Tuesday, August 19, 2008

Discouraged.

Vivian had a big seizure yesterday around noon. It was the first episode I've witnessed since we came home from the hospital a month ago. It's discouraging to me because I've been tolerant of the negative side effects of the new medicine, believing it was really helping with the seizures. It has helped, no doubt, because we're seeing significantly fewer seizures than before, but I'd hoped that in exchange for the increased agitation, drowsiness and muscle weakness, we might be rid of the seizures. Unfortunately that doesn't appear to be the case.

Vivian's appetite has also disappeared. We've been through this before so I know a few strategies to combat it, but it's not fun. Vivian refuses all offers of even her most favorite foods, so I resort to feeding her while she's asleep. I combine Cream of Wheat with whipping cream and eggs and cook it. Then I alternate bites of that lovely concoction with spoonfuls of fruit and broccoli. Yuck, I know, but desperate times call for desperate measures. Amazingly, though, she will open her mouth on command and chew and swallow, all without seeming to awaken. She even tolerates my brushing her teeth afterward! Not ideal, but preferable to having bowls of food thrown at me when I offer them during waking hours. {sigh}

School starts on Monday. Please pray that Vivian's mood improves by then and that she climbs onto her bus willingly each morning. Otherwise I have to summon Will to help me retrieve Vivian from the bushes or the neighbor's yard and assist me in carrying her onto the bus. It's not pretty, but I think if I allow her not to get on the bus, I am rewarding the behavior, plus I may be late taking the other children to school if she similarly refuses to get into my car at that time. Also pray that being back in the school routine, Vivian will resume eating her favorite school lunch of a baked potato and grapes (and cake for dessert if she's been cooperative; she comes home and tells me proudly that she "learned" some cake on those days).

Sorry to vent, but thanks for listening. I so appreciate everyone's prayers and encouragement in regard to Vivian.

12 comments:

Amber M. said...

So, so sorry for your discouragement...but I can see why you would be. What a loving, devoted mother you are.

I will remember sweet Vivian in my prayers!

Laura said...

Thinking about you, Eloise. You are such a good momma.

JoAnn said...

Oh, sweetie, I am so sorry you are going through this. And sorry for poor Vivian too.

Holding you close in my thoughts.

JOANN

Ivy Lane said...

Eloise, You obviously don't know me, but I KNOW you must be a SUPER GREAT MOM! Your Vivian will be in my thoughts and prayers...and you too!

Paul and Robyn: said...

I am so sorry. I know how very frustrating medicine can be. You are in my thoughts and prayers!

Melissa said...

Eloise,

Vivian is so blessed to have you as her mother. And, your whole family is blessed to all have each other.

It's easy to get discouraged. You are human and you will have these feelings from time to time. I know how hard it is to not let it take over.

I don't know if you read my past post on how there is power in God's words. I wrote about the words Chazak v'Ematz, which means be strong and be courageous. These were God's words directly said to Joshua as he was preparing for his first battle.

Maybe that what illness and life's stresses are? They are our battles that we have to face, so that we can learn to be strong and courageous.

I have complete faith in you. I know that you will battle bravely.

If you ever need to talk, I'm hear to listen. Just let me know, and I will send you my e-mail address.

You and your family will continue to be in my prayers.

Many blessings!

Melissa

Melissa said...

Eloise,

Just a little something to lift your spirits. I have an award for you at Sunbonnet Cottage.

Melissa

Liz said...

I'll say a prayer for you and Vivian today. This is so frustrating, please know we're all sending positive thoughts your way.

Laura said...

I'm so sorry :(

Eleanor said...

You are my mommy hero, Eloise! The "practice of medicine" is just that, practice and best guesses based on years of knowledge and experience. SO frustrating for patients but thankfully there are some options available today for relief although I am sure it doesn't feel much like relief these days at your house. Thinking of Vivian and all your sweet family - hang in there, better days are for sure around the corner!

Tara said...

Thinking of you all. That has to be so hard and scary to see her go through all of that.

Erin said...

I am just catching up, Eloise... I had not idea of your struggles. I am sorry that you and Vivian must have such challenges. She is blessed to call you her mother... your patience and love for her are inspiring. I will certainly remember your family in my prayers!