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.
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
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
Thinking of you both.
Kate x
I don’t really know what to say except that I am praying and I hope everything is okay. *hugs*
Praying for you, Tiara and your sweet family!
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
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!
Sending positive thoughts your way mama. Hope TT is OK.
¤´¨)
¸.•*´
(¸¤ Lanaya | xoxo
Raising-Reagan.com
Thinking & praying for you all.
Sending warm and happy thoughts your way! I hope the rest of the week gets better!
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
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
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.
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.