Rushville family embraces baby's unnamed chromosome disorder

Rushville family embraces baby's unnamed chromosome disorder: Baby Emma was born with a genetic disorder so rare it doesn't have a name and she is presumed to be the only person in the world diagnosed with it.

Special thanks to all the news channels, radio stations, and newspapers that have covered Emma's Story.

Rushville baby genetically "one of a kind"

Rushville baby genetically "one of a kind": Doctors diagnosed 15-week-old Emma McGovern with a genetic condition.

May 27th.. Two Months

Two months have past and although its still very fresh in my memory...  I think Im getting to that point where Im able to let go of the negative and live for the positive! Theres too much negativity to let all that get us down! I wish I were able to blog more than I have been able to but I will get to it. Theres a lot going on around here :) But by the grace of God and a schedule things are slowing down as much as they can around here.  Dr Green has decided Emma's labs are looking good enough we dont need her to get out twice a week- thats nearly four and a half hours a week that dont have to be spent on the road or in a hospital! Thats a step in the right direction! :)
Overall, at this point, Emma is improving every day! She is doing great for all she has going on! Shes definately a fighter! Thanks for all your prayers and Im going to try to keep the blog updated as best as I can. :)

Emma will be four months old June 14th! :)

Another Special Little Girl behind this story..

Imagine being four and having to comprehend this story...

Catch your breath!.. She 's the most intelligent four year old you will ever meet and she is Emma's big sister, Maddison McGovern. She has her own version of Emma's story she tells but it usually consists of "Emma quit breathing and Dr Mander saved her life and now shes home.. But Dr Mander is perfect and we miss Dr Mander and do you know Dr Mander.. oh He's just awesome..he's my good friend you know?!"  (she says it a thousand mph which makes it that much more hillarious)   ...... As you can see she kind of got obsessed with our PICU family. :) When she watched Emma's slideshow halfway through she yells "OM!!!!" (He was a resident in the PICU that Maddie just adored!-he has his own post on the blog (see Emma says: Om!Om!Om!))
So you have gathered that Maddie is Emma's big sister! She will be four.on June 14, 2012. ( Emma turns 4 months old that day as well!)
Maddie is such an amazing helper! She has handled this entire situation way better than any of the adults!
Most importantly when you ask Maddie what she loves about Emma (aka SissyBuns) she will tell you that God loves our family very much and he needs someone very special.to take very good care of Emma and no one can do it but her ;) so God put Emma in Mommys belly so that she would have the best Mommy the best Daddy and the best Big Sissy EVER!!
When I ask her "does it make you sad that sissy has tubeys?"  She says "No, it made me sad when you and daddy had to stay in the hospital.with sissy.. Now im just glad we are all home together!" She says "God made Emma special for us thats why she loves her soooooo much!"
AWESOME! Right?! Shes the best four year old ever! Emma is so blessed because her big sissy will forever be her best friend!

Fundraiser Information!

Family Fun Day for Emma Lee McGovern Family

Saturday, May 19th
First Christian Church
1421 Beard St in Beardstown

•Chicken.Noodle Dinner
3pm to 6pm
Adults : $6 @ the door ($5 in advance)
Children (10& under): $4 @ the door ($3 in advance)

•Silent Auction
3pm to 7 pm
LOTS OF ITEMS! Several different items from kids stuff, to homemade cabinets, white sox tickets, gift certificates, baskets, and much much more!!

•KIDS CARNIVAL!!!
4pm to 7pm
4 Giant Inflatables, games, magician, music & more!!
4pm to 7 pm wristbands
$12 each @ the Gate
($10 each in advance)

Dinner Tickets & Carnival Wristbands can be purchased in advance at:

Logsdon's Tug Service
400 1/2 w main
Beardstown

LB Sports
108 E. main
Beardstown

G.M. Sipes Construction
503 E Adams
Rushville

If u have any questions or will not be able to attend but want to donate you can contact Amanda Ren @ 217-320-3406 or Tammi Kempf @ 217-371-7868.

Hope to see you all there! :)

Bring the kids and just enjoy having healthy happy children! God bless

Genetics say:Emma is One of a Kind!

Emma is the only person in the world to be diagnosed with her genetic condition. It doesnt have a name because its so rare.. She has a 10p13 terminal deletion with an unbalanced translocation of chromosome 10 & chromosome 20 and a 20p13 duplication! (This I am sure just lost you all.) I have a way to explain it by drawing it and Im going to plan on drawing it while explaining it at her fundraiser when I tell Emma's Story. :) Hope to see you all there!

A Familiar Place... HOME

May 3rd 2012:

The minute Danica closed the car door.. Our new life began. There was no longer an entire PICU staff three steps away. I knew she was better and that I could do it, but the comfort of them being right there was really nice.

The ride home was bittersweet! Scary would be an understatement!! The anxiety of things were finally hittinf me-how was I too take on the role of an entire medical staff! How could I do this without my PICU girls!

Then, as I looked out the window in complete fear of not having immediate help...
I realized something...
There is not a minute that goes by that I dont have a helping hand showing me what to do even where I feel completely clueless!
GOD is always by my side- guiding me exactly where I need to be at the exact time I should be there. This he has proven to me through the Olive Garden situation!
Not only is God constantly by my side, my husband Kory is the most amazing man ever! He does a fantastic job with both our girls! Emma and Maddie are both Daddys Girls! Hes always there to help but eventually with be returning to work from Family Medical Leave!
The drive home that always seemed to take forever----- went by so quickly! Before I knew it we were at the water tower turning on our road! A hurricane of emotions were going through me at this point! I was praising God we were all finally going to be home as a family but yet begging him for strength and knowledge on how to get through the first day at least!
Forgetting I/we had been trained for over a month on all of Emma's treatmenf plan. I was still terrified! We finally reached that familiar place... We were home after 39 long days in the hospital. We settled in over the next few days (which were the most hectic days of my life, - so I unfortunately dont remebmber must to blog about that time)

The most important thing was all four of us were back in our house -together-& we would all be sleeping in our own beds for the first night in over a month!

God is Great! :)

38 days in the PICU..

It was the 3rd of May and then end of our PICU stay.
Now Kory & I had to take all the care that was taking over ten people and hang it all on our shoulders. We were ready to get her home and Maddie could not wait to have us all home again.
Dr Basnet &  Dr Johnson had been in to see her and Kory had started taking things to the car. Gramma Dubba D, Aunt Sami, Mommy and Daddy were getting ready to say good bye to the place we called home for nearly 40days. It was bittersweet. Danica was Emma's day nurse who discharged us. Her last night was spent with Lauri. :) It was hard leaving without saying goodbye to Penny but I know we will see her again. :)
We were almost ready to go and something didnt feel right.. I went to the bathroom (no that wasnt the weird feeling!) On my way back from the bathroom I heard "Hey!" I turned around like a kid in a candy shop- the weird feeling was gone.. He was here to say good-bye.. Dr Mander walked right into Emma and said 'I'll see you soon, come back for visits so you don't miss me to much.' This man is Emma's hero, he saved her life. Our PICU family will be greatly missed but we will have lots of visits. :)
We got our pictures with Dr Mander-
Its time to take Emma home where she belongs!
Praise God!!!!

Dr. Mander, words can never express our gratitude!

Emma in her chariot, waving bye bye to all of our PICU family!