Hi all:
I just got off the phone with Erik and Dawn and they were elated after speaking with Dr. George Tiller, the Geneticist, whom, as Erik and the nurses and doctors at the hospital described, is the "smartest man in the world"!! Dr. Tiller was very nice and explained everything very thoroughly to Erik and Dawn!! Dr. Tiller told Erik and Dawn that it was really nice talking to an intelligent couple for a change ;-).
I took 4 pages of notes but is hard to read while tears of great joy are streaming down my face, so here goes:
- Dr. Tiller told them that Analise's markings on her nose and forehead were indicators of "Amyoplasia": Amyoplasia is a generalized lack in the newborn of muscular development and growth, with contracture and deformity at most joints. http://en.wikipedia.
org/wiki/Amyoplasia - Dr. Tiller told them that this is a totally random occurrence where there is some sort of disconnect in the spinal cord and there was no movement of the joints in utero and it was not caused by anything Erik or Dawn did or did not do.
- Dr. Tiller researched in his journals and found that the colonic atresia (the problem with the colon) IS associated to the Amyoplasia.
- They were told that Analise has arthrogryposis but it is not the most severe type because she has movement in her joints, which is a GREAT thing because some babies are born with very stiff joints that do not bend.
- DR. TILLER SAID THAT ANALISE SHOULD LIVE A FULL PRODUCTIVE LIFE, but will need YEARS of therapy, including splinting, taping, possible surgery, etc. of the arms and legs. They were told that they probably will not cast the feet because they want to allow as much movement as possible, but she will definitely need splinting, taping, and therapy.
- The toes in the ball of the foot turned in a little as well as the ankle, so she may need surgery in the future, if the therapy, casting, and taping does not work.
- Analise will start her occupational therapy immediately, every 6 hours for movement of her limbs and they will start keeping her elbows at 90 degrees (see photo of her proud papa feeding her).
- Dr. Tiller told Erik and Dawn that he expects that the brain scan will be normal and does not anticipate any neurological problems. He said that he also expects the genetic tests will come back normal.
- The echocardiogram showed a NORMAL HEALTHY HEART. (PRAISE GOD!!)
- Analise has not had any breathing episodes today and Erik and Dawn are hopeful that they will be able to hold her today, and if not today, then tomorrow. Erik was able to feed Analise with 5 cc's of Dawn's breast milk (Got milk! ;-) ) through a syringe, since the colostomy is now functioning.
- The full skeletal X-ray was not definitive, but the doctor did not anticipate any problems. He said that he wanted to take an X-ray of Analise's face, but she kept turning her chin up when they take the X-ray and he wanted to see her face not chin ;-), so that has not been done yet.
- FINALLY, ANALISE WILL NEED TREATMENT FOR MANY YEARS TO COME, BUT SHE IS AND WILL BE A BEAUTIFUL HEALTHY GIRL!!
I will also include this update in the blog we have created, http://www.sweetanalise.
So many of you have asked "how can we help" or "what can we do". At the suggestion of my sister-in-law Anaivett and my niece Zoara, I have included on the blog a button giving people an opportunity to share a gift of financial support for Erik and Dawn through Paypal, to help offset the financial challenges they will be having associated with Analise's long term treatment.
Again, thank you all for all your prayers, research, offers of help, etc.
Everyone googling, linking, and sharing through Facebook has been an extraordinary blessing to Erik, Dawn, and family, knowing how many friends, family, and total strangers are reaching out to them in love and support.
Feel free to post this information on your Facebook page or if you are Facebook challenged like us, you can pass it on via email.
Watch for future updates on the blog!! PRAISE GOD!!
Abuelita/Mom/Marti and Grandpa/Dad/Rich
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