The Dentist

Matthew had his first dentist appointment yesterday and I nearly had a nervous breakdown because the hygienist "scolded" me about brushing Matthew's teeth. When Matthew turned 2 years old, Jacob was only 2 months old. My Nana bought him a motorized fire engine toothbrush for his birthday because we were having trouble brushing his teeth. We thought he would be inspired. When we watched the Goodnight Show on PBS Sprout we would sing the brusha-brusha-brusha-brusha-brush song with Star but we were still having trouble brushing his teeth. When Matthew brushed his own teeth, he would scrub the front, suck the water from the toothbrush, eat the toothpaste, and gargle and choke on his cup of water. Once Jacob was sick... we definitely neglected Matthew's teeth which is why I finally made the appointment. No cavities and no plaque. Just some tartar. We brushed last night and this morning with some resistance... The Binky Fairy is next!

Take these broken wings and learn to fly...

As I follow other blogs to understand pediatric stroke and epilepsy surgery, I am reassured about our decision to pursue surgical intervention. Jacob's left hemisphere is junk. Yes, I said it. The condition of his left hemisphere makes him an ideal surgical candidate. Jacob will need to see a pediatric opthamologist to confirm a suspected diagnosis of hemianopsia or split vision. Each hemisphere of the brain controls one half of each eye. Without a functional left hemisphere, the right half of each eye is blind. Jacob will also need to be evaluated by an epileptologist. Finally, his case will be presented to the neurosurgical team and pending approval, surgery will be scheduled.

MAMA

Jacob imitated "mama" three different times today! Not "ma" or "ma...ma" but "mama".

Neurosurgical Consult

Jacob is a candidate for neurosurgery - a functional hemispherectomy. Basically, the damaged left hemisphere of Jacob's brain would be disconnected from the functioning right hemisphere. Scary. We are going to proceed with a second opinion after discussing this with his pediatric neurologist. In preparation for this appointment, I had also ordered Jacob's medical records from when he was born and learned that the umbilical cord had been wrapped around his neck and his APGAR scores for skin tone at 1 minute and five minutes were 0 and 1, which means he was grayish blue. He wasn't described as pink until about an hour after he was born. One door opens, another closes. I always wanted to know when Jacob had his stroke and thought it was in utero but it may have been at birth. But no Grammy, you were right. It doesn't really matter.

Turning Point

Tomorrow morning we will bring Jacob to see a pediatric neurosurgeon at Boston Children's Hospital for a consultation appointment. Jacob's pediatric neurologist believes that without surgery, Jacob will continue to have seizures. We need to understand how living with seizures will impact Jacob's quality of life versus surgical intervention. Jacob's seizures seem to be controlled with medication but he also seems to be lethargic. Yesterday he fell asleep while riding in a shopping car cart. But Jacob has made great progress developmentally. We have a lot to consider and are hoping that this appointment will at least give us more information to decide if surgery is an option. To be continued...

The Life and Times of Captain Matthew and Mr. Jacob

Jacob's Crib

Jacob held on tight as I was carrying him to bed last night. If I moved a muscle towards the crib, he held on tighter. Then I said "It's time for night-night in Jacob's bed. Give Mommy a kiss". Jacob turned his head with his binky to my face, I kissed him goodnight and he laid in his bed. No tears this time. He woke up twice when Matthew called me to rock him and when Matthew called me for more milk but he fell back asleep both times. I am looking forward to when Jacob calls me now.

Sleep-Over

When Jacob was born, he slept beside us in a basinette for a few weeks but he was unable to settle himself back to sleep after nursing so we moved him into our bed. Every night he would fall asleep next to us and when we were bold enough, we would move him to his crib and when he awoke, we would move him back to our bed. And between ear infections and teething and seizures, we stopped moving Jacob to his crib and have slept beside him for 19 months now. Yesterday we decided to move Jacob's crib into Matthew's room as we had always intended and put Jacob to bed in his crib. Matthew said it was like a sleep-over. Jacob cried for 9 minutes and then.... he was asleep. A year ago today, we brought Jacob home from Hasbro Children's Hospital. Our journey certainly is not over but... it is time to move along. Matthew is afraid of monsters anyways and appreciates the company.

Wherever they are sleeping, mothers have their children in mind.

Happy Mother's Day Mom.

A Star is Born!

Jacob is pictured in the following links about the Constraint Therapy Program.


http://www.lifespan.org/hch/services/rehab/constraint/about/


http://www.lifespan.org/hch/services/rehab/constraint/schedule.htm

Language

At our Hanen class this evening, I discussed Jacob's speech with his therapist. I was concerned because Jacob has a slight paralysis of the right side of his face and I wondered how this might affect his ability to make sounds. His therapist said that she was encouraged by the way that he is able to make clear and crisp consonant sounds and that he is able to move his tongue all around his mouth. I'm pretty sure he has said the words brother (bwahba), ball (bau), and more (moaw) and he has said ma-ma and da-da. The greatest sound he makes of course is his laughter when he's being tickled, when he's being chased, and when he's being naughty. The chasing is the funniest thing because when he isn't scooting, I'm usually holding his right hand but chasing him from behind.