Hi everyone,
It's been awhile since our last blog. My daughter Ginny is now five with bilateral pffd. We are not quite sure of the exact degree she has but it has affected her left femur. Her femur is in two parts but she walks,runs plays and even does the splits. Her leg grows only from the knee down. We have seen several doctors in this area and the three we have seen in the Ms. area say we need to amputate. We along with our physical therapist and one orthopedic doctor disagree. We have an appointment on July17,2008 with Dr.Paleys group in Baltimore. Can anyone give us some insight as too what to expect and what questions should we be asking at this visit. None of the doctors here even told us that amputation was what they were looking at until Oct.07. My question was how do you as a parent tell a child that is able to run and play with the grace of God and her lift shoe that mom and dad are going to take you to this hospital and let them cut your leg off where can't do these things anymore? Please help! All inputs will be appreciated. The flight will be at least 5 hours for us. Thanks in advance for your prayers.
Ginnysmom
Comments
A few quick ideas...
Hello from Minnesota!!
Ok, a couple of quick ideas that may be helpful on your visit to see Dr. Paley.
1. Plan to stay for a full day. Even if your appointment is early in the morning there are usually delays which make some appointments go into the
evening. So what we do is fly out the nite before, go for our appointment, and fly out the next morning. What happens is the existing patients
get first priority and then new consults go after that. And each new patient gets Dr. Paley's full attention while he is there so it does take some
time. How we look at it is if we were having a lengthening done and we needed to get help we would want to see the doctor right away, and
when we are there for a visit we just wait as we know our time will come. There isn't much that can be done, you just have to plan for it, and
make sure you bring a gameboy or coloring books or a portable dvd player or something to keep your little one busy.
2. Write down all of your questions in advance. It is very emotional when you are in the room looking to the doctors for help, and you always will
forget to ask a question or 2 and this will drive you crazy. If you have them written down you can cross them off as you go. They are very
used to this and they totally understand and will work thru the list with you.
3. Bring a tape recorder or a video camera. Again when the emotions are running high you sometimes don't hear everything exactly the same as
you would normally so having a taped backup to review later really, really helps!!! There were several times my wife Karla and I heard different
things and once we went back to the tape we had our answers whenever we needed them. Saved us from an argument or two..Heh.
4. Remember you are doing the research and you are trying to do what is best for you and your family!!!!! If for what ever reason don't feel like
the doctor has your best interests at heart, or you just don't think you and your family can handle the emotional and financial toll that going on
this journey can take on you then stick to your guns and trust your heart. Each case is different, and each child and family are different. You
really just need to do all the research you can, talk alot with your freinds and famliy, and choose the "best right answer" (thanks Adam's momma)
that will work for you and your family. Then you basically let go, and let God (or whoever your higher power is) do their thing.
I hope this little bit helps, and once you are done and have your "classification" please feel free to email us at ChuckBerg@msn.com, or call us collect at (763)494-8823 and we will gladly share any info. and be as helpful as we can. Our thoughts and prayers go out to you and your family as we do remember our first visit and how stressful that was. You are doing a wonderful job looking for help for your daughter, and what ever path you choose just be sure to love her with all of your heart, and help her to be an educated, confident, strong willed little girl who will have all the tools she needs to be in control of her own destiny. Good luck, and God Bless!!!
Sincerely,
Chuck, Karla, Dylan & McKenna
Ginny's First Appointment
THANK YOU SO MUCH!
I appreciated your response so much it means the world to have someone to share with that has been down the road we are about to travel. I would love to speak to you before we leave. I will write down your number and look forward to speaking to you soon.
Sincerely,
Ginnysmom