February decline

We wanted to express our gratitude for your amazing outpouring of love and concern.

We read every blog comment aloud to our children tonight and it brought such peace and warmth into the room. We tangibly feel of your love and concern and are so grateful for all the prayers that are offered in our behalf.

I know it came as a shock to hear that Jake is getting a shunt one day, to Jake is dying the next.

I wanted to fill in some of the holes.

And share some pictures. All are from Friday, March 5, before leaving the hospital.



Jake's speech has been slowly declining since December. We noticed the change, but it was so gradual that it was hard to pinpoint how exactly it was getting worse.

It started with word finding. Jake would want to say something, but could not bring the word down to his mouth or would use a different, sometimes related, word instead. We were able to crutch along though and figure out what he really meant to say.

As I wrote, his speech aphasia had us concerned before his January scan. When the doctor found some enhancing areas we knew what the problem was.



They operated on January 29 and took out all of the tissue they safely could, right up to the margin of his speech and motor area in the left hemisphere, but knew there were still cells remaining in the functional parts of his brain. The left hemisphere controls the right side of the body as well as speech. Those cells have continued to grow.

For the week right after surgery, Jake was doing well and seemed to be recovering. But then throughout the second week his difficulty with speech reappeared, as well as a new difficulty moving his right hand. At first it was just difficult for his fingers to grip. A few days later it was difficult for him to lift his right arm. A few days later his fingers lost more strength. A few days later his right arm could only lift to ninety degrees.



His right leg started to become heavy and harder to move. I remember on February 10 we walked home from the mall with Lauren's birthday crew and realized for the first time that I could hear his foot dragging as he walked. It wasn't completely clearing the ground as he stepped.

This was definitely concerning to us, especially as we had a family trip to Disneyland already planned. We called his doctor, and spoke to the nurse who gave him a steroid to alleviate what we thought was swelling. She also spoke with the doctor and he recommended scheduling the shunt surgery for the week we got back. They reasoned that with all of his past surgeries, Jake's chances for needing a shunt were increased and it would be better to get it done than let things get worse.

We were in CA from February 20-25 and Jake got on pretty well. We rented him a cart to drive around, but he was able to walk on his own. He had started to feed himself with his left hand, as his right hand couldn't grip the fork well enough and his right arm could not lift all the way up to his mouth.  His speech was difficult, but nothing noticeably alarming.



We had a wonderful trip. Truly a fun, entertaining, happy time. We all commented on how we seemed to leave our troubles behind us for the time we were gone.

We got home and rested. Jake was tired, as was expected after our big and busy days and that weekend he took things easy. He could walk and his right leg bore weight, but he had to concentrate to get it to go as he wanted.

He did start needing help with two handed tasks the last days of February. Putting on his shirt, opening a jar, brushing his teeth. His right hand and arm were becoming very inoperative.

The day before surgery, March 1, we spent several hours at the hospital. They did a CT scan to check for swelling, did his pre-op evaluation and we met with his surgeon. He evaluated Jake and still recommended going ahead with the shunt. He told us that there looked to be a spot on the right hemisphere, and asked if we'd like an MRI after surgery. Normally, with shunt placement they just use a CT scan and we immediately said yes to the MRI. Better to know what is there then spend a few weeks worrying about it.

So on Wednesday Jake walked himself in on his own power for surgery. His right arm by this time was very weak and he was almost not able to move his right hand. He hoped these symptoms would be alleviated, but when he woke up after the operation feeling the same as he felt before it was not a good sign. Jake was definitely discouraged.

He slept a lot that night and on Thursday morning he had the MRI. We talked and read while we waited for the scan. We talked about how there was probably something going on and wondered what, if anything, they could do about it.

Then they came in with the results.

I wrote enough about that in the last post.



We came home on Friday and Jacob's right side is very diminished. The fingers of his right hand cannot move on their own. His whole right arm hangs limp at his side. His right leg can drag along, but it requires all of his concentration to make sure his foot lifts as he takes a step. In addition, the right side of his face is more static, and even the right side of his mouth doesn't move to smile or talk like he wants it to. He is compensating for everything with his left side and has shown so much resilience and strength. I tend to think he can't do things, and then he goes and shows me that he can. He always likes to surprise people. He is tough.

These physical symptoms have come on so rapidly. We are grateful for that. Some people with this disease live with physical or mental or emotional deficits for months or years. Jacob has been whole, in body and thoughts for all but these recent days and we recognize now what a tremendous blessing that is. He has been able to care for himself until just recently, and with four young children, especially a baby turned two year old we are so grateful for that mercy.

His speech is difficult, but I am amazed how much I am able to still understand him. What he wants and needs and is trying to say. He can say many words, but making sure they are the right ones is the trick. He has a great mental capacity and works so creatively to use words, answer questions and gesture to help me know what he is saying. His intelligence is astounding.

So although this seemed to come out of the blue, we have had at least a few weeks warning that things were changing. Especially as he has always been so asymptomatic, these deficits were real red flags for us.



He is still himself. His Jacobness is evident just by looking in his eyes and seeing his smile or eyebrow raise. We laughed several times today, sat outside in the sun, talked about a few things he wants to do, and went on a drive with our children. He emanates peace and tranquility from his very being. He is calm and stillness personified and my hero and very best friend.