This time last week was bad. Non stop seizures, tons of meds, no sleep for me kinda bad.
This past week has been much better, thankfully!
On Monday we upped her clobazam to 5mg in the morning and night. Adding that night dose has made such an improvement with her seizures.
Before clobazam she was having a bad day, recovery day, good day and then start over. All week. A horrible cycle.
This past week she has had one bad day and it was not "that" bad.
She seems more alert and interactive. It really makes me wonder if she wasn't having more seizures that we did not see that was keeping her in a fog.
Little things like making a face at her gets a smile out of her (That means she is seeing more) I was bouncing her in the bed and she was giggling(used to she would crack a smile at best) Her appetite is tremendous! We are watching her calories close to she dose not gain too much weight.
She is also much more vocal! The funny sound she is making melts my heart. :)
She is also developing some new reflexes. Her OT is pretty excited about these. I need to do more research on them to understand better but from what she said it's a good thing!
Oh, and she did this too ;)
Joe was not holding her he was just on stand by in case she tipped over. She held 4 point for about 15 seconds. This is BIG! We have been working on her arm strength for a while and I think it's starting to show!
As I sit here watching my girl seize I am brought to tears.
In spite of valium, clonazepam, ativan, clobazam, and phenobarb (some multiple doses) she still seizes.
This means Joe and I sleep in shifts and more than likely we won't be going to church in the morning.
I have a very close knit group of lifelong friends on facebook in my infantile spasms group and tonight I learned of a sweet girl at the end stages of her disease.
Yesterday, I heard of a sweet little boy that passed away, most likely, due to a seizure in his sleep.
Brave Liam is still in the hospital on bipap now. He has been on a ventilator for some time now. His last MRI shows atrophy in his brain stem.
These families have to make horribly painful decisions for their children.
I did not choose this life, nor do I want it. I would do anything to heal my daughter.
I don't want to have my family so fractured that I go a year without seeing the people you think would be there for you the most. I don't want Emily to go the rest of her life not knowing some of the closest family members.
I don't want to have so many people in and out of my house during the week. I don't want to know all the best medical supply companies.
I don't want to have to have a neurologist, cardiologist, opthamologist, and a nurse case manager.
I don't want a feeding pump on a pole next to my daughters crib.
I don't want to have to drive 2 hours to have Emily fit for a wheel chair. I don't want to have to fight over a parking space in front of my apartment and I don't want the handicapped tag checked with the word permanent that comes with said spot.
I begged and pleaded for this cup to pass by. God wanted us to have all of this. I don't know why, I may never know.
What I do know is God is the same before all of this and He will be the same after.
I run my fingers through her fine, wispy hair and I know she is what I want.
I love her more than I ever thought possible.
Some days are harder than others. Today is hard. Today I am mad at the crazy parking space lady. I am mad at selfish family members who I will never be able to change. I am just mad.
I have that right.
So, for now I will cry and vent and cuddle with my seizing girl.
We went from just a hand full of seizure per week to 60-80 on one day, resulting in multiple doses of emergency meds and multiple calls to her neuro.
All day seizures for Emily equals no sleep. Most kids sleep a lot after seizures but not Emily.
Just last night she only slept maybe 4-5 hours and none of that was in a row.
She just had a sleep deprived eeg to see whats going on. When we do a sleep deprived eeg Emily can sleep from 11pm until 4am. I have to wake her up and keep her awake (fun)
We did a really good job, both of us were ready for a nap when we got home.
Her eeg showed an increase in seizure activity compared to the last eeg. There are some other changes too and she is already scheduled for a brain MRI to see whats new.
She did just pop another tooth through but she is still having daily seizures so that rules that out.
She also had another UTI when her seizures picked up, we treated that and did a recheck and her urine is clean now, so that rules that out as well.
While we are on the subject of UTI...
Emily has had several and while we do the very best we can to prevent them, (keep her well hydrated, clean, probiotics ect...) she keeps getting them.
Kids like Emily with low muscle tone can have bladder reflux where the urine goes back up into your kidneys and causes infections.
Our pediatrician suggested we do a kidney ultra sound to check for damage. If anything showed anything we would do a more invasive test.
Thankfully it was normal.
She was such a good girl during testing!
So here we are. Back to the drawing board.
We are waiting on new medicine from Canada called clobazam.
It is not FDA approved in the US, yet.
I just want to take a minute and say how thankful I am for Emily's neuro.
He makes himself available to us all the time. We have his cell phone but for after hours I don't want to bother him :) The on call neuro called him and within minutes I had a call from him wanting to know why we did not just call his cell phone to begin with.
It makes me thankful to know that someone cares for my daughter so much. He does not have to do that.
Please pray that this new medicine will help Emily.
I hate trying a new medicine, especially with all the recent development she has had.