The Day We Were Told Dana Has CP

It is not everyday you find out your child has a disability. I remember that day so clearly, the day we were told our baby has Cerebral Palsy as if it was yesterday. I was sitting on a chair opposite the paediatrician, she was writing her notes on the desk and drops in conversation, “well Dana has Cerebral Palsy”. No facts, no explanation, no guidance, no support. I was then told physiotherapy will be intouch to arrange an appointment. I looked at my husband and he looked at me shocked and confused. What did she just say?. I asked her to repeat what she had said and she added Dana would never hold a pen and able to write. Oh and then added Dana will also be confided to a wheelchair for life. I thought I had already sunk to the lowest point, yet hearing this just buried me further into the ground. I’m not sure how we managed to get home once we left the paediatricians office. We drove, that much I do know yet have no memory of the journey. I was numb. I looked at my beautiful daughter in her car seat, perfect, smiling and holding her toy. I was convinced this was a mistake and they had confused her with another baby. But what if this was true? What would her future look like? I switched on the computer and Googled Cerebral Palsy as we had nothing to guide us from the paediatrician. The searches appeared and did not show a hopeful picture. I looked at my daughter and then back at the screen. They were nothing alike. They got it wrong. Deep down I knew they were correct, but all I could do in that moment was cry. It took me that moment of crying for a wave of protectiveness to come over me. I made a vow to myself that the images on the screen were not going to be my daughter. I would do what ever it takes to make sure she led an independent and full life. Well a week has passed since that day at the paediatricians office without a single physio appointment. Little did I know today was the catalyst in making things happen rather than waiting for things to happen. Today was the foundation I laid and the path followed for years to come. Today Dana’s needs came first regardless. When what was promised didn’t materialise, I made it happen. When a comment was made that had no substance, I questioned. When I was told my daughter would never hold a pen or able to do things her peers did, I proved she could. Her disability does not define Dana as a person. She happens to have Cerebral Palsy. Throughout her childhood her disability has given her resilience and a strong will. Dana spent over 10 years at Stageschool learning drama and singing along side her peers. She acted on TV and appeared in a number of promotional campaigns including Red Nose. She has spent many hours in photo shoots and attended numerous auditions. She went to ballet and dance classes. All these experiences have exposed her to a world alongside her peers. A world with no limits. Her future path is not what the doctors had said. Her future path is taking responsibility and empowering from a young age. Today, as an 18 years old Dana has defied every single person. From school to doctors who either said she would not achieve anything or laughed at her dreams. She exceeded teachers expectations achieving 3 distinction stars and is studying Law in University. She is walking with sticks. She has become an independent and confident young lady with a strong and focused self-belief. I remember a teacher once told me Dana was very lucky to have secured a place in 6th form to study. The truth is Dana was not lucky, she had self belief and determination to achieve her dream. When you have these qualities, nothing will stop you.

Saying Goodbye to St Louis – Friday 16th

After 51 days in St Louis the time has come for us to say goodbye. Looking back there has certainly been a range of emotions and times where I thought ‘ What have I done’. We started this journey in the summer and returning to the UK in the autumn, to think we have gone into another season seems crazy.

What I will miss is being able to talk to other SDR parents especially those who have children of a similar age to Dana. That’s where Facebook comes in very handy, chatting with parents and chatting with the therapists/doctors. What did we do before facebook? I shall also miss the security of the therapists, having the daily contact whereby you can ask anything and will be dealt with at that time not weeks later. As an example Dana has had her splints altered 5 times now, each time orthotics corrected the problem either before therapy or during therapy. There are no wasted days waiting for action, the splints were corrected and the physio session continued. Seamless.

Although it’s our last day, we do have PT at 10am with Mike. Following yesterdays limited physio session because of a blister, which looks much better today; hopefully we can get a more productive session. It feels very sad leaving as the security of the therapists is just what I need, or so I think. Dana walks as usual now to the 4th floor even though she says the blister is sore and Darlene greets us. I have a gift of chocolates for her as she has been so friendly and kind to us and will miss her. Darlene then presents me with a box of biscuits as a parting gift. Was not expecting that - so thoughtful.

Blaire is out first collecting her patient, and I sneak in to give her a thank you gift that she opens and we say our goodbyes. Mike and Erica walk out to reception and I hand Erica a thank you gift, which is a pen. Erica has a habit of putting pens in her hair, strange habit. She is after all Hollywood’s personal hair stylist and am going to miss those wonderful creations. We all walk into therapy chatting and Mike mentions he will be videoing Dana for her post op assessment. Really hope this gives a true picture of all the hard work she has put in and the blister will not hold her back. Mike instructs Dana what to do and she follows well. On the treadmill (which has became her best friend, can’t wait for ours to be delivered back home) Mike increases the speed to the maximum Dana can tolerate which is 1.3 and then reduces it down for side and backward walking. After the videoing Dana goes on the biotech machine that tests the strength in each leg, and does really well. She finishes the session with a ride on the bike with weights attached of course, too easy otherwise. While Dana is away I am advised Dr Dobbs is able to see us at lunchtime, which is great as I have a few questions regarding her progress following surgery that are troubling me. Dana arrives back on the bike with Mike as our session is finished. I gave Mike some chocolates as a thank you as I had already bought some very colorful socks, which suited him so well and was wearing them today. We said our goodbyes, hugs all round and left for the very last time. On the way out I gave Darlene a big hug and said will miss her.

We had time to eat some lunch before seeing Dr Dobbs and again for the last time sat in the cafeteria.

The meeting with Dr Dobbs was reassuring and laid my questions to rest. He also said Dana is at the level he would expect her to be, which for me was a great relief. Dr Dobbs agreed he will review Dana when we return next year for our review with Dr Park. So that was it, orthopedics are happy with Dana, the therapists are happy and with all the paperwork in my hand including the PT post op evaluation we call for the hotels shuttle bus, again for the last time.

Back at the hotel the only thing on the agenda for Dana and I this afternoon is packing and clearing the apartment. I bag up the cupboard food for the remaining families who may want any and bag some toys, which the younger children can use and then pass on to other children when they leave.

Later in the evening we have a farewell takeaway and drinks with nearly all the remaining families at the hotel which is a lovely evening.

Sadly this part of the journey is complete, we done what we set out to do and what an achievement. Dana’s life changed on the 4th August and this date will always be special, another birthday for Dana. The months ahead will be hard, there is no denying, yet all achievable as her future is worth every second.

Our thanks to the generosity of the people in the UK who came together and made this journey possible. To all the SDR families for your support in the good times and the bad. Each family is so incredible and each has their own stories to tell and are all united in making a difference for their children. Finally not least to Dr Park and team, Dr Dobbs and team, all the therapists and everyone who was part in Dana achieving what she has to date. You are all very special and will never be forgotten, we both have great lasting memories.

Hollywood the Superstar

We are in our last week and it’s incredible to believe we have been in the USA just less than 2 months. Thinking back to day 1 seems such a long time ago and the time here has been something quite unique, I hope the blog and postings have given an insight to Dana’s journey.

We started the week’s physio with Mike, who is back after a weeks holiday, so makes for an interested physio session. I had given Mike an update on the weekend and how Dana had been practicing sitting on the swiss ball for balance and also focusing on stretching her back. Mike had a real treat for Dana after she boasted she had taken 3 independent steps at the hotel over the week end, so basically said ‘Great, I want you to walk for me’. To say Dana was shocked was an understatement, ‘you want me to walk’? Dana said. ‘Sure’ you told me you walked three steps’ . For those of you reading this blog who know Dana, she is a girl who visualizes herself doing things before actually mastering it properly, so in her mind the three steps converts to I can walk now. So I was thinking ok this is where it’s going to go horribly wrong and we are going to the ER. Dana stands and Mike is infront of her, she takes a step then hesitates, then take another and loses balance, gets into a panic, Mike calms and reassures her. Dana starts again takes a couple of steps and falls. ’Hollywood’ shouts Blaire, yes Hollywood is down and Mike scratches his head as he waits for Dana to get up. He’s got a long wait, I think to myself and eventually helps her up. So again Dana stands, Mike is in front, and off she goes, 15 independent steps on her own. She needs time to warm up. This is amazing progress. The quality was poor, as the knees and back again let her down. The balance is coming though and the confidence Dana is developing is way above my expectations. Better still she does 10 minutes on the treadmill at 1.0 & .09 non stop. She was dripping with sweat, bless her, this was a real workout and boy did Mike push her.

As a mum I know I let my fears and anxieties shadow and Monday proved how single minded Dana is and she can see herself achieving so much more. She doesn’t need any NLP techniques here. I know things back home will change as I have changed my mindset. I just have to encourage those around Dana to adopt the same approach. As things were in therapy in the UK pre SDR will not work now for Dana. The approach is too slow and the frequency not close enough. We as parents are Dana’s physio’s first and we have the tools to work with Dana. We will work with those around us and hope those around us will work with us. Only time will tell.

Tuesday’s physio with Erica was even better, 1.0 for 10 minutes with an incline for the last 30 seconds and hardly sweating. Dana also walked with her crutches as my goal is for Dana to walk into the plane with crutches. She did ok, again Dana takes a while to warm up and eventually gets a really nice rhythm going with stepping. We continue walking with crutches back at the hotel as part of her homework and go downstairs for dinner and a social evening with crutches. We sit with other families and chat but I feel distant, maybe I am just so tired. My body is tired and my mind is also. It’s always thinking and worrying, or planning when to do the physio homework. Right now I could do with a holiday or a spa for a night. That would be so nice. Bring myself back to now and listening to other families, we all have our worries but our minds are relaxed by celebrating a set of twins 4th birthday, which was so lovely. Such beautiful and well-mannered girls.

Wednesday I decide not to take the wheelchair to the hospital with us. It just felt right not to use it. Dana has school at 1pm and physio with Erica at 4pm. We make our way to the hotel lobby and wait for the shuttle bus. It’s pouring with rain and doesn’t stop all day. Dana has her rain mac on and needs to use the walker outside, so this will be good practice. I still take the crutches and feel so free not pushing the wheelchair. Dana and I chat as she walks along side me and it feels so right, so normal. We arrive at the hospital and John greets us and is pleased I have no wheelchair and gives his usual encouraging words. So does Diane who is the teacher in the school hospital, her face and words are so pleasing and encourages Dana to choose where she would like to sit. After an hour and a half of school, which is on the 8th floor, we head towards the cafeteria on the lower ground floor. Dana’s still going strong and walking proud. It’s time for physio and head to the 4th floor. How will Dana cope with an hour of intense physio after walking all day? Well only time will tell. Dana sits in reception after Doreen greets us both and has a well deserved rest. Erica collects us and we see Mike in the corridor. I say to Mike and Erica ‘ Look no wheelchair’ and gives us a high five. The first item on the agenda today is the treadmill and beating yesterdays time. Erica suggests walking for 11 minutes with an incline. Dana did the 11 minutes and with 5 minutes on a 0.4 incline. At one point she shouted ‘stop my muscles are tingling and feel itchy’ That’s normal Dana keep going. Next on the agenda was walking with crutches on her own, all 250 feet, now that’s a WOW. Lastly she wanted to ride the bike. I said that’s too easy and Erica put weights on the back of the bike. Now that’s a workout.

Dana did amazing today and the last few days, far exceeding what I expected. Her stamina has improved and today she walked where I walked and did far more activity than me. Her pace of walking is the same as mine, even quicker in some cases and the stepping is heel to toe. Today was a major breakthrough for me, allowing Dana the opportunity to walk and not putting my anxieties first. How do I know what Dana is able to achieve if I do not allow her the opportunity. Isn’t this what we are here for? What a feeling of freedom not to have the wheelchair. Finally Dana can develop and become the person she deserves to be.

Tomorrow Thursday Dana is 6 weeks post SDR and will have the final post video assessment. Really excited to see how much improvement has been made and develop a training programme for home.

Good Job Dana

Hollywood walking in style!

Hollywood Sit to Standing using Swiss Ball

My name is... Hollywood

Waking up this morning my mind quickly turns to the physio session later today with Blaire again. Clarity is what I need and to have a clear understanding of what the main concerns are and how to address them. Until then Dana’s goes through her usual routine and we go for breakfast, which this morning she says, wants to walk down in her walker. This is fine by me. She’s getting pretty quick now on the walker, ignoring the posture, and heads back to our room once we finish eating. After face-timing home, whereby get told, the boiler, the home PC and now the washing machine have all gone wrong, it’s time to go to Children’s as Dana has her second school lesson. I’m thinking it’s going to be an expensive week back home.

Again Dana walks downstairs in her walker and walks out of the hotel and gets in the shuttle bus, with some help. Once we arrive at Children’s she walks with her walker until we reach the lifts. She has done an incredible amount of walking and to make sure she doesn’t over do things before physio suggest she uses the wheelchair for a while. Reluctantly she agrees. The more she is able to do, the more she wants to do. Dana gets a personal sense of achievement, which is great and pushes herself even further. I keep looking at her knees and really wish she can straighten them. I will get ask again later; maybe there is something else I ought to be doing in order to help her.

Dana’s UK school has emailed over some worksheets for Dana to work on and it’s on Business Studies, which she is so excited about as it’s one of her new option subjects. I sit in the roof garden for the hour and start reading my book. I get distracted by a mum cuddling her baby, sitting on the rocking bench. The baby must be about 10 months old and has an IV in his arm with a splint. The mum is wearing a tee-shirt which reads ‘I have decided” I look at the words and smile, what do the words mean for this mum. The words for me are very clear and very appropriate at this time. I think to myself there are signs everywhere and we choose to take notice or not. Today I take notice of the tee-shirt.

After an hours lesson Dana leaves the room with a big smile and we head to therapy. As we come out of the lifts, Dana comes out of the wheelchair and uses her walker to walk into therapy. I place the leg wraps on her to encourage the knees to be kept apart when walking. She flies into therapy and reaches the physio area before Blaire. Blaire jokingly repeats ‘come on’ in her English accent which is so funny. Treadmill is first on the agenda and Dana is struggling with walking. She does walk for 16 mins and considering the amount of walking pre physio she had done already, it’s pretty good going. Dana has her usual groans that Blaire now has a nickname for her ‘Hollywood’ that gives you an idea of the kind of sessions Dana has. Her acting skills are superb.

Blaire and I have a good chat about my concerns and suggests assessing the cause of Dana’s knees pulling in. I talk through what Blaire is saying and understand the exercises which will focus on Dana’s needs specifically. The exercises aren’t new to me and have done them a hundred times before SDR, yet this time round it feels so different as it will have a direct impact on Dana’s future. Blaire has Dana kneeling with hands on the wall and attempts to extend each knee to the side, right then left side. Dana finds this incredibly hard, I find myself pushing with her. There is a lot of weakness and the left knee does not lift at all. Blaire talks through how to support Dana and where this exercise will target. It’s surprising though to find out this will affect from hip to upper body, targeting hips and lower body is something separate. The thought of Dana’s body having all the spasticity support her body all these years is so wrong. All the years of physio as parents thinking its helping your child yet physio is like the waves of the sea. You gentle do the exercises until the tide comes in and it’s back to square one. It’s awful to see Dana struggle and I know the tide will not come in, the exercises will become easier and she will become stronger. This is only short term in her whole life. Spasticity was for life and that in my eyes is far worse, it’s a crime.

Back at the hotel, Dana walks with her crutches and does well. After sitting for a while she stand up on her own and says look at me, then she takes two steps. The confidence is so mature and its so great to see. When she is complemented by the therapist for the good work, she replies ‘I know’ It so good to hear.