learned it has properties that lessen or stop seizures in some people.  It didn't work for Levi.  That's okay, he is still having FAR less seizures than he did before starting the diet.  I'm excited for the newest epilepsy treatment to come available in our state.  Charlotte's Web is a strain of marijuana oil that is very low in the substance that causes a high, and is making great strides in wiping out seizures.

We appreciate all the prayers and kind thoughts for Levi!!

Levi snoozing on Daddy's lap :)

Levi enjoying Lambie vibrating seat. We were surprised he still fit!

Levi giving Moga kisses. He loves her so much!!

Wow!  It's been a really long time since I posted any updates on Levi.  That's always a good sing that things are going well.  We've had a few bumps in the road over the winter (RSV, ear infections, viruses), but in the last seven months Levi has been in the hospital only once, and it was just an overnight stay.

For some reason, the seizure frequency has increased, and partial seizures have made a return.  We haven't seen this type of seizure since he started the ketogenic diet two years ago.  There have been several instances where he needed a rescue medication to bring him out of the seizure.  This med puts him almost immediately to sleep, and he is usually out for the majority of the day.  The following day he is typically tired and cranky.  We have increased Neurontin, which he actually takes for neuropathic pain, but is also an anti-epileptic, and have held off completely stopping Phenobarbital.  He has continued to have daily seizures.  He is sensitive to sudden changes in light, which will send him into a seizure.  This has become increasingly more severe.  Some days even the slightest shadow falling across his face will affect him.

Two days ago I learned that frankincense essential oil has been found to stop seizures.  I ran right out and grabbed a bottle, and immediately applied it.  He receives two drops twice a day on his feet or the back of his neck.  It's too soon to know how effective it will be, but so far results are promising.

He has just received Botox injections for the first time in his biceps and calf muscles to relax the tightness.  We've noticed a marked change in his arms, but the legs, which are much tighter, still need some work.

He is doing well in school, and loves to be there.  He rides the bus like a big boy and likes to look out the window.  All in all, life is good these days, and we are so grateful!

Looking Back and Feeling Thankful

It's been just over three months since our last big hospital stay.  During that time we changed his formula (still maintaining the ketogenic diet) and he had his tonsils and adenoids taken out.  We were in the hospital nearly a month.  It felt like the climax to a three year nightmare.  There is a song (Need you Now by Plumb) that I clung to during this time.  One of the verses says "Standing on a road I didn't plan.  Wondering how I got to where I am.  I'm trying to hear that still, small voice.  I'm trying to hear above the noise."  At the time, that's exactly what was going through my head.  How did I end up here?  I was trying so hard to listen to the voice of God but the clamor of my own crazy, fearful thoughts kept getting in the way.  And, dear God, WHY did we continue to go through the same things over and over again?  By his grace, I was able to push my own doubts aside and really listen to what I felt he was telling me to do.

That hospital stay was a turning point.  For the first time in three years, Levi is doing very well!  He is growing chunky now and looking so healthy.  He started a therapy intensive school last month, which has already done wonders for his strength and stamina, not to mention his interest level.  He smiles daily, an answer to a prayer I have prayed for years, that he could just be out of pain and happy.  He's working to gain control over his arms and legs.  Sure, there's still a long road to walk down, but finally, thankfully, we have put the hardest and most frightening things behind us and can look toward a bright future.

No matter how bleak things look, no matter how frightened you are, there is ALWAYS hope in God.  Don't give up.  Just keep believing, and don't give up.

A Merry Christmas

Levi participated in several holiday related activities at school this month.  He went shopping for us, saw Santa Claus, and sang carols.  Christmas Eve we had dinner at Aunt Heidi's house and then went to church for the candlelight service.  It was beautiful as usual. 

Christmas morning dawned early.  We had all our family at our house for a big dinner.  What a grand time!

Levi is still doing well!  It's been three months now since the last time he vomited (something that used to be a daily occurrence).  In only a few weeks of school, we notice that he's grown much stronger.  He is more interested in everything around him, and has the desire and motivation to hold his head  up better.  He's been so happy!  For so long I prayed that he would feel better and get to be happy, and now those prayers have been granted.  It's a glorious time!

He has had a bit of an increase in seizures this last month, since taking the last step down from Phenobarbital, to just a quarter pill.  We were scheduled to completely stop it on January 1st, but have decided to extend it to February 1st, due to the seizure increase.  Even still, they are way below the number that he used to have every day.

I hope you all had a Merry Christmas and are looking forward to a Happy New Year!

 

Third Birthday and First Day of School

Wow this day has gone by fast!  Levi turned three today!  Mom and I drove him to school for his first day.  He cried at the beginning, but by the time we left he was calmly laying on his side looking at toys.  When Tommy and I picked him up we peeked in the window before heading in.  He was sitting in his chair like a big boy, relaxed.  The teacher told me that when they took his braces off after we left his foot seemed to be hurt, so they called the physical therapist in to look at it.  She thinks it's injured.  His ankles have been tight and begun to turn inward over the last few months.  I'm not sure what's wrong but he has an appointment with the pediatrician in the morning.  Hopefully it's just sore from being stretched more often than he's used to.

As soon as we got home he had a warm bath and put on his new fleece birthday jammies.  Well who can resist the comfort of those?  He fell right asleep, and has been napping off and on ever since.  The poor little guy is worn out!

Graduation from Early Intervention (at home therapy)

Dressed for the first day of school!

Cuddling with Tommy after school :)