Thursday, July 23, 2009

Finding a balance.

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Vivian had been doing so well. We were only seeing a couple of seizures a month, a huge improvement over the ten+ a week she was experiencing a year ago. Vivian had been much sweeter and more compliant. Life was good. Too good to last, I guess.

For about the past month Vivian has become increasingly agitated and aggressive. She has put up major fights when it was time to get on the bus for summer school. Two weeks ago at a family birthday dinner, it took Robert and me about 30 minutes of wrestling with Vivian in 100+ degree heat to get her out of the car, into her stroller and through the doors of the restaurant. After we finally thought we had her calmed down and distracted with a Madeline video on her iPod and some pages to color, we wheeled her to her spot at the table only to have her reach out and kick my sweet mother-in-law in the head as we passed by her chair. I was MORTIFIED, as you might imagine. Last week when I took Vivian to the dentist for a cleaning, she put up such a fuss that I resorted to sitting on top of her and restraining her hands, while one tech held her head still and another cleaned her teeth. Luckily she was screaming, so getting her to open her mouth wasn't an issue. The final straw came when she hit a precious little boy while boarding the bus last Tuesday.

I called Vivian's neurologist and told him about her regression in behavior. I relayed that even though we weren't seeing a lot of seizures, Vivian's behavior was completely consistent with past increases in abnormal brain activity. He told me that he suspected that Vivian's growth and the onset of puberty had likely upset her always precarious medication levels. After reviewing Vivian's most recent blood work results, he advised me to increase one of her seizure medications by a half a pill each morning.

This seemed to me a pretty minor adjustment, but egad, what effects it has had. I gave Vivian the first increased dose on Friday morning. Sunday she would not wake up until 2 in the afternoon, after sleeping for 18 hours! Then at night, beginning Sunday evening, she has experienced a complete loss of balance. If Vivian wakes up during the night, she falls and walks into things while making her way to the light switch in her room. I've resorted to sleeping with her several nights in an attempt to insure that she doesn't get up and hurt herself (she seems completely unaware that she is at all impaired).

I spoke to her doctor again yesterday, and he said to give it a few more days to see if her body adjusts. If it doesn't, we will have to modify either the timing or the dosage of her medication.

Pray that we arrive quickly at a suitable resolution. My sanity hangs in the balance.

23 comments:

Kappa Prep said...

Oh Eloise, how hard this muct be for you, Robert, Hockey Boy and Dots. I will be keeping you all in my prayers and will also be praying for Vivian's safety. PLEASE keep us updated!

Cote de Texas said...

I pray it works. You are a saint in my book. You have such a wonderful attitude and Vivian is the luckiest girl in the world to have you as a mother. Seriously. I am in awe of you.

Maggie said...

I feel for Vivian and for your whole family. Prayers for you all, that the medication to be adjusted to bring Vivian back into a state of equilibrium and you and your family to a place of sanity.

JoAnn said...

Oh, sweetie, my heart is just aching after reading your post.

I am holding you all close in my thoughts. You are the best!

L,J

Laura said...

I am so sorry, Eloise. :( I hope things even out...Now we know what you are talking about with these seizure meds!

JMW said...

Eloise, you, Vivian and your family are in my prayers. I hope that this new medication works and provides some healing and peace for Vivian - and for you as well.

Lucy said...

I will be praying for her and for you.

Debbie K. said...

Eloise, I was so sad to read what you have been going through with Vivian. My prayers are with you, Vivian and the entire family. May this sweet girl experience peace & joy once again with this medication adjustment.

~Debbie K.

Emily said...

I am sorry to hear you, Vivian and your family are going through this hard time. I pray that they are able to find something that helps Vivian quickly and for her safety.

Christie said...

oh, my friend...this is so hard to read!

Praying for a speedy solution for V and you

xo

Rachel said...

Oh Elise, I am so sorry you are going through this. I will be thinking of you, Vivian, and your hold family and hoping the few days helps and she gets back on track.

Erin said...

My heart breaks for you all... I am sad Vivian must go through this. The rest of you too. And I wish that I could do something to ease your burden. I can only pray I guess. I will say this... after the loss of our son, I sort of feel like I get extra points in the prayer department ;)... and I will put my whole heart into praying for you all. You remind me of Abe Lincoln's words, "All that I am or hope to be, I owe to my angel mother"....

Kristin Neely said...

How very stressful and scary this must be for you all. I hope Vivian's new medication dose will even out. Keep us posted, and know that we are thinking about you.

Pearls To Hide My Neck said...

Hi, Eloise. Many of us get so wrapped up in our own lives that we forget that others are dealing with the day in day out stress unlike anything we can comprehend. I hope writing about it helps a little and that you know we are all here to "listen."
I'm not far from you so let me know if there is ever anything I can do to help you out. Seriously!

Diane said...

I have read your blog and enjoyed hearing about you and your family for awhile, but just had to post tonight and let you know that you are in my prayers. I so admire how hard you work to keep Vivian involved and give her the best possible life. I am so hoping this medication adjustment works!

pennythequeen/queeniep said...

I have just spent the hour reading you blog. I will remember your sweet daughter Vivian in my prayers. I taught Special Needs for 23 years prior to retirement this year. She is adorable!
Blessings

Ruby's Fairy Godmother said...

Eloise, I am praying for you, your family and Sweet Vivian and her little body. Please keep us posted. We are hear to listen and help!
Norah

Ruthie said...

Poor Vivian...how tough it must be on the entire family.

I do have a question if you wouldn't mind answering. What type of stroller do you use for Vivian? We have a five year old with CP and Autism who has grown out of hers.

tami said...

Praying for you and your family. This just has to be hard on all of you.

Take care, God loves you-

pink green & southern said...

Praying for you and your friend...

pink green & southern said...

P.S. I am in awe of what an amazing mother you are :)

Preppy Pettit said...

Oh dear! I will pray for all of you!

The Mrs. said...

Well, I blame the hormones for everything. Poor Viv. I know this is so hard for you too. I will pray for sure.