Friday, January 30, 2009

Arthritis?


So... Madi has always had joint pain... knees, ankles, hips... and we have always written it off as part her scoli.
Lately, her writsts have ached really bad; esp. the left one. We have x-rayed and checked... yesterday, her pediatrician said that she thinks it is arthritis. We have started the screening process.
Research tells me that we probably hit the mark... unfortunately, she cannot take motrin or other suggested pain relievers because they thin her blood and we don't use those due to surgery precautions.
I am going to try the natural route... vitamins, diet adjustments, etc. along with gentle stretching and exercise.
Madi is quite upset about all of this, and rightfully so. Me, too....

Monday, January 12, 2009

HOME


Got HOME late late late last p.m. and Madi is hurting...the car ride always does her in.
I am not looking forward to unpacking the car in the bitter cold but I am looking forward to a hot shower in my own bathroom and making some homemade chicken soup today.
Comfort food for my girl...

It's weird, in so many ways I feel as if it has been a very long week, and in other ways it is as if no time has passed. Madi and I were talking about how every trip to the hospital is so completely different and yet, totally the same.

I promised her chocolate chip pancakes and cranberry juice and bacon with ketchup on the side, so must get on to the important things in life:)

Thank you for "being there"... again.

Saturday, January 10, 2009

Back at the R McD house

Well, the hospital is CROWDED and they were desparate for rooms, so they quickly bumped her outa there... we are at the R McD House in Pitt for a day or two while she gets (literally) back on her feet.
There is freezing rain here and snow on the way home, so that is fine by me.
They are having a special dinner at the house tonight to get ready for the BIG football game here tomorrow...this city is HYPED!

It is Madi's last trip before the new hospital is up and running and the new house is attached to the new hospital...so it is a strange and sad goodbye to many things that have become a staple comfort in her little lifetime.

Those of you who know Madi know that she is a true creature of habit. She gets comfort in controlling the little things because so many of the little things are out of her control... understandable.

So, we had to say goodbye to the playroom, and the floor, and the lobby... and the nurses station. Had to take pictures of the ceiling tile she painted with her beloved friend, Tricia, two summers ago on a particularly long stay.

Tonight, we will slowly march the halls and rooms of this great old house on Shadyside in Pittsburgh and take photos of the kitchen, living area, playroom, office, hallways...all memories that, someday, will be fond and dim and faraway in her mind and, I suppose, mine.

It is difficult to explain this sadness that overtakes her in these instances. So much of this hospital and house has been very good with the very bad...

Very-ables!

Til tomorrow... Rhonda

Thursday, January 08, 2009

whew!!


Madi is finally settled in her room...

Hit the same day surgery at 8:30 a.m., she was SICK with nerves...started vomiting at 5 a.m. (poor baby).

Finally got into the op room at 10:45 a.m. The surgery took about 3 1/2 hours. She gave us a bit of a scare in the recovery room-- her blood pressure sky rocketed along with her heart rate, and she couldn't stop shivering. I have never seen her do this before, and personally went into a full blown panic attack (imagine that). I had to leave and take a breather in the hallway before I lost it completely, went back in 3 minutes and we got it (all) under control.

The floor is hopping, so I am personally shocked that we have a PRIVATE room (note verbal cartwheels of joy and appreciation). At this point, Madi is resting, Grampa is snoring in the corner and I am updating the blog on an ample load of caffeine. Yup, I should be on hyper mode for the entire night.

We hope to recover quickly and smoothly. Tonight, the first night, is always a long night... but, this, too, shall pass.

Wednesday, January 07, 2009

so far...


We are lucky to have gotten a room at the Ronald McDonald house, as the city is buzzing for the big football game this weekend and rooms are hard to find.

Madi has undergone "the usual" round of testing and appointments and, after a really exhausting morning of fighting with insurance (somehow, don't even ask how, there was no approval for her procedure when we met with her surgeon today)... we should be a-go for everything tomorrow.

Madi is second of three VEPTR procedures tomorrow and will be having a double expansion. Dr. Deeney says she looks very good and cleared her to (OMG) join the tennis team. (Watch out, Bosco, here she comes)!!

There are two boys in line with her tomorrow- 7 year old Brett from Michigan will go first and 14 year old Mitchell from near Rochester will be last. Mitchell is quite a talker, and makes Madi look quiet. REALLY!!!

It is cold and rainy here-- but no snow like up home, from what we hear! Tonight, I will take Madi to her fave lil Italian restaurant, Minetellos. We will split stuffed shells and chocolate cake... tradition... very important to Madi to control what she can on this "day before the day".

Right now, I am doing laundry and she is visiting with Brett "so he won't be scared"... always the Mama Bear!!

I will post briefly when Madi is in surgery -- and after she is settled in her room. Don't be alarmed at the amount of time between these posts, as it can be HOURS.

I have my coffee, my knitting, and Madi's prayer pillow all set for my end of the day:)

Thanks to friends and family for prayers and positive thoughts!! -Rhonda