Wednesday, September 28, 2011

3 mL

Atop our little white bookshelf are pictures of our life. One picture caught my eye a few days ago. It was of Matthew wearing one of my hats backwards as he was crawling towards the camera with his big head, even bigger eyes, and his little body. Life was different before.

But everything is as it should be.

I am on edge about Jacob's medication. I forget to breathe. And I forget to believe while I measure the precise dose as if his life depends on every drop. Since September 7th... 7 mL to 3 mL twice daily.

I am also on edge about Jacob's transition from early intervention to special education. I do not transition well.

Jacob is over the top - combining two words frequently and sometimes three words and using new words like job, work, wih-woh (window), and pee-me (peenie).

Tuesday, September 20, 2011


Jacob's IEP will go into effect as of October 10th when he turns 3 and is eligible for special education services. The IEP team recommended placement in an integrated preschool program where fewer than 50% of the children have special needs. He will receive 1/2 hour a week of PT and OT in the classroom and 1/2 hour a week of each outside of the classroom. He will also receive two 1/2 hours a week of individual speech therapy and 1/2 hour of whole group speech therapy. And the special education teacher will be working with him for 1 hour a day on classroom routines and 1/2 hour a day on social skills. I am very happy with his placement and how thorough his EI team was in his transition report and how carefully his IEP team considered his needs as if they had been working with him all along. I almost began to sob when the PT said that one of her year goals for Jacob was basically to be able to keep pace with the other children. I had visions of him trying to run and being so far behind the other children trying to catch up. Very melodramatic visions I have. But anyways, the idea that he might be able to run alongside other children and maybe actually tag someone made me tear up.

When Dr. B asked me if I ever thought we would be where we are with Jacob, I told him no, that I thought we were all going to die. I don't know how many times I died in the last 2 years. So dramatic I know. But Jacob gives us new beginnings over and over again. He is more than the difference of his missing parts.

4 mL twice daily tomorrow night... uncharted territory... keep breathing with me.

Sunday, September 18, 2011


Copy and paste the following URL to see all of the photos and to order prints...
password: soya2011

Saturday, September 17, 2011

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, September 11, 2011


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.

Wednesday, September 7, 2011


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.