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Brief update

JollyRoger

Shared on Fri, 01/26/2007 - 14:04
OK, Megan went to the doctor's office this morning for a weight check and she has gained 3 oz, which we think is good. The doctors, on the other hand, are not as impressed. They say that she is at the stage now where she needs significant weight gain. Asking for an example, he said somewhere over 6 ounces a week, consistently. We told him that is going to be impossible until they nail down what EXACTLY is wrong with her. This involves getting her muscle biopsy done, which we sent the paperwork out today along with some pictures, that I will not post here. What happens now is that Dr. Shoffner will review her case, and then decide if she just needs a consultation or a consultation/ biopsy. Horizon Molecular Medicine is where he works and his description is as follows:
Dr. John Shoffner is board certified in Neurology, Biochemical Genetics, and in Molecular Genetics and directs the Molecular Laboratory at Horizon Molecular Medicine. Dr. Shoffner is internationally recognized and called upon for his work (clinical and research) with rare diseases (mitochondrial disease) and has authored over 70 research publications.

We are very confident that they will do their best to find out what is wrong with our baby girl. Still, she is 11 months old on Sunday and still only weighs 12lbs 15oz. All of your prayers have been heard and greatly appreciated. If not for them, Stacy and I, probably would have to be admitted to a mental institution by now. Again, thank you. We love all of you. I will continue to keep you updated on her progress and what news comes from Dr. Shoffner.




And again I'll post this for those who are also struggling.


OH SO TRUE:




END OF LINE


JR

Comments

BalekFekete's picture
Submitted by BalekFekete on Sun, 01/28/2007 - 21:25
Keep the faith Jolly...that's the best you can do. That, and pray that you'll finally be graced with an answer of what is going on, and even more importantly what can be done to get you all back on the road you'd like to be on right now. B.
Anonymous's picture
Submitted by Anonymous (not verified) on Fri, 01/26/2007 - 14:18
that is good news!!!! i am glad that you found someone that sounds like he has a lot of experience. That pic is the greatest
SNAFU5293's picture
Submitted by SNAFU5293 on Fri, 01/26/2007 - 14:23
As always good luck JR and Co. All of our Prayers and thoughs are with you
Deathmark's picture
Submitted by Deathmark on Fri, 01/26/2007 - 15:14
My friend found out with the birth of his second that both of his kids have cystic fibrosis so I've seen first hand what a sick child can do to the parents mental stability. They are stronger now than before but there are always difficult days. It is a struggle but keep your head up. Your daughter is beautiful.
OldManRiver48's picture
Submitted by OldManRiver48 on Sat, 01/27/2007 - 00:32
Pack on the lbs. Angel! (we'll take ounces too) Go Dr. Shoffner, you may be the answer to our prayers. :)
Anonymous's picture
Submitted by Anonymous (not verified) on Sat, 01/27/2007 - 19:06
Man oh man what a cute little girl you got there. Our prayers are with you as always :)
PeepshowJanitor's picture
Submitted by PeepshowJanitor on Sun, 01/28/2007 - 00:35
Hang in their Buddy!! God hears your prayers, and those of us praying for your little girl! My Daughter included her in her prayers tonight!

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