well, we stayed out of the hospital for a year. But Gabriel is currently at local children’s hospital. He has been very sick this week-coughing, letharic. We started antibiotics on Friday after a doctors visit. He had fluid on his lungs. There has been no improvement so we decided we should take him to the ER tonight. He has not been able to stay awake or move on his own at all. I have very sick too with a sinus infection. They are giving Gabriel oxygen, fluids and iv antibiotics.

I never imagined the site of an EEG screen would bring me to tears but this one did! See all those little lines? They are staying where they should be! Or at least they are  not jutting wildly up and down while they cross the screen. We are not doctors but we know this looks goooooood! 🙂 We’ve seen the bad and it looks nothing like this.

The last month has been a whirlwind. I literally can’t count the number of doctor and therapist visits we have had. We got the results from the tests with this developmental psychiatrist. We were not at all surprised to hear that in some areas-specifically impulse and attention, he functions at a 2 year old level. Thankfully he in cognitive areas (abc, 123) he functions more like a 4 year old. Pretty darn amazing considering what his brain has been through with seizures and drugs the last 2 years.

Based on the impulse results and A LOT of research on Chuck’s part, we decided to try a medication for ADHD. Instant positive results! We still have a LONG way to go but I feel like the ADHD medicine has helped his brain slow down enough to process basic life skills. One example would be undressing. He can actuallystay focused long enough and remember what he is doing. Before, it was one of many life skills that completely escaped him. We tried so hard, we practiced and practiced and practiced, but every night when it was time to change into jammies, it was like he literally didn’t remember what he was doing.  Getting in the car is another one! I usually had to plan to leave an extra 10 -15 minutes early to have to get him from the kitchen, out the garage door, into his car and buckled. Now I may have to remind him 1 time to sit down! We got to therapy 15 minutes early last week!  We are getting better reports from school as well. 🙂 He is joining in group games and we have witnessed him really interacting with his peers, not just engaging in parallel play.

2 years ago we went from a perfectly healthy child to a very sick child. Last year we went from a sick child to a healthier child with a host a special needs (physical, emotional, and mental). For the first time in 2 years I feel real hope that we have the resources in place for him to beat this thing.  We are adding a gastro specialist as well as a pulmonologist to his team because of low oxygen levels. We are working with the school district to find the BEST spot of him next year. We are continue to work with physical and occupational therapy as well as speech and behavioral therapy. There are moments when keeping track of all the appointments and paperwork can be overwhelming but then I spot and give THANKS that we have all of these amaze resources! What a blessed boy! Today I am overwhelmed with hope and joy!

 

 

 

In front of Cinderella’s Castle! (2nd night at Disney World)

 

We spotted by to say HI to Goofy. He noticed G’s  “I”m a Wish Kid” button and quickly gathered several characters to get a special family photo! Thanks Goofy!

I will be blogging more about our trip soon, just trying to get a few pictures up right now. We had such an amazing time! Make A Wish works with this AMAZING organization called Give Kids the World Village. It is where we were blessed to stay.  One of Gabriel’s favorite things was the train station.   http://www.givekidstheworld.org/

One of Gabriel’s favorite things was the train station. Which just happened to be about 50 steps from our villa’s front door. I think G drove the train at least once a day every day we were there!

 

 

 

We also ate LOTS of ice cream! They have a magical ice cream palace that is open from 7:30 a.m. to 9:30 p.m. You can have whatever you want and whatever silly quantity.  We also ate ice cream EVERYDAY! Especially exciting for a former Keto Kid! Gabriel loved picking whatever he wanted…he always kept it simple though…1 flavor of ice cream and sprinkles 😉

Meeting Pluto at Give Kids the World. Disney World sends characters to the Village twice a week so all the kids get a chance to meet the characters. Gabriel LOVED this! Meeting the characters was his favorite thing! He and Pluto were so cute this day they caught the attention of a camera crew from Miami. The crew was there filming a story on Give Kid the World after learning about it from ABC Good Morning America’s Extreme Makeover. There is a chance Gabriel be in the special the local morning show does.

Each kid at the Village also gets a special Mickey and they bring it for Mickey to sign his foot. Gabriel took this very seriously and held his doll just right 🙂

This is Miss Merry (one of the 2 characters at Give Kids the World Village). She came to tuck Gabriel in. He LOVED it!

Hee hee ok a few of the highlights! Hope these made you happy for today 🙂

Quick Update on other things:
Gabriel now has a pulmonologist on his team. We have known for a few months now that he is not getting enough oxygen during sleep. We did a 3 night in home test right before we left town. A little machine beeped everytime his levels went below a healthy level. Man on man, that thing beeped a lot ;(

The results of that as well as some xrays are in and we will be meeting with the pulmonologist tomorrow to talk about the causes and further treatments needed.

We also are getting an EEG scheduled to see if his brain is healing or the drugs are doing all the work in keeping the seizures away. The results of that will determine if we get to wean another drug or not.

We are also continuing work with his developemental behaviorist at Children’s Mercy. After months of testing we have some better understanding of where he is developmentally.

We would appreciate your continues prayers as we add to the team of specialist helping us fight for the BEST for our sweet boy!

 

 

What a difference a year makes!
Last year we spent Chuck’s birthday in the hospital with G. He had taken 4 ambulance rides in 3 days. We could not get the seizures to stop and his emergency meds were not making any impact at all. Chuck spent the nights at the hospital while I came home and cooked his keto food and got a good nights sleep. Then Chuck would come home during the day, try to work a little bit and come back at night. It was tough. After the seizures were finally under control we went home with a plan to start the process of getting a VNS for Gabriel. VNS is a small device(think pace maker) that would be surgically imbedded and would send electrical pulses to a specific nerve. There was a chance that it could help with the seizures. It seemed like the next best step.

At our next visit with Gabriel’s specialist we asked again (for the 3rd, 4th or 5th-I can’t remember how many times we asked over 6 months) to try Felbamate. The doctor agreed, telling us nothing would change. That was over 10 months ago! The day before G started that medication was the last day he had a seizure!

Fast Forward 12 months from the hospital stay.

He made Daddy’s Birthday Cake!

He took the job very seriously 🙂 Wearing the Ove glove oven mitt the whole time. He insisted you have to wear it when you are cooking 😉

It was VERY important to use EVERY can of sprinkles!

He was so proud of his great creation!

Daddy loved it too!

Here’s to hoping that we spend many more birthday celebrated outside hospital walls.

Whew…what a year 2013 was! We began the year in the hospital after several months of seizures ramping up instead of stopping. Gabriel started a new school in Feb-he missed as many days as he attended and spent the majority of the time asleep. In March Gabriel started Felbamate and the seizures STOPPED! We have not had one since! DREAM come true! After 3 months we got to wean him Keppra…great results…he had more energy and became more physically coordinated. After another several months and LONG discussions with doctors, we got to wean the ketogentic diet. Felbamate was the BEST change but getting off the diet was a 2nd close! Gabriel has done nothing but flourish since we started the wean! We have been officially off for sometime now and he is doing AMAZING! His interpersonal interactions and problem solving skills are growing in leaps and bounds! YIPPEE! So amazing.

When Gabriel first got sick, a good friend of mine got to take a dream vacation to Costa Rica. This girl deserved it! She had survived several really tough years! I remember at the time thinking maybe someday we can take Gabriel on a vacation again….and then after starting the diet. I had an official bucket list wish…

To take Gabriel to Disney world, seizure and diet free!

Later this month my dream is coming true! Gabriel qualified for a Make-A-Wish Trip and our family gets to spend a week in Florida. It is so exciting! The process has been so amazing!

On top of my Disney Bucket list wish coming true, Chuck surprised me with an amazing Christmas gift!…..

I am going to have the opportunity to have LASIK eye surgery 🙂 EEEEEE.  Many of you reading this helped make this happen…I am forever and overwhelmingly grateful!

To be honest, I had come to the conclusion that this bucket list item just wasn’t going to happen. All $ towards medical needs would be funneled to giving Gabriel every possible resource for a great, healthy and long seizure free life and that was fine.

I wanted to include these bucket list stories for anyone who is in a place that bucket lists or hopes and dreams seem out of reach right now. Maybe we are the one’s living a dream you are afraid to dream right now, I would encourage you to keep the dream.  The Disney wish seemed totally INSANE last year and I had literally giving up on eye surgery. Pinch me I must be dreaming.

This is a post I have been waiting months to post. Gabriel is officially off the ketogenic diet! It has been a very long and hard part of fighting off the beast that is doose and I am so glad it is over!

From what we can tell at this point weaning the diet has been nothing but good for Gabriel. He is more coordinated, more conversational, more communicative, more interactive, learning more, playing better, the list is mind boggling. Weaning the diet seemed to bring him out of a fog, that we didn’t know he was in. I have some many confusing emotions about the entire diet. It may have helped at the beginning or may have not. We just don’t know. I am beyond elated that it is not controlling every aspect of our lives. It has been so fun to watch Gabriel, try and enjoy food again. He has some quirky behaviors around eating right now that I think will even out. One week he was OBSESSED with Ham, then another time he would only eat oranges, this week it seems he cannot eat enough string cheese. I think he is concerned that a food will go away, so he eats as much of it as possible when we say yes.

The best day was the day I got to give him Macaroni and Cheese.  The day we brought him home from the hospital after started keto, he laid on the ground and cried and cried, asking me for MacE ONi. For whatever reason it was one of the hardest part of this whole journey for me. I hated that I could not give him the one thing he wanted. And bless his heart he tried so hard those first several meals to be happy and eat the food. He liked it, didn’t love it or obsess over it, I however sat there crying happy tears with every bite he took.

We still have a long way to go.  The good news is he is still seizure free…officially 9 months! We received results from his developmental testing, in some areas he is “normal” for his age level. This is great news! However, still hard news, because the areas he is now average in, he was WAAAAAY above average before!  Our hope is that will be to his long term benefit, that he was so far ahead before the seizures started. There are other areas that he is functioning 2 or more years younger than his age. We know this, we live it everyday. Hearing this validated what we are living, but was still sad.  The year plus of seizures has taken a lot away from our little boy.  But we are still standing, we are still fighting! We will continue to use every resource at our disposal and above all else G is an inspiring and amazingly resilient kid. At the end of the day he is happy little dude, who just loves to have some to play with! (and now a glass of orange juice of a snack is AOK!)

How do I put into words how good it feels to let Gabriel go play in another room and not feel fear?
He is doing so well right now. The diet wean was such a hard but great decision. It has been nothing but good! I feel like he finally has the correct amount of energy for a boy his age. His physical therapist has made several comments lately on how much better he is doing! We totally agree! If you just saw him moving around you might think he is a little unsteady or uncoordinated but compared to a year ago-WOW! What a difference. I don’t feel like I have to hover over him like a baby just learning how to walk anymore.

He is loving every new food we let him try! At this moment he cannot get enough cheese sticks or peanut butter. I am sure it will be something new tomorrow 🙂

We still have a long way to go in a lot of areas but today I am basking in and thankful for how far we have come!

Today is Veterans Day. I have always admired and respected our country’s service people. Strangely enough Gabriel’s illness has made it even more so for me. I think because I understand battle in a whole new way. I understand having to follow the orders from above, I understand moving forward through fatigue, I understand villigance towards a task. These are all things that were dumped in my lap and even though I don’t like them, I plow through because my son. My most precious baby boy needs me to do it. I can’t imagine signing up to protect and serve strangers, to leave my own family to save others. Amazing! Amazing! Amazing! Thank you Armed service members, past, present and future.

With the diet wean going so well, Chuck and I decided to break the rules a bit last night and let Gabriel have some french fries. ‘Frenchies” were one of Gabriel’s favorite foods before the diet. I still marvel at how well he has handled hearing NO to so many foods for so long.  We asked Gabriel if he wanted to eat French Fries. He immediately replied YES! I reminded him that he is getting to eat new foods now but we still have to be very careful and he can only eat what mommy and daddy give him. I was worried that he would want to eat everything he saw at the restaurant because until now he was only allowed to eat food from home when we went out to eat (which was not very often maybe once every 2 or 3 months).

 

We Headed to one of his old favorites RED ROBIN. Gabriel has running full speed ahead into the restaurant.

He jumped out of his seat and started grabbing as the fries hit the table. (I am sure he wanted to get them before we changed out minds !)

We had him dip them in Mayo to get extra fat in his meal (since we are still working off of ratios). –I couldn’t get the crop to work on the computer so you will see me on the side of all these shots trying to order and pay attention to G at the same time–our server didn’t understand what a huge moment this was 🙂

Let the SHOVELING! I mean eating begin!

He loved them and chomped down tons of fries!

Chuck and I were totally nervous the whole time and all night…but it went fine. Everytime we add a new food into the mix it feels like we are feeding a baby for the first time. All of the excitement, wonder and anxiety pumps through our veins.

There are so many good things about weaning the diet but one of the biggest is that I don’t feel TERRIFIED around food all the time. We are still very careful to monitor him but it isn’t as hard going out in public and fearing he will get something he shouldn’t. With the exception of french fries we are only adding real foods. He is now getting to have bananas, oranges, apples, cheese, popcorn and ham! (all with a side of cream or butter)

We just completed a successful round of Keto Trick or Treating. Gabriel LOVED the cars, trashies and other treats he got.

Gabriel choose to be a firefighter this year. I thought for sure he would want to be an engineer again and go grab costume from last year. He surprised me and went with my plan 😉

We passed out letters explaining Gabriel’s condition and little treat bags asking the neighbors to give Gabriel the treat bag instead of candy. We were WAY behind this year and got them passed out this afternoon! (Last year I had them made weeks before and passed out several days ahead). We are so appreciative to live in a great neighborhood with really nice families. A couple people even added extra treats or wrote personal notes to us. AMAZING!

It is so nice to allow him to have everyday kid experiences! Trick or treating was a lot of fun for him!

In general news we are almost 8 months seizure free and the diet changes continue to go well. His favorite meal right now is deli ham and heavy cream. The doctors are changing his ratio every week instead of every 2 weeks now. We are hopeful that we may be off the diet by Christmas.  His energy levels continue to be all or nothing but we are a little more used to it. For instance he was wide awake at 5 a.m. literally climbing the dresser drawers. Then he could barely stay awake to trick or treat (I ended up carrying him 1/2 the time) and now it is 9 p.m. and he is wide awake again.