Saturday, February 26, 2011


Our video camera battery is dead, otherwise I would have posted a video of Jacob attempting to replace the toilet paper roll. To me this is significant because I have never seen him truly maintain his grasp on an object independently. His hand is weak but he has some real power in his arm. I heart Constraint Therapy even though I have been tempted to remove the cast at times. Guilt. Have I gone too far, expecting too much of this small person who is still dealing with the effects of pneumonia. Laziness. Jacob did not volunteer for Constraint Therapy. We have to consider which of his life activities we need to do for him and which we need to do with him. We have to maintain his two-year-old sense of dignity. I will be sure to post videos this week.

Friday, February 25, 2011

Where will we go from here?

While driving home from our night out at the Tropical Pirate Bar, Matt and I were discussing our plans for Jacob. Linda, his occupational therapist from Hasbro, commented that Jacob's wrist seemed a lot tighter than when she had worked with him a year ago. Jacob's Early Intervention therapist had ordered a brace for him to wear in order to extend his wrist while extending his fingers. Try this at home... Let your wrist fall limp and then bring it up while letting your hand remain limp. Your fingers should have curled inwards. Jacob's brace is supposed to stretch the muscles of the upper side of the forearm to help him lift his wrist AND keep his fingers extended. But I have been lazy about putting the brace on him. So now he wears it at daycare during naptime, in between his Constraint Therapy sessions. This weekend, I'll start putting it on at night as well. If at the end of Constraint Therapy, his wrist is still as tight, then I will be bringing him back to see his orthopedist. I hate to say it but if stretching and exercise don't do it, I would consider alternatives. I am not on a quest to make him perfect. He already is. I am all about removing barriers. He has exceeded everyone's expectations from when we were given a prognosis at 7 months old. As long as he has the will to do and to be, I cannot allow his anatomy to fail him, like a broken half of a brain that is now inconsequential.

Monday, February 21, 2011

Constraint Therapy III Day 1

Since most of Jacob's therapy will happen at daycare, there won't be a daily video of his progress.

Jacob was discharged from the hospital yesterday morning but we still decided to proceed with therapy today. His recurrent pneumonia was likely brought on by his asthma. We have to maintain his breathing treatments even when he doesn't seem very sick because one thing that I've learned about Jacob is that he is not what he seems. Anyways, I will post Jacob's pre- and post-evaluations and video that we take at home when he is not in therapy.

Saturday, February 19, 2011


This boy made it through 6 hours of brain surgery without complication. But once he catches a cold, he catches pneumonia. Jacob is in Newport Hospital again. He was restless in his sleep last night and woke up around 1:30 am with a fever, 102.4. He was breathing quick and heavy and had been grunting, which I thought was him trying to poop but I think he was just having trouble breathing. Anyways, I got up and brought him to the ER because I knew he needed to be on antibiotics sooner than later. His overall condition is fine however. He has not spiked another fever since he was admitted and has not needed to be on oxygen. Just antibiotics and breathing treatments every 4 hours. His chest sounds pretty junky. Hopefully we will be discharged tomorrow with clear instructions about how to proceed with his care...

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

A Normal Life

Jacob goes to daycare tomorrow with some congestion and a diaper rash. He has fallen several times since he has been home with me for the past week. Twice he walked into the doorway leaving an egg on his forehead and twice I watched as his right leg or knee went out from under him and he fell forward. He now has bruises on his forehead, his chest, and his right knee. He is refusing to nap unless he is exhausted so I think fatigue has something to do with him falling as well as his right visual field loss because I have not seen any other neurological signs. In fact, he is pushing up on us to stand in our bed which he has never attempted before because our bodies don't offer much height or support for him to stand and the bed is not a sturdy surface. This is great because he is working on standing from a sitting position on the floor without pulling up during PT. Speech is great too. He is saying goot (good) and whoa and mamme (grammy). For sure, if you are not trained in Jacob-speak, you wouldn't know what he was saying some of the time but you would know that he was trying to say something. Jacob's incision is completely healed now and we are getting ready for Constraint Therapy III to begin next Monday. I feel like this will be the last time because it is so expensive and as Jacob gets older I can't use the "he won't remember" excuse. The therapy is not painful or anything and he adapts without his left hand which is the point but it restricts his overall activity. I guess it will all depend on the gains he makes this time around. A month of therapy for a lifetime of functional use is definitely worth missing swimming lessons or letting Mommy and Daddy help with eating and drinking. We are so close to having a normal life, not without therapy, but without having to choose extreme or radical or experimental measures. Last night we booked our plane tickets for August to see Uncle Jeff and Uncle Chris and Auntie Dianne in Seattle and Auntie Allie, Uncle Lyle, and Cousin Cole from San Diego are going to join us there. A normal life - making memories for our own children and establishing a new sense of family because we are adults now even though we remember eachother as children.

Wednesday, February 9, 2011

The Story of Pneumonia

No fever. Coughing. Crackling. Raw bumbum. Great sense of humor. Jacob's speech is still improving. I love to hear him "label" things without prompting. We have always been able to communicate with him but his own use of words gives him his own intentions, personality, character, rather than what we would assume those things to mean for him. One word at a time.

Saturday, February 5, 2011

Guess What

Pneumonia again. Seriously.

Friday, February 4, 2011