I like to look back at our old blog every once in a while to see how far we have come..This post was kind of a coming out, going public with "Our New Journey". Everytime I look back it makes me cry! To see how far we have come, all the struggles we have endured and thinking about whatever the future may bring.
I was in the NICU visiting Frankie, he was about 48 hours old. The Neonatologist came by to talk to me. He said "We think your son has Rubinstein-Taybi Syndrome." We had talked about some characteristics before (an extra toe, a crooked toe and finger, flat-broad fingers and toes, and a prominent forehead). He handed me a book and walked away. At the moment I was thinking that he had a few minor physical defects, who cares? That didn't bother me. I put the book down and went on to feed Frankie. My mom arrived a while later and I let her hold him. I picked the book back up and started to read. I didn't get very far. The further I read the harder I cried. I read about medical issues, heart defects, eye problems, feeding problems, delayed development, mental retardation. I read about the average ages for developmental milestones- walking- 30 months, first words 25 months, I read that 90 percent have speech delays and some never talk.
All I could think was why Frankie? Why us? Why anyone? We had many sleepless tearful nights at first. Everytime I saw our little angel I started to cry. Our world was upside down.Frankie has had numerous Dr's appointments to check on the most common medical issues that come with RTS.
He has seen an Opthomologist who said everything looks good right now. He said that alot of problems don't become visible until about 3 months of age, so we will visit him again next month when Frankie is 3 months old.
He has seen a Cardiologist who noticed a small opening in his heart. It may be the normal opening that some newborns have that close on their own in time or it may be a true defect. Only time will tell. He also has a soft murmur because of this opening and possibly an extra heartbeat. We go back in 6 months.
He has seen a Genetic Specialist who confirmed his diagnosis of RTS. She said that based on his physical features it looks like he may have a mild case. This is what we pray for, but only time will tell. We see her again in 6 months to check on his development.
We go next week to an orthopedic Dr. to get a consult on his fingers and toes and also possibly his bone structure.
Frankie has also been referred to ECI he will be having Physical Therapy, Occupational Therapy, Speech Therapy and lots more through them over the next three years.
We can now answer the question "Why?" Why Frankie? Because this is how God wants him to be. Why us? Because God chose us. We are here to teach him, he is here to teach us. He has already taught us so much, he has already changed us so much! He has given so much to us and everyone around him. I see it in Mikaela everyday. She loves her little brother so much, there is no jealousy. It is very strange to see her so accepting of him with her being so young.
We are very blessed to have Frankie as our son, we no longer have to ask why. We know why, Frankie is here to change the world one heart at a time.
We are so thankful to have such wonderful, caring and giving family and friends. Thank you all.
Please continue to pray for our Angel, your prayers are going to carry him further than you can imagine. Much further than the Dr's predict!