Simmer Down

I believe that I am more melancholy about Jacob's 2nd birthday than his impending surgery. Sometimes I fast-forward to age 5 and imagine him running and jumping and learning in school. But at the same time I want him to be a perpetual baby. As he gets older, his disabilities become more apparent - more disabling. I have no idea what 5 will look like. I'm afraid to see it because what if it is not what I have imagined? As long as he is a baby he has no need for words and "Mommy-do" everything. Don't misunderstand. I have never been afraid to let him try to do for himself. I have never been afraid to see him struggle because I always imagine success at the end. I am full of hope. I guess it's the waiting that troubles me. Are we there yet? Will we be there at 5 or will it be 10? You know that I will wait. What else can I do?

Nap Time

Matthew's new schedule at school is to skip the nap time in order to play with the children who do not have to take naps and then fall asleep on the way home from picking Jacob up. So it gives me more time to spend one-on-one with Jacob now that I am back at school myself. We eat, we play, we laugh. It reminds me of what life was like when Matthew was a baby. It's so hard to share Mommy in the afternoon. I feel like our "playtime" together is me keeping the two of them from killing themselves or eachother. So when Matthew wakes up from his evening nap, he'll have Mommy to himself. We'll see how long I can stay awake. A colleague reminded me that a special needs child is a full time job in and of itself just with all of the phone calls and appointments. We're working on scheduling a speech evaluation pre- and post- op to see what outpatient speech services Jacob will need following surgery. I have to call insurance and call his pediatrician and call Hasbro. We already have a relationship with Hasbro because of the Constraint Therapy so they are ready to bring him in following surgery to evaluate him for PT/OT services. I hope that his left brain is doing nothing but having seizures so that he won't seem any different after surgery. I hope. Jacob will be 2 on October 10th. It's hard to believe that he is only going to be 2. It feels like we have lived this life for a long time. I need a nap.

More Midnight Crazies

So I'm up all night reading... again. I found this article that reminds me of Jacob - right hemiparesis, left middle cerebral artery infarction (stroke), infantile spasms, absence of clinical seizures (normal appearance), epileptiform activity (abnormal EEG).



Anyways, Jacob is a special case but I found the article to be interesting because I am very concerned about Jacob's expressive language.

What Would I Do...

What would I do without you? I rest easier, breathe deeper, allow myself to laugh and to cry whenever I please, find peace and comfort, and a little bit of freedom. Thank you mom and dad and christe and shirley and betsy and zinovia and allison and nana and papa.

The Unknown

Our appointment with the neurosurgeon was brief. We asked our questions and he answered them. We didn't learn anything new really, except that the surgery would take 5-6 hours and that we could give blood to the blood bank in the event that Jacob needs a transfusion. He probably will not need to wear a helmet. He probably will need visiting nurses to check his wound. He may need skilled nursing services or a home health aide. He may need inpatient rehab or he may need outpatient rehab. There was a fatality in 1990 but now the procedure is done differently to reduce the risk of blood loss. He will regain his speech and motor skills. He will stay on his medication before, during, and after the surgery until his neurologist decides we can try to take him off. Jacob's motor abilities are coming from a deeper brain structure that will not be removed or from the right hemisphere. He has no motor tissue in the left hemisphere. I think his neurologist was being generous when he said Jacob still had a third of the left hemisphere. Jacob will have a drain in his head until we leave the hospital to keep the fluid pressure off of his brain. They will remove some tissue to allow room for the brain to swell. This is the biggest procedure they do in the neurosurgical department.

Boston

I have requested leave from work and we will go to see the neurosurgeon today to discuss the surgery. Jacob's post-operative appointment is on November 9th. According to the neurosurgeon's administrative assistant, most children recover after 4 weeks. Sounds crazy to me but wouldn't that be amazing. It's still hard to believe that parents, including us, would willingly remove or disconnect half of their child's brain. Then again, we willingly put a cast on Jacob's left arm and hand twice, effectively disabling him for a month. Poor parenting? Hell no. We are changing the course of his life. What he is able to do has everything to do with who he will become. Independent living ultimately is my goal for him. But for now I want to hear him combine words and use sentences. I want him to be alert and free of medication. He's still going down around 6:30 pm and sleeping for 11 or 12 hours in addition to napping during the day. This cannot be normal.

Nearly one month until surgery. Unreal.

O.M.G.

Jacob started school on August 30th, Mommy on September 1st, and Matthew on September 7th. So little time to update the blog between lesson planning, making lunches, and getting everybody out of the house alive and dressed and on time. No news is good news though. As expected, Jacob predominantly uses his left hand but will use his right as an assist. The week after constraint ended, I brought Jacob and Matthew to the park and helped Jacob crawl up the stairs to the slide. When we reached the platform, I watched him wrap both hands around the bars to pull himself up. He can do it when he believes it is a necessity. Otherwise, he finds alternate ways of doing things. And as I wrote before, the most difficult part is to maintain the skills especially when I am back at work and see him for only short periods of time other than the weekends. He's been very tired at school so I've gradually been putting him to bed earlier. Tonight he went down at 6:30 and we'll see if he sleeps through the night. He's been waking up at 5:30 and falls asleep in the car before school. He has to wait until 12:30 to take a nap. But overall, he is doing well at school. We meet with the neurosurgeon next Tuesday to learn the specifics of the surgery and his recovery.