Our little guy continues to be doing very well. We went to the zoo for 3 hours one afternoon this week. This would not have been possible during the last year. He would have been totally exhausted after an hour. He has wanted to go outside and play, his favorite pasttime at the moment is “gardening”. He has a couple new shovels and rakes that he uses to move dirt from one part of the yard to another and back. He is interacting very well with others including other kids. Several times recently he has talked with other kids at the park or library. EEEE 🙂 so wonderful!

We are continue to wean him off of one of his medications. We took 1/2 pill away 2 weeks ago. Today we get to take another 1/2 pill away. So he will be down 1 whole pill a day 🙂 We hope and pray that the wean continues to go well.

There are some very good things happening in our lives right now.
Gabriel is still seizure free! The medicine weaning is going well so far. No breakthrough seizures and we noticed his eyes were brighter within the first 2 days! Hooray!

We have also found a new food he likes. He calls them his crispy crunchies. We microwave 9.5 grams shredded cheddar cheese with 9 grams of butter until most of the butter is absorbed into the cheese. Then we measure how much butter did not soak into the cheese and give him that amount to eat with the crunchy cheese. HE LOVES IT! It is so great to hear crunching noises coming out of his little mouth!

Mostly importantly for this blog, we want to give a HUGE, HUGE, HUGE Thank you to our friend, Helen Ransom of FACES YOU LOVE PHOTOGRAPHY, and these amazing families, who donated to a fundraiser in Gabriel’s honor. They raised over $1000 to our family! We are overwhelmed with gratitude!

We have a print of this picture that I can’t wait to hang up in our home, as a visible reminder of how God uses people to touch and bless the lives of others.

I cannot say enough about Helen as a person and a photographer. If you live in the Kansas City area, I cannot recommend her enough. She does so much more than just click the camera lense. She works closely with her clients to get lasting meaningful images.  Check out her website and blog at www.facesyoulove.com

I am proud to say Gabriel was one of her first clients as a professional and he did not make it easy. He spent most of the time running around and refusing to look at the camera. She still managed to one of my all time favorite shots of our boy.

We are hoping and praying his eyes can be that bright again! 🙂

We have made it over a 100 days without a seizure with no external cause. (The small one in May was a direct result of antibiotics).

We had Gabriel’s 3 month appointment with his team on Wednesday. They were very glad to hear that we had been seizure free for so long. We knew after 3 months with a seizure that we could start to ween treatment—either change diet or pull meds. We were hoping for a diet change because we having a very hard time getting him to eat again, somedays he will only have a couple hundred calories. We got a quick, big NO on changing the diet but a quick big YES on weaning a medication. So over the next couple months we will slowly lower the dose of one of his medicines. The ultimate hope would be to wean off medicines and go off the diet and stay seizure free. It is possible and has happened for some families. The diet is getting quiet a bit harder lately for a variety of reasons, it seems very hard for him to sit at a table and eat with other people now, he is also doing things like putting banana’s still in their peel in his mouth and trying to take a bite. He has been so good for so long that we haven’t had to keep all of the food under lock and key but that is no longer the case. It really stinks having to tell your children, “no you can’t have that” when he is eyeing fruit. For now we are sticking to it delighted at the lack of seizures and excited about giving him less medication.

Gabriel did not have surgery today! This is big news because a few months ago we had set today June 1st, as the day Gabriel would have VNS surgery. He did not have surgery today because he has only 1 small seizure in the last 3 months! Yippee! We are prepared to have the VNS surgery in the future, if he needs it….but he did not have surgery today. Can you tell I am glad he did not have to have surgery 🙂

Instead we decided to celebrate by purchasing last minute tickets to ride Thomas the Train. It was so nice to have time together as a family doing something just for fun!

Our sweet observer was taking in all the sights! (he didn’t care about pictures)

He took it all in with big smiles! He especially liked when the conductor came by to punch his tickets.

He held onto all of tickets like they were gold!

Bye! Bye! Thomas.

It was a great day. We really appreciate getting to do normal kid things with our little man. He still doesn’t have a ton of energy or stamina for big events.  We are learning to go on the adventures and enjoy them for what they are. He loves them no matter what and talks about them for a long time afterward.

Gabriel had a seizure this morning. It was between 6-10 seconds long. Sigh.
The wake up to the all too familiar gasp followed by the shaking was not how I planned to start my first official day of summer break. He went immediately postictal, the phase of instant sleep and total exhaustion, in which the body recovers. I took this as a good sign that his body knew to stop and rest. Previously, when he was having a lot of seizures his body had stopped responding this way. Often he just stopped for a second or two and kept going.

As always my brain starts running through the last several day and hours seeking a possible “logical” explanation. There are several….antibiotics, late nap, small tweak in medicine. Then to the not so logical but we don’t rule anything out…there is a full moon. (Ironic because I saw the full moon through a window last night and thought….How pretty….not UH OH full moon—it has been very nice to have a break from seizures!)

http://www.youtube.com/watch?v=qOkImV2cJDg

A song that has spoken to me a lot latley popped into my head as soon as the seizure happen. I love the lines: The God of Angel Armies is always by my Side, and He is a Friend of Mine”. It is a prayer I have prayed for other this ALOT this week., for all those impacted by the tornado’s in Moore, OK to a collegue who lost her son to depression. My prayer has been that those in pain will know, feel and be aware of God’s love, concern, compassion and strength in the midst of the worst.

It feels silly to be writing a blog about a break from seizure freedom in the light of these things. But my purpose is to share out story. Also to remember that pain is pain, joy is joy and one our privilege as people is to share in one anothers lives. Right now we are standing on the line the seizure drew this morning….hoping for another long break and bracing ourselves to deal with more if they come.

I had a favorite book when I was little called “INSIDE, OUTSIDE, UPSIDE DOWN”. That is how our medical life with Doose feels! On Thursday Gabriel was diagnosed with Bronchitis and we had to start antibiotics. It is still crazy to me that as parents, Chuck and I dread antibiotics the way most parents dread hearing their child is ill. The last 2 times we did a round G was fine through them followed by days and days of seizures. We added a probiotic in hopes that it would help the diet continue to work while we did this round of antibiotics. We are 2 1/2 months seizure free right now and hoping and praying that the new medicine can handle antibiotics as well.

We started the antibiotics Friday morning. Then I made a mistake and gave him the wrong dose of one of his medications (UGH! Hello Mommy guilt!). When Chuck got home Friday night he thought Gabriel seemed really out of it (I am with G for his daily up and downs so I don’t really notice subtle changes very well…but Daddy has good eyes for these things). I decided to run to Sonic for shakes while Gabriel slept on the couch. Around 8 Gabriel started vomiting, Chuck said he barely had to energy to let his body throw up 🙁 After several minutes Chuck called 911. By the time I got home, G was in better shape, they were giving him oxygen and getting ready to load into the ambulance. It was our regular crew of firefighter and first responders…we all commented that it was nice to see each other but good that it had been a long time.

They decided to admit Gabriel overnight to watch him, make sure he didn’t have any medication toxicity (sp) issues. We are pretty sure he will come home this morning. Please pray that we can remain seizure free through all of this and for years to come!

We are in the process of getting the hardwood floors in our home replaced. We had a garbage disposal debacle a few months ago, leaving our floors with quite a bit of damage. Our floors were prefinished, which required ALL of the hardwoods be torn out and replaced. We made the decision this time to go with individual boards that are finished after they were laid. This way we will only have small repairs if we have any water issues in the future.

I can’t help be see so many connections and correlations between our floors and Gabriel’s epilepsy battle. 1 big event, onset of seizures caused the need for a complete and total reset. It seems that the medications, diet, therapies, and 100’s of other small changes we have made in our lives have been carefully relaying each board of Gabriel’s health. We have sought to make wise choices and follow our doctors orders of making 1 change at a time (that way if a problem arises we can take 1 step back instead of starting from scratch) . We are still celebrating several weeks (I think 9 or 10) seizure free, but we are still far from where we want our boy to be. He is sleeping way too much and not eating enough. We think the lack of eating is being caused by constipation, a side effect of the diet. We started Miralax earlier this week and hope it will get things moving and his desire to eat will increase, so that he will have the energy he needs to be a 4 year old boy!

Doose comes with so many side complications other than seizure control. Our family is really excited to be participating in a fundraising event for an organization called Doose Syndrome Epilepsy Alliance. This group is very small, because only 1% of children with epilepsy have this form, but MIGHTY! This organization and it’s founder Heather Barnes Jackson, have given Chuck and I great amounts of wisdom, knowledge and support. Our family is trying to raise $500 for this year’s virtual walk fundraiser (there is a real run’/walk in Colorado Springs on June 8th). Please check out Gabriel’s page for the event (we left the live with epilepsy as the standard message because it explains doose so well. Thankfully a few of the details, such a job loss and helicopter rides are not true to our story but most of the others are our story). Thank you for considering supporting this charity.
http://doosesyndrome.givezooks.com/grassroots_fundraisers/gabriel-s-walk-for-doose

Gabriel has had 2 of regular(ish) sleep patterns! Waking up in the morning. Staying awake and playing until 2. Taking a 2 hour nap. Bed at 9. We’ll take it. He is doing so great in so many ways right now. He is playing on his own a little and becoming more conversational (as opposed to just reporting things).

It is always strange to me that Gabriel’s good days can be the hardest on me. He is doing SO well! It’s just hard that he isn’t able to do everything he used to do. I was cleaning and ran across one of his newborn picture, pictures from before Doose are always hard. They are reminder of that huge line drawn in our lives before/after Doose. Not trying to be a downer, just keeping it real. Having a child with special needs is hard, day to day hard…..filled with amazing blessings….but hard.

Whew! Oh my goodness….did I really get to type that title? 2 months! We have made it 2 months without a seizure! Relief is an understatement. It has been so nice to allow him some independence and feel a bit of freedom ourselves. I don’t feel like I have to drop whatever I am doing if he wants to go play in another room. I can finish up the whatever I am doing and let him go play.
We are so relieved that the seizures are at bay for now, but there is still a long way to go. He is not eating as much as he should, side effect of medication. He sleeps way too much and on very strange schedules. He can literally sleep through a noisy preschool classroom because he is so exhausted.

We talked to his doctor and for now Gabriel’s weight is fine, so we will talk with the dieticians for some ideas and stay the course. The wait and see portions of the doose journey are some of the hardest. It has proven fruitful in the past and at other times we have kicked ourselves for waiting too long to act. Please pray for discernment for us as we negotiate these new waters, pray also that Gabriel will eat. When he does eat and have energy he is doing so well. Especially interacting and having conversations. He runs shorts distances from one spot to another again. It is so hard to see my 4 year running with the motor control of a young toddler but then I remember…he’s running again and smiling the whole way.

My biggest joy right now is through all of this he is happy, he knows he is loved and he is closely attached to his Daddy and I. At the end of the day that is good news….and 2 months without seizures makes it even better. Hoping that I get to write a 3 month post in a few weeks.

(Insert deep male movie trailer voice)
In a world where Bar B Q causes real danger…….

Last night we met family at a local BBQ restaurant. My cousin and her husband were in town and it was a great time to catch up. We rarely go out to eat as a family, so this was a real treat. I was a little concerned about how Gabriel would behave. This was his first time in a sit down and order restaurant in over a year. He did remarkably well considering all of the amazing foods being passed back and forth. He made a salt, pepper and seasoning concoction on this plate, dipped his pizza and chocolate hearts in it (EEEWWW!) and chomped them down. At one point I caught his arm reaching across the table to dip his pizza in the BBQ sauce. Thankfully I caught it and told him that wasn’t safe for his body and took the pizza away…but that moment was scary. The instant of oh no! what if we mess this seizure free streak up.

It is so nice not being on edge all the time, but the last few days he has not been eating enough and doesn’t have enough energy. He has tripped over things and fallen down several times because his reflexes are so slow. His sleeping patterns are bonkers. He is still sleeping a lot during the day but then is awake in the evening and into the night. It seems like we are constantly adjusting to his changing physical, mental and emotional needs. Logically I don’t want my 4 year old awake and playing at 11:00 p.m. at night but if his body has not let him be a kid that day, I try to sit down with him, and enjoy the moment.

A friend shared this amazing song about parenting special needs kids and I had to pass it along!
https://www.youtube.com/watch?v=B9RZ4V34WhY