Jacob & Lili

Jacob & Lili

Wednesday, January 26, 2011

Impact Unknown

Yesterday was Jacob's 2nd endoscopy. The doctor says his esophagus looks good, so hopefully we can back off his steroid treatment. We will know more tomorrow once the biopsies come back. And hopefully we will know more about his mysterious belly pain.

While "surfing" the web, I saw an article about SJSU starting a PhD program in nursing. Every time I see something about nursing or someone asks me that question, "so how is school?" the pit in my stomach comes back. That feeling of regret. A little over a year ago, I decided to go back to school no matter the consequences. I registered for classes and informed my bosses, aka my parents, that I was returning to school. I was so nervous and so excited.

My first semester was an adjustment for the entire family. My husband had to pick up more of the slack and the kids didn't have their mom at their beckon call. But it was so fun. My second semester was much the same. I managed to get into the last class I needed, a task that is almost impossible, to apply to the nursing program. And for the first time in my life I had a 4.0!

Then summer came, and everything fell apart. Jacob's mental health took a nosedive. After much agonizing I dropped my classes for the Fall semester and put my dream of nursing school on hold indefinitely. As it turns out, all my energy right now is working on getting him better both mentally and physically. Could I have handled the class load that I would be carrying had I not dropped? I don't know, I'll never know.

I hope to return to school one day. I love, love, love school. I'm a nerd through and through. School is my sanctuary and I feel nursing is my calling. But for the time being I devote myself to nursing my kids in the hopes that they will realize their potential in life.

Friday, January 21, 2011

Mommy Meltdowns and other complications

The past 2 weeks have been a roller coaster of emotion. I've gone from frustrated to angry to down right pathetic. Jacob's belly pain isn't easing up. He has another endoscopy scheduled for Tuesday. More biopsies, blood tests and urine tests are going to be done. The thought is that he has IBD in addition to the EE. If nothing shows up on Tuesday then the doctor says she will do a bowel study, whatever that means. I haven't had the energy to look it up. I'm just holding on to the hope that maybe, just maybe the endoscopy will answer all our questions. OK, a little idealistic I know.

Meanwhile, we took Jacob in for an evaluation with a psychiatrist. His emotional ups and downs had us worried. He is now diagnosed with OCD, ADD and is high functioning Asperger's. What did that tell us? His reaction to his constant pain is only exacerbated by his quirky little self. And how do I deal with this? I haven't got a clue. No one prepares you for the possibility that your kid could not only have special needs but could also suffer from chronic pain. To understand what that is like to deal with on a daily basis is beyond comprehension.

One success we have had through this is finding a suitable substitute for macaroni and cheese for Jacob. I finally used my limited cooking skills and got to work in the kitchen. Here is what I came up with. Enjoy!

Gluten and Dairy Free Macaroni and Cheese
Ingredients:Add Image

1 box quinoa pasta (we like the shell shape)
1/2 stick Earth Balance
2 tablespoons gluten free flour
1 cup rice milk
Daiya Cheese (about 1 cup)

Cook pasta per directions. Drain and set aside. Meanwhile, on medium high heat, melt Earth Balance in a saucepan. Add flour and whisk for 1 minute. Slowly add rice milk, continually whisking until thickened. Take off heat. Add desired amount of Daiya cheese and stir until melted. It may remain a bit lumpy. Pour sauce over pasta and mix together.

Monday, January 10, 2011


Lots has been going on with Jacob but I came across this study regarding ADHD and thought I would share. Lili, our 10 year, has ADHD primarily inattentive. ADHD is one of those labels that I think is widely misunderstood. I know I didn't understand the impact it can have until we we realized that the problem Lili was having was that she couldn't focus. With the help of her meds, she is doing so much better and is no longer fighting her mind to pay attention.

The Wellcome Trust, who funded this study, was established by Gary's great uncle, Sir Henry Wellcome. The pharmaceutical company GlaxoSmithKline was also started by his his uncle, Sir Wellcome, and is researching EE.

ADHD children 'have faulty switch'

Children with hyperactivity disorder have a faulty "off-switch" when it comes to their minds wandering, scientists have found.

Brain scans of youngsters with attention-deficit/hyperactivity disorder (ADHD) have shown for the first time why they may have difficulty concentrating.

They suggest that children with ADHD require either much greater incentives or medication (methylphenidate, often known as Ritalin) to focus on a task compared to children without the condition.

If the incentive is low, then those with ADHD fail to "switch off" brain regions involved in mind-wandering.

But when there are strong incentives, or when youngsters are taking their medication, their brain activity is the same as for a child without ADHD, according to University of Nottingham researchers.

The study, published in the Journal of Child Psychology and Psychiatry, and funded by the Wellcome Trust, involved 18 children with ADHD aged nine to 15. Their brains were compared with those of 18 similar children without ADHD.

All the children played a computer game that involved hitting green aliens as quickly as possible while avoiding black ones. The reward for avoiding black aliens was then increased to study the effect of incentives.

Previous studies have shown that children with ADHD have difficulty controlling the part of their brain which gives rise to wandering thoughts or daydreaming. This part of the brain is normally suppressed when people are focussed on a specific task.

The latest research suggests that children with ADHD - up to 7% of those at school - have difficulty suppressing this part of their brain unless they are on medication or incentives are high.

Study co-author Dr Martin Batty said: "Most people are able to control their 'daydreaming' state and focus on the task at hand. This is not the case with children with ADHD.If a task is not sufficiently interesting, they cannot switch off their background brain activity and they are easily distracted."

The Maupin's

The Maupin's