One week ago we flew to Baltimore for Kilah’s check up with Dr. Standard. Because we had a very early flight out of Flint Bishop, we set our alarm for 3am and woke Kilah up at 4am. We were back in our beds by 11:30pm that same day (so much better than the 11 hour drive one way). Southwest Airlines offers great deals from Flint to Baltimore and we are so blessed that all 3 of us were able to fly. Thank you again to everyone that participated in our “Kilah Art Auction” to help fund our trip. We raised over $600! It was much more than we needed. Any funds we didn’t use went into Kilah’s savings account for future medical costs. We are so blessed by our amazing network of family and friends. ❤
After picking up our rental car and heading into Baltimore we had, what some might call, a healthy appetite. We went to “Our Favorite Place” to eat near the hospital, Pepe’s. They DO have great food but mostly it’s one of the few places close to the hospital that we know how to get to and back without getting lost. Once we were refueled, we made our way to the RIAO to visit with Dr. Standard. As usual, we had a long wait to see our wonderful Doc.
X-Rays first :
After her X-Rays were done we had a little time to kill…
It’s best to utilize your exhaustion and turn it into “the sillies”.
Oh yeah… so the important stuff:
Dr. Standard said that Kilah’s Tibia and Ankle look wonderful. The bones are completely healed now. Kilah’s current discrepancy is 3.5 cm. He calculated her future discrepancy and, at this time, he is recommending we wait until age 7 to do her first lengthening. This was a major relief for me. Most of you know, we are expecting a little girl in June. I was also expecting surgery and a 3 month stay in Baltimore at the end of this year. This combination had me a little concerned. Taking care of a new baby while also taking care of a Fixator, Physical Therapy and administering meds to my 3 or 4 year old did not sound like a good time. Brandon and I are both thankful for this blessing. Doc also mentioned that Kilah has developed a slight Knock Knee. This happens with FH cases and is easily corrected with an Out Patient procedure. If it doesn’t get worse or become painful it may not ever need correction. A second lengthening would also be needed when she reaches skeletal maturity. Probably around age 13.
For now we will be taking her case a year at a time. We have an appointment scheduled for next March to see if anything has changed. Every Fibular Hemimelia case is different and there is no formula for treatment. Dr. Standard said to feel free to email or text him if there are any issues between now and next March. We are truly thankful for having met Dr. Standard. We feel like we are in the best hands and it’s a wonderful bonus that he’s a great person (and fun to be around too)!
Our appointment was over around 1:30pm and our flight home wasn’t until 10pm. You could say we had a little time to kill so we decided to check out the zoo. 57 degrees and sunny felt great to us Michiganders. My Brother’s family got us a Saginaw Zoo membership for Christmas and with it we could get into the Baltimore Zoo for 1/2 off. What a blessing! We had 2 hours until closing time and some how we managed to see most of the zoo before we left. It took Kilah about 3 minutes to fall into deep car sleep when we left from the zoo and began our drive to the airport.
It was a long and tiring day. We really made the best of it and had a fun family day. Thank you again to everyone that helped make our trip financially stress free. We love you all so much!
Thanks for reading.