Saturday, September 25, 2010

What a week.....

This week has been all about...the good, the bad and the ugly! Have you ever had one of those weeks?...... Simply put, I AM TIRED and today happens to be my birthday. I have tried to juggle it all this week and it has finally caught up to me.

Spina Bifida sometimes can make family life crazy. The medical expenses, the appointments, the changes in routines, you name it. It can be like riding a roller coaster. You are up and then you are down and sometimes its like you are at the top of the first giant hill of the roller coaster and they just hold you there dangling before the car is released and you are racing down the scariest hill ever! But, then, you also get to experience the joy and the thrill of the ride when you safely arrive back at the station. Then you do it all over again!!

The good this is my birthday! I went to my favorite hairstylist and got a new hairdo and did not cry when I realized how many new gray hairs are on my head! My husband replaced my car that blew up two weeks ago with me in it!

The bad..... I wanted to scream at a Resident who did not bother to read Madilyn's chart before he came into the room at Clinic. What was he thinking? I must confess.... this makes me crazy!!! Especially when I take the time to make sure all the physician notes from her appointments that we have had have been sent to her file at Clinic.

The ugly.... adding new routines. Its not really ugly but it sounds like the only place to add a new routine. First of all we have the "cathing" routine down for Madilyn's MACE. We successfully flush her MACE nightly. We have avoided "cathing" Madilyn's bladder for almost 7 years. Thursday we were told we have to start "cathing". It was hard to accept. But, I am grateful that her Neurosurgeon and her Urologist talked this out together and created a game plan. That is so important to me that we are all on the same page. If this helps Madilyn, we will hold off on her MRI until February. If not, we move on to plan B.

I hope this week will be calmer and we will adjust quickly to our new routine. I would love to hear how you all handle things when new things come up.

I will give a full report next week on how things have gone! Until then, Best Wishes for a wonderful week!

Madilyn's Mom

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