Blowing this place!! - Living with Spinal Muscular Atrophy

We leave for home tomorrow!!! WHOOOOOOO HOOOOOO. Doing the happy dance here!!

Okay , how do you put 30 helium filled balloons in a dodge caravan and get home? Lizzy wanted to take all her balloons home but for safety purposes we are donating the balloons to kids up here after they are sanitized. Can you see us trying to drive with a van full of balloons. Not likely!! LOL

Its been a whirl wind last few weeks. There were many days I did not sleep, argue with the attending docs, piss off the RTS and constantly pray for God to save our girl. I did not know if Lizzy would get through this terrible illness and still be the same kid that came through these doors the night we arrived. The part that hurts my heart is that this little girl had so much confidence in me to get her through this illness with out coming to the hospital. I wish I could of done it but I have to admit if we had not come here and DR.Schroth had not life-flighted her in I do not want to think of the what ifs. I aged 40 years in two weeks. Its been 21 days with RSV and now its finally OVER!! The worst illness ever that we have had to encounter with Lizzy.

The q-2 was treacherous but Lizzy is close to baseline again because of the RTS and their care with me at her side helping.  We wanted her intubated but they said no, that  it will be rough but she would get through this. they put the tool boxes with the intubation kit in Lizzy's room for peace of mind to us.  They said Lizzy did not need to be intubated. They took the boxes out of here last weekend after Lizzy turned the corner.
Lizzy had a tea party with her favorite nurses and PICU DR. Jake ( Lizzy said he is cute LOL) , and it was  so much fun for her. They all sat drank tea and Lizzy entertained them.  Kim was one of her favorite nurses besides Claude and Lynn. She liked all her nurses but these 3 she liked the best. Just a wonderful staff. She wants to take Kim home and have her sleep in Aunt Jessie's old pink room!!I need a "Kim" to help me at home. She has been so good with Lizzy.

I guess DR.Schroth is saying Lizzy needs growth rod surgery again...... *sigh* but we have to see the new ortho wants to do. We knew this was coming. In the mean time the new seating  for her chair is going to be picked up hopefully next week and her new TLSO.

Thank you to all of you that prayed, did some healing, sent positive energy, presents, balloons, brought food , phone calls, being my sounding board, brought supplies, help us with our stay etc and just for being yourselves. You are the greatest extended family ever!!

"We believe in miracles because we live with one!"
www.our-sma-angels.com/elizabeth