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Kimmie
Our Little Miracle
Don't ask or say how do you do it.... Ask us why we do it!!!! Kimmie is like the butterflies. So beautiful and so very delicate.  I love this photo of the girls. Kimmie's health history: On November 29th, 1993 our family was blessed with a beautiful little girl named Kimberley. She weighed in at 6 lbs. 1oz. All was going well her first 4 months of life. She all of a sudden started not wanting to eat but an ounce or two at a time. She would then go to sleep. Her weight started staying the same for about the next 4 months. The doctor could not find out what was wrong with her. He then decided to send her to Kluge Children hospital to find out why she was not growing. We went when she was 8 months old. We were to stay for a week and were to get the full work over. On our first day there the doctors watched her eat. On the following day they were going to do a MRI but decided to do a chest x-ray first. From that x-ray on our lives changed forever. They sent us right away to University of Virginia. They wanted to do surgery right away on her heart. She had a Coarctation. Her heart was three times the size it should have been. They said for her to drink a bottle was like for us to run a marathon. She had the surgery the next day and about a week later was sent home. All went well for the next couple of months. Around Christmas time she started acting different again so we went back to the doctors. They said she was in trouble again. She now had a large ASD that needed to be fixed, but because of the Coarctation her lung pressures were high. The doctors thought she would need a heart and lung transplant. As all this was happening our insurance was changing and the new company would not allow her to stay with the same doctors. We had to go to Children's hospital in DC. The doctors there thought they could fix the ASD and she would not need a transplant. She went in had the surgery and all seemed ok until a week post op. They removed the pulmonary artery line and she bled into her chest. She ended up coding on them three times. We were told she would not live through the night. They said her only hope was for us to put her on ECMO (extra corporeal membrane oxygenation). So of course we did. She was on this for thirteen days. When she came off they found out she had had a stroke. She was also now having seizures. She spent a total of seven weeks in the hospital, six weeks of that was in PICU. When we first went in we were told we should be there a week at the most, that was one long week. That was when we brought a child home that looked like our Kimberley but was not the same Kimberley we took into the hospital. She came home with a whole new list of problems, seizures, and the whole right side of her brain gone, Cerebral Palsy and Hydrocephalus (no shunt). She could no longer hold her head up or could no longer use the left side of her body. She slowly started to get a little better. Over the past few years she has learned to sit up and to crawl with the use of one hand (she looks like a frog, too cute). Up until the past few months she has been doing well. She has started to have more seizures and we took her to a new doctor. She wanted her to have an EEG. Well we did that and the results were really bad. It showed she was having them every second (yes I said second). They added a new medicine and will do a new EEG when the levels are high enough. When I asked the doctor what this would do to her life span she said it would shorten it. We are now in a wait and see game. She is having the seizures on the left side of the brain. The whole left side is having the seizure activity so I don’t think surgery would work for Kim. Kimmie had hip surgery on November 7th, 2001. They cut the hip socket and pulled it down. This was the second hip surgery she has had. She was in a cast again from the waist down for six weeks. In March of 2002 Kimmie had a VNS placed in her upper left chest. This is like a pace maker for the heart but is used for seizures. It has a magnet that we can use to stop a seizure when she has one. It has helped with some of the seizures but not all of them. The end of that same year something happened to Kimmie that no one knows what it was but she started not acting herself. She slept a lot and lost a lot of her skills. I found this poem that says just how I feel about Kimmie. I just want people to stop and think how I feel about it all. WISHES IN THE DARK Sometimes when she's sleeping I can see in my mind's eye the little girl I thought I had, the one who said good-bye. Sometimes when she's sleeping hands folded by her cheek I close my eyes and see before me a child who can speak. Sometimes when she's sleeping she seems so whole and well I can't believe she won't awaken with dreams of which to tell. Sometimes when she's sleeping and the tears in my eyes overflow, I steal what kisses I can in the dark and wonder what joys she will know. Sometimes when she's sleeping and my eyes ache with tears unshed, I pray she'll always be full of peace as she slumbers in her bed. Sometimes when she's sleeping I can almost hear her say "I love you, Mom, with my heart and my soul, each and every day". But always when she's sleeping I am full of pride at the miracle that is my daughter and the perfection that is inside.  BETTE MIDLER LYRICS "Wind Beneath My Wings" Ohhhh, oh, oh, oh, ohhh. It must have been cold there in my shadow, to never have sunlight on your face. You were content to let me shine, that's your way. You always walked a step behind. So I was the one with all the glory, while you were the one with all the strength. A beautiful face without a name for so long. A beautiful smile to hide the pain. Did you ever know that you're my hero, and everything I would like to be? I can fly higher than an eagle, for you are the wind beneath my wings. It might have appeared to go unnoticed, but I've got it all here in my heart. I want you to know I know the truth, of course I know it. I would be nothing without you. Did you ever know that you're my hero? You're everything I wish I could be. I could fly higher than an eagle, for you are the wind beneath my wings. Did I ever tell you you're my hero? You're everything, everything I wish I could be. Oh, and I, I could fly higher than an eagle, for you are the wind beneath my wings, 'cause you are the wind beneath my wings. Oh, the wind beneath my wings. You, you, you, you are the wind beneath my wings. Fly, fly, fly away. You let me fly so high. Oh, you, you, you, the wind beneath my wings. Oh, you, you, you, the wind beneath my wings. Fly, fly, fly high against the sky, so high I almost touch the sky. Thank you, thank you, thank God for you, the wind beneath my wings.  Kimberley’s Medical/Funeral Fund We are changing banks for this will post the new bank info soon!!! I Do Talk To You I know you can't hear me....but I do talk to you. And I hear everything you say to me too. I hear when you laugh when I do something funny. I hear you yell "Hooray" when I try so hard. I hear you tell others how you'd never trade me for the world even with all the trials I came with. I hear you thank God for what a blessing you have been given. I hear you encourage me when I can almost do it. I hear you cry, too, when it gets a little harder and when you ask God "Why?!" your baby. And I know you know I understand somehow. And you know I listen when you talk to me too. But, I want you to know, mom........... I do talk to you. PLEASE sign my guestbook!!! If you have signed it you can sign it again that way I know you have stopped by to check on me!!!!  *HUGS* TOTAL! give Bimmer more *HUGS* Get hugs of your own  Journal Sunday, May 12, 2013 1:21 PM CDT Where has time gone? Hospital Information:
Links: http://www.hugsandhope.com |
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E-mail Author: geislerm@softhome.net |
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