August 28, 2011
I received an email update from Tatyana early yesterday concerning Sonya. Tatyana has granted me permission to post that email message below, and for the benefit of people not familiar with Sonya’s story I want to direct you to the link (see below) to the post on my blog that gives you detailed information on her story. If you scroll to the bottom of the page and work your way up from my original post dated 04-14-2011, you will get more of an idea of what this little girl and her family from the Ukraine have been through since the early part of this year. Sonya is in Chicago right now awaiting a rare operation called the Rex Shunt Procedure for Portal Hypertension. In Sonya’s case, no one can undermine the danger she faces regarding this procedure, or what her prognosis will be if doctor’s do not intervene. She has already had six bleeds to date since the early part of this year.
Due to the high cost of travel and medical expenses Sonya and Tatyana are here alone from the Ukraine, but Shelly Hart (yay Shelly) a Mom whose own daughter Aubree had a Rex Shunt 5 year’s ago will be spending the day with Tatyana while Sonya is in surgery on Monday (August 29th). Shelly heads up the parent advisory at Children’s Memorial. Kelly and Amy are 2 other mom’s who have offered moral support to Tatyana. Both Kelly and Amy’s kids are facing the same surgery and their schedules may possibly allow them to see Tatyana within the next week or so .
For Sonya’s story click here: http://www.portal-hypertension.com/little-sonyas-plight-update/
Thank you for your prayers. The bleed stopped and Sonya is feeling much better now. Her Hb (hemoglobin) is 9, so Dr. Superina says she will receive a blood transfusion during the surgery. Doctors let us go back to Ronald MacDonald house for the weekend where we now are staying.
Yesterday we spoke with Dr. Superina about her CT-scan results, and he feels like the area near the liver doesn’t look so promising for the Rex Shunt, but anyways he is going to try to proceed with one if he can. If after opening the area near her liver and he doesn’t find a vessel good enough to attach a Rex, then he is going to talk to me about the opportunity to do a Mesocaval Shunt instead. I am hoping that he finds a vessel good enough for a Rex Shunt. We could go to Moscow for a Mesocaval Shunt, but we are here for a Rex! But it doesn’t depend on the doctors desire, it is all dependant on Sonya’s anatomy. Dr. Superina gave me a bit of hope by telling that CT-scan doesn’t give a 100% garanty that a vessel exists or doesn’t, but he can only tell for sure when he opens up her liver and has a look.
August 25, 2011
For those of you who have been following the story of little Sonya Danilenko from the Ukraine – I have both good and some ‘disconcerting’ news to share with you this evening. On the good news front, Sonya and her mom arrived in Chicago from the Ukraine last Friday to begin the process for Sonya to have the Rex Shunt procedure which is to be performed by Dr. Riccardo Superina at Childrens Memorial Hospital early next week. On the bad news front, Sonya was taken into the hospital earlier this morning with a bleed. This is Sonya’s sixth bleeding episode since February when they first learned about her Portal Hypertension.
Please keep Sonya in your prayers and I will update you as soon as I hear of anything new. As you might expect Tatyana is very tired from the long journey, and add this latest ordeal to the mix well I am sure you can only imagine how she might feel. Prior to writing this latest post I had started to write a more detailed update a few days ago which included how they got this far in the journey but I will leave that for another time as this obviously takes precedence!
In the meantime if you are just learning about this little girl, you can view the prior posts by clicking the highlighted words within this sentence. Thanks for caring and praying!
Until next time,