500 mg

I have not seen any seizure activity since we began weaning Jacob from his valproic acid (Depakene) on September 7th. He was taking 350 mg twice daily and is now taking 250 mg twice daily. Since I have no idea at which point his dose will no longer be therapeutic (according to levels in his blood), I have been as vigilant as ever. As much as I would give for him to be drug-free, I have no tolerance for seizures. I believe that when Jacob started valproic acid in February 2010 he was taking 250 mg twice daily or 5 mL of syrup but I saw seizure activity and his dose was increased twice more to 6 mL and then 7 mL, his dosage for nearly a year and a half. Withdrawal can actually produce seizures which is why it has to be weaned slowly. Dr. B would NEVER recommend weaning unless he believed that Jacob had a chance of being seizure-free. It is the impossible dream but Jacob has beaten the odds before, early on, when Dr. B didn't think that ACTH would work for Jacob's Infantile Spasms because brain malformation was the known cause or that Constraint Therapy would be effective because Jacob was born without a motor cortex in the left hemisphere of his brain. If Jacob is destined to live with epilepsy? We are living the dream right now. He is thriving. He is fulfilling his potential, whatever that may be. But I will be devastated if I ever see another seizure.

Sunday

This morning, Matthew and Jacob delivered a small bouquet of flowers to our local fire department.

This afternoon was the second week of Special Olympics Young Athletes.

Wean

Dr. B asked, "Are you feeling brave?" We have begun our seven-week wean of Jacob's seizure medication. If he has a seizure during this time, he will remain on his medication. Are you feeling brave? I was. I am. I believe. I believe in all that we have done. Be brave. This is it. Now breathe.

Young Athletes

Please indulge in a piece of courage, humanity, dignity, equality, and kindness.

Bubbles

Good times in Seattle!

What Is It?

Something is following me around the house on my day off while Matthew and Jacob are at school. What is it? Leave me alone. I need to pick up the house. I have packing to do which means I have laundry to do. But I do laundry every day. I have dinner to prepare. Yes, I am cooking chicken at 10 am so I will have dinner ready at 5:30 pm. Matt is leaving for a Patriots pre-season game at 3 pm which means we have no chef tonight and I invited Grammy to have dinner with us. I am packing for our trip to Seattle to visit Uncle Jeff, Uncle Chris, Auntie Dianne, Auntie Allie, Uncle Lyle, and Cousin Cole. Matthew and Jacob on an airplane... I apologize in advance if you are seated in front of us or anywhere on the plane. So what is following me? My conscience? Nope, that's in my bag of Pirate Booty. My behind? Well, yah... Pirate Booty is NOT a diet food. Oh, I know! It's my piece of mind! It wants to watch TV and read a magazine and smoke cigarettes and drink coffee. Well, why didn't you just say so! The chicken is done and we aren't leaving until Saturday. I can pick up while I watch TV. And really the laundry machine does the laundry. I did the dishes last night, well actually, the dishwasher did them. And I managed to take a shower this morning before Matt left for work. So we're good. I love my day off!

Words

xhumee (excuse me)
raul (crawl)
coot (scoot)
behpeh (Betsy)
hie (hide)
baa (bath)
wauwah (water)
bee (beach)
whim (swim)
toe (toast)
weeooweeoo (fire engine/police car)
mihl (milk)
tay (stay)
boe (boat)
pooh (pool)
hoe (hose)
cow (couch)
moo/cow (cow)
tsih (sip)
cat
daw (dog)
beh (bed)
paeya (pear)
yehyoe (yellow)
boo (blue)
ayee geem (ice cream)
djew (juice)
trwau (straw)
mooh/beepbeep (move)

The Gift

Matthew said his bedroom was creepy. He was waking with nightmares about bad llamas, coyotes, and a monster with green eyes looking at him from behind the closet door or under Jacob's crib. For a few months, he would join us in bed, on the couch, or I would tuck him in to the love seat. Sleep interrupted. Since Matthew was born... and then Jacob... there has been nursing, gas, vomit, explosive crap, teething, breathing, seizing, ear infections, more milky please, urination, constipation, lost my binky, snake shadows, scary noises, coughing, foot in my butt, and general anxiety.

Matt and I decided then to convert Matthew's toddler bed into a "big boy" bed, literally, because it is a full size bed. And magically his room became awesomest. And it was not creepy. But he wanted Mommy to sleep with him. Matthew has been sleeping on his own since he was 9 months old until lately. Jacob slept in his crib for a month here, a week there.

I parent by instinct, by what I feel in my bones and in my gut. That's how I know when I've done something wrong or I've done something right. And my bones and my gut have begun sleeping in the full size bed - after I have laid in my king size bed until Jacob falls asleep.

So now to the gift. I was thinking about what makes Jacob so special. I think it is the way he loves. He loves everybody but not in a universal sense. He understands his relationship to others and the purpose they serve in his life and he loves each and every one of them in a very unique way. He loves his therapists for example and his teachers and his family and his doctors. And so when it is time to go to sleep and he looks at me and says nigh nigh and kisses me behind his binky my bones and my gut feel that he loves me like no one else.

The crib will continue to double as a bouncy house.