Long story short, we didn't get transferred on Friday. We got discharged and went home. Sunday was about the worst day she had so far, so we went to the ER. This time we went to the hospital where our neurology team is. Emily is hooked up to an EEG right now, and then we will be getting a GI second opinion. They agree here that her quality of life has gone downhill to a point that is unacceptable.
Please pray that the doctor here have the wisdom to get to the bottom of these things soon! Today marks the sixth Monday in a row, in a hospital.
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
17 comments:
Something has got to give,that is for sure.Hating this for Emily.Hating this for all of you.Lots of prayers coming your way.
Heading that way tomorrow.Late afternoon.Text me on the visitation guidelines.Wondering if I can bring Zoey.Talk to you soon.
So sorry about all of this! You must be SO SICK of hospitals!!! Praying they can figure things out VERY SOON, and that Emily is feeling more like herself soon! Love and Big Hugs!!!
Oh Sara, so sorry to hear that you are back in the hospital. Praying for some answers for your sweet princess. Lots of hugs.
I do hope you get some answers and relief soon. I have my three kids home on spring break with very little childcare, so I'm not sure that I'd be able to visit -- at least not through the week. However, if you're in any longer, or if something eases up, I will definitely stop by. Also, if you need a break and want a place to shower, eat, etc., you are so welcome to come here. I live about fifteen/twenty minutes east of the hospital.
I hate this for you all. I hate that I cant come down next weekend like I wanted to, to come and see you. Im praying all this gets figured out.
Our prayers are with you all. You must be in agony seeing her suffering. We will be praying for her, daily.
pardon my french but WTF? Sweet Girl..hang in there. Lots of loveys from madie and I to you. :( I am with Heather...Something has got to give! Stay Strong Mama.
Please keep us updated, we are praying for wisdom, understanding, help and healing for your family. We all learn from you when you tell us what is going on. So many of us are experiencing the same type of issues. Thanks for the update.
This is heart breaking, to think that she is so unhappy it's unacceptable. I can't imagine being a mom in this situation which is just a testament to how strong you are. Prayers for you all to stay strong and for answers. Virtual hugs!
That totally sucks. I hope the doctors can get to the bottom of all this and help Emily!
I'm so sorry to hear this. Please give your special girl a hug from us. Praying you get some good news soon.
This is so difficult! I am so sorry this "mystery" isn't cleared up yet.
6 mondays in a row sucks! The Little Man & I are praying for you & Emily. Hopefully an answer can be found soon.
Praying for you. I can't imagine the frustration you must all be feeling. <3
Hi Sara, I haven't checked your blog in a while and I can't believe what I'm reading today getting caught up. I know there's not a whole lot you can say to make you feel better but I just wanted to let you know I'm thinking about you - as we all are - and hope and pray things settle down for you all soon. Poor peanut. Thank you for posting and keeping us all up to date. I really hope some good comes out of all this for you. Laura
Dear Sara,
I'm new to your blog. I came via my grandson's blog, Jump in for James, who is 3 and has Cerebral Palsy. I feel such concern for you and my daughter, the Mamas, the care givers, the keepers of the flame, the one who bares all the good, bad, and the ugly! To you, I raise my hand in salute to your dogged determination to give the best care to your child. I am in awe of such love! I will pray for you and Emily...pray for strength, a second wind, a hope of better days!! God is still on the Throne even when it feels as though you've been deserted. Others are inspired by your story and your love. Keep up the fight, and know that others whom you don't even know are praying for you!!
Blessings
Gmama Jane
http://grandmamasstories.blogspot.com
I can't believe you have been in the hospital that long. Oh...I am so sorry to hear this...
Praying since this was written days ago, this finds Emily improving and hopefully home soon if not home already.
Know you are in my thoughts and prayers.
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