Bebe, "Warrior Princess": October 2009

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.....

10.12.2009

..cardiology update

we went to the pediatric cardiologist today..bebe weighed 5lbs 7.5oz, so she's still growing..the doctor didn't have much additional to share, except he did NOT feel like he needed to put her on any medications, which makes us happy..he also said it it is too early to tell if the vsd is closing on its own..we will be heading back to them in 3 weeks..he feels that the abnormal valve is really assisting in the fact that it is reducing the amount of excess blood going to her lungs..he also said that once the vsd has closed (whether on its own or has to he surgically patched), the "abnormal valve" will need to be fixed..its funny how God works..this "abnormality" is giving us more time..either way..more time for her to grow and her body to close the hole or more time for her to grow to be able to tolerate and do better if surgery were to needed..so, overall, we still feel positive..we feel confident that God is going to make her whole..we'd love it if God would do that supernaturally..we also know that God sometimes uses surgery to heal..so, we are confident in God's plan and purpose for this situation..we are trusting in Him! :)

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