Thursday, May 13, 2010

cleveland update

First I want to start off by saying thank you.

Thank you all so much for all of the kind words, prayers, and very thoughtful messages. It really did help us get through a horrible day. So many people love and care about Emily, even complete strangers, and for that we are eternally grateful!

Emily had a MUCH better day today. We did not see any visible seizures but with that being said since she is still on an eeg we saw many on the screen, mostly when she is sleeping or when she is falling asleep or just waking up.

She was much happier today also. We got lots of smiles and some pretty good eye contact too!
She saw the ophthalmologist, who was also great, and he said she does have CVI. Her eyes are healthy and her vision is perfect, her brain does not let her see properly right now. When we get home with will start a vi son program for her to help her see better.

Yesterday we met with the neuro/metabolic specialist, he was so great! He explained what he thought and what we are going to look for. He thinks Emily may have an early onset of Rett's syndrome or cdkl5. She has actually been tested for cdkl5 before and it was negative but apparently the lab the preformed the test is not "the best" so if all of the other testing comes back negative we are going to re-test her for that one. He was explaining that finding Emily's disorder is going to be very difficult. He described it to us like this-finding a typo in a book with 20 trillion letters in it.

Finding what is "wrong" with her may not change anything, but if we do find out we can prepare ourselves for what is to come and some disorders have other problems that arise in the future like heart or kidney issues and we can already be on top of things if we have a heads up.

So blood and urine were sent off and we should hear something in 4-8 weeks.

Also we have decided to change her diet slightly. Stacy if you are reading this I am going to email you all of the new info this weekend :)

She is currently on a 4:1 ratio *4 fat to 1 carb* and the formula that she is on has artificial sweetener and some people are much more sensitive to it so we are changing formulas and ratios to see if that will help at all.

I will leave you with a few pictures.
This is Emily's very first hotel stay. She looks pretty darn comfy.
Her eeg leads on. She did so great with them, all 4 days worth!


  1. I cant wait to hold Emmy in my arms again and tell her how much her grandma loves her!
    Grandchildren are so precious and just like your own children. The love continues into the next generation. Get well, my little angel!
    Grandma Mary

  2. The other day I read your bad to worse post and left a super-duper long comment and somehow it got lost and didn't post...:(

    I just want you to know there are many of us that have been where you are. I know it completly didn't sign up for this...not what you envisioned, right?
    You are managing with such grace and I believe God is walking this journey with you...keep pressing into Him!

    Hudson is currently on Zomisamide...225mg a day. No terrible side effects other than sleepiness...we give it at night.

    There is also a new one...Vimpat, which has very little side effects.

    Your daughter is gorgeous and she is perfect, God has big plans for her and what she will teach to those around her...

    If you need to relate to someone who has and is going through the "seizure battle" daily, email, comment me on my blog...I am here, and I know the emotions and sadness you are going through...allow yourself all the time you *easy* on yourself!

    One last thing...I got this from a friend on Mothers day, and want to share it with you...

    For Chosen Mothers

    Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of a child with special needs. Did you ever wonder how mothers like this are chosen?

    Somehow I visualize God hovering over earth selecting His instruments for propagation with great care and deliberation. As he observes, He instructs His angels to make notes in a giant ledger.

    “Armstrong, Beth, son. Patron saint, Matthew. Forrest, Marjorie, daughter. Patron saint, Cecelia. Rudledge, Carrie, twins. Patron saint… give her Jude. He’s used to profanity.”

    Finally, He passes a name to an angel and smiles, “Give her a child with special needs.”

    The angel curious. “Why this one, God? She’s so happy.” “Exactly”, smiles God. “Could I give a child with special needs a mother who does not know laughter? That would be cruel.”

    “But has she patience?” asked the angel. “I don’t want her to have too much patience or she will drown in a seal of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.

    “I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has his own world She has to make him live in her world and that is not going to be easy.”

    “This one is perfect. She has just enough selfishness.” The angels gasps, “Selfishness? Is that a virtue?” God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she’s to be envied. She will never take for granted a ’spoken word’. She will never consider a ’step’ ordinary. When her child says “Mama’ for the first time she will be present at a miracle and know it! When she describes a tree or sunset to her child, she will see it as few people ever see my creations.

    “I will permit her to see clearly the things I see… ignorance, cruelty, prejudice… and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.

    “And what about her patron saint?” asks the angel, her pen poised in mid-air.

    God smiles. “A mirror will suffice.”

  3. Hello Erica,
    You don't know me but I feel I know a bit about you and your beautiful Emily because I have a google alert set for Infantile Spasms and whenever you post a new entry I have a look at how things are with you.
    Did you ever get a result for the second CDKL5 test? I am interested because right from the beginning Emily reminded me of my gorgeous daughter who has a CDKL5 disorder.

  4. Hi. Thanks so much. We did the test results a while back and they were negative. For now we have ran out of test to check for, maybe in a few years something new will pop up. Thanks for checking on her.