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Showing posts from September, 2013

Second verse...

You would think that after two horrid weeks of nothing but nausea, Shelbie would be doing 100% better after finishing the extremely harsh set of pills to kill her bacterial infection.  You would think that in return for all that she sacrificed, things would be much better...well, they're not!

She finished her meds on Monday and she continues to be as sick as she was when I first took her to the doctors.  No change!  I called the pharmacist to see when we might expect to see improvement and he said we should have seen it the last few days of the meds.  He also said that the last few patients he has seen with H Pylori, they have not responded to the meds.  It seems to be some resistant strain to treatment!

I called our doctor next.  Of course, doctors tend to think they are important or something and have more security than the President of the United States.  It use to be that you could ask to speak to a nurse and that was usually do-able but now it seems you can't even do th…

Looking forward...

The other day, a new person posted on the Shwachman Diamond group that her son had just been diagnosed with Shwachman Diamond Syndrome.  She posed the question to the group, "What can I look forward to..."  I thought that was an interesting way to pose the question.

I'm sure she got the information she was hoping for.  She got more than enough advice on pancreatic enzymes, bone marrow biopsies, infections, and the likes.  Her question got me to thinking, not only how I would respond to her but what those words really meant.

Well, here is a little more than my allotted 140 characters of my response to the question, What can I look forward to with SDS?

1.   There will never be a dull moment and if you do find yourself in a dull moment, embrace it, no matter how big or small.  They don't come very often.  Learn to love the dull parts of life, the mundane, the ordinary. Someday, in the not so distant future, you may find yourself craving those dull and boring moments. …

Blessed?

Well, well, well...What a day I had today!  It didn't start as I had planned for it to, in fact, it ended up being the farthest from my plans!  That's life right?

The foot problems continue for me.  You never really understand just how much you use your feet and legs until you can't!  I wrote a somewhat comical take on the problem over at my other blog, you can get caught up on the story if you want by going HERE

The tarsal tunnel that I was diagnosed with on Monday hasn't been getting any better despite keeping it wrapped, elevated and iced.  The ACE wrap just wasn't doing enough to keep my ankle immobilized so I stopped in at my Physical Therapist's to see if he had any ideas.  He took a look and suggested I come in and let him work on it.  I made an appointment for this morning. (Friday)

So, I head in first thing and he examines things and determines that my Achilles tendon is also inflamed and swollen.  I knew that because bending my foot is super painful.…

Prayers and Miracles

I have been in awe lately at the workings of God.  He's a pretty amazing guy and one day, I hope I will discover how He does what He does!   I have many people dear to my heart that need prayers and miracles and want to share a few stories here...but before I do...

Here is a Shelbie update...Still sick!  7 more days and counting of treatment.  Fluids helped a lot last week and got her through a really tough Saturday photo shoot.  She had to be at a wedding from 8am until 10pm.  I had to work until 4:30 Satureday but dashed down to a city about an hour from here to where she was.  She was going to have me take the photos of the reception.  Turns out, she was really pushing herself and was able to get through it all!  I was amazed at her strength!  Not only that, she was really blessed.  There is no other way she could have pulled that off but that a fleet of angels were watching over her.

You know what I love about other Christian religions?  They keep prayer journals and particip…

Dehydration

It became pretty clear Wednesday night that Shelbie was dehydrated.  By Thursday morning, she was in bad shape.  Since Shelbie was two weeks old, dehydration is something that comes on fast when she gets sick.  We were always in the hospital with her when she was a baby because of dehydration.  Makes me wonder why?  Anyways,  I called the doctor but after I hung up, after just being able to leave a message, decided I wasn't going to wait around for a late afternoon call so, I loaded her in the car and we took off for his office.

They were great and got her right in.  It didn't take the doctor long to assess things and get an IV set up for her.  They ran two liters of fluid and some IV Phenergan on top of the Zofran she was already on.  Usually, fluids turn a bad situation completely around so I was expecting a miraculous recovery.  I thought after being there nearly 4 hours, she would walk out and beg for a cheeseburger or something.  Well, that didn't happen.  She was no…

Green around the gills

Shelbie is officially sick.  We haven't experienced this degree of sickness in a very long time!

She started her H Pylori medication, finally, on Monday!  Not even an hour after her first dose of 5 pills, she was laying on the bathroom floor crying and calling me to come home from work.

If she isn't laying in her bed crying with nausea and pain, she is laying on the bathroom floor.  She hasn't eaten anything but mini soda crackers and a slice or two of bread.  Even water won't settle in her gut!

I think she is dehydrated and that might be aggravating the side effects of the pills. Despite all the Prevacid she is taking, she is full to her eyeballs with acid.  I keep telling her that food will help to regulate the acid but she won't eat because of the pain it causes and the increased nausea.

In addition to all of this, she is completely off her Citalopram, her anti depressant.  That is making all this so much worse.  Today, she was mad at me because I didn't…

As our world spins...wildly out of control...

Just kidding!  It's spinning alright and I felt a little queasy on Monday and Tuesday but things are humming along now.

Heard from Spencer on Monday.  He sounded a bit discouraged.  He has a companion that isn't interested in training him or working so that has him frustrated.  He wants to be on the go.  Aside from that, he is sick with all the GI stuff but has had a respiratory infection as well to complement things.  Since we can only communicate through email once a week, I don't know if he has made it to the hospital for testing and what the results were.  That had me all wound up and in a dither on Monday.  He hasn't received any of the packages I sent which upset me as well.  The most important of them had his Medic Alert bracelet in it which would be really handy for when he goes to the hospital.

It's pretty crazy trying to do all this from a distance when communication is less than desirable.  I just have to keep reminding myself that it will all work out.…