Orthopedic Visit, More Exciting Firsts, and Good News!

In my previous post, I mentioned that Levi had taken his first steps in his gait trainer, which is a specialized walker.  Since then, he has taken more steps and has added another first to his growing list.  Last night in the bath tub, he splashed for the very first time!  Although he's been able to kick his legs for the past few years, he has never done so in the bath.  When he splashed, he laughed.  I asked him to do it again, and he did.  We went on like this for a while :)

Today, he was vocalizing more than usual, and would make noises in response when we talked to  him.  This little guy is growing more and more!  He shared our cheesecake at lunch.  Levi thought my banana cream cheesecake was sort of tasty, but he flipped over Patrick's salted caramel cheesecake.  What can I say, the kid has good taste :)

Levi had an appointment with the orthopedic doctor today.  His feet have been turning inward and pointing down for quite a while, and it's grown progressively worse.  He takes daily medication for tight muscles, and gets Botox injections a couple times a year to keep them from tightening so much that it causes him pain.

The doctor said the tightness in his feet is caused by more than tight muscles.  His Achilles tendon is too short.  Next month he will have surgery to lengthen the tendon so his feet will be able to stand flat.  He will have short casts on both legs for about four weeks, and after that he'll have special braces.  Though we are never excited for another surgery, this should make a huge difference for Levi in comfort as well as productivity.

Stay tuned for more great things!  As we have always said, God is doing wondrous things for Levi.  It feels wonderful to see him so happy!

Levi and his big brother Tommy:)

First Steps!

Levi has continued to do very well!  In my last post I mentioned that he would be weaning some medications, specifically Poly Cytra K and Reglan.  Poly Cytra K went off without a hitch.  I was very nervous about weaning Reglan, since this med is what helps his stomach empty, and I feared he would begin vomiting daily again.

Thank the good Lord, that did not happen!  He is completely off Reglan now, and doing very well.  Levi seems to become more alert every time we drop meds off the list.  He is learning so much more now.  Just recently, he took his first steps in the gait trainer, which is a specialized walker.

He has been using this type of device since he was about 18 months old.  His teacher told me he was sitting in the gait trainer at the end of school.  He was not wearing ankle braces (his feet point down and turn inward due to cerebral palsy), because he wore them earlier in the day and he doesn't tolerate them all day.  She said it happened all of a sudden and they were all shocked.

In his fuzzy little socks, Levi pushed off the floor with his toes, and took about 10 steps!  This news is so exciting!  It's the first real indication that he is becoming more independent and moving on his own.

That is not the only wonderful thing going on with Levi.  He is learning to communicate.  I've known for a long time that he understands what we say, as we can ask him to do something such as bend his leg, and he will do it.  Now he has learned to shake his head no when we ask him questions.  If two items are held before him, he looks at both a couple times, and chooses which one he wants by turning his head and looking steadily at the one he wants.  

I'm so happy to report that he is thriving!  Thanks for all the prayers!  Please keep them coming :)

Neurology Visit

We had an appointment with Levi's neurologist, who specializes in epilepsy, yesterday.  Several new plans are in play, and we are asking for prayer that everything goes well and Levi continues to improve.

Right now, he is having only a handful of quick seizures a day.  We weaned off the ketogenic diet, which controlled the seizures, and he is not on any anti-epileptic medications (except Neurontin, which he actually takes for neuropathic pain).  This is SO exciting!

Levi is happy, doing well at school and at home, and is continuing to learn new things.  He is working on crawling, and has been able to scoot a short distance across the floor!  He has become and expert at moving in circles :).

The first change we are making is to wean off Poly Cytra K.  This is a medication he was taking due to the likeliness of the ketogenic diet causing acidosis.  He shouldn't need this anymore, and I don't anticipate any problems, but please pray that it goes smoothly.

Second, we are going to try to wean off Reglan.  Levi takes this medicine four times a day with meals.  It helps the stomach empty contents quickly, as Levi had issues with delayed emptying.  He's been on Reglan the past two years, and it was a great help, but it can have some harsh side effects, so we are going to try to discontinue it.  I'm nervous about this one, but even if we could eliminate half his doses, that's less medicine in his system.  The delayed gastric emptying was more than likely caused by the huge amount of fat in the diet, and since he is not taking that much fat anymore, the wean should theoretically go very well.  Please pray for this, and specifically that he doesn't have issues throwing up!

Third, the doctor is looking into beginning the process for starting marijuana oil.  This has made great strides for some children with severe epilepsy, Although we are happy with his seizure control at this point, if he could become seizure free that would be even better!  Marijuana oil is derived from the plant, but has almost no THC, the compound that causes a high.  We would simply put a couple drops of oil on his food.  I'm excited to see where this takes us!!

We are enjoying our new wheelchair van, thanks to all the many people who came together to help raise funds to offset the cost!  I could never thank each one of you individually, but please know that we appreciate every donation, every prayer, and every kind thought sent Levi's way.

The van has made our lives easier, and has made a huge impact on Levi!  There's no pulling and tugging on his body each time he goes in and out of the car.  This is huge for him!  This winter he will be very happy to leave a warm building and roll into his van, still tucked into his warm covers, instead of being lifted out of a warm chair into a freezing cold car.

Please pray for Levi to continue to grow and learn and be happy.  Those big smiles are so wonderful to see!

Working on crawling

Smiling at Daddy

School Field Trip, fun with Moga

Fun with Miss Robin

Levi's Reaction to the New Wheelchair Van

So yay, we finally found a wonderful wheelchair van, and it will be ready to pick up next week!  There are only two companies in the area that deal in wheelchair conversion vans.  We went to the first one, and they were so expensive we figured the other was the same way.  However, we decided to visit Southern Bus and Mobility anyway, and I'm SO glad we did!

This company had a base model van with a manual rear entry wheelchair ramp, a brand new 2015, for less than the other company's used vehicles.  We liked the van so much we decided to go pick Levi up after school and run back to make sure his chair fit in the van.

It did!  Levi was all smiles when we got there, and he thought the van was really neat.  He's used to being carried to a car seat and strapped in.  He's getting heavy, and it's hard on him to be picked up a lot.  It ends up making his muscles sore.  So he just loved the fact he could wheel right up the ramp and sit in the second row center.  The windows are huge, he can see out both sides and the front.  Levi LOVES to look out the window.  The van is equipped with two second row captain's seats that fold against the wall. Pretty cool!  Even better, the chair fits while one seat is folded down.  Here is what Levi's initial reaction to the van was like.  (That's our friendly salesman, Marcel, in the background.)

We decided to go ahead and take it for a test drive.  I was looking forward to seeing how Levi would react to the ride.  They shut the back hatch, which startled him.  When the side doors were closed, it got a bit darker in the van.  I'm not sure why, since I was sitting right next to him the whole time, but this scared him.  Check out the sad face he made.

I talked to him and rubbed his head while we were backing out of the showroom.  He wasn't too sure what was going on.  He didn't make a sound, but one fat tear from each eye rolled down his chubby little cheeks.  Poor little guy!

Once we were out in the sunshine he started feeling better.  Looking out the windows made him happier, but when we bounced over some bumps, he broke out into smiles again.  Levi decided he approved of the new wheelchair van, after all.

Happy Day!!!

Levi is happy again!  It took him a while to bounce back from the long stomach bug he had, but he's back to smiling, squealing, and kicking his legs again.  Yesterday, he ate lunch at school by mouth, and also ate dinner.  That's a huge improvement over the past few weeks, when he didn't want any food by mouth, and depended solely on g-tube feedings.

He had fun spending some time with Moga, Pa, and his little sister, Sharalynn over the weekend.  After a few weeks of feeling sub-par, it's great to see him enjoying toys, TV, and people again!!

Levi in his new reclining lounge chair. He loves it!

Levi checking out Sharalynn's crib.

Levi and Sharalynn playing together.

Back on the Right Track!

Though Levi spent the majority of last week in the hospital with a bad stomach bug, he's feeling much better now!  Monday was his first day back to school after a 2 week summer vacation and a week out sick.  After school, he was happier than I'd seen him in a while.  He loves school!

The Lift for Levi benefit is going great!  We have vendors ranging from gorgeous quilted items, handmade by my friend Ann, to Thirty One, Avon, Origami Owl, Scentsy, Jamberry, Paparazzi Jewelry, Mary Kay, and more!  There's still plenty of room for more vendors, both inside and outside.
We have raised over $700 on our Go Fund Me page, www.gofundme.com/liftforlevi, and are so grateful to everyone who has donated!  We have also created a facebook benefit page here.

We have received gift card donations from Casey's, meat donations from Sever's, and concert ticket donations from 105.7 The Point, as well as a listing of Levi's benefit on the community calendar on 105.7 The Point, KSHE 95, FM News Talk 97.1 and NOW 96.3.  T-shirts for volunteers for the day of the event have been graciously donated by Big Frog Custom T-Shirts & More.

Levi is looking forward to a fun weekend spent with his sister and his Moga (grandma) and Pa!



  

Hungry Boy!

Over the last two weeks, Levi has progressed from a few bites of baby foods, to eating half a jar at a time, and now is eating an entire jar of food plus Gerber puffs.  Levi loves the different flavors and textures.  It's very easy to know what he likes and what he does NOT like!  He absolutely will not open his mouth for food that doesn't taste good.

I'm so proud of how far he's come!  He knows to eat when he's hungry and stop eating when he's full.  He yells at me if I don't feed him fast enough :)  The world is truly opening up for him!

Levi was only 18 months old when the feeding tube was placed, and before that he never had a big appetite.  He could take food or leave it.  This may also could have been caused by the fact that he had to take crushed pills on top of just about every spoonful he ate.  He was on the ketogenic diet which is highly carb restricted, so Levi could not take sugary liquid medicine. The best thing about the feeding tube is the ease with which we can give medicine now.

Levi is now off the ketogenic diet and off all seizure meds.  He was on the ketogenic diet for three years, almost to the day, and though it was difficult at times, I would do it all over again to gain the improved cognition and seizure control we have seen.  When he started the diet, he was having 200 plus seizures a day (focal/partial and infantile spasms) while taking a cocktail of five different seizure meds.  Now he has just a handful a day at a few seconds each.  What a difference!!

We are in the process of planning a benefit for Levi to help us fund a wheelchair lift van.  The van my mom gave us has broken down, and now that Levi is getting so big, he needs a van with a lift.  We had planned on installing a lift in our current van, but that's no longer an option.  We need something that will last for a while.

Levi currently has a Go Fund Me page and we will be having a benefit for him on July 11.  More info to come soon.

Thank you for your continued prayers and support for our little Levi!!

Wheelchair Lift Van

Levi continues to do very well this week!  Though he can now eat yummy food, we haven't had much chance to practice.  He had such a tough winter that I don't think he went to school more than one full week at a time, and even that was not consistent.  Then he had spring break.  Now that he's going to school every day, he comes home so tired that he doesn't want to do anything, goes to bed early, and sleeps all night.  I'm not complaining!  He wakes up so happy in the morning and does so well at school, it's wonderful to watch him feeling good.  

As we continue to wean off the ketogenic diet (high fat to low carb/protein diet that controls seizures), we are still seeing few seizures, which is amazing in itself.  He is pretty much out of ketosis right now, and within the next few weeks should be completely diet free.  This is a huge deal for all of us!  For Levi, it means that his tummy will feel better and better as the fat decreases, and for me it means no more super strict time schedule.  After three years, I'm more than ready to say goodbye to the diet, but if I had to do it all over again, I would.  Nothing else controlled his seizures.  When he started the ketogenic diet in May of 2011, he was having upwards of 200 plus seizures a day, while taking 5 seizure medications.  Now, he is completely off seizure meds, almost off the ketogenic diet, and having only a handful of seizures each day.  There are times he has clusters of seizures, but usually he is in some type of pain at the time, such as gas pain, which has been very painful for him. Charliefoundation.org has detailed information on the ketogenic diet for seizure control.

This brings us to a topic that we have been pushing off and cannot procrastinate any longer.  We need a van with a wheelchair lift!  My van, which my Mom gave me and I love, has been having issues lately.  It's time to update, and we definitely need to get a van with a wheelchair lift.  Levi is getting so big and tall (he's almost 4 1/2 now!) that it's too hard on us and on him to take him in and out of the car all the time, especially when we do things like yard sales, where we are in and out consistently.  He ends up with sore muscles at the end of the day.

So, we are asking for help.  We may as well get a newer van that will last a while, and we absolutely have to get a wheelchair lift.  We will need to be spending at least $30,000, which is not something we can pull off on our own.  We have created a Go Fund Me account with a goal of $10,000 so we can put that down on a good vehicle and be able to afford the monthly payments.  

We don't like to ask for help like this, but it's such an important and desperately needed.  If you could, please help us.  Even one dollar adds up, and we are so grateful for everyone who has helped us so far.  

Go Fund Me/Lift For Levi

Thank you for your continued prayers, Levi is doing so well!!!

Chillin' with smiles :)

Beautiful dreamer

I'm too tired to eat, Mom!

Enjoying time with his sister.

Getting stronger!

Levi Can Enjoy Food Again!

Yesterday we went to Cardinal Glennon for a swallow study.  During this test, Levi is fed food and drink laced with barium so we can see where the food goes when he swallows.  Levi's had the feeding tube since he stopped taking food by mouth at 20 months old.  He's had about 4 subsequent swallow studies that showed he was at risk for aspiration (food going into the lungs rather than down into the stomach).  Thankfully, this time, after hard work at home and school, Levi did wonderful and is now able to eat food by mouth again!  I have high hopes this will further improve his GI problems.  He cannot have liquids just yet, but hopefully once he's used to eating again he'll be able to better control liquids as well.

Hallelujah!  Things are looking much brighter to us these days :)

Snuggling with Dino and watching Barney.  Aren't my new glasses scholarly??

Yes, I know I'm cute :)

My old glasses that Mommy lost.  Sigh.  The blue ones were much more comfy.

The Long, Hard Winter

Starting in September, Levi and I took turns being sick, making for a long winter.  It started the beginning of September, two weeks before we moved into our lovely new ranch style house (in our same neighborhood!) that works so much better for us than the split level.  Levi spent weeks out of school due to horrible pain but we couldn't pin down the cause.  He had a CT of his head twice to check the shunt, and the neurosurgeons even pulled fluid from it once to be sure it wasn't infected.  As it turned out, the pain was caused by cutting his back molars.  He's always had issues cutting teeth, but thankfully he's over that, we have an amazing dentist, and I'm pretty sure all the teeth are through.

After that, we saw a slew of viruses that zapped our energy and often kept Levi out of school.  My van broke down and then we were really home bound!

Levi spent a week in the hospital due to GI issues again.  During that time, it was determined that since he's been on the ketogenic diet (a high fat to low protein diet that controls seizures) for nearly three years, it's finally time to wean down the ratio.  After a ton of GI testing, the doctors jumped on my bus and figured it was due to the high fat content.  Thankfully, that seems to have been the issue. As we wean the fat from his diet, Levi is feeling better, and miraculously, his seizures have decreased dramatically as well.  

Hope springs eternal, as they say, and with the warmer weather our spirits have been lifted.  Levi is happy, and goes to school consistently again.  We are looking forward to a fun and exciting summer!

Levi and Sharalynn

Christmas 2014