So, to catch you up on our medical issues, Virginia's cough is no better. Actually, I would almost say it is worse. We all (Findley, me, her doctors) agree that she is aspirating, but we also agree that this doesn't totally explain the cough. It is a horrible, wet, body-shaking cough and it wears her out and makes eating next to impossible. It is the worst in the morning- it takes her about 2 hours to clear the stuff out of her lungs. She hasn't slept well in three nights, and I am so tired I feel like an unfit mother.
As you may remember, Virginia had a bad day in April where she had six seizures in one day. (Her first seizures in six years.) We doubled her seizure medicine from an almost nonexistent dose to a still-relatively-small dose. Then on July 2 she had another one. At that point, we doubled her medicine again. She is still on the low end of what is considered an effective dose, but realize she is taking 200% more topamax than she was in early April.
That being said, when she had the July seizure, the nurse at neurology suggested that her new allergy medicine could be triggering her recent seizures. When I looked back, she had started the allergy med ten days before that awful day in April when she had six seizures. So we took her off of it after the July seizure and she hasn't had another one.
But maybe she hasn't had another one because of her new level of topamax?
Here's why it matters. Her cough started around the time when we went up on her medicine. I am guessing it is somehow to blame- it is thickening her secretions, or making her so tired she's not swallowing as much. I don't know, but it's all I can come up with. The pulmonologist agrees with me, but not the neurologist. We see the neurologist on Wednesday and hopefully we can agree to go back down on the seizure medicine and see if this helps the cough. But obviously we don't want any more seizures either.
We are also going to try steroids this week to see if that helps with the cough. And maybe reflux meds, too. (But you can't try it all at once or you won't know what's helping.)
Virginia seems more frail to me than she ever has. I feel like most of what I do is take care of her. But in some ways, I think it is amazing how much our family does in spite of all the care taking. I know why, too- Virginia loves life. She loves people. She loves to be on the move. But I think we are entering a phase when she is going to need lots of holding. Which is fine by me- will someone just come entertain my other two?
We meet the GI surgeon who is going to put in her feeding tube next Tuesday, September 20th. I feel like he will schedule her surgery within a week or two of that date. Her birthday is October 3, so I think I will try to push for a date after that.
On a happier note, someone else in our family just had a birthday. Eliza turned two last Friday. My dad was in Baltimore for a meeting, so mom came to celebrate. You know the third child doesn't really get a party, but she didn't care. She got a Mickey balloon and a Scooby-Doo stuffed animal.
And just for comparison, here is someone else with his Mickey balloon on his 2nd birthday...
Eliza had a Mickey cake, too
You can tell that once I have a plan that works, I don't tend to change too much
Eliza got a baby and a baby stroller for her birthday. She didn't care a thing about the baby and instead put "Doo" in the stroller. I stuck the baby in a closet for Christmas.
Geegee and Daddo gave Eliza a sand and water table for her birthday. It is a big hit...
They like the table almost as much as the box it came in.
We had a surprise visitor yesterday. My dad was driving through on the way home from Atlanta. He had gone to a meeting of the Civil War Historical Railroad Society. (or something like that). For some reason, my mom doesn't usually go with him on these trips, but hopefully Eliza will be joining him soon.
But this is still Daddo's biggest fan...
I always hesitate before putting pics like these on my blog, but I want people to know it's not all gloom and doom over here. On Friday I hosted a surprise party for my friend Laura. She has wisdom beyond her years and has been there with us every step of the way since Virginia was born. It was so much fun to have her closest friends to dinner and celebrate every one of her 29 years!:) I even think she was genuinely surprised, too!
Thanks for making it to the end of a long post, authored by a sleep deprived woman. Please pray that Virginia's cough subsides and that she gets stronger. I also really want her off most of her seizure med- I think it is taking us in the wrong direction. One thing leads to another and I am trying to put the brakes on a downward spiral!