Friday, August 31, 2012

Exams on Tuesday

Our little girl has serious digestive and acid reflux issues as many children with cerebral palsy do. Allie's been on so many medications for various reasons in her six years that we fear serious damage has been done to her stomach and intestines. And we're working with a doctor that has a plan.

Our Tuesday visit earlier this week went well and gave us new confidence. The professionalism and thoughtful approach this new pediatric gastrointestinal (GI) doctor used was refreshing and gave the Charming and Beautiful Susan and myself new confidence.

Our confidence was shaken about six weeks ago when we went to see a pediatric GI doctor that mishandled our situation. He looked at Allie and said, "she's too skinny."

"Well, she has cerebral palsy. Our general doctor (the most awesome doctor in the world!) said this is normal for someone with Allie's challenges," I informed him.

"We're not going to treat her like she has cerebral palsy. We're going to work on putting weight on her. You're not feeding her enough," he said.

Then he ordered a blood test to evaluate her nutrition and gave us armloads of Pediacare which is a syrupy sweet vitamin and chemical formula mix that, incidentally, creates more acid and, thus, reflux, in the stomach than poor Allie already had.

Allie has gone from the fire into the frying pan with her symptoms. Every morning she starts her day with painful spasms and we are at a loss to give her any kind of comfort. Sometimes we wonder if we should rush her to the emergency room. But, like clockwork, the episodes begin to subside before it's time to get on the bus and go to school.

This next Tuesday, Allie will be in the hospital to go through a couple of procedures to explore her problems. First, she will have an Upper Endoscopy done. This is a test where the doctor will look directly into Allie's esophagus, stomach, and upper small intestine with a narrow, bendable tube fitted with a light and a tiny camera.

Depending on the results of the Upper Endoscopy, Allie may have a pH Probe Study. This measures the pH in the esophagus to determine whether or not acid is coming up from the stomach. This test is performed by sending a thin plastic tube with a sensor at the tip into one of Allie's nostrils and is then fed down into the back of the throat down into her esophagus. Then they'll take a chest x-ray to make sure the probe is in place properly. A wire from the probe runs into a recorder that Allie will carry around for 18 to 24 hours.

Sounds fun.

We're in the hospital to have this done up in Boca, like I said, on Tuesday and possibly Wednesday. If I can, I'll post some updates and pictures on Facebook and Twitter. I'd value your prayers and my hope that posting updates here and there will keep us in your thoughts and prayers. Your encouragement has comments have given us a tremendous boost.

www.facebook.com/bryon.mondok
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Sunday, August 26, 2012

Maybe you could pray with us


"How's wee Allie?" This is how my prayer/warrior friend Dot greets me every time she sees me.  She's Scottish so when she says "wee" she means little and she says it with so much affection it makes me melt. Love my kid and I'll love you.

I have another friend, Joyce, that informed me today that she prays for Allie daily right along with her children and grandchildren. This touches me. This lady is way nicer to me than I am to her. This is why I have guilt.

This summer has been a long one. Allie has had a difficult time. Early last spring, Allie's seizure activity spiked. We were baffled. Her seizures started every morning with a painful, panic-filled shriek and often ended with an epileptic episode that lasted as long as a minute. She can't breathe and her lips turn blue from lack of oxygen. It's the longest minute of your life and it happens pretty much every morning like clock-work.

For the past year, we've tried several medicines to manage the seizures with mixed results. Some medicines left her dopey. One left her lethargic for about three days with one dose. The up-side was there were no seizures. The downside was that she was in daze that was just unacceptable.

Her neurologist scheduled her for a 24 hour video EEG in July. She had several painful startle events, but none that resulted in an epileptic seizure. It's like when you take your car into the shop because it's making a weird noise but then won't do it for the mechanic. But your mechanic only charges 75 bucks an hour.

Her doc decided that these events are not neurological. They are related to gastrointestinal (GI) activity. After looking at the results with the doctor and talking at length with him, this really makes sense and it is very common with kids that have cerebral palsy and brain damage like our little Allie. So now GI doctors are in the mix. Her general pediatrician is a genius and a wizard and a gentle saint. He's been walking through this with us.

Quick story: He's been practicing in South Florida forever. When he first met Allie and we told him her story, he informed us that he already heard about Allie because his daughter was a nurse for Allie in the intensive care unit in San Francisco where Allie was when everything first went down. Crazy, right?

On one hand, it's a relief that Allie isn't experiencing seizures triggered in the brain. But it's torture to watch her and to have to comfort her through several painful daily events that come from simply digesting food. Her pediatrician has prescribed another med that seems to be working to relax her intestines and provide some relief, but there's still a lot of healing that needs to take place. Do you think you could pray with us as we meet with a new doctor on Tuesday to troubleshoot Allie's digestive pain? The persistent and faith-filled prayers of our friends has been the one thing that has helped us and served us most.