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.....







3.27.2010

..heart cath

Okay, WOW it has been so long since i have updated this...i do truly apologize! our sweet little bebe is doing well...she is 6.5 months old now & is 10lbs, 12.5oz & 23.75 inches long..what progress, little one!!!! she is still not on any major medicine on a regular basis..one thing we have been having to do is she has to get synagis shots once a month throughout rsv season..the synagis is used to help her body if she were to get rsv...anyways, it is a $2500/shot situation that she gets monthly...and the process of it is currently the bane of my existence...thankfully, she is well worth the hard work, time, energy & large bill..at the same time, i will be reaaaaally glad when she doesn't have to get it anymore...april should be her last month...the nurse said something about her being a candidate for it next rsv season..i told her to please not tell me that & just let me enjoy the time away from it...ultimately, health insurance, synagis, doctor's appointments, consultations and general health care situations takes up much of my free time..i call it my part time job...hahaha...next big information is that bebe had a heart cath on friday to help us determine what exactly is going on...they felt like an internal view would help us to determine what our next step should be, if any...b did well, i am never ceased to be amazed by that little thing...me on the other hand----had a lot of Grace on me that day (thank you for the prayers for me too, i sure did need it)...i can say it was one of those moment that i have from time to time that just reminds me "k, yah, you are TOTALLY a mom"...i truly can NOT put into words what i felt as she started to come out of anesthesia and would cry in a way i had never heard...it was like my insides were being ripped out...i just wanted to scream at the top of my lungs for someone to fix it...and i knew i couldn't fix it...i had ultimately allowed it...i signed the release to let these people do this...and here she was, hurting...why? because it is for her overall well being, maybe not that day, but down the road...because i understand things in a different way than she does...funny how God yet again reminded me of how He must feel when He sees us hurting...He loves us (and her) far more than my little heart could ever love...can you imagine what it must feel like for Him to hear us cry out to Him...how much He must want to come and simply rescue us from our pain...why doesn't He? because He sees the bigger picture, He understands on a Higher level & He knows it is for our best...does any of that make it easier in that moment of mommihood where i simply want the problem to just disappear, well, not really...but, at least God is teaching me through this...i feel like every day, God is showing me more and teaching me more through little bevy...i still really wish He would just heal her...and ya know what, He surely can...i believe it with every ounce of who i am...i also trust Him, whatever His plan is...i trust HIM...so, chad & i are already praying for God to give us guidance and wisdom on the decisions we will be making when given the recommendation from the cardiology team...they will be meeting on friday & b's case will be discussed...they will then recommend to us what they feel is best for her in the immediate or "down the road" future...we know God will give us wisdom (even beyond our years & experience)...we would like to sincerely thank each of you for so much love & support y'all have all shown to us...we are so humbled that so many people love us & love our little girl...thank you so so much, y'all! we can feel your prayers & support!!!!

we're both recovering in the bed 2gether
heeeeeeey!!! look who's awake!!!!
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