Thursday, September 04, 2008

Emma's new alphabet

023

Today Emma had a new alphabet soup added to her already growing list... CP.

I called the cardiac surgeon to request (again) a copy of the MRI results from the brain scan Emma had done after her T&A back in June. We knew that there was 'something' but that it wasn't active and honestly were more worried about the surgery and getting her through that than the idea of brain damage or what that might mean for her.

I received the report in just a few minutes via e-mail and read through it. Though I couldn't make heads or tails of a lot of it, I understood a good portion and googled a few pieces as well. I put in a call to our pediatrician and offered to fax the paperwork to her when I picked up the kids at the church. In talking to the ped when she called me later on she suggested referral to the neurologist for follow up. I asked her thoughts on Cerebral Palsy and she said, it's brain damage in the white matter and this is what the report shows so yes, it's "likely" CP.

So, unofficially, we've been given a diagnosis of CP. It will probably be months before Emma sees the neurologist and gets any formal diagnosis where we're able to start figuring out why she has the brain damage or whether it's a condition that needs to be monitored that caused it.

There was some good news squeezed in though... the report clearly states that she does NOT have AAI or AOI which are the instabilities of the neck that we've been concerned about! And, she does NOT have a tethered cord which was another thing we were questioning to rule out.

The cause of the CP could be trauma from birth, could be TIA's ('mini strokes') caused by high blood pressure, could be full blown strokes, could be any number of things... and I have no idea how they would attempt find out how or why it happened... or if it might happen again.

She's still the same sweetheart we brought home to love forever, and we now know that the challenges she faces are not all just a result of her environment and nutrition in the orphanage. It means more obstacles for her to overcome in life, but knowing is a good thing.

Emma's alphabet letters are DS, AVSD or CAVC, PH, PFO, PDA, FTT, and now... CP

Down syndrome, AtrioVentricular Septal Defect (or Complete AV Canal), pulmonary hypertension, Patent Foramen Ovale (heart), Patent Ductus Arteriosis (heart), Failure To Thrive... Cerebral Palsy...

God has blessed us abundantly and we know this is another perfect piece of Emma that didn't have a name before today. Now that it has a name we can help her to overcome the difficulties it might bring her way. But He's never let us down before and we know He's holding us up even now.

17 comments:

  1. Praying for you guys Meredith. I know it answers some questions for you, but its tough to have even more questions raised. I know when I write out my daughters "alpahbet soup" I think, my goodness! (PDD-NOS, ASD, SID, CAS, Hypotonia of the hands and trunk) But I know and I know you know that our kids are so much more than just their acronyms. In the most recent pictures, Emma just looks like she is glowing. What a difference in her world, new glasses to see with, repaired heart to give her energy, a wonderful family to love her. She is a beauty! :)

    ReplyDelete
  2. What a cute picture of Emma. She looks so happy!! Emma is a special little girl and we know God has his arms around her. We will keep her always in our prayers!

    We love you all!

    Mom & Dad C

    ReplyDelete
  3. I think she gets more gorgeous in each picture you put up :)

    With all that you have had to deal with, it seems like every time something new crops up, you are able to handle it and decide what comes next. I'm sure it is far from easy, but you should know you inspire sooooo many people (with and without kids who have DS!)

    Jaimie

    ReplyDelete
  4. I like the alphabet soup label. I have never heard that before!!! I am praying for Ms. Emma and agree that is a precious pic of her!!

    ReplyDelete
  5. So glad you have answers of sorts.As I said in my email,what I do know is that Emma has proven that she is a strong,resilient,happy child.She is THRIVING.As a fellow mom with a child with her own variety of "alphabet soup",I know for certain that God has placed these children in this world for purpose.They light our way.for that we are all incredibly blessed!

    ReplyDelete
  6. I have two cousins (not related to each other) who have mild CP. One is an adult, the other a child, and both are doing very well. CP is a very individualized condition, but typically, it does not get worse and various therapies can help strengthen affected muscles and maximize function.

    I would guess that Emma's CP is very mild, as she seems to be able to move her affected arm and grasp things easily with her hand. It's probably significant that the spasticity only shows up occasionally in her hand and arm. Identifying what triggers it should be helpful in bringing it under control.

    Emma doesn't appear to have a "lazy eye" which is very common with CP (both my relatives had this surgically corrected and wear glasses). It's great that Emma soon will be receiving PT - this really should help identify and build on her strengths and minimize her weaknesses, while helping her reach her potential.

    And yes, she is cute as can be in these latest photos! I love that sparkle in her eyes and her precious smile...

    Best wishes,
    Susan

    ReplyDelete
  7. Emma is wonderful no matter what!

    ReplyDelete
  8. Impressive... getting that info so quickly! Great job!!
    I'm sure you know, but CP is such a huge umbrella, that encompasses so many different brain issues/ traumas. I hope you get lots of good info from your neurologist. I think she is a cutie no matter what!!

    Blessings,
    Carla

    ReplyDelete
  9. I continue to pray for Ms. Emma as you all continue to learn more about her - more than makes her the special little girl that she is, and more that makes her a miracle girl! No combination of letters take away from the fact that she is a precious child of God, and a wonderful gift that He has given to you. She is such a cutie!

    ReplyDelete
  10. Meredith, you are an amazing mother !!! and Emma is a beautiful angel :D
    Many Blessings ~

    ReplyDelete
  11. that is what I thought, but having the answers will give you a plan. Even with the heart condition, you knew something was up, because look at Micah, standing, crawling, Emma is far more "floppy". However, kids with CP can do amazing things with therapy. Now that she is healing nicely and you have done all you can do from a medical/surgical standpoint, therapy is her next wave of hope. Hang in there and enjoy the fact God is giving you the answers to your questions. She can do this, you can do this, keep trucking! You can't fight a battle if you don't know the battle field. Now you konw where you are headed and you just need to keep fighting in that direction.
    Amy O.

    ReplyDelete
  12. The more knowledge you have the more help you can provide for Miss Emma. And Medicaid will surely approve you soon. A dual diagnosis of CP and Down Syndrome seem like a no-brainer.

    She has a great smile and bright beautiful eyes. What a joy she must be to you guys and an inspiration to those of us who see her via your blog.

    Jan

    ReplyDelete
  13. Meredith - What a beauty your little Emma is! She looks so happy and healthy :o) Thinking of and praying for you all!

    Michelle (RR)

    ReplyDelete
  14. I love the picture! I am in prayer for your family! She is so cute!

    ReplyDelete
  15. Meredith,

    You are such an inspiration to me! I have 3 children myself and am a full time student (on-line). I have been following your blog for a couple of months now and have watched Emma grow into the wonderful little shining girl that she now is. My husband has just lost his job and we have decided to make the leap of faith and move to Florida from Indiana to be closer to family. Do you have any suggestions as far as a church goes to attend? We are moving to the Rockledge area to start with. That's where my husband's parents live. Please e-mail me at sandysup@sbcglobal.net. I would also love the opportunity to get to know you better if that's an option.

    Yours in Christ,
    Sandy Sup

    ReplyDelete
  16. Meredith...
    While it probably was not wanted to hear or see - hopefully it will at least provide you with some comfort knowing that the "something" you thought was not right is legit.
    She is a beautiful little angel and is so lucky to have you as her mama!
    She does look so much happier since the surgery!

    Take care!
    Amy

    ReplyDelete
  17. What a happy girl! I'm so glad you have a diagnosis though, more "lables" stink but now you can move towards a direction of helping her get the right therapies that will help her to thrive and begin gathering information for yourself to more understand. God Bless you and your family

    ReplyDelete