Dana awoke this morning with much enthusiasm. it's been a long week for her and it was now Friday. This week had really thrown some curve balls as the Americans like to say and a lot of them evolved around trying to get Danas splits to not hurt her. Yesterday we visited the ortho department again to try and get them adjusted. We came out of their triumphant that lastly Danas splits were comfortable. Although it was the third time the splints required altering, the fact we can visit the orthotic department and get seen there and then is great. Further more the splints are altered within a short time.
We approached the 11am physio session which much renewed energy in that it's was going to be a great one where Dana blasted through her session. We were quite mistaken and three quarters of the way through we felt it was just not happening. Finally we said to the physio that we wanted Dana walking as she had spent a lot of time stretching and getting onto her knees. By this time the session was nearly over so we just took the bull by the horns and got Dana walking to the exit.
Dana seemed to struggle, her weight was not transferring and she seems to lean heavily on her frame......our hearts and minds sank, we seemed not to be progressing. Dana was tired and we decided that enough was enough and we would end the session.
We retreated to Starbucks that is nearby and sought solace in a double shot latte and marble cake. Dana also indulged in a hot chocolate and cake.
I understand that these sessions can sometimes seem as though you are pushing a big rock up a steep hill, I think it's natural to feel the way we are. I also understand that we are really at the start of our journey still. A journey that we often mention as a marathon instead of a sprint. What we have realised and we also need to convey is that Dr Park and his team have really given us the tools to begin our journey. But this journey is long and hard and will be years rather than months. A huge part of what Dana has to do is strengthen her legs and body to function the way it should and this is a long process, so maybe we are being a bit unrealistic with our expectations.
After the much needed caffeine break we decide to take Dana and Ollie to the Zoo in the car that we have hired. It's so nice to have freedom to drive where and when we please.
We find ourselves in Forest Park on the way to the Zoo, it's another hot day touching 90 degrees. On arrival to the Zoo we are met by a lovely lady called Donna who welcomes us to the Zoo and gives us a brief talk. We decide that it's the big cats that we want to see and head in that direction. We walk past the bears who look so hot and bored and make our way to the cats. They are lying idly in the shade and it seems that we are the idiots in the heat staring into the cages trying to gain a glance at these animals. they all look so sad and we decide to leave. As we walk around we see a train which travels around the zoo and Ollie is desperate to take a ride, so we all get on, Dana buckled in the front carriage in her wheelchair with us sitting on wooden benches. I love America, so disabled friendly, even the little train which travels around the zoo is accessible. After the 20 minute ride we get off the train and head back to the air conditioned car.
The afternoon is spent with Dana doing more physio back at the apartment and something amazing happens.
Dana is walking on her frame, straight, transferring weight, heel to toe on both legs for 137 feet. We stand in awe, it's like a different child. In fact this is what we can now see as a result of SDR and Hamstring and heel cords. Her walking is fluid, no more stiffness and her gait is fantastic, well almost.
All of a sudden it's staring to come together I think, not quite four weeks and three operations later we are at a point where I'm seeing major changes and progress, this is a cause for celebration.
We meet up with three families all from the UK who have also been on a similar journey to us. It's their last night before they go back home to face their futures with their children. They too like us have been through this emotional rollacoster over the past four weeks. A journey where they have faced the possibilities that their child could have awoken from the SDR operation, incontinent or even worse, paralyzed. They have had to make the tough decision to put their child through this procedure in spite of what could happen, but all along have put their faith in Dr Park and his team, who performed the same miracle with them as he has given us.
We have a drink or two and talk of our futures, days of struggle ahead yet excitement and we are all united in our purpose to get our children as independent as we can which will give them chances and hope every child deserves. All of the families here are strangers at the beginning yet through the Childrens Hospital network Facebook page we became friends even before we personally meet in St Louis. A SDR parent is the only person who truly can relate to the pain, emotion and guide you through, whatever stage you are at, as there is always someone who has been there. There is a bond that runs through all SDR parents.
We bid them a final farewell for now and wish them well and a safe journey and head to our room to place the night immobilizers on Dana’s legs before she goes to sleep. We all deserve to sleep in as it’s Saturday and plan to take a drive to a mall which is a half hour drive. Another hot day is forecast so an air conditioned building will feel comfortable.
It’s sad when families leave, but it won’t be long before new families arrive to start their journey. I like those before me will offer comfort to the new families and the hotel is well suited for families to get together. It may be on the shuttle bus or in the lobby or in the evening on the patio.
I can’t wait for physio on Monday and this week it’s for very different reasons and much more positive.
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