I'm so sorry I haven't been blogging more regularly. Since I created Anabelle's Facebook page it has been easier to update everyone on there. I realize a lot of you may not have Facebook so I will do a quick catch up...
September: G-tube placed!! Yahoo!! Anabelle now has been receiving the proper nutrition. She still hasn't gained any weight but we are currently (May 2014) working to fix that.
October: Angel Glow!! With the help of some really amazing people we pull off our first ever 5k in Anabelle's honor. We raised $20,000 in 6 weeks!! Phenomenal! Look forward to 2nd Annual October 17 2014
November: We travel to California to see family. We plan to make it down there again this year but travel is getting more difficult...
December: Anabelle turns 3!! I can't believe just how fast she is growing! We are so happy to have her for another year but also know that means we are one year closer to the inevitable.
January: Anabelle starts preschool! Because of a previous commitment she only goes once a week on Thursdays instead of two days. Since this school year is coming to a close we are looking forward to her moving to two days a week next year. It is really the highlight of her week.
February: We traveled to Pittsburgh to meet with the specialist in Anabelle's disease. We learned more about it and moved forward on some important decisions for her health. The doctor is hopeful she will outlive the average and probably be with us for at least 5 more years. Ronn and I are excited but also a tad scared.
March: Ronn and I celebrated 4 years married (yay!) but it also marked one year since diagnosis. Wow! A lot has changed between Ronn and I, and with Anabelle in the last year!! I'm so thankful to still have such an awesome guy beside me fighting this awful disease!
April: Per our visit with the Specialist, Anabelle has surgery on her feet and legs. The intention being that we get her back into a standing frame to help support her bone density as well as her lung and digestive health. Anabelle handled surgery like a champ!
May: Anabelle stands up in her stander for 30 minutes after not bearing weight on her legs in a year! AMAZING!! Anabelle also got her casts off mid month but the left foot wasn't as corrected as we thought. Now we are struggling with whether or not to put her through surgery again or adjust for her current issues, although they are contrary to what medicine wants us to believe. We are going to try to adjust for the current situation and see how far she will let us push her before I can't see her hurt anymore.
She is such a trooper!! It's so amazing looking back on the last 8/9 months and seeing how much she has endured and, more often than not, with a smile on her face. We have been overwhelmed with support and encouragement from all of our friends and family! I promise to stay more active on my blogging page in the future. Thank YOU!!!!
May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope. Romans 15:13
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