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tiffani goff

tiffani goff

tiffani goff at home

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Not sure what is going on…

Oct. 01, 2013

tiffani goff at home

Not sure what is going with Tiara but she still isn’t quite right.  This morning she fell right back to sleep after her meds and wasn’t interested in going for a walk.  When she woke up she was super unsteady of her feet and was having a hard time walking.  We made a quick trip to Target before her teacher came at noon and she could barely make it into the store.

Half an hour after her teacher came, she curled up on the couch and started to fall asleep.  Her eyes were darting from side to side so I knew she was having a seizure and just needed to rest, so we ended her school day early.  She only works with her teacher for an hour at a time but 30 minutes was long enough today.

tiffani goff at home
You can see it in her eyes, she doesn’t feel well.

Once her teacher left I checked her oxygen level and it was hovering around 90-93, not great numbers, so I put on her oxygen.  So based on her history there are a few possibilities as to what is going on with her.

1.  She aspirated when she vomited during her seizure on Sunday and is developing a bacterial pneumonia which is why she is having increased seizure activity.  OR

2.  Worst case scenario she is having more seizures for no reason at all.  Through out her life, her seizure activity will remain steady and then for some unexplained reason she will have an increase in seizures and the same meds will no longer work.  Most people with intractable epilepsy suffer through these changes in seizure activity and constantly have to adjust their medications.  It’s as if their body adapts to the meds and then they no longer work, so you need to make changes in dosages and medications.  Unfortunately for kids like Tiara there aren’t many options for making changes because her doses are so high and she is already on 5 seizure medications and has tried every possible combination.

So I am praying that she is getting sick and it is nothing more.  

I have seen a few other signs which indicate she could be headed back to how she was prior to her brain surgery and to be truthful I am terrified. 

As we were driving home from Target today I was thinking about her first brain surgery and wondering if I could ever take the risk of putting her through it again.  It was so weird because she looked at me and said “Ouch, No hurt, no hurt.  Hold my hand, hold my hand.”  It was if she could read my thoughts.

“Don’t worry TT, I will always hold your hand.”

 

xoxo tiffani

tiffani goff at home

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Category: daily life with tiara Tags: tiara & special needs

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Comments

  1. Janine Huldie says

    October 1, 2013 at 4:51 am

    Tiffany, my heart was breaking at that last part and I definitely think she knows you pretty well at this point and might even be able to sense what you are thinking. I am so hoping that she is just coming down with something and medication and rest will help and not that her meds are nots working and need to be adjusted. Keeping Tiara in my thoughts and prayers now and sending god vibes your way!! 🙂 xoxo

  2. Kate says

    October 1, 2013 at 7:10 am

    Thinking of you both.

    Kate x

  3. Sarah says

    October 1, 2013 at 8:29 am

    I don’t really know what to say except that I am praying and I hope everything is okay. *hugs*

  4. Courtney Mitt says

    October 1, 2013 at 8:34 am

    Praying for you, Tiara and your sweet family!

  5. marcy says

    October 1, 2013 at 9:30 am

    Tiff,
    I always try to have something positive to share, some light to shine on the situation you are talking about. But I’m just without words. (Almost)

    All I have to say is that in all my 20+ years of working with special needs families, I have never met a family like yours. Tiara has had the absolute best possible care from you at every turn. Her life span and her quality of life is at its very best because of you and Lou and the girls. I worry about how worn out you are, but then realize I would be doing exactly the same thing. And the love, friendship (and humor) and partnership that is shared between you and Lou blows me away every time you share something like this. A true example of God’s goodness.

    As I have said before, when all else fails get down on your knees and surrender this to God. And I’m sure you already have. I have great Faith that this will lead to the outcome He has planned, and I ask that His love comforts you through whatever is next.
    xoxo
    Marcy

  6. Sylvia says

    October 1, 2013 at 1:15 pm

    I’m so sorry to see this. I know what you are feeling. I’ll be praying that what ever is causing it goes away like right now!

  7. Lanaya | Raising Reagan says

    October 1, 2013 at 1:43 pm

    Sending positive thoughts your way mama. Hope TT is OK.

    ¤´¨)
    ¸.•*´
    (¸¤ Lanaya | xoxo
    Raising-Reagan.com

  8. Sheila Martinez says

    October 1, 2013 at 3:51 pm

    Thinking & praying for you all.

  9. betsey riedl says

    October 1, 2013 at 4:08 pm

    Sending warm and happy thoughts your way! I hope the rest of the week gets better!

  10. Lisa says

    October 1, 2013 at 6:32 pm

    Thinking of u and TT. Deb had three aspiration pneumonias last year.:( will be praying and sending positive thoughts. Deb too is maxed on her seizure med but she only has 2-3 grandmals a mnth now so we consider that a blessing. Keep a watchful eye on her symptoms, deb has had a lot of surgeries but I know u will:) hugs

  11. Stacie says

    October 1, 2013 at 7:41 pm

    You are an AMAZING mother Tiffani! I hope Tiara’s feeling better and that it’s just a tiny blip in the road. Hugs, Stacie xo

  12. Jamie@southmainmuse says

    October 1, 2013 at 7:51 pm

    Dear Tiffani, I’ve got know answers but will keep praying. Try not to worry. I know — easy for me to say. I pray that all is well. You and Tiara are in God’s perfect control.

  13. darcy matheson says

    October 1, 2013 at 10:52 pm

    You can tell by her eyes that she is not her fiesty self. I hope that it ends up not being serious… but a momma’s instincts are rarely wrong. So, gear up and stay strong. We will be holding our breathe and praying that everything works out for you all.

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Who is tiffani?

Mom, Wife, author of Loving Tiara, retired home stager, and chronic volunteer. I laugh when I'm happy, nervous, or stressed, so basically, I'm always laughing, and you can hear me from down the block if the windows are open. I love to swear even though it isn't ladylike, and I'm brutally honest, but in a super nice way, or so I think? I tend to roll my eyes, and apparently, my face is very expressive because even when I don't open my mouth, everyone knows what I'm thinking. My hubby and I are homebodies; I'm obsessed with always doing the "right thing " and taking care of my skin. I love learning, am always trying to evolve as a human being, and am a bit of a perfectionist. Let's have some fun! xoxo tiffani
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