Megan's got 47

I have had limited computer time lately. I am hoping it will change come Monday.
I have not taken the advice of many to follow Google Reader but it is now a fixture on my tool bar. I will start getting back into following all my lovely friends blogs come Monday.
For now, I apologize for being a bad blogging buddy! But wanted to wish you all a HAPPY EASTER!!!

Wanted to share our celebration with you all:
We had a pizza party with our friends, ate cupcakes and released 47 blue and yellow balloons in honor of our Megan Muffin. We ended the night with the movie "Horton Hears a Who"....I am now ready for bed!

Jesus came to earth,
To show us how to live,
How to put others first,
How to love and how to give.

Then He set about His work,
That God sent Him to do;
He took our punishment on Himself;
He made us clean and new.

He could have saved Himself,
Calling angels from above,
But He chose to pay our price for sin;
He paid it out of love.

Our Lord died on Good Friday,
But the cross did not destroy
His resurrection on Easter morn
That fills our hearts with joy.

Now we know our earthly death,
Like His, is just a rest.
We'll be forever with Him
In heaven, where life is best.

So we live our lives for Jesus,
Think of Him in all we do.
Thank you Savior; Thank you Lord.
Help us love like you!

By Joanna Fuchs

My friend Renee and her daughter Kennedy were here for a few days to see our Philly doctors. Renee's daughter Kennedy has to have surgery on her spine and skull. She has something called AOI.
I was fortunate enough to be able to help them out by being their driver and spending the day keeping them company. I was blessed to get to spend some time with Renee and Kennedy....those 2 are truly amazing human beings.

Renee is amazing because she does ALL this stuff for Kennedy and her family without flinching. She does it and is so calm. She can spurt out whatever the name of the drug it was that the doctor gave to her daughter in 2005. She can carry her daughter from stretcher to chair while juggling the cell phone to find out if her husband is alright after she got an email that he fell out of a helicopter while in Afghanistan.

Kennedy is a doll. She has had a list of medical issues a mile long.....seriously.
She is SOOOO SUPER SMART. No odds will ever hold her back. Her vocabulary spoken and with sign is AMAZING. She NEVER complains...I am sure when the nurses walk out of a room after putting in an IV they thank heaven that their patient was sooooo "patient"...I have never seen a child so compliant and well behaved, Ms. Kennedy put my kids to shame these past few days! WAITING requires patients, Ms. Kennedy does a lot of waiting....I only had to do it for 2 days with them. God bless their souls!

I now anoint Ms. Kennedy and Ms. Renee "Saints of Patience"
To read all about Ms. Kennedy and her struggles, please visit: Carepages
CarePage Name: KennedyGarcia

Please keep her in your daily prayers. She will be back here in Philly soon for surgery.

Friday is going to be Megan's Fitness Day. When she gets off the bus she has her pink slip from her PT which tells me about her day of PT. It is sometimes good and sometimes disheartening but wanted to start keeping track. Of course the next 2 weeks she has off so I am already starting on a bad foot....but here goes

3/13 What we did today:
"Megan amazes me. She can almost completely put her socks on and her sure steps on but moving through space continues to be such a challenge. How often is she seen by the eye doctor? We had fun being funny animals, picking apples from trees and jumping into beanbags! Ms. Katherine"

Today at dance class was another parent visitation day.
I want to take a moment to brag on my kids!
Olivia sat so nicely the entire hour w/ no problems and Megan did FANTASTIC.
Meg sat on occasion because she tires easily....but she did most of the dance moves....and I got it all on tape. I just need some time to download/then upload it all and I will post!

p.s. We just got home last night from our mini get-away at Great Wolf and had a BLAST! I have footage of that too coming soon!!!!

p.s.s. If my Aunt Karen is reading this. I just wanted to say I LOVE YOU and thank you for all you do....what a wonderful email you sent to me.

For those of you wondering, my Aunt Karen shared the book "Gifts" with a family at her church and they are now going through the adoption process to ADOPT AN ANGEL!!!!
Please pray for the family. If I get any more details I will post! It is so nice to welcome new families to "The Club"!

Results are officially in.

Spot confirmed to be scar tissue calcified, so Radiologist and GI both agree there is no need for a biopsy. YAY! I am ok with the decision and do not feel we need a second opinion, I mean it was CHOP that we went to. They both felt that her history of Jaundice as an infant could be the reason for the scar tissue. Megan was on a wallaby for six weeks because her jaundice levels would not go down.

Celiac panel was re-run the right way and she tested NEGATIVE, so we can continue with the regular diet of fwench fwies and chitchen. No need to ever re-test unless she starts showing signs.

God is good!

I was supposed to hear from CHOP today regarding Megan's appointment on Tuesday.
The doctor was going to review her CT Scan and let me know his thoughts on the spot and also he had Megan's blood work redone regarding her Celiac. He told me that the blood work done back in December ran the wrong panel and he thinks she will be fine.
All in all the GI appointment was positive. I was hoping to be able to post that there is nothing more to worry about but now we must wait some more....wait wait wait wait....ugh, I hate all this waiting. Hopefully tomorrow I can post the good news.