Ahh Monday...you always pack a punch and today was no different. The morning started with driving through a torrential downpour to get Miss Courtney to her big appointment with her Neuro team. Always fun driving a high topped wheelchair lift van though high winds and rain. Too.much.fun.
Anyhoo for those of you following the lovely medical journey of the feisty and fierce Miss Courtney, here is the latest. As you know we were in the hospital last week after suffering a series of cluster seizures that she had trouble breathing through. These seizures happen from time to time but I will admit that when she struggles with the breathing it freaks me out. I am OK in the moment but the aftereffects stay with me for some time.
The EEG she had in the hospital showed some "spikes" or as her Neuro calls them "quiet seizures" which are when the brain seizes but you don't see it. Her body doesn't go into the tonic clonic jerks so you don't know that she is seizing. This is not the best news one could hear, especially given how well she has been doing lately. She has also lost weight, more than we initially expected. These factors are creating some difficulty with managing her meds.
She is already maxed out on two of the three meds she tskes. The third is a new medicine we started her on in February and we aren't sure how she will handle any increases. So today it was decided that we would slowly increase this third med over the course of the next two weeks. We gave her the first increased dose this evening and we will be watching closely praying that this will work and give our girl a little peace.
These seizures are not going away. Courtney's issues begin and end with controlling her seizures. She will have these little friends with her for the remainder of her life, so we need to deal with them and all the issues they bring. It's never an easy decision for me to increase meds. You have to look at the whole picture and how it will trickle down and affect the rest of her organs. o far her liver and kidneys are doing well and her ammonia levels are stable. She is doing everything she should be for the team to feel comfortable with recommending this increase.
So we move forward and pray that this helps and doesn't further complicate matters. Only time will tell.
She is still a fiery little diva, my girl. This evening when we were giving her a g-tube feeding, ending with a dose of lactulose for constipation, she grabbed her tube and pulled it out spraying the thick syrupy substance all over the living room. it got in her hair, on her clothes, on the sofa, a few of Jerry's newly ironed shirts and the carpet. YAY! Just what I wanted to do tonight, give her another bath, clean carpets and do more laundry. WAhoo! I do love it when she tries to help us feed her. love.it.
Yeah. So there you have it. A Monday at Chez Lenaburg with all the thrills and chills. I know. You really do envy me. "Tis such a glamourous life I lead. The stuff dreams are made of fer sure.
Let's talk Courtney's Room Makeover shall we. You beautiful people you!! How do we say thank you?? We have met the goal to get everything for her room including the comfy chair!! Wahoo!! The rug will take longer since I did not price that one correctly. It's not necessary, so we will save our pennies for one.
So today we say goodbye to the old and begin to prep for the new. It was a monsoon outside today so instead of getting the paint and begin that portion of the room makeover, we did all the prep work. The pictures came off the walls, there was patching and cleaning of the walls. We purchased the cafe rods for the window curtains and gathered all the paint supplies. Tomorrow we will buy the paint for the walls and ceiling. We will address painting the two dressers on Wednesday. One painting project at a time.
Tonight I will layout the fabric for the window curtains so that when we are done painting the first coat, I will move on to the sewing. I am trying to be very smart about time management with this project. I am determined to get this done this week. The whole shebang...done...by Friday. Of course I hope Jerry get's called back to work, but in the meantime we shall get 'er done.
Thanks to everyone who contributed to this project. I can't wait to show you the results. I hope you like it. I know I am really looking forward to seeing it all come together.
So goodbye old room and hello new beginnings...today I am grateful for:
#1546 - #1563
** pork chops and scalloped potatoes
** when friends return from vacation so you can spend time catching up on life
** valet parking at the hospital on a rainy day
** searching for the perfect "comfy" chair
** chai tea latte shared with my hubby
** an unexpected visit with Grandma Green
** steam irons and spray starch
** a charged camera battery
** skinny jeans that I can zip without sucking in my fluffy parts
** watching 1940's musicals while the rain pours down
** beginning to plan a "homemade" Christmas...I heart lists...they bring me peace of mind
** being at peace with possible BIG changes in life
** prayer...it has a way of calming the soul
** listening to my daughter laughs...best.sound.ever.
** opening the windows again to enjoy the cooling temperatures
** folding laundry...crazy no?
** reading nighttime stories to my girl
** YOU and YOU and YOU!!
Labels: #1000 Gifts, 31 Days of Gratitude, caregivers, catholic family life, Courtney's Room Makeover, Courtney's World, special need parenting, special needs children