8:12 P.M. Thursday, November 17, 2016…Date STAMP…the last dose of Felbamate given to Gabriel. A few weeks earlier, 9 milliliters had gone into his body, just like everyday for almost 3 years. On Thursday night 1 mL went in. The last dose of the little pink liquid that saved our boys life. *See Footnote

I am typing this Sunday morning and we have not seen any seizure activity YET. Yet…Rrrrgh…that one little word can hold so much…so much hope, so much fear, so much light or darkness.

During this medicine wean I have kept the image of a mountaineer repelling down a cliff. Picturing ourselves beginning the descent, 1/3 of the way down, 1/2 way down, 2/3 of the way down 3/4 of the way down. Friday evening at 8:00 PM (medicine time)it felt like we had landed. Not only landed, but had firm footing, had unhooked our repelling gear, and were beginning to pack it up for the next leg of our adventure with Doose. The phrase “The Eagle Has Landed”, famously uttered by Neil Armstrong when humans first landed on the moon decades ago, kept running through my mind.

The date of the first moon landing is burned into my memory-July 20th. July 20th was my Dad’s birthday. It seemed like every year on his birthday my dad would talk about the moon landing, Neil Armstrong and Buzz Aldrin. It seems fitting that the iconic phrase was ringing through my head as our family completed a BIG step on our own dream mission. I find myself unendingly thankful for the countless people who have supported us, cared for us, prayed with us, fed us, laughed and cried with us over the years! I find myself typing this wishing for the 10 millionth time, as I have so many other events this last year, that Dad was here to see this. He would be so happy for G (and us). One of the last conversations I had with my Dad was about how GOOD G was doing and how glad he was for that. I don’t know how eternity works but I hope somehow Dad is getting to see or be a part of this…I wonder of the ARMSTRONG phase in my mind is God’s way of connecting us.

Anyway for now…our family is on solid ground! There are more mountains to climb. In general Gabriel is about 2 years behind developmentally. In some areas more, in some less. Our job for now is to continue to support, empower and advocate for him as he navigates life.  As we step into the next phase I find comfort, hope and strength in Psalm 121 ,”I lift my eyes until the hills, where does my help come from?  My Help comes from the LORD, maker of heaven and earth”

FOOTNOTE *I always waver on whether or not it really SAVED his life….it sounds so dramatic to phrase it that way….but it is true. Heartbreakingly true…there are children with Gabriel’s syndrome (and many others “related” to it), that the lack of seizure freedom and/or SUDEP (sudden unexpected death in epilepsy) ends their lives. There is also the cruel, yet ever present reality that the seizures can return any day. One of the families that has been a guiding light for us in our Doose journey is experiencing a recurrence of seizure after 4 years of seizure freedom. The seizures were most likely brought on by onset of puberty. Please PRAY for ZAKI and his family–they are WARRIORS in this battle!

We are 7 weeks into a 9 week medicine wean. So far….so GOOD! No seizures! Maybe I should qualify that…no seizures observed! It is possible things are happening in his brain that we aren’t seeing, however, everything on the outside is looking really good!

We have had minor emotional hiccups the last few weeks. Gabriel’s sensory issues have been more pronounced. He especially loves taking really long showers, he has more and more issues with food texture and he prefers to run around without clothes on. His emotional expression have been heightened.  Especially in weeks 2-4..Gabriel seems to get really upset about seemingly small things. Such as being truly upset about a fork being placed 2 inches further away than he thought it should be. It reminds me of the funny posts on facebook, where parents share things that make their 3 year olds have total meltdowns. Except, we aren’t 3 we are 7. (and not normal “7 year olds are emotional stuff”..literally like a 3 year old…throwing himself on the ground and wailing for extended periods of time). We have worked with his behavioral doctor and increased the amount of another drug he takes for mood regulation. That has helped tremendously in evening out his moods. This drug was originally prescribed to stop seizures but didn’t work. When we tried to wean it a couple years ago, it became clear that his brain has become reliant on it for mood regulation. I am sure we will work on different solutions or weans for this medication in the near future, but for now it is needed and enabling Gabriel to engage in the world!

I am so thankful for my background in child development, specifically early childhood education. It has helped me to remember that Gabriel has been on medication that has been controlling his brain since he was 3 years old. It has caused me to pause and realize…that there is a chance that Gabriel’s brain just needs to grow through some developmental stages because it never has.

During the last 7 weeks, we have seen Gabriel take some huge developmental steps. He is trying to use a fork and knife to cut his own food when eating! His default mode on things that are challenging has been “I’m not good at that” end of story he refuses to try. We are incredibly intentional to focus on effort not perfection, so this phrase was always so hard for me hear. I haven’t heard it much in the last several weeks 🙂 He will say he doesn’t want to do something still or avoid things that are hard but he is more willing to come back around and try! He is enjoying coloring and drawing as well. His teacher told us, that he could earn drawing time for focusing on his work. I couldn’t believe it. Last year he wouldn’t rarely pick up any writing utensil…crayon, marker,etc.

A couple days ago he told me wanted to carve pumpkins and that he needed a sharpie. His idea of carving pumpkins is drawing faces on them with sharpies! So cute…and much easier for his parents 🙂  Watching him draw the faces was delightful. He exhibited spatial and directional skills needed to place the eyes, nose and mouth appropriately, as well as the fine motor skills to create the shapes he desired.

He also seems more aware and engaged in the world around him. We went to the zoo this weekend and for the first time in years, he looked at the animals! He commented on what they were doing and asked questions! He has always enjoyed the zoo but it was more of an amusement park for him…we would go ride the train, the tram, the carousel and then go home.

I am daily reminded to celebrate what he is able to do and how far he has come.  It can be overwhelming to see how far he still has to come and frustrating when getting through “simple” tasks such as getting dressed continues to be a daily struggle.

So we have 2 more weeks until he is completely off Felbamate, then we will continue to watch diligently for any signs for months to come (honestly…I don’t think we will ever stop watching). I imagine there will be more EEG (brain wave tests). I am sure there will be many more doctors visits, many more specialists, more setbacks but most importantly many more successes and strides. For now it seems we have won the battle against the seizures but the fight for Gabriel’s quality of life continues. For years our hope was to stop the seizures, that life would go back to normal. The seizure stopped but “normal” didn’t come. Now we are getting off a brain altering chemical and hoping for more chances at “normal”. We are in a weird, but wonderful situation, one where there is no clear outcome but there is HOPE!

As always, thanks for following us, keeping up with us and especially for your continued prayers!