Posted By Posting
Jan 08, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Update on Mila(copied from other board)
Update by Sarah,Copied from P2p (hope u dont mind Sarah) First... thank you so much for all of your prayers and good wishes. So many of you have PM'd me with information on Chiari Malformation and resources, and people to talk to... And it has helped tremendously. Thank you thank you a million times. Yes... the ENT and the N.Surgeon came to talk to us today. Mila does not have visible vocal cord paralysis. This was a positive, as vocal cord paraylsis meant she would * absolutely * need surgery, and possibly right away. However.... Mila's abnormal MRI wasn't just abnormal. It was pretty dismal. The way the surgeon spoke to us was very straight forward. Cerebellar tonsils - even low lying CBT - should be under 6mm and rounded at the bottom. This shows that they are normal sized, and the curvature at the bottom means they aren't squished. Mila's cerebellar tonsils are OVER 13 mm, and compressed to a point at the end. Her symptoms are too common to be coincidental - chances are that her sleeping & eating issues *are* symptomatic of brainstem compression. Mila needs to have brain surgery in order to decompress this area. The N.surgeon will remove a portion of her skull, the first vertebrae, and possibly the second as well. They will then use a doppler to determine if the flow of cerebrospinal fluid is acceptable. If it is not... well, I'll worry about the hugely massive intense surgery that deals with that. This will be happening on February 3rd. The great news, is that we are STILL going on vacation on Saturday. I need a break. The kids need a break. Hubby needs a break. Irregardless, I am absolutely crushed, saddened, and horrified by the idea that my child needs this surgery.
Jan 08, 2009
jessicalynn
mom to 4 kids with probable
Mitochondrial Disease
http://ourbeautifulchaoticlife
.blogspot.com/
Dealing with Fundo, J tube feedings,Severe Dysmotility,Aspiration,Asthma,
FTT,CVS,Dysautonomia,Resp.Distress
Connective Tissue Disorder,
GERD,EGID,
Visceral Hyperalgesia, and more
Many meds
Please keep Mila in your prayers!
Jan 08, 2009
stickybean
I am Jacky, mommy to Joslyn Olivia (April 2008) and Katelyn Isabel (November 2009).
Joslyn was dx'ed with Silent Reflux with breath apnea at 5 days old. VERY SCARY!
Katelyn is a spitter reflux baby. Started at 3 days old as well. (Both were/are breast fed.. symptoms came on when my milk came in).
Joslyn has been reflux free since she was 12 months (suffered poor weight gain for a few months) and Katelyn is now on Zantac... waiting to see if it works.
oh heavens! Poor baby!

You bet she is in our prayers!!!!!!! Please let momma know!

Jan 08, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
My gosh Jessica, you must be super mom to deal with all this. My thoughts and well wishes for you guys. Poor Mila. Have a fantastic vacation, hope you guys can relax and play lots!!
Jan 08, 2009
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I wish I had the right words to say. I don't, so I'm going to just keep praying for healing for Mila and strength for her family.
Jan 08, 2009
maggiemom
Maggie is now 3 years old and reflux free (knock on wood). I still check in some to see how everybody is doing :) Hugs to all!
Thanks for sharing this with us Jessica.
Jan 08, 2009
b-girl
Mom to Jasmine aka: Jazz 01/24/2007
Dx with silent reflux at 8 months
FPIES, DGE, MSPI. Recently diagnosed with EC (Eosin. colitis and now Primary immune deficiency disease.
Also mom to Nathan. born Jan.20th, 2009, MPI . so far dx with reflux and has an extremely sensitibe GI system. Also dx with primary immune deficiency disease.
I meant Sarah, not Jessica... Sorry Sarah, I need some sleep!
Jan 08, 2009
engin117
My name is being used fraudently to ill represent me. Please be cautious of any information you receive with my name. including engi.nowaira.net, engi@nowaira.net, Engi@nowaira.us, anything from anyone claiming to be Engi Nowaira online. Otherwise, I will be representing myself in person so that everyone will have opportunity to identify me in person.
My previous drivers license was also stolen. The new one has extra security features on it.
May God guide their hands through this surgery and give this child the healing touch she needs. She is so beautiful inside and out and has been through so much.
Jan 09, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
Oh my...I am speechless and in tears...I will pray, meditate and do anything I can think of.....
Check with your
doctor first!