Tuesday, June 30, 2009

So excited!

I have launched a book review blog and I couldn't be any more excited! It's still green and ground floor but so, far the few responses have been positive enough to receive brand new books to review! So without further adieu- I present the BookNerdExtraordinaire

Monday, June 29, 2009

Letter from your brain

I just think about Emma's injured brain when I read this:

A Letter From Your Brain


I'm glad to see that you are awake! This is your brain talking. I had to find some way to communicate with you. I feel like I barely survived WWIII and am still not quite all in one piece. That's why I need you. I need you to take care of me.

As time passes and you and I feel better and better, people, even doctors, will tell you that we are fine, "it's time to get on with life." That sounds good to me and probably even better to you. But before you go rushing back out into that big wide world, I need you to listen to me, really listen. Don't shut me out. Don't tune me out. When I'm getting into trouble I'll need your help more than I ever have before.

I know that you want to believe that we are going to be the same. I'll do my best to make that happen. The problem is that too many people in our situation get impatient and try to rush the healing process; or when their brains can't fully recover they deny it and, instead of adapting, they force their brains to function in ways they are no longer able too. Some people even push their brains until they seize, and worse... I'm scared. I'm afraid that you will do that to me. If you don't accept me I am lost. We both will be lost.

How can I tell you how much I need you now? I need you to accept me as I am today... not for what I used to be, or what I might be in the future. So many people are so busy looking at what their brains used to do, as if past accomplishments were a magical yardstick to measure present success or failures, that they fail to see how far their brains have come. It's as if here is shame, or guilt, in being injured. Silly, huh?

Please don't be embarrassed or feel guilt, or shame, because of me. We are okay. We have made it this far. If you work with me we can make it even further. I can't say how far. I won't make any false promises. I can only promise you this, that I will do my best.

What I need you to do is this: because neither of us knows how badly I've been hurt (things are still a little foggy for me), or how much I will recover, or how quickly, please go s-l-o-w-l-y when you start back trying to resume your life. If I give you a headache, or make you sick to your stomach, or make you unusually irritable, or confused, or disoriented, or afraid, or make you feel that you are overdoing it, I'm trying to get your attention in the only way I can. Stop and listen to me.

I get exhausted easily since being hurt, and cannot succeed when overworked. I want to succeed as much as you do. I want to be as well as I can be, but I need to do it at a different pace than I could before I got hurt. Help me to help us by paying attention and heeding the messages I send to you.

I will do my part to do my very best to get us back on our feet. I am a little worried though that if I am not exactly the same... you will reject me and may even want to kill us. Other people have wanted to kill their brains, and some people have succeeded. I don't want to die, and I don't want you to die.

I want us to live, and breath and be, even if being is not the same as it was. Different may be better. It may be harder too, but I don't want you to give up. Don't give up on me. Don't give up on yourself. Our time here isn't through yet. There are things that I want to do and I want to try, even if trying has to be done in a different way. It isn't easy. I have to work very hard, much harder, and I know that you do too. I see people scoff, and misunderstand. I don't care. What I do care about is that you understand how hard I am working and how much I want to be as good as I can be, but I need you to take good care of us, as well as you can do that.

Don't be ashamed of me. We are alive. We are still here. I want the chance to try to show you what we are made of. I want to show you the things that are really important in life. We have been given another chance to be better, to learn what is really important. When it is finally time for our final exit I would like to look back and feel good about what we made of us and out of everything that made up our life, including this injury. I cannot do it without you. I cannot do it if you hate me for the way being injured has affected me and our life together. Please try not to be bitter in grief. That would crush me.

Please don't reject me. There is little I can do without you, without your determination to not give up. Take good care of us and of yourself. I need you very much, especially now.


your wounded brain

Pretty Emma! June 14, 2009

Sunday, June 28, 2009

It's getting closer.....

July 8th is nearly here and that is the day Emma was shaken. It's a very difficult time for us and I thought I would share the letter I wrote to the sentencing investigator after the trial against the person who hurt her was over and this person received a verdict of GUILTY on reckless child abuse. Although this person was found guilty and it's public information, I am hiding the name due to this not being a blog to wish harm upon this person but to heal, to share and continue to move forward. At each milestone we hit, it's another piece fixed and to continue to harbor hatred or ill will, it will be detrimental to all the work we have done to continue our lives. As Emma is also going to have surgery July 16th, I just want to think about all that has happened and the bridges we have crossed. This letter was written May of 2008:

Emma Nichole was born on August 7, 2003. She was 8 lbs 6 ounces and 19 inches long. From the moment she came into my life, she was very much a wanted baby. My world revolved around Emma. She was the calmest baby I have ever encountered (I have 21 nieces and nephews, 6 great nephews). Even the day she was born she was calm. The OB nurse had a little laugh about it, when she removed Emma to give her first sponge bath, she said Emma just laid their calmly and allowed her to clean her up and check her temperature, and do other routine things, where most newborns would cry. I was very scared being a new mom raising a new baby, I wanted nothing but THE BEST for her. The first 6 weeks at home were actually very easy. Most new moms are sleep deprived, not me. Almost from day 1, she slept through the night. She would lay in bed with me and calmly listen to me read stories to her. She hit all of her milestones, sitting up at about 4 months, crawling at about 6 months, pulling herself up at 10 months and toddling along with us holding her hands at just before her 11 months. When she was teething, I didn't even know! She rarely made a peep! Never complained. Emma was constantly happy. There wasn't a day she didn't smile. Her laugh was infectious, she would giggle right from her eyes down to her toes. She had this glow about her that people would be so drawn to her. They would literally stop in their tracks at the stores and flock to her. She relished in that attention and would flash her beautiful smile. Emma had been sick at 4 months with the beginning of bronchitis in December 2003. Then she wasn't sick again until the first week of July. She began with an eye irritation that she would rub her eyes- ALOT and their was discharge and she also had a runny nose. That brings us to July 8, 2004. When she was seriously hurt. That was also when I learned her eye irritation was actually pink eye (actually it was July 11, when the ophthalmologist looked at her eyes and said it was conjunctivitis aka pink eye). The day she was hurt, she went through a major brain surgery. She had a portion of her brain removed due to the brain delivering itself due to so much pressure. The pressure caused her skull (she also had a 10 cm fracture that began over her left eye and went around the right side and ended in the left occipital region.. I may not be 100% correct on this information, but she had a BAD fracture that crossed suture lines) to be forced out on the right side and her right bone flap was removed. It's still gone to this day. She had a few maintenance procedures done after that. One to change her JP drain (to keep fluid off of her brain), another one to change from a JP drain to an EVD drain (her body was not reabsorbing the spinal fluid) and finally at the end of July, she had a right VP shunt placed (it's still there). So through the month of July she had 4 surgeries. Emma was also on a ventilator for I believe 10 days. I was told in the beginning she would not survive the night, nobody thought she was going to pull through this. It was THAT severe. The whole month of July she was in the Pediatric Intensive Care Unit. Then at the beginning of August, 2 days before her 1st birthday, she was moved to the Neuro rehabiliation unit at Phoenix Children's. She underwent countless hours of Rehab. Physical Therapy, Speech Therapy, and Occupational therapy. She was fed through an NG tube (a tube in her nose). Due to her suffering a stroke, her ability to swallow was affected. She has a low tone in her mouth and her coordination of her tongue was also affected. Her foods and liquids had to be thickened to the consistency of pudding to swallow safely. Eventually she ended up have a GTube (feeding tube surgically placed) placed before she could come home. She had to be fed through a pump as we worked on getting her strong enough to swallow. Emma was also found to have retinal hemorrhages in her right eye. All in all she spent 2 months in the hospital, suffered through 5 surgeries DURING her hospital stay, received a helmet to protect her brain and braces for her left leg. She did get hospitalized again in January 2005 due to catching RSV and she wasn't able to fight the virus on her own. .

To present, Emma doesn't walk. She has left side hemiparesis in her left arm (essentially it's a Cerebral Palsy paralysis) and wears a brace on her left arm to keep her thumb out and as soon as we can desensitize her arm (her brain sends signals that she is in pain with being touched even just lightly), she will get botoxed so we can straighten out her hand. That left arm is atrophied. Her left leg wears an AFO due to her foot dropping from the Cerebral palsy in that side. There are also possibility of having a tendon lengthening surgery in the future and also botox. Her leg is pretty stiff at times. It's stronger then her arm, though. We have to purchase special shoes for the brace because there aren't any shoes in the regular stores available that will fit around the brace and also be deep enough to keep her even when walking. Those shoes cost $40 a pair. Emma mobility consists of her scooting on her bottom wtih dragging the left side of her body. She has wheelchair (Convaid Cruiser) for transportation. A Walker (Pacer Gait Trainer) for when we walk. Emma's eyes are a problem. She doesn't use her right eye due to the brain damage. Also she does have a left visual field neglect. So essentially she is using the central and right visual field of her left eye to rely on. Her right eye is "lazy". We are using atropine drops to her left eye to "take away" the vision and make her use her right eye. She also wears glasses for that purpose. She did have a surgery in May 2005 to correct the muscle on her right eye (surgery #6). She also has dental problems. Her 4 front teeth have rotted. In July 2005, she had root canals and caps on her front teeth done. (Surgery #7- she was placed under anesthesia and treated at the hospital. Also due to her shunt, every dental cleaning and procedure she must be on meds first to prevent bacteria from getting in the shunt). February 2006, 1 of her teeth abcessed and had to be pulled. July 2006, the 2 front teeth abcessed and are now gone. Emma is on anticonvulsants. She takes 100 mg of Carbatrol 2 times a day. She does have seizures but her medications now have them under control. Emma has excessive drooling due to still having a weak mouth. She can eat and drink normally (well, she is working on drinking from a cup), her feeding tube was removed on April 2006 (Surgery #8). My mother passed away February 2006, my mother never got to meet Emma before she passed away from lung cancer. All she knew of my daughter was from photos. We went home for my mother's funeral, and that drive from Arizona to Kansas made Emma sick for 2 weeks. She couldn't handle it. Also, we are in talks of repairing her skull. That won't be until she is around 6-7 years old. She will be going through a MAJOR surgery at that point.

Emma is learning delayed. She is a beautiful, loving child but has outbursts and mood swings that can be quite heart wrenching. My sweet baby that used to let me hold her and cuddle her, doesn't let me do it anymore. She doesn't like anybody or anything too close to her. She has a sensory problem and she becomes easily overstimulated and will start screaming and crying. Her speech is considered severely delayed. Her cognitive levels are severely delayed. Her IQ is 56. Which according to the DSM-IV classifies her as mentally retarded. Those are some hard words to read, knowing that Emma wasn't born like this and that her entire future has been altered at the hands of a *person* SHE and I trusted. She has trouble making friends due to the space issues. She will play side by side with them but doesn't play WITH them. Her hyperactivity and behavioral and emotional problems will impede her education. There are just days where she can not be comforted. Her teachers and day care instructors already know if we have a "Grumpy Emma day" that their days will be tough and she is hard to work with and make happy, she spends alot of those days in a quiet room where she can unwind. When we have a "Happy Emma Day", then those are the days I see the old Emma. Her teachers have a great day with her, she will sing, give hugs and kisses. Let me add, Emma will most likely always be in Special Education, most likely be in PT/OT/Speech therapies for as long as we can see. She currently attends a day care for Children with Special Needs.

I think this sums it up. The Emma I knew died on July 8, 2004 and that act of shaking and slamming my daughter gave birth to a new Emma. I love Emma with all of my heart, and I still continue to want nothing but the best for her. The new Emma is a child with a lot of problems. She is still my sweetheart, but we lost who she was that day. The dreams of signing her up for ballet and softball are gone. The days of watching her run have never happened. She should be potty trained but isn't. The sad thing, I get upset when her birthday rolls around. Chuck E Cheese isn't very handicapped friendly. I feel it's wrong to have the other children run and have a great time while Emma has to rely on help. We still do it, but it's heart breaking when she asks to "run with the kids" and she physically can't. Emma is just beginning to understand that she isn't "like the other kids". One day she is going to ask me what happened to her, I fear that day of telling her. I let my daughter down the day I met *that person*. I thought I found a wonderful *person*, only to learn that s/he was the enemy in the worst way. I still suffer nightmares and flashbacks of seeing my daughter being whisked away into an emergency surgery, I still see her being resuscitated in the Emergency Room at Phoenix Children's Hospital. I still hear those words ringing in my ears "She probably won't survive the night" I still wake up in cold sweats thinking about what horrors my daughter went through that day at the hands of a person I trusted with my most precious person- Emma. I went through a severe depression for 3 years because of this. It's a hard pill to swallow- Child Abuse. I was only able to work part time due to all of Emma's appointments. We are moving into a modified apartment for Emma to be barrier free (it's completely modified for wheelchair access). I am starting to work with the local Child Abuse groups to help teach others about what happens when a baby is shaken.

I want this to face the maximum penalty of the State of Arizona. No matter what happens, Emma's brain will not get paroled and returned to her. Emma will never regain everything she has lost. My heart was permanently broken that day. I will never regain who I was ever again nor will I ever be able to trust another soul with my daughter. At the age of 4, my daughter has seen hell and back and has lived to see another day. That person nearly took Emma's life and has never shown any remorse for his/her actions, only concern for his/her own self. Never once asked about Emma's well being when she was dying or when she was laying in a Coma. Emma barely made it out alive. Just barely. I am not angry, as a matter of fact I have forgiven that person for what s/he did to Emma. However, it is not my forgiveness s/he needs to ask, it's Emma's. Right now, I am Emma's voice and until she can speak for herself, I will continue to be her voice and fight for her.

Thursday, June 25, 2009

We've come a LONG way...

Just a montage I made some time back. I know, I know that exist is spelled as EXIS on the last frame. I ran out of space. lol. I will pay for additional writing and time to build a better one. Turn your sound on and grab your kleenex because Emma has come a long, long way!