We are headed to Baltimore! Our appointment is May 3rd. My mom is going with Gracie and me, and we are going to tour the hospital/house on hospital grounds, meet with staff, etc! Robert will stay here with Landry because he has end of the year stuff at work, and Landry has school. I can't tell you how excited and sad I am. I'm excited because this means we will get an "official" diagnosis, develop a care plan, and I can prepare for as much as possible. Sad because it all just confirms our reality, which part of me just keeps hoping is a dream.
We took part in an online web chat that 2 of the doctors at RIAO offer once a month. This service alone was more informative then our office visit to the peds ortho doc out here. The staff, doctors, and other parents on this chat were so funny. It just made us feel like family. To have doctors who can give you a comfortable, reassuring feeling over a computer screen is amazing! I can not wait to meet them in person!! We feel that we have definitely found the right place to care for our daughter.
So...based on xrays and a doctors report that we sent, along with info on changes we are seeing in Gracie's foot/ankle...it sounds like Gracie will most likely have a foot/ankle reconstructive surgery at anywhere from 12-18 months. (Now, this is all over a computer, and could change when the Dr. Standard actually sees her in person. He also wants to get new xrays...the ones that were originally taken were not done very well). Dr. Standard felt like the FH diagnosis was probably accurate (it may also be a congenital femoral deficiency), but we'll get a more definitive answer when he can see her. We did get confirmation on the BEST part, and that is that it does appear to be mild. Now, mild still looks like surgery...but compared to what severe is...I'll take mild with a smile on my face!
I will keep everyone updated on our trip to RIAO in Baltimore, and just on how we're doing in general, but for now I am happy to have a path to start traveling on. Please pray for guidance for Robert and I as we have more and more decisions to make, for financial provision, for strength during the times that this gets hard for us, and for God to bless this journey we are on as a family.
Hi Heather..
ReplyDeleteIt's Sandie Reis - I used to work with your mom.
Last time I saw you, you were pregnant with this little Angel and its been wonderful seeing pictures of your little blessing :)
I saw your mom's post on FB with a link to this blog. I truly enjoyed reading about your journey from her birth until today.. You have an amazing mom and I'm so happy to hear that she will accompany you and Gracie to Maryland. I look forward to reading about her progress as I will keep you all in my thoughts.. Doors never close without others opening.. Your strength, faith and loved ones will see you, Robert, Landry and Gracie through the unknown.. thank you for sharing.
Best Wishes
Sandie