Monday, January 19, 2009

Frustrations are setting in!!!!!!!!

I am sitting here in the waiting room of the Mayo clinic after Connor's 1st evaluation with the doctor. We are frustrated because they don't seem to have any openings for his procedures until Thursday or Friday which will potentially extend our stay. We said from the beginning that we would do anything for Connor, but it will be frustrating to sit in a hotel for 3 days doing nothing.....waiting!!!!!!! We're here, let's get things done!!!!!!! Ugh!!

The appt. was uneventful in the fact that Connor was a little ham and delight. He didn't have any of his episodes to "show" the doctor, so everything was simply a report of information. We have been hoping that someone would be able to see what Connor goes through to sympathize with his plight and to understand the seriousness of his problems.....but no, not today....he's in rare form which is nice, but frustrating to say the least.

Medically speaking they are looking into doing upper GI and lower GI tests as well as blood work, liver function, thyroid function, gallbladder function, pancreas function, gastric emptying studies and the like. We'll keep you posted on our progress...right now it looks like things aren't going as smooth as we would have liked. But.....we will remain positive and prayerful that we're going to get somewhere here.

Lovebug Hugs,


hjoy said...

Keeping you all in our prayers. Hope they can get the tests scheduled quickly.

Sky said...

thinking of you guys and saying our prayers, its good to hear Connor was in rare form today.

1 I waited patiently for the LORD;
he turned to me and heard my cry.
2 He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
3 He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.
Psalm 40:1-3

Wyndi's cousin, Betty said...

Hello, Connor's family,

I'm Wyndi's cousin from NM; I've followed your blog off and on since Connor was born because my best friend has a daughter who has DS, too. :) I wanted to tell you that I have great empathy for your Mayo experience. My parents have used the Mayo in Scottsdale, AZ, for's a 600-plus mile drive from where we live...and time and time again over the years we have been through what you are experiencing. "Oh, let's see, can you come back a week from Thursday?" So you have to decide, do you stay? Race home and race back? It is SO frustrating! BUT, on the positive side, our family and many others have found answers at Mayo that were never found anywhere else, so the frustration has usually paid off. We're counting on that happening for you, too.

Best wishes to you all on this journey.

Betty in NM

Anonymous said...


We are keeping you in our prayers. Hope they are able to figure something out.

Have they checked Connor for an annular pancreas? Christopher has a version of it where the pancreas is grown in a circle, but isn't completely fused on the other side. This means that his small intestine can move in and out of the pancreas. Then when you feed him, it creates an obstruction, very painful. They found it on an abdominal CT - it only took about 3 minutes. The thing is, they can get pancreatitus from having an annular pancreas, as well, which also gives them pain. Most of the time, it doesn't really affect how the pancreas works (other than the pancreatitus.

Hopefully, they can do the non-invasive things first. We will keep you in our prayers.

Try to have some fun in the mean time. HUGS!

Steph and Christopher from IL

Anonymous said...

I always thought you were a great friend,now I realized you are a great mother.I miss you,