Ready fly to Florida |
Loving the pool at the hotel |
Waiting for surgery |
Decorating Mommy's "bunny suit" |
Ready to go back |
Feeling pretty good in the hospital |
Not so happy to get into the wheelchair |
Ready to get out of the hospital! |
Two peas in a pod |
Got the ok to go home! |
Thursday August 2nd Madi and I woke up bright and early to fly home. I knew flying home was going to be a little tricky. I had Madi in her brace, a backpack, my purse, a pillow and the stroller. I asked to board early on the first plane which they let me do but just had the flight attendants watch me as I struggled to get Madi, myself and our stuff to our seat. Thanks for the help! We got situated and she slept for most of the flight. When we landed in Dallas I waited for everyone to get off of the plane and then proceeded to try to load up the bags, pillow and Madi. As I was struggling to do this a flight attendant walked up to me and said "excuse me, can I just get past you". Are you kidding me??? No offer of assistance, no nothing. Thanks again! By this time I was spent. When time came to board our next flight, I was dreading it. I again asked to board early. This time, thank goodness, the flight attendant offered to help me and carried Madi's pillow and bag. She also told me to wait until everyone else got off when we landed and she would help me get off the plane, which she did. Thanks to that attendant!
So here we are at home. It feels so much better to be here. We decided to rent a wheelchair for Madi because she was getting a little big for the stroller. She loves it. Over all she is doing so well. She really has no pain, just itching from time to time but the rash looks so much better. I am slowly getting back to normal. I am exhausted but catching up on my sleep each day. My back is another story. Madi is so much bigger now than her first surgery and its so hard to pick her up all the time. Oh well, maybe a massage will be in order!
We have a 3 year old Maddie with PFFD. She is currently seeing Dr. Herring at Scottish Rite hospital. I am however not her biological mother and personally feel that the doctor isn't doing anything for her at this point until she is much older. Her biological mother passed away last year from a heart attack at 40. Madalynn is healthy and happy but I want her to have "full potential". She has other problems too such as with her arms not fully able to extend or bend.....we aren't sure as to why just yet. They're unable to diagnose since she has so much cartilage right now in her elbows. She also seems to have problems with her speech as she doesn't make complete words and really struggles with trying to repeat words. We have incorporated some sign language and that helps quite a bit. I see your little Madi and how courageous she is. She is truly an inspiration. I do wonder if it's alright with you, to know if your Madi or anyone else you may know with PFFD has these issues as well? I don't know if it's common with those with PFFD or if it's totally unrelated. I really want to learn more and you seem to have had many more experiences than we have so far. Any recommendations would be greatly appreciated. I hope your daughter has made a full recovery from her surgery and itching as I saw she had a reaction from the glue.
ReplyDeleteAlso I haven't ever replied to anyone's blog or ever created one. Could you tell me your thoughts on how it has affected you and your family by doing so?
I am sharing with you a story of our Maddie that her father and myself wrote for a safety sleeper bed.
http://www.funditfwd.org/spotlight/sponsor_Madalynn.html
Thank you so much for taking the time to read my comment and I look forward to hearing from you soon.
Alicia Edwards
Hi Alicia. You wouldn't by chance be talking about Tammy Edwards' Maddie? She was an amazing woman and I miss her facebook posts, they were always so optomistic and upbeat. Maddie is adorable. My Madi doesn't have any problems with her arms but she has had some delayed speech. It is getting better but I would say she is still probably 6 months behind. I did take her into have her evaluated by speech therapy about a year ago and they told me that it is not uncommon for kids with physical disabilities to be delayed because they are so focused on learning how to move and walk that they just aren't as focused on talking. They just recommended working with her and reading to her and making a picture book with her favorite things.
DeleteI would absolutely recommend Dr. Paley Florida. He is probably the most knowledgeable doctor in this type of condition. If nothing else you can send him and email with a copy of an xray of Maddie's and see what he says. That's what I did and he called me the next day and told me he could fix Madi's leg. Its not always been easy traveling but its been so worth it. The first surgery she had helped her so much with her walking. It can't hurt to see what he has to say.
Madi is doing really well and healing everyday. The itching is finally getting better.
The blog has been really good. It has been a nice way for friends and family to keep updated on her progress and I hope it helps other families with pffd kids as well.
I hope some of this has helped. Maddie is beautiful and I hope she is doing well. If you are on facebook, look me up under Lori Willcox. I am a friend on Tammy's facebook page. Let me know if there is anything else I can do or any other questions you have. I am happy to help. God bless!
Lori