Thursday, October 13, 2011

Another fat lip

My poor little lady.  I think the new medication we started, which I was hoping would finally be the answer to our problems, is actually making her seizures worse.  It seems like she is totally blacking out instead of just a little blip.  On top of that she is having unbelievable tantrums that last so long.  She never did this before we started the new medicine.  So I will be calling the neurologist to discuss taking her off this medicine.  It is definitely not working.
These stronger seizures may not be caused by the medication and may just be the natural course of the progression of her epilepsy.  As I wrote before, the more and more of them I see the easier it is becoming to accept the surgery.  I hate seeing her body go limp over and over again, especially when she injures herself. 
I found a fantastic facebook support group through the Hemispherectomy Foundation.  I posted my situation have had a ton of response from families who have already gone through this.  Their stories and encouragment have been so helpful.  I know that our little girl may face some new challenges because of the surgery but the seizures will not go away on their own and are only getting worse.  She will be so much better off without all the medications and seizures. 
I just want to get on with it and get it all over with.....

Sunday, October 9, 2011

Cute smile to fat lip

Today was both wonderful and dreadful.  This morning we had some photos taken by my friend Stephanie Godfrey (Check out her blog too) and it went so well.  The location was awesome.  We did it at the Tuolumne County Museum.  There were fantastic spots to do the pictures with beautiful old brick walls (the old exercise yard of the previous county jail) and the lighting was just perfect.  My kids both totally cooperated and Stephanie was increadably patient and I am certain she got some fantastic shots.  I am dying to see them.  My in-laws came and did a great job at getting the kids to smile and laugh and we got some good pictures of them too.  I really don't know what I would do without them.  They are wonderful and my kids adore them.  So that was the good part of the day......

A couple hours later we were playing in the living room when Ruby suddenly had a seizure.  She must have completely blacked out because she went down straight on to her face and put her top teeth through her upper lip.  Not all the way through but I still had to pull the teeth out of her lip.  It was a bad moment for sure.  So now she is walking around with a fat lip.  Poor little girl.  It just makes me SO mad!  I am so angry at the seizures and it is just getting really frustrating.  I know that considering such a drastic surgery to remove half of her brain seems crazy and unrealistic, but I am getting to the point that I want to at least get the ball rolling.  It may not be that drastic but it may be.  Either way, she can not continue like this.  It makes me nervous all day just wanting to be within arms length in case she has one so I can catch her.  But obviously I can't do that.  She is 2 1/2 and wants to run everywhere.

I know I am going to deal with many fat lips, cuts, bruises, and such with Ollie.  But it is so different when it is from him playing and hers is from blacking out with a seizure.  It just makes me SO MAD!!  Did I already say that???  Well, it's the truth.  I am angry and feel so helpless.  I know there is nothing I can do and it is a horrible feeling when you know your child needs help and you can do nothing.  I am sure there will be many times in my life I will feel this way about my kids but it just hurts my heart to see her like this.

Someday these seizures will be gone.... Until then I will continue to vent my frustrations, anger, fear, and sadness to anyone who will listen or take the time to read this.

Saturday, October 8, 2011

They're back

It is so hard not to get my hopes up when we have a good day.  The new medication we started Ruby on worked great for the first couple days.  It really cut back the seizures to about one or two a day (that i noticed).  Now I am seeing them again and it is so frustrating.  I feel like every time I see another one it is like a slap in the face; a reminder of what is to come.  We will be going along with a fun day, without a thought of the impending surgery and then WHAM--- a sudden jerking reminder of reality.  I try to ignore them so that she won't get upset and so that I don't get upset but it is really difficult.  They do seem to be getting stronger and stronger and it just makes me realize that what we are doing is right.  We need to help her before it gets much worse.  I can't imagine seeing her have major seizures.  It really scares me that she may have one someday and I wouldn't know what to do. 
I have not lost all hope for this new medication.  We have still been building her up to the full dose so we will have to increase her to a full dose starting in a couple days so maybe there will be better control but the problem is that this medicine makes her so drowsy and really whiney, like worse than I have ever heard.  I hate that I have no idea what she is feeling since she can't tell me.  Tonight at dinner she was holding her head like it was hurting and then she had a seizure while sitting in her high chair.  I have heard that some people will have symptoms or indicators that they will have a seizure before it happens.  Maybe she starts getting pains in her head, I have no idea.  It is so frustraing. 
We still do not have an appointment for her EEG.  I got a letter in the mail from our insurance company notifying us that Ruby's hospital no longer is a "preffered" provider and so we couldn't go there.  I spent a half hour on the phone with the insurance company trying to find another place for her to get the tests done.  After that time the operator finally says something about how they are just waiting on the hospital to sign the contract for services and that they will most likely have it signed within the month.  I was in tears on the phone thinking we were going to have to find a new place for her tests and a new neurologist for her to finally tell me that it was just about the contract.  We have blue cross, so if that hospital didn't renew their contract they would be losing millions.  Now I just need to find out if they will pay for telephone appointments. (just looked- they don't)  We will still be getting a few different opinions.  I keep going back to the children's hospital in Boston.  It seems so far but I keep reminding myself that it is the best place in the nation (part of Harvard medical school) and is renowned for their pediatric neuro. department for seizures, strokes, and all other neurological problems.  I was looking at air fare and hotels/condos and it will cost SO much money but no matter what, if we have to go there, we will make it work: somehow.

Thank you all for your support and your interest in our little girl.  This is quite a difficult ride and is totally stalled out right now.  It is horrible just waiting.  I wish we could just get it over with and get on with our lives.

Saturday, October 1, 2011

Another new medication

Well, a bit of potential good news.  We started Ruby on another new medication to get rid of the seizures and except for two very little ones, we were nearly seizure free today.  There are usually about 20 or so.  This has happened before so I am trying not to get my hopes too high, but it would be so wonderful if we didn't have to do the surgery after all. 
The process of preparing for the surgery and getting all the second, third, etc. opinions does seem like it is going to take longer than I thought.  I was hoping to just get all the information we could, make a decision, and get on with it.  Now it seems that it could be over a month until we are able to get the PET scan, which has to be done before we even meet with the neurosurgeon and send away for a second opinion.  So, I guess I just need to try to relax a bit instead of being so amped up all the time.  I just feel like I am rushed to collect all the necessary information, find any potential clinical trials, research doctors and hospitals, and try to maintain a somewhat normal life all while Jason is away.  He has been gone for 11 days now but thankfully he will be home tomorrow.  This has been rough without him home.  I will be so happy to have him home.  Last night Ruby asked to give him a kiss before bed and it was just so darn cute.  Unfortunately she had to settle for me. 
 On a lighter note, Oliver is so funny.  His new trick....

Ruby loves to pretend talk on the phone to "dosh" (uncle Josh)