Friday, December 9, 2011
Thursday, December 1, 2011
Saturday, November 26, 2011
Monday, November 7, 2011
Wednesday, October 19, 2011
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.
Tuesday, October 11, 2011
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.
Tuesday, October 4, 2011
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:)
Wednesday, September 28, 2011
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
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
Saturday, September 17, 2011
Sunday, September 11, 2011
Wednesday, September 7, 2011
Tuesday, September 6, 2011
Friday, August 19, 2011
Thursday, August 11, 2011
Tuesday, August 9, 2011
weeooweeoo (fire engine/police car)
ayee geem (ice cream)
Wednesday, August 3, 2011
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.
Thursday, July 28, 2011
Friday, July 22, 2011
Wednesday, July 20, 2011
Friday, July 15, 2011
A few of the other mamma bears and papa bear(s) devoured the bunny "foundation" and have been empowered to begin the work of fulfilling the promise to the other deserving children. The work? Mission iPossible.
Thursday, July 14, 2011
He is also saying kih (kick) and knee and albow (elbow) and wau (walk).
While Matthew has swimming lessons at the YMCA, Jacob and I are in the Parent/Child Water Adjustment Class. They both love the water. This week I bought a plastic pool to save me this summer. Six feet in diameter with about four inches of water and a dippy little slide makes two boys very happy. Matthew and Jacob were supposed to attend summer camp twice a week while I ate Pirate Booty all day. But Jacob cannot attend with his fractured foot and unwieldy boot cast so we share the Pirate Booty. After dropping Matthew off this week, Jacob was in his car seat saying brahbruh, brahbruh. Matthew's name is Brother to Jacob. He was already missing his brother before leaving the parking lot:(
Thursday, July 7, 2011
Safety will be the greatest piece of Jacob's transition puzzle into the public schools this fall.
Jacob scored lowest in gross and fine motor skills as well as cognitive skills (which are determined in part by Jacob's expressive communication and fine motor scores), followed by expressive communication, receptive communication, and adaptive skills. Jacob's social emotional skills are not delayed.
two, free, fie, tsi, ay, nie
Jacob was counting this morning! Delayed? Developing!
Saturday, July 2, 2011
Tuesday, June 28, 2011
Like EVERYTHING else in Matthew's world, potty-training was a battle. He was interested in the potty before he turned 2 years old but it wasn't until last summer when he was 3 and-a-half that I finally told him I wasn't going to diaper him anymore, except at night but those diapers were different because we called them night-night diapers. Those diapers faded away within a few months when he was dry through the night but we've probably had about a dozen accidents since then. Matthew told me once that he must have been so sweaty that the bed got wet and another time he said he woke up and somehow water had spilled on his pajamas. Hey I just change the sheets and put him back in bed. No questions asked. As long as he isn't peeing all over the house or on the front lawn...
Sunday, June 26, 2011
Thursday, June 23, 2011
My last day was Matthew's first day at Jacob's school. Both boys will be going there 2 days a week through the summer and 5 days a week beginning in September. Auntie Mary, who has been Jacob's "playground assistant", said that Matthew and Jacob were holding hands today through the gate that separates the toddlers and infants from the pre-school children.
I'm still sad about Miss Edie, but her classroom is now filled with... babies. Jacob is not a baby anymore and he is doing really well in his new classroom. His social emotional development is far more advanced than mine.
Matthew also did really well today:)
Wednesday, June 22, 2011
Friday, June 17, 2011
Wednesday, June 15, 2011
Tuesday, June 14, 2011
Sunday, June 12, 2011
Wednesday, June 8, 2011
Jacob figured out that if he sat in the middle of the two seats of Matthew's John Deere Gator, that he could press the pedal with his left foot. He cannot steer however so Mommy and Daddy walk alongside while he drives. His new obsession in stark contrast to "shuvoh." I liked shovel better.
He also drives the small tractor, which I prefer because it actually has greater therapeutic value. The pedal is on the right so he has to apply pressure with his right foot to propel the tractor. It took him about a week to be able to do this on his own. Every time he drives, he holds on with two hands. I love watching him open his hand and grasp his fingers and thumb around the steering wheel.
He is also learning how to climb on and off of the Gator by himself using two hands.
STOP is our next lesson.
Monday, May 30, 2011
Sunday, May 22, 2011
Monday, May 16, 2011
Friday, May 6, 2011
Friday, April 29, 2011
Thursday, April 28, 2011
Friday, April 22, 2011
Wednesday, April 20, 2011
Tuesday, April 19, 2011
Thursday, April 14, 2011
Monday, April 4, 2011
Wednesday, March 30, 2011
Saturday, March 26, 2011
Thursday, March 24, 2011
Wednesday, March 23, 2011
Saturday, March 19, 2011
Tuesday, March 15, 2011
Jacob also had a string of ear infections from when he was about 12 months old but he was only one shy of tubes in his ears. He started daycare in a preschool this year and after a few weeks, he had a cold that developed into his first pneumonia. And his second pneumonia developed a few weeks after when he had returned to daycare. And his third a fourth pneumonias developed after he returned to daycare following neurosurgery. Exposure to other children however explains how but not why. So we are again looking for answers and I hope that he is just one of those children who grows out of being sick all of the time.
Next week, Jacob is scheduled to have a sweat test to rule out Cystic Fibrosis. It is an unlikely possibility, but my sister found that she was a carrier for the gene involved so I felt that for my own peace of mind I needed to know that Jacob is unaffected. We also have an appointment with a pulmonary specialist at Hasbro at which I will request a swallow test to be sure that Jacob is not aspirating, or swallowing down the wrong pipe - a possibility given his right hemiparesis. Another possibility is that his asthma treatment plan needs to be reassessed. Hopefully we will have some answers within the next few weeks.
Apart from the antibiotics and breathing treatments, Jacob is still flourishing. Constraint Therapy III will be over in three days and I am excited to see his post-therapy evaluation.
And he has finally said "o-pah".
Wednesday, March 9, 2011
---------------------WARNINGS AND PRECAUTIONS----------------
· Do not administer FluMist to children [less than] 24 months of age because of increased risk of hospitalization and wheezing observed in clinical trials.
· FluMist should not be administered to any individuals with asthma or children [less than] 5 years of age with recurrent wheezing because of the potential for increased risk of wheezing post vaccination.
Dear Sir or Madam,
My son Jacob received the FLUMIST vaccine last September. He was 23 months old and had a brief history of wheezing. Within a few weeks, he developed cold-like symptoms and was prescribed an inhaler. Shortly after, he was admitted to the hospital with pneumonia and stayed for about five days. After finishing a course of antibiotics at home, he developed pneumonia again for which he was hospitalized and treated with antibiotics. He had attended daycare in the interim between pneumonia infections, so after the second infection, I pulled him from daycare because he was scheduled to have neurosurgery in December. For six weeks prior to surgery and about 4 weeks after, Jacob remained healthy. Then he began to develop cold-like symptoms again. He returned to daycare and within a week he was diagnosed with a mild strep throat infection. After finishing another course of antibiotics, Jacob was again diagnosed with pneumonia but because we had caught it early, he was able to go home with us and resume antibiotics. Shortly after this course of antibiotics was finished, he was admitted again to the hospital with pneumonia. After just finishing another course of antibiotics, Jacob has now been diagnosed with an ear infection and is on antibiotics again.
I have read the information online about the vaccine but I have a few specific questions that I could not find. Is it understood exactly what about the vaccine or the body’s response to the vaccine that might cause respiratory distress or infection? Could it be that Jacob may have been exposed to influenza virus strains at daycare that are included in the vaccine and that when his body goes to mount a response, his immune system in effect attacks his lungs? Is there something about the vaccine or the body’s response to it that would leave his lungs “compromised”?
The first response that was sent included the same product information that I had already read so I sent a follow up email and this was the response...
Our policy is to answer complex medical questions for health care providers. We are able to discuss very complex questions with doctors, nurses or pharmacists who have the knowledge to understand scientific literature and know the complete medical picture of the patient.
Monday, March 7, 2011
Sunday, March 6, 2011
Friday, March 4, 2011
Wednesday, March 2, 2011
Saturday, February 26, 2011
Friday, February 25, 2011
Monday, February 21, 2011
Saturday, February 19, 2011
One more thought... I am upset and angry about all of this. I have taken Jacob to the doctor twelve times since October. He has been diagnosed with pneumonia four times and has been hospitalized three times. I know when Jacob is sick just like I knew when he was having seizures. I dedicated a year and a half of my life to annihilating his seizures and even though pneumonia has eluded me, I will kick its ass too. If only it was that "easy".
Monday, February 14, 2011
Wednesday, February 9, 2011
Saturday, February 5, 2011
Friday, February 4, 2011
Monday, January 31, 2011
Thursday, January 27, 2011
Friday, January 21, 2011
Wednesday, January 19, 2011
Saturday, January 15, 2011
Monday, January 10, 2011
Sunday, January 9, 2011
Work is good for me. And daycare is good for Jacob. But he is... lovely.
Friday, January 7, 2011
Wednesday, January 5, 2011
Tuesday, January 4, 2011
Monday, January 3, 2011
I called this morning to determine if my son Jacob was eligible for "physical therapy following admission" and learned that he was not because he would receive rehabilitation services from Hasbro Children's Hospital rather than Children's Hospital Boston where he underwent a left functional hemispherectomy on December 22, 2010. I would like a supervisor to please put in writing why rehabilitation services are not covered 100% simply because I am choosing a children's hospital closer to home. The services provided would be the same, as Jacob's prescription is for 3 hours per week over the course of a month. Hasbro Children's Hospital does not perform Epilepsy Surgery, otherwise we would have gone there. Again, please have a supervisor put an explanation in writing. Thank you.