Well I am stuck in it. I imagine I have lost a bunch of my followers since I haven't posted in FOREVER. I hope I can get you back!!
I really do retreat when things are crappy, and things are definitely crappy lately. Emily has a kleb. bacterial UTI right now. We spent the afternoon in the ER doing chest xrays and nasal flu swabs. She has been retching and gagging and coughing up this phlemy crud all week. Today at school she was doing it and she stopped breathing each time. They freaked out (go figure - it seems we are all sort of addicted to breathing!). I picked her up and went straight to the ER. We got the all clear, but they said her sinuses are a wreck. We have winds here called "The Santa Anas" and they are warm and super strong. They spur everyone's allergies, and evidently Emily is not immune to this.
We are going on Monday afternoon for her VNS surgical consult finally at UCLA. I hope and pray that they can get us in for surgery quickly. I am going to ask about having a port placed at the same time.
If you haven't given up on me, thank you! I promise to try and post more often. I have pictures and things to catch up with on my blog and I will do it soon!!
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.
15 comments:
I'm still here!! I hope everything goes well with your appt!! I'll be praying for you guys!!
Do you let people friend you on Facebook? I know you've said you post there more often sometimes, I would love to be able to see you there. I was worried about you guys!
Ok, I need your doctor. I keep trying to get them to put a port in Jax and they keep saying no, its too big of an infection risk. Even though he hasn't had any big infections in a long time!
I think we need some Disneyland time!
Would never give up on you.Luckily I can follow things on facebook.
Trying to dig myself out of a hole too.Hard when we find ourselves here.Sometimes no easy way out.
Zoey had her port for chemo for a year.Never a problem.I am certain it will be the right choice for Emily.
Sending love and prayers to your sweet girl.
I think about you often and hope that this new treatment will be the one for Emily that makes her better. Don't worry about "losing" followers -- we will always be here in solidarity. Again, I know I haven't been much help, but please let me know if there's anything that I can do for you from Los Angeles.
I'm still here too! I think if Emily often and wonder how she is going. Sorry to hear that things are still crappy! Praying for you to hear some good news shortly!
We are still here for sure. Praying that things calm down and the VNS helps Emily. The port has been fantastic for Junior, I wish we had done it sooner.
I'm still here! I'm so sorry to hear about Emily being sick. This time of year it just keeps snowballing (no pun intended), too. Hope she's better soon!
Still here and been checking in so much. I understand your hole. I call it being flat. Sometimes not posting with me is just better when I feel this way. Praying that she gets better and you get answers at your consult for surgery. Can't wait to see pics when you get time.
Love your blog. Hang in there.
Pam
I find myself in a hole quite often...totally unerstand! Sometimes blogging is just another thing to do, and it's much more fun to blog when things are going well!
Hope things start getting easier for you and Emily! And, praying her VNS goes well on Monday! Hugs!!!
Definitely haven't given up and glad to see you posting. It sounds like you had a tough week. Keeping Emily and all of you in my prayers.
Still here!
Sometime, life just takes over.
Loving you and praying for you all!
You haven't lost me. :) Just haven't been on the google reader in a week. Catching up today. Hope things get better for you guys. Think summer!
I have been so fr behind in my reading. wicked weeks. Glad to be back on your blog! It's always an important part of my day.
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