Stephanie Vetne

Life, Journaling, Creativity, and Lessons I've Learned

Wow.

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Steph

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Okay, wow, you guys. Thank you. Seriously, thank you so much for all of your comments and support.

We did get the EEG results back today and they are normal as well.  Good news is that…well…the EEG is normal. Bad news is that we don’t have enough information for a diagnosis. The thinking is that it’s either a seizure disorder or perhaps complex migraines that can set off a seizure. The pediatrician is leaning towards a seizure disorder, though.

The next step is to take her to a neurologist. The pediatrician is expecting the neurologist to want us to wait 1 – 2 months before our appointment so that we can observe her and document any headaches or patterns in her behavior. If she has another seizure, obviously that might speed up the process, though. I was able to meet with the school nurse (love that their school has a full-time RN on staff) and her kindergarten teacher so everyone at school is up to speed. Her teacher will keep a log of any headaches or spaciness or other behavior as well. I will also be hearing from the neurologist’s office myself next week and will have a chance to ask more questions and receive any other information I might need.

The good news is that this is probably very easily treatable and might even be something that she will outgrow. The bad news is that this just sucks right now.

I am feeling much better after today, though. After spending most of the morning talking to the doctor and then meeting with the school nurse and then her teacher, I feel better prepared for what’s going on. It’s not going to be easy to drop her off at school for full-day kindy, but I know I have to. And Wendy told me that I have to be at least two blocks away for it to count as "leaving" her at school. Dang it – you mean sitting outside in the shrubs doesn’t count? :p

Oh, and to those of you who might be confused – and believe me, I am, too some days – this is not Emily who is 8 and was diagnosed with diabetes last fall. This is my 5 yo dd, Elizabeth.

Thank you. And thank you again. And again. And again.

The support means so much to me.

46 responses to “Wow.”

  1. slammie Avatar
    slammie

    GIANT HUGS and P&PT to all of you. Hopefully it’ll be something that she does outgrow….

    Reply
  2. slammie Avatar
    slammie

    GIANT HUGS and P&PT to all of you. Hopefully it’ll be something that she does outgrow….

    Reply
  3. kimber mcgray Avatar
    kimber mcgray

    Hug Steph.
    Sounds like you have a great support system at the school.
    Now get out of the shrubs. 🙂
    Hugs to ELIZABETH too. (Sorry for the miss name last time.) 🙁
    kimber

    Reply
  4. kimber mcgray Avatar
    kimber mcgray

    Hug Steph.
    Sounds like you have a great support system at the school.
    Now get out of the shrubs. 🙂
    Hugs to ELIZABETH too. (Sorry for the miss name last time.) 🙁
    kimber

    Reply
  5. karen Avatar
    karen

    There’s nothing worse than worrying about the health of your child. So glad the tests were normal. Neurologists are smart and I’m sure you’ll get some answers! Stay strong!

    Reply
  6. karen Avatar
    karen

    There’s nothing worse than worrying about the health of your child. So glad the tests were normal. Neurologists are smart and I’m sure you’ll get some answers! Stay strong!

    Reply
  7. Wanda E. Santiago Avatar
    Wanda E. Santiago

    So happy the EEG was normal. Sending you my love and prayers!! Hugs Wanda

    Reply
  8. Wanda E. Santiago Avatar
    Wanda E. Santiago

    So happy the EEG was normal. Sending you my love and prayers!! Hugs Wanda

    Reply
  9. sherry steveson Avatar
    sherry steveson

    I will continue to think of you guys but I’m glad to hear that you are finding a comfortable place within all the craziness. Hugs again to you both.

    Reply
  10. sherry steveson Avatar
    sherry steveson

    I will continue to think of you guys but I’m glad to hear that you are finding a comfortable place within all the craziness. Hugs again to you both.

    Reply
  11. Susan Avatar
    Susan

    good news on the EEG’s Steph.
    keeping you and Elizabeth in my thoughts

    Reply
  12. Susan Avatar
    Susan

    good news on the EEG’s Steph.
    keeping you and Elizabeth in my thoughts

    Reply
  13. Dawn (rn4jchrist) Avatar
    Dawn (rn4jchrist)

    Hugs and prayers Steph for you and your family! Hang in there. I’ve realized from last year, that you are one strong lady!

    Reply
  14. Dawn (rn4jchrist) Avatar
    Dawn (rn4jchrist)

    Hugs and prayers Steph for you and your family! Hang in there. I’ve realized from last year, that you are one strong lady!

    Reply
  15. MargieH Avatar
    MargieH

    {{{BIG hugs}}} to you and your family! Thanks for posting an update on E and hope that you all get to the bottom of this…so hard! Continued thoughts & prayers to you all!!!! MargieH in Chicago

    Reply
  16. MargieH Avatar
    MargieH

    {{{BIG hugs}}} to you and your family! Thanks for posting an update on E and hope that you all get to the bottom of this…so hard! Continued thoughts & prayers to you all!!!! MargieH in Chicago

    Reply
  17. Lisa Avatar
    Lisa

    Steph, I’m so glad you had some positive news! I’ve been thinking about you and the family constantly! Hang in there!

    Reply
  18. Lisa Avatar
    Lisa

    Steph, I’m so glad you had some positive news! I’ve been thinking about you and the family constantly! Hang in there!

    Reply
  19. Mary Rogers Avatar
    Mary Rogers

    That Wendy is such a smart girl!! and she is right Steph…..you have prepared the staff to handle this (should the need arise) in your absence…
    Two of my younger siblings had a seizure disorder when they were young, both have completely outgrown it….I am pulling for you and Elizabeth and you continued path for discovery and recovery….
    Have a wonderful weekend…..love you bunches…I will try and call you sometime tomorrow or Sunday.
    xoxo
    Mary

    Reply
  20. Mary Rogers Avatar
    Mary Rogers

    That Wendy is such a smart girl!! and she is right Steph…..you have prepared the staff to handle this (should the need arise) in your absence…
    Two of my younger siblings had a seizure disorder when they were young, both have completely outgrown it….I am pulling for you and Elizabeth and you continued path for discovery and recovery….
    Have a wonderful weekend…..love you bunches…I will try and call you sometime tomorrow or Sunday.
    xoxo
    Mary

    Reply
  21. Angie Avatar
    Angie

    Hi Steph,
    I am glad that the news you have received is optimistic. I will continue to think of Elizabeth. Keep us updated!
    HUGS!
    Cupcake

    Reply
  22. Angie Avatar
    Angie

    Hi Steph,
    I am glad that the news you have received is optimistic. I will continue to think of Elizabeth. Keep us updated!
    HUGS!
    Cupcake

    Reply
  23. stephanie barr Avatar
    stephanie barr

    Hi Steph,
    Just wanted to give you a piece of advice that was given to us. Keep your video camera handy. Its not easy to do or to remember to tape a seizure if it happens, but it will help the neurologist. EEGs can only detect seizure activity for a short window of time after it occurs & if your neurologist is like ours, it’s difficult to be seen in that window of time. If you have video of the “event” (as they called it in our case b/c it was never determined they were true seizures) the Drs. can see for themselves & it helps in their diagnosis.
    Hugs & Prayers for you all.

    Reply
  24. stephanie barr Avatar
    stephanie barr

    Hi Steph,
    Just wanted to give you a piece of advice that was given to us. Keep your video camera handy. Its not easy to do or to remember to tape a seizure if it happens, but it will help the neurologist. EEGs can only detect seizure activity for a short window of time after it occurs & if your neurologist is like ours, it’s difficult to be seen in that window of time. If you have video of the “event” (as they called it in our case b/c it was never determined they were true seizures) the Drs. can see for themselves & it helps in their diagnosis.
    Hugs & Prayers for you all.

    Reply
  25. PhotohappyCdn Avatar
    PhotohappyCdn

    Hey Stpeh,
    Glad that you have an action plan. Everything will work out and yes it is very treatable. Lets hope she outgrows it, but if not, as long as the meds work, her life will be as normal as anyone else’s. Keep up the positive thinking!
    Keeping your family in my thoughts and prayers.
    P.S. Hiding in the bushes unfortunately does not count! LOL (Glad to see you still have your sense of humour!!)

    Reply
  26. PhotohappyCdn Avatar
    PhotohappyCdn

    Hey Stpeh,
    Glad that you have an action plan. Everything will work out and yes it is very treatable. Lets hope she outgrows it, but if not, as long as the meds work, her life will be as normal as anyone else’s. Keep up the positive thinking!
    Keeping your family in my thoughts and prayers.
    P.S. Hiding in the bushes unfortunately does not count! LOL (Glad to see you still have your sense of humour!!)

    Reply
  27. Michele Bohman Avatar
    Michele Bohman

    This is the first time I’ve seen your blog, but I have to say that your ‘Baby Jack-Jack’ layout may be the cutest thing ever. And your children are absolutely beautiful!!
    Take Care – again, Michele

    Reply
  28. Michele Bohman Avatar
    Michele Bohman

    This is the first time I’ve seen your blog, but I have to say that your ‘Baby Jack-Jack’ layout may be the cutest thing ever. And your children are absolutely beautiful!!
    Take Care – again, Michele

    Reply
  29. Michele Bohman Avatar
    Michele Bohman

    Hi Steph. Just came across a link to your blog from a post on 2Peas and I happened upon what you and your family are going through. I, too, suffered from seizures as a child. I was 6 years old when I was diagnosed with petit mal seizures. I had a bit of a struggle with it in the beginning, but was able to adapt. Thank goodness these types of seizures rarely turn into a diagnosis of epilepsy, I hope and pray that you get this news as well. Although I had to focus a bit more during school and homework always took me longer than it should – I ended up okay. I pray that all goes well with your daughter.
    Take Care, Michele

    Reply
  30. Michele Bohman Avatar
    Michele Bohman

    Hi Steph. Just came across a link to your blog from a post on 2Peas and I happened upon what you and your family are going through. I, too, suffered from seizures as a child. I was 6 years old when I was diagnosed with petit mal seizures. I had a bit of a struggle with it in the beginning, but was able to adapt. Thank goodness these types of seizures rarely turn into a diagnosis of epilepsy, I hope and pray that you get this news as well. Although I had to focus a bit more during school and homework always took me longer than it should – I ended up okay. I pray that all goes well with your daughter.
    Take Care, Michele

    Reply
  31. Maria Avatar
    Maria

    You and your family are totally in my prayers. You’ve been through so much this year and while you’re amazingly tough, you must be really tired:) Take care and know that I’m thinking of you.

    Reply
  32. Maria Avatar
    Maria

    You and your family are totally in my prayers. You’ve been through so much this year and while you’re amazingly tough, you must be really tired:) Take care and know that I’m thinking of you.

    Reply
  33. wendy Avatar
    wendy

    get some rest sweetie….and good luck tomorrow.

    Reply
  34. wendy Avatar
    wendy

    get some rest sweetie….and good luck tomorrow.

    Reply
  35. rachel Avatar
    rachel

    hang in there! good news can only get better and get you through these tough times! HUGES hugs for all of you!

    Reply
  36. rachel Avatar
    rachel

    hang in there! good news can only get better and get you through these tough times! HUGES hugs for all of you!

    Reply
  37. Charrie Avatar
    Charrie

    Oh Steph, I’m so sorry you’re going through such a rough time. Anything that happens to our babies is heart wrenching for a mother to endure, but remember this verse…I can do all things through Christ who strenghtens me. Praying God will wrap His great big arms of love around you right now and bring you comfort and peace and wisdom to know which direction to go next. Your DML friend.

    Reply
  38. Charrie Avatar
    Charrie

    Oh Steph, I’m so sorry you’re going through such a rough time. Anything that happens to our babies is heart wrenching for a mother to endure, but remember this verse…I can do all things through Christ who strenghtens me. Praying God will wrap His great big arms of love around you right now and bring you comfort and peace and wisdom to know which direction to go next. Your DML friend.

    Reply
  39. Peg Graham Avatar
    Peg Graham

    Steph-
    I know how hard this must be for you and your family. Hang in there. It’s so hard to just understand….all we as parents want to do is make our children well and it’s so hard when we feel helpless and have to just wait. Going through everything with Porter still…I cry a bunch and try to laugh to balance things out. Talking helps…a little.
    Know that I am thinking of Elizabeth AND Emily too, for that matter. Praying and hoping answers are easily found and your babies will heal and feel better daily.
    My heart is with you,
    Peg

    Reply
  40. Peg Graham Avatar
    Peg Graham

    Steph-
    I know how hard this must be for you and your family. Hang in there. It’s so hard to just understand….all we as parents want to do is make our children well and it’s so hard when we feel helpless and have to just wait. Going through everything with Porter still…I cry a bunch and try to laugh to balance things out. Talking helps…a little.
    Know that I am thinking of Elizabeth AND Emily too, for that matter. Praying and hoping answers are easily found and your babies will heal and feel better daily.
    My heart is with you,
    Peg

    Reply
  41. Julia Avatar
    Julia

    Big hugs from a Mommy who almost lost her daughter to asthma! I’ve been there and seen things I never wanted to see with my child! And I too hated every minute of leaving her at school and trusting things would be okay. But 6 years later and we’re doing okay..learned alot..still overprotective but that’s okay. HUGS!!!!!! Julia

    Reply
  42. Julia Avatar
    Julia

    Big hugs from a Mommy who almost lost her daughter to asthma! I’ve been there and seen things I never wanted to see with my child! And I too hated every minute of leaving her at school and trusting things would be okay. But 6 years later and we’re doing okay..learned alot..still overprotective but that’s okay. HUGS!!!!!! Julia

    Reply
  43. StefHamilton Avatar
    StefHamilton

    Hooray for good news! I hope the news just keeps getting better. 🙂

    Reply
  44. StefHamilton Avatar
    StefHamilton

    Hooray for good news! I hope the news just keeps getting better. 🙂

    Reply
  45. Kim Moreno Avatar
    Kim Moreno

    Big hugs Steph.. hang in there. I’m so sorry you are having to go through all this, I can only imagine how hard this is. (((HUGS))))

    Reply
  46. Kim Moreno Avatar
    Kim Moreno

    Big hugs Steph.. hang in there. I’m so sorry you are having to go through all this, I can only imagine how hard this is. (((HUGS))))

    Reply

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