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

At Last, No More Phenobarbital!

Continuing from my post last month, Levi's issues were caused by cutting his back molars.  It's hard to comprehend that kind of consistent suffering could have such a simple cause, but Levi doesn't eat by mouth or chew on toys, so it takes him much longer to cut teeth.  On top of that, pain decreases the body's tolerance for seizures.  As soon as he started feeling better, he got an ear infection that the first antibiotic, amoxicillin, didn't touch it, so he's on a round of Ceftin instead.  It seems to be working well.

One week ago Levi took his last dose of phenobarbital.  He's been on this med since he was three weeks old.  The plan was to wean him off after a year, but that didn't happen.  He'll be four in a couple weeks.  Our neurologist warned us that the last step in weaning this drug is the hardest.  Basically, he is in withdrawal, even though we have weaned very slowly over the past year or more.  He is irritable and has a hard time sleeping.  He's been staying up until midnight or 1, and remaining awake the majority of the day.  It's sad, because we can see how tired he is, but he's just unable to stay asleep.  It's all worth it, though.  Phenobarb impairs learning, and each step down we have taken has brought more clarity and understanding to Levi.  We see him doing more.  He's actually able to hold his head up most of the time now, and can even sit alone on a chair or couch for a period of time before sliding over.  This drug also hinders the liver from absorbing other meds effectively.  The hope is that this has been the cause of his need for high doses of other meds, and that we can begin weaning others as they are better absorbed.

Please continue to pray for Levi.  We appreciate all your prayers and support!!

Levi ready to go to school.

Our grand babies Charlie, Roni, and Carson.

Levi sitting on his own in the doctor's office.

Daddy and Levi dressed up for Halloween.

Not Sure What's Going On...

Over the last couple months Levi has not been feeling well.  He is fussy, constantly frowning, and those precious smiles we had gotten so used to are rare.  He's been cutting his back molars, and teething has always been hard for him, but I wouldn't think it would cause this much consistent pain.  For the last five weeks, he's missed all but 2 days of school.

As usual, my mind runs nonstop wondering what is going on and how we can fix it.  He has been to the pediatric dentist three times, but other than cutting teeth, his mouth looks good, although now his cheeks are swollen.  We took him to the ER once, which showed a slight ear infection, and had an EEG performed, which showed that the majority of his jerking episodes are not seizures, but instead a startle reflex.  Great news!  He's been to the pediatrician twice and received a clean bill of health.  The orthopedist gave him another round of botox injections to relax the muscles in his arms and legs.  The dietitian decreased the fat in  his diet.  So far none of these treatments have taken care of the problem.  The formula change just happened yesterday, so it's too early to tell if that will have an impact on the gas and tummy pains he's been having.

To top it off, Levi's insurance changed this month and he's had to switch to a new pediatrician.  She is at Cardinal Glennon, so I feel fairly confident that she must be a good doctor, but she doesn't know Levi.  I'm debating whether or not to make an appointment.

We know he's teething.  It's obvious, and the dentist confirmed it.  I guess I'm just afraid we're treating symptoms without getting to the underlying cause.  Teething seems to simple, but hopefully that's all that's going on and Levi will be feeling better once they pop through.  Prayers for his healing and relief of pain are greatly appreciated!!

OLDER Pictures

Thank you for indulging my trip down memory lane.  These pictures are taken before Levi was born (for the most part), when Tommy and Miranda were younger.  

My 30th birthday party :)

My Uncle Delbert, who has since passed away.

Tommy's graduation.

Here comes Kylynne.

I just love this picture!  It reminds me of Jesus and Levi.

Baby Tommy :)