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****UPDATES****
5-14-2009: Well I just realized that it’s been more than a year since my last update! Sorry! Well let’s see….. I am still a stay at home mom, I’m going to school PT at night during the fall & winter, still working towards my RN. Bekka is doing awesome! She did get hospitalized in March for the first time in two years ( that is amazing for us! ) The nurses still remembered us! She got a bad stomach virus and got really, really dehydrated. We were scared for a short while that her kidneys were shutting down, after many prayers they started working and she peed, lol! I never thought something like that would ever make me sooo happy. We went to Riley’s Children’s Hospital in January for our six month follow ups. In the CP clinic we increased her Baclofen and changed her drink from Pediasure to Boost 1.5 Cal with Fiber. Bekka has not gained any weight in 2 yrs and is underweight and they are concerned about it and brought up a feeding tube…. Ugh I don’t want her to go through another surgery. We finally got it approved by insurance in March and during all the stomach bug stuff didn’t realize for awhile that she wasn’t tolerating the Boost and that was making her vomit too. My poor baby was getting sick multiple times per day, our Ped told us that her reflux had come back after 2 ½ yrs and put her on Prevacid. We did our own trial and error and took her off the Boost for a weekend and back on the Pediasure and guess what? She stopped getting sick! The Boost is thicker and we thick the fiber was just filling her up too much. Soooo we called Riley’s and decided to try ½ Ped and ½ Boost 1.5 cal without fiber and yay she’s doing okay on it! She’s gained a pound! YAY! We also saw audiology and had her cochlear implant remapped. Her impant needs some parts fixed and we’re still waiting for approval from Michigan CSHCS……… ah the joys of insurance! Steve’s ins doesn’t cover implant equipment. Thank God for MI CSHCS even if they’re slow. Next year we found out that we’re going to have to pay a $2400 premium to get it because of Steve’s income. I don’t know how we’re going to come up with that, and all at once. He makes too much but not enough…… Bekka is doing great in school! She got approved to go to the Berrien Springs Hearing Impaired School next year for all day Kindergarten!!!!! I’m so excited!! They have one of the best auditory verbal programs in the country! Bekka got a power wheelchair about two months ago and she loves it! It has opened up a whole new world to her. The only problem is that she can go where SHE wants to now! Lol Sometimes taking her to an appt is a battle. She tries to drive away and I’m fighting for the joystick to get her in the office. We had a friend give us a little basketball hoop and she loves being on the court with her big brother and playing some b-ball. She’s still getting speech therapy at Memorial Children’s Therapy Center, right now we’ve been focusing on feeding issues, she’s become very picky lately and having some sensory issues. We’re only doing physical therapy once a month, she’s kinda at a stand still now. I do a lot of work with her at home. I’m working on a bunch of education things to do with her over the summer. We’re working on making some new sounds and learning the ABC’s and 123’s . We’re also trying to get a new augmentative Communciation Device approved. She’s mastered the one I got her on e-bay. She can spell Bekka on a device by herself. We have Dish TV and using the remote Bekka programmed her own guide and named it Bekkq, close! I can’t even program my own guide yet! She also found the interactive part of it and was in the process of ordering a pizza from Papa John’s and has also tried to order jewelry from QVC!!!! She is sooo smart!!! Show her something once and she’s got it! She loves to play video games. Last week we got her Botox injections locally for the first time. We normally go down to Riley’s every three months but we found a neurologist that does them up here now. We go back to Riley’s at the end of July for our next follow up. I’m going back and forth about talking to them about getting a second cochlear implant. I think we’re going to wait for now on it though, I would like to see where things go with stem cells, maybe they can grow her some new cochleas!!! I found a company that extracts stem cells from children’s baby teeth. Since we didn’t get to save Bekka’s cord blood I’d really like to do that. So we’re trying to figure out how to get the intial $595 to do that then it’s only $89 a yr. We’re also looking into doing Hyperbaric Oxygen therapy. I wish I had my nursing degree now and was making good $$$! Anyways, thanks for reading my very long update!! Love ya and God Bless!! Mel
P.S. Bekka's in Challenger Little League this year! It's sooo cute! She will also be taking two sessions at Reins of Life again this summer.
Four years ago a picture was taken of a little baby girl. So beautiful with her little pink hair bow. Cuddled up next to her beanie bear that daddy bought her. Born four months early she is almost the same size but her legs are longer. She looks so peaceful and serene. It's hard to believe that she's surrounded by a plastic world. Where every second is a blessing, every breathe a prayer answered. Lifelines surround her. Alarms beep warnings to her guardian angels. Her skin tissue thin tinged red from her latest transfusion. It's a day before she gets to feel her mothers touch. It takes four angels five minutes to place her in her mothers arms and only because they didn't know how many more prayers were going to be answered. It will be over a year before she is able to hear her mother's soothing voice sing her lullabies. Through the miracles of technology she is able to gaze into her mother's eyes as she cuddles her close for endless hours. Every minor milestone is a miracle. Already she has faced more struggles than most in their whole life and has many more to come. One second, one minute, one hour, one day at a time it's hard to believe that was four years ago. ..:namespace prefix = o ns = "urn:schemas-microsoft-com:office:office" />
Many reading this description of the picture would feel sorry for her or would try to imagine what her quality of life is. Others might wonder why God would do this.
When I look at this picture I see a tiny miracle that has taught me so many lessons in the short time she's been alive. It gives me the strength, courage and motivation to do things that I never thought I could accomplish. Whenever I feel down I look at this picture and tell myself what I'm going through is absolutely nothing compared to her life. Everyday she wakes up with a beautiful smile for anyone near and I strive to be like her. She takes everything in stride no matter how many times she has to be poked or prodded. It's just another day in her life. I have always believed that everyone was born with a purpose in life and I've struggled all my life to find out what mine was. Looking at this picture I finally know the answer to that question. I was born to be her mother. I was born to be her temporary voice. Yet after everything she has done for me I know that she still has an even greater purpose in life.
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