Severe Brain Damage - How Did This Happen?

Bye Bye Phenobarb

Trystyn had a 24 hour EEG on December 15 and 16th.  It was totally boring being in the hospital for that long but the outcome has made it the best hospital stay of our lives.  Trystyn is showing no signs of seizures.  So after talking to the doctor we are now slowly but surely weening her off the Phenobarbytol.  I am really excited and really scared about this.  Along with weening her off came the back up plan if she were to have another seizure.  According to the doctors, kids with brain damage of the severity that she has it are at a much higher risk for seizures then your "normal" kids. So we have diastat which is the medicine that you give to your child if they are having a seizure for longer than five minutes.  Obviously, if she starts having one we are to call 911 right away.  The weird thing is that we have not seen her have a seizure since she was in the hospital, so they could be totally different now.

I really just can't wait to see how she will be with out the Phenobarb.  I was really really wanting to get her off of it because I have heard nothing good about it.  Even her new Neurologist stated that if we found she were still having seizures then we were going to change her seizure meds anyway.  Because according to her (doc), no child should be on it past the age of 2.  Which is approaching quickly for Trystyn.  My greatest hope is that we will see a world of change in her progression because of not being on the phenobarb anymore.

We have 2 1/2 more weeks to go and she will be free of the seizure medicine.  I will let you know how it goes from there.

Strabismus Surgery

On December THC Trystyn had her first Strabismus surgery.  She may need 2 more.  The surgery went really well and as of her check up she did great on the test the doctor gave her.  What test this was I really don't know because my husband took her to the check up.  But, the doctor told her to tell me that she did really well.  I did well when they took her back to do the surgery.  Not like when they took Rain back to put the tubes in his ears.  The only extremely odd thing for me was when I got to see her in the recovery room.  She looked like she did when she was in the pediatric ICU when she was sick, really I almost lost it.  Anyway, I didn't after calming myself down.

Her eyes were blood red where the whites were and man did this make her blue eyes even bluer.  They were gorgeous to look at.  Well besides the oddness of the red part.  She has healed extremely well and we have another check up in April.  There is a great chance that she will have to have the surgery at least 2 more times.  This is fine especially since now I now what to expect.  Hopefully, it helps with her sight at least somewhat.  At least she won't see things in double, of the little that she sees anyway.

Just wanted to let everyone know that if you are planning for your child to have this surgery, don't fret, it really wasn't that bad - well for me anyway.  Although, I don't think it was that bad for her either because she didn't complain one bit.

The Time Is Near

Well, my personal work history is quickly coming to an end.  I have had a job since I was sixteen years old. To say that I am a little bit scared is a complete understatement. January 30, 2009 will mark the end of being in the workforce for me.  I will officially become a "Stay at home Mom".  For so long I have been a full time mom with a full time job, that I am now wondering how this new path in my life will be.  I know that really I will be just as busy as I have always been, but still cutting out my one outlet into the adult world kind of scares me. 

Trystyn therapists will probably end up getting really sick of me.  I already talk their ears off when I see them, which really is not that much.  As of right now I see the physical therapist once a month and the visual therapist once a month.  All of Trystyn's occupational therapy is taking place at the daycare she attends.  I have only spoken to her occupational therapist over the phone and by email and have never actually met her in person.  This is one of the many reasons that I am leaving the work force.  With Trystyn's new neurologist appointment came the statement that it is best to hit the therapies hard in the first five years of her life.  I am wanting to take full advantage of that.  Trytyn will be receiving PT, OT, VT, Speech & Aqua Therapy once a week and then she will have visual therapy 2 times a month.  We will also be attending Buddy Builders (local program @ the Delta Gamma Center) 2 times a month.

There is so much that I want to accomplish when I am not working.  The biggest one being getting this site exactly how I want it and finishing all the pages that I have set up.  I didn't realize the task that I undertook when I first started, but hopefully it will be as great in real life as I see it in my mind.