Time Travel

I remember when I was searching for information about infantile spasms and hemiparesis and perinatal stroke. I was not looking for babies. I was looking for adults.

I needed to know what to expect for Jacob.

I have gone through the stages of grief.

I have recognized that the past and the future are for time travelers.

I remember a year ago, Jacob was "quarantined" after his second pneumonia in preparation for his hemispherectomy surgery in December. And eleven months after surgery... Jacob remains seizure free and medication free.

His right hand is tight. Very tight. But I have found the perfect therapy for him. Clapping. I extend his wrist and say "open your fingers" and I watch as he extends his fingers. Then I bring his left hand to his right and CLAP! He LOVES to clap his hands. He LOVES to "run" and "jump". He LOVES to be tickled. He LOVES piggy-back rides.

If there is another more perfect Jacob in some alternate reality, I would not know him and I would have the time travelers wish him well. My Jacob is my reality. He is beyond statistics and beyond prognoses. He is becoming all that I ever wished he might have been.

A Thousand Words

Preschool

Halloween

Special Olympics Young Athletes

Milestone

Jacob is seizure-free and off of his anti-seizure medication. Disbelief. We NEVER missed a dose in a year and a half. The last vial of ACTH still resides in the refrigerator and I suppose the last bottle of valproic acid will remain on the counter top. We still have needles, syringes, gauze, and alcohol wipes in our cabinets. Never forget.

I often need to be reminded.

I was meaning to write a post titled "The Truth" because I have been feeling MISERABLE and OVERWHELMED for a few weeks. Why does everything always have to be so difficult? Jacob requires so much care and Matthew requires so much discipline. Ironically, Matthew is more difficult than Jacob. I will not apologize for or feel ashamed about how I have been feeling. My pity-party.

And then I am reminded as I give Jacob his acid-reflux medicine. I glance at the bottle of valproic acid and smile and set it aside.

"free"

Jacob is "free" years old. For his first day of preschool, I packed his Jacob backpack, given to us by Danielle and Jonathan (www.happybeingtrevy.com) prior to Jacob's surgery last December. All of our proverbial eggs were in that backpack in Boston and now... it is filled with diapers and wipes, a snack, and a drink. Jacob is taking 2 mL of valproic acid twice daily. I am sure that he has been outside of the therapeutic range for a few weeks and we have not seen any seizure activity.

So hard to believe what this three-year-old has experienced. And yet, he is a happy little boy. But Matthew is not. He was sure that when we woke up Monday morning that Jacob would be bigger. We even measured how big Jacob would be in comparison now that he would be turning three. Matthew was certain that Jacob would be a big boy, not a baby anymore. He would even let Jacob ride in the police car with him. But to Matthew's disappointment, Jacob was still a baby to him. I feel sorry for Matthew because he is experiencing what I have chosen to move past.

Jacob is not a typical three-year-old.

Bittersweet

At 9 months old, he was unable to sit up without support or roll over. His right hand and foot were clenched. I religiously practiced all of the prescribed stretches and exercises and over time, Jacob's core strengthened and he was able to sit up independently. He was able to roll to one side. He was able to bear some weight on his elbows and through his shoulders. Over time, Jacob was able to roll from front to back and back to front. He became mobile within a small circumference around his body. Over time, he figured out how to scoot and expanded into a linear environment where he could do more than just reach, he could explore. Over time, he was able to pull himself up and move from side to side. Over time, he was able to harness the power of his legs and take his first tentative steps. He became fearless. Over time, he replaced sounds and gestures with signs and then with words. After nearly 2.1/2 years, Jacob is aging out of Early Intervention.

I am sentimental. Early Intervention has been with us since the beginning because really, Jacob's life with us before Infantile Spasms is a faint memory. Except for the lobster costume I made him wear for Halloween when he was not even a month old. I do not transition well. I do not say goodbye. If we weren't going to visit Jacob's new school this morning, I would have thrown myself down the front steps screaming "You can't leave me now!". Oh well. Next time:)

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).

IEP

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.

Montage

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