Today has been kind of tough, Gabriel had 4 big seizures over night and now seems to have started his monthly round of tons of stacked little seizures. Super Boo. I was thinking that we may have escaped the multiple seizure days this month….literally this morning I told my friend that I thought maybe the new medication he was on had kept them away.  So for the 4th month in a row we have had tons of seizures during a full moon.  What craziness!  I feel like we are secret werewolves who have to dread the full moon now 🙂

On the up side, Chuck has been able to home a lot the last week. It has been really great to have some family time.  We have gone to Toys-R-Us, the library, seen Christmas light and train displays together. Seemingly small things but for our busy family the simple things have been wonderful. Santa came to our house on the 26th because he needed time to finish assembling a drum set.  Yes, we are officially certifiable! 🙂

What kid wouldn’t love to come down Christmas morning to find this?

He was jamming right away.

He got a cool megaphone that he calls his “all aboard”.

He is wearing a scarf that was wrapped around one of my gifts. He loves the scarf and has worn it several times just for fun since.  He has also loved playing with his new garbage truck, helicopter and ambulance.

In other news Gabriel has been eating things other than pizza! Woo hoo!  He has started eating some new chocolate cookies, cheese and pickles and puffs again.  It has been nice to cook things other than only pizza.

We hope that everyone is having a great holiday season!

We had Gabriel’s latest neurology appointment on Wednesday. We are currently increasing the dose of his new benzo (type of med). A few weeks ago we changed from 1 benzo to another and while he was on higher dooses during the change he did really well. Had 6 or 7 days without seizures. Best days we have had in a very long time! We did the medicine change instead of weaning meds after his most recent EEG showed no change. Had the EEG showed some change we would have weaned medication but without any change we are unsure how much work the diet is doing. The change in meds seems to be going well. The doctor also referred us to a Behavioral Neuropsychologist (I think that is what the specialist is called) for an eval. Gabriel is exhibiting some behaviors that the neurologist thinks may indicate something called PDD (something on the autism spectrum). The neuro said it can take months to get into this specialist. Kind of overwhelming to think about, so we are focusing on treating the seizures and epilepsy right now. We can deal with any other diagnosis as they come.

In the mean time his physical and occupational therapies continue to go very well and he really enjoys them. We are also in the process of working with our local school district to continue Gabriel’s assesments and receive possible educational and developmental services.

One of the pastors at our church recently talked about Christmas being the time of year when light overcomes the darkness. That as with the winter soltice the darkest days are behind us, and that Christ coming to the world brings light and new life. We hopeful that maybe the darkest days are behind us….we are looking forward to more periods of good days and less seizures.

It has been a good week at our house. Very few seizures. An active, talkative boy ready to take on the world and good company!

Some awesome friends came and helped me cook for G! We set a record of over 30 pizza’s made and tons of ingredients measured!(this is a  picture from November’s cooking night that I never got posted).

I finally remembered the camera and took some pictures at therapy today. He loves physical and occupational therapy. The therapists do an amazing job of making him work really hard but still have tons of fun.  He did a lot of core/ balancing work this week. We are working on building up his balance and muscles so that they become second nature again.

He climbed over huge pillows (the jungle and the water)

He shot tons of baskets from the balance ball.

He loaded the medicine balls into “santa’s sack”

then pulled it down the hall to help Santa deliver the toys.

Then he strengthened his grip by swinging on the trapeze over the water (blue mat) into the jungle(colorful pillow).

In the last couple weeks we have gotten these AMAZING mailbox blessings! Anonymous gifts with sweet and simple notes attached! I hope, hope, hope, hope that the people mailing these thoughtful and generous gifts read the blog because I want to say THANK YOU!!!!!!!!!!!!!!! We are so tremendously blessed by your thoughtfulness. I have loved giving secret anonymous gifts to people in the past and only hope those I have tried to bless felt as amazing inside as we do.

It has been a whirlwind of craziness since we got back from John’s Hopkins including an eeg, new meds prescribed and way more seizures than we would have liked.  We just survived our 3rd round of 2-3 days worth of tons of seizures. We have seen this pattern 3 months in a row now….I realize this sounds totally crazy but each time it has been during a full moon….so with no other logically explanation…I am blaming it on that 🙂

I am going to have Chuck write a blog on the medical decisions we have made and why because he understands them better and can explain them.  I am excited to write a blog today with lots of pictures sharing the latest things G has been able to do.

Grandma Gaye and I got to take G through a local drive through Christmas light display…He loved the gingerbread house display……

and the train!

he had this look of awe the whole time!

A couple days later he got to ride on Christmas train with Nonna, Grandma and Daddy.  He was having lots of seizures and wasn’t able to communicate a whole lot during the train ride but talked about it a lot with Mommy after he got home.

Ready to board with Daddy.

I love this picture because he is holding both his ticket and “the little handle”. Almost every picture from the train ride has him holding on to this little chain. He excitedly told me “I pulled the little handle!”  He was convinced that by holding on the chain he was pulling the little handle and making the train go! 🙂 Sweet boy!

Just a photo I love!

So of course, after the great holiday light show and train ride, we had to get our own lighted train for the yard!

We hope everyone else is enjoying holiday experiences and traditions with their families and loved ones.