We are still overwhelmed that God truly feels we are up to the challenge of this amazingly special child. We truly believe that NOTHING WAS HIDDEN from God when He created her. We truly believe that He created our little girl with a plan & a purpose...and let me tell you, it's bigger than we could have ever imagined!


This is the story of beautiful and amazing Bebe. Although this is the story of what is going on with her, don't be deceived, this is also the story of God working through her. God has an amazing plan for B's life and we see that more and more each day.


Beautiful Bebe was born in late summer/early autumn 2009. She was born quite small & is still very small for her age. She was born with 2 holes in her heart & an abnormal valve in her heart. Also, she was diagnosed with a cyst in her brain at birth. Some doctors did not expect much out of her, or even to survive. But our God & our daughter continue to beat odds.


Bebe has been diagnosed with a very rare genetic disorder called Wolf Hirschhorn Syndrome (also known as 4P-). Due to the syndrome, she has faced some significant developmental delays. It has become obvious to us that all of these medical issues & developmental delays have given both her & God great opportunities to prove the situation amazing. Sweet Bebe has progressed fantastically. She never ceases to amaze me. More than that, GOD never ceases to amaze me.


To express where this is coming from, let me introduce myself. My name is Lori and my husband's name is Chad. We get a front row view to the amazing things God is doing because we have been honored and privileged to be given Bebe as an amazing gift from God. We are still overwhelmed that God truly feels we are up to the challenge of this amazingly special child. We truly believe that NOTHING WAS HIDDEN from God when He created her. Psalms 139 says that He knit her together. So, we truly believe that He created her with a plan & a purpose...and let me tell you, it's bigger than we could have ever imagined!


This is our family's story & the story that ONLY GOD is writing for her.....







2.28.2011

..we were working on standing.

Bebe was working with her Physical Therapist the other day and she was working on standing.  Her Physical Therapist would press slightly down on B's hips to plant her heels down on the ground.  Bebe did so amazingly and would stand on her own for a good 4 seconds.  So, when Chad got home (about 1/2 way through the session), we wanted to show him how well B had done.  So, her Physical Therapist was showing Chad the technique and all she took her hands off of Bebe's hips.  To which, B decided to take like 3 steps towards Chad all on her own.  We all just sat there wide eyed.  FIRST STEPS, SERIOUSLY!!!  So, her Physical Therapist was like "We were working on standing, but if you wanna walk....."  It was so funny & so sweet that Chad & I were both there for her first official steps.  I am so very proud of her.  We continued to work on it & are still working on it.  She is standing better and better & we know she'll be off and running soon enough.  That kid is amazing.  Her Physical Therapist suggested we get some good supportive running-style shoe to help her pronation (her little inner ankles were almost touching the ground when she stood).  You can see the picture below of her "big girl shoes".  It took her a few days to get used to them, but now she loves them.  Good thing, since she has to wear them like all the time.  :)  

Also, when we went back to the doctor, we verified that she hasn't really gained weight since November.  She is still holding strong at 14lbs.  So, we will be going to see a pediatric Gastrointerologist and a Nutritionist.  Since her sweet little heart is all better, I'm ready to dose this kid up with some calories!  She is still eating, which is sort of a miracle in itself (many WHS kids have PegTubes).  We will see what they say about it. 

We also have decided to participate in the Walk Without Limits Walk to help support United Cerebral Palsy of Birmingham.  Although Bebe does not have Cerebral Palsy, UCP Birmingham facilitates "Hand in Hand" (http://www.ucpbham.com/our-programs/hand-in-hand.html), which is B's Early Intervention Program.  They provide Bebe with in-home Physical Therapy, Occupational Therapy & Speech Therapy at no out of pocket cost to us.  I can not really express how important this is to us, since precious children with special needs tend to have so many medical bills.  Without this program, I am unsure of how much therapy we could actually provide for her.  Hand in Hand bills the insurance and UCP's funding continues to provide services to us when insurance stops paying these services (there are generally very specific and narrow limitations to therapies under most insurance plans).  B has been in the Hand in Hand program for an entire year and has truly been an integral part of Bebe's ongoing developmental successful.  They help teach us how to most effectively teach her.  I understand that many state budgets are being cut, which appear to be filtering down to this amazing program. 

If you feel led to help support our efforts, please visit our fundraisting page at http://www.firstgiving.com/fundraiser/bevynmaple/race-without-limits.  Also, if you'd like to walk with us---PLEASE let me know.  We would LOVE LOVE LOVE to have you with us! 

Thank you all for the prayers & support.



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