PIPER'S TRIP TO POLAND
Poland was, in a word, a “MIRACLE!” Piper can walk! She can crawl! She is a whole new child! This is the first step to many prayers that has been answered.
Before we left, Piper was taking about 10 steps before she would fall down. She was not able to crawl because she could not support herself with her left arm. She would drag her left leg and had no hip strength. The therapy that she was receiving from the state (especially since both her PT & OT quit) was just not cutting it. She was only eligible for 1 hour a week of PT and 1 hour a week of OT.
In Poland, the days were long, the weeks were longer, and a LOT of crying took place. Mostly from Duane and I because the food was so bad! Piper calmed down about half way through and really began to enjoy most of her therapy. Our days started early, we were up at 6:30 am Monday through Saturday and had Sundays off. We started in the cafeteria for breakfast and then onto therapy.
8:30-9:00 am - She was placed in the STANDER to build up endurance and teach her body the correct standing position. 30 MINUTES
9:30-10:00 am - POSITIONING. Piper was tied and held in the crawling position with arm braces to force her to support her weight. 30 MINUTES
10:00-12:00 pm - She started with a massage to warm and ready her muscles for the ADELI SUIT, then did exercises, learned the correct way to walk and taught how to walk up and down inclines and stairs. 2 HOURS
12:30-1:00 pm - UGUL. A pulley system was used with one pound weights attached to her arms or legs. They would push on pressure points to force Piper to pull and push through a gamete of exercises to strengthen her legs and hips. 30 MINUTES
1:00-1:30 pm - SPIDER. A belt is attached to bungee cords from four different sides and is placed around her waste. She is then taught how to squat, get up and down on her knees and stand up again. 30 MINUTES
1:30-2:00 pm - Lunch.
2:30-3:30 pm - Art and Music Therapy. We never made it to this therapy. Piper would eat and them pass out for a 2 hour nap each day.
It was AMAZING. Piper went from 2 hours a week of therapy to 36 HOURS A WEEK! She increased her hip strength allowing her to walk, gained muscle in her arms so she can crawl, learned how to follow directions...so much more. She is the youngest patient they have ever had and she did so well, that they are using her in a new video to help promote the therapy to new families that are not aware of it’s potential. They believe that if she attends the intensive therapy 3 more times within a years time and follow up with one time a year, that she will become INDEPENDENT and had a definite chance at NORMALCY!
It has been almost 2 months since we returned from our trip. Piper is trying to help sing songs, is walking up and down hills and on grass, she is crawling all over, is talking more, is getting into things and is even watching TV, We finally get to baby proof the house. For most parents, that is a hindrance. For us, it is a blessing. When we hear a parent yelling at a child for doing something they are not supposed to do, we want to yell back-“just be glad they can do it!” Piper is now the toddler we wished we would have one day. At 2 years and 9 months she is at the stage of a 1 ? year old. She still has a long way to go, and is slower than the other kids, but she is trying SO hard and we are just SO proud of her!
Since our return, California Children Services has CUT Pipers services. Funny thing is, the Polish doctors think that if Piper continues with the intense therapy that she has a chance at a normal life...however, the State doctor says that Piper is “functional” and is no longer eligible for either Physical or Occupational Therapy from the State. It does not matter that she still is unable to get up in the middle of the room or cannot dress herself or use a spoon... along with a list of other things, in their eyes, she is “functional” and our only chance at services is to fund it privately. We pray that we will find a way to continue on this path and will do everything in our power to help our little girl become everything that God has planned for her.
There is a song by Tommy Shane titled “What if she’s an Angel” and it reminds us of each of you. If you get the chance, but the album. We hope the song touches you as much as it does us. You are truly an Angel.
Thank you for giving our daughter a chance. God Bless You!
Tiffany, Duane, and Piper Nelson
P.S. - PLEASE help us to spread the word about CMV, the virus which caused Piper’s Cerebral Palsy and Cortical Visual Impairment. Most people, including Doctors, have never heard of it. Please get tested before and during your entire pregnancy! Insurance will not cover the testing unless you ask! PLEASE ask!!!