Janessa is kicking as usual right now, it's hard to believe that our baby may even have such a disease as this. Right now we are just doing as much as possible with her in the womb. We are still heading to Philadelphia on the 11th of March to have specialized tests done to see what they think and consider. We got chromosome tests back last Wednesday at our appointment, the Doctor said that there could already be renal damage to her, one of her protein results came back fairly high. I really hope that Janessa is doing okay in there, and not in any pain.
I recently received an email as well from Children's Hospital in Pittsburgh about what they work with, and the evaluation process. Our plan is to most likely have her flighted up to Pittsburgh since it's more specialized than down where we are. We are hoping for the best for baby Janessa! A lot of people on facebook, and family have been keeping her in their thoughts and prayers! We thank you so much for that, and hope you continue to do so for our little girl :). Today I read about a little boy named Samuel who is 9 months old today, and is doing amazing, he has MMIHS as well, and the blog post gave me so much hope and inspiration, I wanted to thank them for that hope that they gave me, and I will always keep hope and prayer with their son as well.
We have another appointment on the 10th with Dr. Evans, I guess we will see how well she is doing. We love our little girl so much! We hope that everyone keeps her in their thoughts and prayers. God bless you all.
Marybeth.
Dear Marybeth
ReplyDeleteHow are things going with Janessa? I’m writing from Italy. A friend of mine, Tamara Barone, is the aunt of Giorgia. Giorgia is a nearly 3 yars old little girl affected with Berdon Syndrom. Tamara would like to come in contact with you. Can you write to her using this e-mail address: t.barone@ttengineering.net?
Many thanks and best regards.
Alessandra Schofield