Thursday, July 29, 2010

Cousins - Take Two



















The Monkey in the Middle is cousin Cole Miller from San
Diego, California with Matthew, Jacob, and Auntie Allie.
(April, 2010)


These boys grow like weeds... (July, 2010)

Cousins



















Jacob, Matthew, Benjamin, and Sebastian Borgueta

Wednesday, July 28, 2010

Maybe

I have been stressed about time. When will Jacob's case be presented at Children's Hospital Boston? When will he be scheduled for surgery? How long will his recovery and rehabilitation take? How old will he be when this actually happens? And then I was thinking that maybe this is all for the best because the neurosurgeon discussed the honeymoon period where a drug seems to work and then gradually becomes ineffective. Jacob has done well since he was switched to Depakote a few months ago. But it took several increases in his dosage and now he is taking 7 ml twice a day. The maximum for his weight is 8 ml twice a day so we still have some room to adjust if necessary.... I have been seeing some strange eye movements again. Some rolling, some shifting. I am feeling like I've been here before because I have. And the last time it took over a month before we confirmed that he was having seizures again which led to the recommendation for neurosurgery. This surgery is not common. It is a life changing decision. So maybe we are meant to wait to see Jacob's seizures again to reaffirm that he needs this surgery so that we have no regrets or second thoughts. So we know we have done what is best for Jacob. So we wait together and I will not post about this again until it is time.

Monday, July 26, 2010

Short

Constraint Therapy II begins in 1 week!

Boston. TBA. Three children are presented each Tuesday and emergency cases take precedence.

Friday, July 23, 2010

Poopy-Face





























Matthew was nearly 22 months old when Jacob was born.


Jacob is nearly 22 months old now.


Jacob doesn't know but Matthew does.


Matthew is fiercely independent. I wonder why.

Toe Jam Puppet Band




Sunday, July 18, 2010

Midnight Crazy

Unravel at night. Knit myself back together in the morning. What will become of Jacob? What will become of Matthew? Fill the blog with images of beautiful children - happy and playful - to read about my own life, to feel a sense of peace, to remain hopeful. Pure joy. Pure agony. Anxiety about seizure-y behavior and neurosurgery, anxiety about the Early Intervention Model, anxiety about rehabilitation, anxiety about the "other" child who used to be the only child...

Why does he have to struggle? Why do I have to fight? Every day, all of the time? How does he love us all so much?

He doesn't know.

Be-Be

video

4-H Fair




Saturday, July 17, 2010

Read All About It

Children's Hospital Boston is ranked #1 for neurology and neurosurgery by U.S. News and World Report.

Please present Jacob's case this Tuesday...

Wednesday, July 14, 2010

Free-Write

I think about how I often go backwards and forwards in my mind from the beginning to the end and then back to the beginning. It's not so much about dwelling on the past - not at all. It's more about being able to recognize how far we've come. I feel like Jacob is stronger every day and I am soooo thankful that he understands EVERYTHING. Just him being able to follow simple directions makes therapy and daily living that much easier. When I am trying to get him to repeat consonant sounds I can ask him to look at mommy and he does. I can ask him to find his shoes or the milk. He kisses us ALL of the time and calls me Mama about a hundred times a day and just when I think I don't want to hear Mama one more time I remember that just a few months ago he didn't call me anything.

Tuesday, July 13, 2010

Big Beautiful Boys

Last Summer...



This Summer...

Friday, July 9, 2010

The Itsy Bitsy Spider

Jacob will be scheduled to be presented at the Epilepsy Surgery "conference" either the 20th or the 27th. We will be called about the consensus of the team afterwards.

Today was Jacob's second half-day of daycare. He was very interested in the other children and enjoyed circle time. His occupational therapist attended for an hour and said that Jacob was pleasantly surprised to find that they knew the same songs as him! His teacher said that he tries so hard and he blew her kisses as we were leaving. He did however fall with four adults in the room. I have been working on Jacob's eligibility to have a "one-on-one" with him to be his eyes and anticipate risks for falling such as books or toys on the floor or legs of tables and chairs. I also want him to have full reign of the playground which is particularly dangerous for him if he is not closely monitored - more so than what would be expected of his teachers. Even so, I am very happy with his experience so far. And I never did cry.

In the meantime, Matthew and I spent nearly three hours at the beach running and jumping in the waves, visiting the Save the Bay Exploration Center, going down the water slide, and enjoying a Del's Lemonade on the playground.

And now... two boys are sound asleep. Happy Friday!

Wednesday, July 7, 2010

Melting Away

Jacob has not been scheduled to be presented for epilepsy surgery at Children's Hospital Boston... Irritated. Annoyed. Disappointed.

Jacob is saying Mama all the time and is attempting to imitate other sounds after watching my mouth. He said "bebe" (baby) and "maah" (Matt) over the long weekend. He is also saying "bah" (bye) when prompted.

Matthew said "I thought about it but I didn't do it" after I asked him not to play with his fire engine in the hallway while Jacob was sleeping. He's 3 and a half years old!

Monday, July 5, 2010

At the Beach

Jacob went to the beach on Saturday for the first time since last year when he was only nine months old. He stomped in the wet sand and walked in the water and then turned to "run" from the waves.


Jacob and Grandma Christe at Easton's Beach.

Friday, July 2, 2010

Daycare

Jacob did well today and fell asleep on the way home.

Thursday, July 1, 2010

Jacob B.

Sunscreen. Check. Diapers and Wipes. Check. Toy Story Lunch Box. Ready. Crackers, Baked Beans, Noodles, Cookies, Juice Boxes, and Cheese. Ice Cream? And with a Sharpie marker I label his sundries "Jacob B." Tomorrow is Jacob's first half-day of daycare to prepare him for the fall when he will go five full-days a week. We have had the luxury of placing Jacob with our parents because they offered and he needed to be. However, Jacob will be two-years-old in the fall and needs the opportunity to use his social emotional skills as a developmental tool. But... tomorrow is Jacob's first half-day and although I will be spending quality time with Matthew, I will imagine Jacob at my side. I will not cry. Jacob is irresistible and will be well cared for but please Jacob... be safe tomorrow.