We received a call from Moriah's Genetic Doctor, Dr. Anna-Kaisa at LPCH.
Moriah has the gene for CHARGE Syndrome. It's confirmed.
Neither Justin and I are carriers, which means the variation in the gene happened at conception.
This also means that there isn't a high risk for our future children to have CHARGE.
This doesn't change anything. She's absolutely perfect in our eyes. God made her exactly the way He wanted her.
Our eyes were really opened to these passages after having Moriah...
Even though we might not always understand why, we do know that God has a reason, plan, purpose for everyone and everything.
You made all the delicate, inner parts of my body
and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
Your workmanship is marvelous—how well I know it.
You watched me as I was being formed in utter seclusion,
as I was woven together in the dark of the womb.
You saw me before I was born.
Every day of my life was recorded in your book.
Every moment was laid out before a single day had passed.
Psalm 139: 13-16
As Jesus was walking along, he saw a man who had been blind from birth.
“Rabbi,” his disciples asked him, “why was this man born blind? Was it because of his own sins or his parents’ sins?”
“It was not because of his sins or his parents’ sins,” Jesus answered. “This happened so the power of God could be seen in him."
John 9: 1-3
We know who is really IN CHARGE! =)
Much love,
Justin and Victoria
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11 comments:
You have been (and continue to be!) a remarkable showcase for the glory of our God who was, is and always will be IN-CHARGE!!!
Blessings.
Moriah has definitely been a light to many! You guys are wonderful examples of Faith, Hope, and Charity!
I love the Christmas Pics...so exciting!
I remember hearing a teaching about David and Mephibosheth. It was the same story that Russ told me when I was afraid that he wouldn't want to adopt Allison. http://irvine.newsong.net/message-archives/ under CWOW (Church Without Walls) was a series and I think it was "Everyone Plays". I'll have to check it in the morning but its worth sharing and such a sweet picture of what how god sees all of us! We are still praying for you guys and are so happy for the progress of our little girl! Blessings to you,
Jem
I thank God he blessed Moriah with such wonderful parents and blessed you with his sweetest Angel.
xxoo
Its always nice to have answers but I agree it doesnt really change a thing one way or anther. Moriah is Moriah and she is a blessing.
God bless you all,
Crystal and Eva
Victoria, I just love your perspective on things! Moriah IS perfect...I mean, look at those eyes-how could that look mean anything less than perfect!
I give a jolly AMEN to you and your writing today!
Hugs and Continued Prayers
AmberK
Thank you for your example of FAITH! I actually JUST wrote a post a couple of days ago using that John passage. I have been feeling so angry after the passing of another sweet heart baby and God used that scripture to ease my anger. I love that God's Word is alive!
Heart hugs,
Jesse
Victoria,
I haven't posted in a long time, but you are always in my thoughts and prayers. Your writing is beautiful as is your sweet Moriah. She is a blessing and she has wonderful parents. Thank you for being such a blessing and encouragement to me. Happy New Year to you. So excited to see you have moved to the Bay Area. Will shoot you an e-mail when life settles down for me
xoxo,
Tanya
i may not allways comment but i am allwasy reading im jsut so happyu that oru little moriah is out of hosptial and that you all r near lph and i allways knew she was a little charger jstu one with a few more probs lol love and hugs and best wishes for a better year this year
I love your perspective Victoria. The passage from John is a favorite to turn to when I am questioning. May God be glorified through our precious children.
CHARGE...
A diagnosis, but not a definition...
And... she is so very perfect just as she is!
I read this right after I saw the new video of her giving you "the look!" HA!!! Get used to it, Mama! She's a girl with 'tude (it's a good thing, I promise!) and she's almost two, afterall!:-)
I LOVE all that chattering she does! Wonderful to hear her voice!
Victoria, I saw the medical update post, too and wanted to say a couple of things about that...
- No home vent program in the Bay Area, of all places, is surprising to me. However, with our home-vent experience (nursing unstaffed on weekends and very inconsistent nights), I can tell you that in many ways (as HARD as it is), in my opinion it's better for all of you that Moriah is where she is for now. JUST LOOK AT HER!!! She's getting so much care - - services galore, social interaction with other kids, 100% of you and Justin when you're with her because you're not exhausted from doing more than two humans can possibly do... anyway... I think it's a blessing that there is a place like this that provides this care and the services without being in the actual hospital. I hope that perspective helps :)
- I know you're weaning off Neurontin, hope that is going well.
As you know, we have vast experience in the area of all these meds. You mentioned Cyproheptadine (Periactin) which is an antihistamine. Gracie was on that for a long while... it helped and then stopped working. But, for a while, it did work... As she got older, her symptoms, while still abdominal also presented as actual migraine headaches. (This is common in kids with Abdominal Migraines as they mature.)
She's now on Topomax. It was formulated originally as a seizure med, but ended up being found to help with migraines. She was almost three and a half when she went on it, but I am guessing weighed less than Moriah!! :-)
Anyway, wanted to mention it so that you'd have that in the back of your mind... hopefully it's not info you ever need!
- What's Moriah's baseline temp? Is it normal? Just curious. We had a period of about a year where we were involved with infectious diseases because of Gracie's "fevers." We had to test the water in our house, blood labs galore, test her stool regularly... anyway, after so much time, they finally "decided" to just say that Gracie's baseline temp changed from below normal to above normal. I never bought it. I still don't. I think there is a reason and we just haven't found it yet. Anywho... I just wondered if Moriah's baseline is normal?
- Medication side effects suck! There's really NO OTHER way to say it! We give our kids a med because they need it, then it causes something else to occur. Grr.
- And, OUCHIE regarding that wound. Ugh.
Finally...
It's such a true joy to see how well Miss M is doing! It's really such a blessing, isn't it? It's so hard to fathom what she's been through - - what you and Justin have been through - - in the last year (well, really, almost two years). It warms my heart to see where you all are now...so, so much!
(Sorry this is so stinkin' long. I really should have just emailed you!)
Much love to you all,
Kristi
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