What a difference a year makes!

HI! I know its been forever since I've blogged but I just thought I would share whats going on in our lives.

This time last year Ronn and I were feeling very blue. It was our first holiday season since Anabelle's diagnosis and I think we weren't really sure how we were feeling about everything. We were blessed by the Sparrow Clubs who gave us an amazing Christmas but unfortunately some of those toys have still gone untouched.

This year, it's still hard but I think we have come to terms (as much as possible anyway) with the path that has been set before us. It still stings a little when we walk through any department store and see all of the things Anabelle just can't play with. This would be the year of a new bike and trying to get rid of our training wheels and more Anna and Elsa stuff than we knew what to do with and it just isn't that way. However, I am feeling so grateful for another year with Anabelle. She doesn't smile as much as she used to but I know she is still in there. She still loves being snuggled and kissed. She has become so much more comfortable over the last year and sometimes enjoys just relaxing on her massage mat and watching Doc McStuffins or Mickey Mouse. I saw a quote that reminded me that Anabelle is exactly who she was meant to be; nothing more, nothing less. I know that God has her in a very special place and I am grateful that I get to see all of the lives changed simply by her presence.

Anabelle's health has been pretty good so far. She is still healthy even through the cold and flu season. She had a bad reaction to the flu shot about a month back but is doing great now. Like I said she is tolerating not always being held more and more, and that is because her Grandma Cheryl (daddy's mom) bought her a vibrating massage pad and she loves being on it (and now she has one for the car thanks to her Granny Jacq). She has no problem letting know when it has turned off (it has auto shut off). We have moved around her feeding and calorie schedule again so I am hoping to see some weight gain. She could use about 10 or 15 more pounds. She is tall though. When I have her stand up in her stander it always surprises me. She is almost 40 inches! She has long legs like her daddy's side. Her hair is growing fast! I am not sure what to do with it sometimes because it is still a little too short for braids or pony tails. She loves preschool and seeing her friends; they are all so sweet to her. She loves water physical therapy, especially now that I have been getting in with her. She is thriving and that is all that I could ask.

I titled this post with "What a difference a year makes" and that isn't because Anabelle has changed much but the world around us sure has. I see things so different now because of her. She is such a strong little girl that didn't ask for any of this. I pray that over this holiday season I find time to be quiet. Anabelle doesn't talk and I truly believe she has conversations with Jesus I don't know about because she is just a much better listener. I am trying to find motivation in that to be quiet myself. Listening to what Jesus has for me each day. I am so lucky to be her mom and as crappy as this situation has been I wouldn't trade that little girl for anything! Happy Holidays!!

Psalms 30:11-12 You have turned for me my mourning into dancing; You have loosed my sackcloth and girded me with gladness, That my soul may sing praise to You and not be silent. O LORD my God, I will give thanks to You forever.

Anabelle's Angel Glow 5k and Fun walk info + Anabelle update

Hi my non fb friends and those who travel here aimlessly...

Anabelle is doing great! I keep thanking God that she has stayed healthy,  other than the obvious. Unfortunately with this disease,  it's respiratory diseases, like pneumonia,  that can really take em out because they can't cough to get the gunk up and antibiotics only do so much. So please keep praying for health

SOO... 2nd Annual Anabelle's Angel Glow run/walk is just around the corner. October 17th we will be meeting at the Les Schwab Amphitheater at 6:15 for another great event. This year at Angel Glow not only will you be helping Anabelle and all of her needs you will also be helping other kids in the area through Sparrow Clubs.  A choice that Anabelle and our family made. We really want to spread the love. For more info visit www.anabellesangelglow.org and get all registered and signed up for the big event! See you there!

EXTRA! EXTRA! READ ALL ABOUT IT!!!

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