Wednesday, October 26, 2011


It's me. Mom and I have both been busy, but here we go!

Winter is here! Monday I was laying under our cherry tree watching the day go by with my auntie Lena. Today, it was definitely a perfect day to stay inside watching the snow flakes from my window. I had no desire to join sis in the snow...

We have had a great time with my auntie Lena and my cousins Robin and Filip. I got to go to Boulder and hang out, and another day we went to the Botanical Garden. I got lots of attention, and my favorite thing was to simply cuddle with Lena - on the couch or outside on the front porch. I love when the house is full of people!

School is going well. We went to the pumpkin patch the other day, and I had a great afternoon with my friends. I brought home a cute little pumpkin that Sarah and I have painted. We also have made many fall paintings using colorful leaves.

Last week, it was my turn to bring snacks to school. They are all curious about my g-tube, and would love to try mine! We decided to make smoothies, so they all could "drink their snack", me with my g-tube, and my buddies with a straw. It sure was a hit!

This week, we got word that I don't need my bi-pap any longer! My sleep apnea and obstruction have improved!!! Now, I am starting to get used to breathe with my nasal cannula again...we'll see how it goes! You should have seen mom's face when she got off the phone with the news!

Today, I surprised my family again! I just felt that it was time to pick up my high fives again! Do you remember those? It was my way of saying hi. Today, I did 50 of them in therapy - just like that :- Due to the snowy day, both mom and dad were home for the occasion. They sure were happy. Mom even had happy tears when she watched my little high five movie several times today...she didn't think I saw her, but I did :-

We finally got our hands on that non-FDA approved seizure medication that the European manufacturer decided to stop delivering to the US...we now have a big supply at home. The plan is that I should slowly start on it next week, and at the same time, we're removing 3 (!) of my seizure medications. Are we scared? Are we really scared? Yes, we are, but we will simply never stop trying. Today, mom looked down in my medication box, and we realized that we're back to my seizure medications where we were 2 years ago...It means taking risks, but if we don't, we will never know...

Wish me luck that things continue to look up for me. Halloween is around the corner, and that is typically the time of the year when things go sour on the seizure end...but only time can tell what will happen next. That's what I tell mom.

Much love,


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