We are learning together

Today sees another 11am physio session with Blaire and I have asked the manager of the therapists to join Dana’s session this morning. My reasoning for this is to get a better understanding of where Dana should be by the time we leave. I’ve mentioned before as Dana is a lot older than the children currently here, I felt a more personalized therapy plan will help me develop a structure of achievable goals to work towards and also the therapists would be working in unity. Now we are almost at the end of the allotted 4 weeks of therapy, I wanted to have targets to work with and also know Dana is at the stage she should be.

During the session we discuss what I am looking for and quickly come to realize that the structured programme is not what is required and the therapist work on Dana and assess on a day by day basis. Although I feel uneasy about the approach, I do understand Dana’s body will alter and improve when it does and no amount of time can be allocated to this. Dana is much older than the other children here and her body has carried the spasticity for a lot more years than the other children. The improvements are, as we have seen much smaller and still rewarding. Yet I have a longing to see much much more, this will take months. I know I have to lower my expectation and focus on the smaller achievements not look out for the bigger ones and be disappointed. I got to remember Dana, who is working so incredibly hard, it hurts so much inside to see the grit and determination during therapy. She is not quite at 4 weeks post op yet; I just don’t want to let her down.

Mid way through the physio session Dana’s private UK physio, Kerry, via Skype, also joins us. What was interesting as I was introducing everyone and talking through what Dana has been through and what stage Dana is at currently, is just how far Dana has come. This in itself reaffirms for me Dana is progressing well and to not get worked up and focus on schedules and timelines. Not having schedules and timelines is very alien to me and I will have to adapt and look at this differently. After all Dana is changing her habits so I will do the same.

I hold my laptop like an amateur cameraman, adjusting the angle so Kerry has a good view of the therapy. Dana forces a smile now and again but mainly she is red faced and full of concentration. To have Kerry live at a US physio session is brilliant as very few UK physio will have experienced just a fraction of what the children go through and more importantly see the rehabilitation in action. Dana walks with her walker up and down the therapy room and walks forward and sideways on the treadmill for a few minutes. Her stamina is low, yet she achieves the best she can. We are all thrilled at Dana’s work today and as the session ends we say goodbye to Kerry and hopes to join us again at a future session. Blaire sets Dana homework for later and we say goodbye until tomorrow.

Having a car makes daily life here normal and sometimes you forget that home is actually the UK. For me the UK is not part of my mind and for Dana she is starting to miss home. When you grocery shop and cook nearly every night and it feels you are working all week, it certainly not a holiday. I am sure people will ask me if I had a nice holiday when I return to the UK. I will choose my words carefully when replying!! The experience is one I have never come across, yet there are parts that are similar to being in Budapest with Dana for months of therapy. Being alone and sharing that journey with other parents in the same situation as you. Going to the same building at a certain time daily. Grocery shopping and cooking.

We drive to outside St Louis as family life still continues, Ollie needs school shoes as he is back to school next Wednesday. My aim is also to buy Dana some school shoes. I enter a shop and start chatting with the shop assistant when a customer asks if I am from the UK. She is also English and has been living in the US for 6 years. We have a chat and when I ask her what part of the UK she is from, she replies Epsom, which is 20mins or so from where I live. She says she misses the UK desperately and wants to go back. We carry on chatting for a while and say goodbye. Everywhere you go people are so friendly and chatty.

We buy Ollie some school shoes, Dana however proves to be more difficult due to the splints. We decide for the few weeks she has left wearing the long splints she will wear her trainers and we will buy shoes for her ankle splints. Joy another shoe shopping trip.

Arriving back at the hotel early evening and after a short rest, I start on the homework with Dana. This involves 10 sets of 20 reps of sit to stand, weight transferring and side leg raises. At bed time it is the usual leg stretches, but that’s later and now it’s time for dinner.

Monday, Monday so good to me

11am is the time of our physio appointment today. The weekdays come around all too quickly and the hospital schedule raises it familiar head. Although our actual appointment is eleven we have a full list of ‘things to do’ at the hospital today. No trip to the hospital would now be complete unless we have our obligatory visit to the ortho department where we again try and get Danas splits corrected.

We thought we had sorted this issue out but hey presto, Dana is still getting a sore point on her foot and we need to get this addressed. Second item on our list today is our task of trying to get Danas sterry strips removed from her legs and calfskin that were placed on when she had her heel and hamstring surgery.

We attempted to remove these last night when giving Dana a shower as the doctors told us we could remove them after 10 days and it was actually day 12. Dana was having none of it and she was frozen to the spot petrified whist we attempted to take them off. Now the doctors also told us they would fall off, but no Danas were still stuck solid.

As we had tried yesterday we didn't feel quite confident and tentatively tried to remove them...they were not budging and the ones on her calf looked nasty which easily perturbed us from progressing anymore with our attempt to remove them. 'Mental note to ourselves, get the professionals to remove them at the hospital tomorrow!

Our 3rd and most important task on our list today was our appointment with Dr Park, the man for whom we had made this trip . We were unsure of how this would be as it was the review of Dana’s post op. We still had some questions we wanted to ask such as: Could Dana walk unaided? Did he manage to remove all the spasticity? What would he expect from her following his review? Did she pass the test?

And last on our list was the physio session.

We arrived at the hospital a bit later than we anticipated due to the fact we could not get up. We headed straight to the ortho ward where we hoped to collar Keith our friendly ortho man. Now Keith looks like what they class as the ' all American boy, tall, neat hair, fantastic teeth and muscular. He walks in and flashes his smile as always and I swear his teeth sparkle like they do on those TV ads. He gives a thumbs up and a wink, we smile back as he comes over and we explain the splits are still not right. He says no problem he'll take them to the workshop while we wait and gives his catchphrase "I'll get right on it!" and off he pops with Danas splits to visit the elves he has in his workshop. 20 minutes later Keith appears and said the splits are fixed and we head to the physio department.

Arriving at physio we meet our therapist for the day, Blaire. Now I feel sorry for Blaire as she has Dana and Blair is probably 5 months pregnant, about as big as Dana so when Dana needs moving about, you think....health and safety if you know what I mean. Blaire is good, she has what we like in our therapists....no mercy !

Blaire tells Dana to get on the couch to do some exercises and when Dana moans she says things like "Dana your moaning to somebody that doesn't care..." classic and with us going on at Dana also in the session, Dana has not choice but to just get on it. We get through the session with some resistance but not much but at the end Dana walks about 100 feet. She more or less collapses and is exhausted.
Dana has done incredibly well in this session and also managed to keep her knees apart today when walking because she was scared on getting her sterry strips caught.
We didn't have the heart to tell her she would not catch them and they would not come undone, but thought wise to keep quiet and let the fear be an aid to walking....bad parents!

Lunch bought welcome relief from the session and much needed nourishment for Dana.

2pm we found ourselves back in the hospital awaiting Dr Park. We we're shown into room 3 and told Dr Park would be shortly with us. We eagerly awaited! Dana felt nervous and so did I, not sure why but this seemed really important and almost like an approval.
Dr Park entered the room and shook our hands. He immediately asks Dana to show her walking to him. We arranged Danas walker and off she went, he watched closely, studying every move. He stopped her and asked us to alter her walker as it was too high, we obliged and off Dana went again. He nodded and smiled "Good, Good Dana " he said. He asked her to turn " Good" he repeated. She walked back to the chair and he said that she was doing really well and improving. He stretched her legs and was pleased with her progress and work she had been putting in, then tested her for loss of sensitivity and she responses as she should do with no loss

He tells us that Dana was free from spasticity now and that she can do anything she wants exercise wise. He told us it would be good for her to strengthen her muscles and we explained we had started to look at equipment to do this. He also explained that she would benefit form vigorous stretching and he asked us if we had bought the equipment he had informed us about, we informed him we had. We said we had noticed little things that had changed and he nodded in understanding.

In a way our journey through this was always going to come to this point. The point where you say " well what's the score Doctor, tell me straight" and what I heard was " everything is good" ,You can relax.

Reading this back now as I type it makes me realise what an incredible gift we have been given, a gift of life for Dana that will have some normality. sure it's going be tough but it's now up to us.

Dr Park then left us in the way he does best, he almost glides out of the room without any more questions and he's gone. Maybe it's his angle wings that carry him off quickly.

Our last task on the list was to get Dana sterry strips sorted so we venture up to the 10th floor to plead with the nurses to help us. They take one look at the sterry strips and calls a nurse practitioner, Katie to also inspect the dressings. Katie has a good look and starts touching the dressings much to Dana’s fear. After a while says they can stay on until they fall off naturally and to call her after two weeks if they don’t move. Dana is relieved, I on the other hand am not and finally we all leave the hospital at 3pm and head to the mall for a change of scenery and eventually dinner. We get into the car and the temperature says 110, time for air con again.

Back at the hotel later that evening I carry out the homework which Blaire has set Dana, which is to walk a set distance, the focus is knees apart, then focus on long strides. Sit to stand and finally weight transferring. All the exercises are done really well and the hard work shows on Dana’s red glowing face.

Someone told me it's all happening at the Zoo!

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.

What a difference a day makes - Day 3 on walker post surgeries

Day 1 on walker video footage post hamstrings/heelcord & SDR

Stand tall, Bottom in, Head Up

Last night the night splints were tolerated until about 1am and Dana was able to sleep the rest of the night with both Knee Immobilizers for the first time. The fear in Dana’s mind is of the strips over the four incisions and she feel safer having something hug her legs for protection. Of course this is not the reason why she has to wear them, but hey if it keeps them on her all night, I’m happy.

We get ready and have breakfast before our appointment with Blaire again at 11am. The taxi is due to pick us up again this morning and agree with Dana to use the shuttle bus again on our return journey.

John greets us as usual with his words and smiles as we enter the childrens hospital and we make a detour to our pit stop for my usual coffee and sit outside in the sunshine. It’s going to be hot again today, predication is temp of 99. I confirm our return flights and will be flying back on the 17th September. Thankfully the flight is a long way off and we head towards the 4th floor for our physio session with Blaire.

Blaire greets us in her usual smiley way and has such a positive nature. She also says ‘can’t is not a word which she accepts children to use’ I am always correcting Dana when she uses ‘can’t ‘ at home . Blaire is tough and firm when she has to be yet does it in such a gentle way. She starts Dana’s physio with a few stretches and then gets her straight on the walker. This part is the most upsetting and really hard to watch. I can’t stop myself telling Dana to ‘stand tall. bottom in, head up. I have said it for so many years now, it’s as natural as saying Good Morning. As yesterday, Dana really struggles, her thighs are really weak and her knees are pulling in. Blaire decides to strap each knee with a roll of stretchy bandage. This seems to be working as she appears to be walking taller and taking wider footing. Dana become tired very quickly and soon the hour finishes. As I watch her attempt to walk each time seems the same as the last yet Blaire says it was good and doing really well. The day splints seem to be doing their job which is a relief. As we wrap up the session Blaire presents Dana with her new sticks, how far in the distance does this feel when Dana will use them. Blaire says Dana will start standing with these tomorrow..

We head to the cafeteria again as we did yesterday and have lunch before calling the shuttle to pick us up. Dana manages to step up onto the shuttle with support, it's the getting down from the shuttle which needs a different technique. Dana needed a lot of support and I practically carry her to the wheelchair. Blaire has given us homework as usual for the afternoon and evening. Before I attempt any further physio I must go grocery shopping and take the shuttle bus to the store. A while later while I am finishing, the hotel manager from our hotel approaches me in the stores and says he will wait for me and gives me a lift back to hotel. I pay at the till and push the second cart outside, expecting the shuttle bus, but no it's a proper car and a very nice one. He loads the boot with my shopping and I sit in the front. We arrive at the hotel and I put all the shopping bags on to the hotel cart to take up to my room.

Dana’s physio continues later in the afternoon. I place the bandages around each knee and she walks with her walker 50 feet, the improvement from the morning is incredible. More of the same I think over the next few days. Towards the end of the evening I do some stretching and strengthening which will build on the thigh muscles. She is exhausted and after dinner wants to go to bed and read.

I am feeling much more reassuranced and the turning point was defiantly the walking Dana did at the hotel in the afternoon with me. Well done girl, keep it up you can do this.

A move in the right direction

Today is the start of a new week and my attention turns to what the outcome of today’s physio session will be. Focus for today and the rest of the week is to strengthen Dana’s legs and a return to at least pre operations.

The taxi has been booked for 8.30am which takes us to the Childrens Hospital. The first point of call is the orthotic department following an email this morning confirming Keith is able to alter Dana’s splints before physio at 11am. The department is busy yet has calmness. There are no screaming children, no loud voices. I think the x box games helps plus having a fish tank as a focal point in the middle of the room. Keith soon appears and shakes my hand and asks how we are. He thanked me for my email, which I said I hope he didn’t mind me emailing him. He replied no at all, you can email me anytime. Keith examined Dana’s splints and Dana explained where they felt tight. Within ten minutes he had made the longer splints wider and we were out of there.

Physio is at 11am and we had an hour to go, so we head to Starbucks and thankfully the rain has stopped. We speak to John and he knows where I’m heading, he getting to know us very well. We have a brief chat about Grace and Dr Park who are featured in the hospitals newspaper I notice he has hightlighted some sections and seems very interested in the feature. John admits he really didn’t appreciate how amazing Dr Park is and mentioned he will make a point to shake his hand when he walks into the hospital. Starbucks also gives me the opportunity to catch up on emails. Finally I have a decent cup of coffee, I order double shots, single shots is far too weak, yuk . Just before physio we have just enough time to pick up a few solution swabs which will make taking the leg dressings easier for us and Dana. I ask a RN my request and she replies no problem how many do you need. After I explain, the RN hands me a couple of strips. Dana starts to complain the splints are starting to hurt as we make our way to the therapy department.

Blaire meets us in the waiting area where we are chatting with another family and leads us into the physio area. Dana mentions the splints are hurting and advise we have already seen Keith. Dana manages to a couple of minutes on the leg press and some standing on her frame while kicking a ball. She is in real pain now so Blaire takes off the splints and sees a pressure point on her foot. It is throbbing and red. Blaire puts a band aid as a cushion and the physio continues. Blaire now suggests walking with the walker. Now imagine Dana has more strength in one of her legs so her walking pattern is less lifting her foot more dragging. The momentum that Dana is told before stepping forward is transfer weight, lift leg and step through. She is supported quite a bit by Blaire and struggles to walk less distance she had previously walked post SDR. Her face is one of grit and determination and it takes every ounce of strength to walk. Blaire suggests a few exercises which I need to focus on and agree to work on this later that afternoon at the hotel.

The work Dana has given today is 110 % and wish improvements can be matched to the amount of hard work shown. Sadly it can’t, well not straight away. The more she continues to work this well the rewards will show for themselves.

Blaire suggests she walk with us to see Keith and as we walk to the orthotics department, Keith appears. Yet again nothing is too much trouble as Keith takes a look at the pressure point left on Dana’s foot and after a few minutes Keith has adjusted the ankle splint this time and refits both on Dana. It’s now lunchtime and in two and a half hours we have had the splints adjusted twice and have a physio session. Food is a welcome relief now and head to the cafeteria for lunch.

The taxi is booked to pick us up at 1.30 from the hospital, now it is nearly 2pm and we are still waiting. I call and ask if he is on his way to be told he has forgotten and will be with us in 20 minutes. This just , well you can imagine how I feel, and after nearly an hour of waiting, the taxi turns up and I politely explain the implications of not turning up on time.

We arrive at the hotel and head back to our room, I now have the joy of removing all four dressings from Dana’s legs and quickly get the solution swabs from my bag which the RN gave me. If there was an Oscar for loudest scream and acting award Dana will win. Believe me it was not the most pleasant job to do and I’m not a natural when it comes to things like this. Yes they are all removed after nearly an hour and the shower finally awaits..

Today has been a move in the right direction by getting Dana on her feet and ensuring the splints are suitable. We can only build on today for further session this week while keeping up with the stretches twice a day. I am truly grateful to a few of the SDR mums who know exactly what to say as they have been there. I appreciate the honesty and clear view of things to come, even if I can’t see it just yet. EC, you also are there for me on the other end of this virtual world day or night. I thank you all. I am told to stay strong which I do on the outside, inside I’m a mess – no one sees that part, Dana doesn’t. She has a strong mum who is positive and truly believes every part of human nature and behavior is being tested.

Days I never want repeated

The last few days and over the weekend have been the most disheartening and uncomfortable to date. Recovery following the hamstring and heel cord operation has been slow and at times felt we are going backwards. It is by far worse than recovery post SDR. Nothing prepares you for how you feel other than talking to mums who have been where I am now.

Dana is now day 5 post op and still is relying heavily on physical support. Her transfers are 90% supported and Dana is starting to side step in the transfers but again is really pushing down for physical support. You know Dana is really trying to take more weight herself, yet she has no strength. She has described how her left leg feels like lead when she tries to lift it.

I can’t see when she will get back to where she was post SDR, when she was doing so well and now we have put her way back. Was this the right thing to do? That question haunts me everyday, seeing her the way she is makes me feel awful. What have we done?

The splints, which we received on Friday are painful and need adjusting. Dana tolerated them for about 3 hrs over 3 days, she was meant to wear them for 8 hrs over 3 days. This in itself may not appear terrible to you, but to Dana it has put her back at least 3 days. During the weekend our aim was to start walking with her frame. As the splints were not tolerated, there was not even an attempt to start walking. So we continue with the stretches and transfers.

Deanna from the therapy department is great at getting back to ask when we email over the weekend to ask about the splints and what should we do/not do.
Her quick response sends a reassuring message to us and I feel we are not alone.
We are advised what to do and follow the instructions.

I am so glad we are staying for a further couple of weeks; the thought of going home at the moment is just too scary. Home is so far removed from my mind as the focus is just on Dana.

I constantly ask myself are there any other stretches we should be doing. I look for the slightest improvement, applying less pressure on me or pushing through on her feet and standing that bit taller.

Thank goodness it’s Monday, the weekend could not have ended quickly enough for me. We are back at physio at 11am and hopefully will see the orthotics team before 11am to adjust the splints and we will have a really good physio sessions.

Seriously, it is so hard at the moment to keep positive. I’m getting fed up of being in the hotel and the restriction of just using the accessible taxi. Tomorrow is the start of a new week and pray it will get better for Dana.

Ouch that hurt!!!!

10 am saw us waiting in front of the residence Inn ready for another physio appointment. We saw the shuttle bus pass by, as now we have consigned ourselves to having to get a private taxi to and from the hospital and any other location that we need to get to as we cannot get Dana back on the shuttle bus until she is strong enough to weight bear and she’s far to heavy to just pick up and place her in the shuttle bus.

Joshua turned up again in his familiar cream coloured Chrysler, he’s our regular driver and always on time and courteous and his cab is always immaculate. We found him when we fist come out of having the SDR operation and realized we needed a taxi that could take Dana in the taxi in her wheelchair.

We board and are soon at the hospital. We are on tender hooks, for today we should have the splits and we need them for the weekend. The past 48 hours have taken toil on our backs and joints as we have struggled with transferring Dana to and from her chair to the toilet and bed and any other place that’s not her wheelchair. We have been afraid of overstretching her heel cords as we were warned the first day we needed to be careful.
The splits will enable us to keep Danas heel stabilized.

We arrive at the physio department and soon we see Mike who makes his way to us. He informs me that he has spoken with the office for the orthotics team and the lady he spoke with could not assure him that the splits will be available in our session today. My blood starts to boil and I feel myself starting to get angry. I quickly calm myself and think positively that we still have today before everybody effectively shuts for the weekend.
Blaire our physio for the day then appears and we proceed with her to where we will be having our session.

Dana starts gently and its soon becomes apparent to Blaire that Dana has been working hard and her strength in her legs are returning. She is able to get a good range of stretch on Danas hamstrings, and Blaire suggests that we can do some walking which she will ensure is safe for Dana. This doesn't stop Dana saying to Blaire when being stretched 'I'm in spasm and now my muscles have gone into shock' Blaire just laughs and says she must start a board with kids sayings, this one she said would be top of the list.

Blaire starts to move the equipment around and asks Dana just to use her feet on the floor whilst sitting on the bench and move up a bit. Dana starts to do this and all of a sudden lurches forward off the bench towards the floor.
I see Dana start to fall and although I’m about five feet away dive to try and catch her. I manage to break her fall and stop her from careering into the treadmill, and I fall awkwardly on my knee.
Dana is in bits and now in tears, we get her back to the bench, My knee is throbbing and a large bruise is appearing...I’m now concerned and fraught Dana has hurt herself and damaged something. We cuddle her and perform a visual check, she appears to be ok, we ask her if she’s ok and she tells us yes.
We get her quickly to perform some standing to check that everything is ok, Danas scared but we tell her she needs to ‘get back on that horse’ otherwise she will lose confidence and we need to get her in a positive place.
She listens and performs a couple of sit to stand exercises and tells us everything is ok and nothing hurts…….phew!
The physio session from that point really goes out of the window. All of the sudden Mike appears with a chap who has come to fit Dana’s splits. We all cheer. The chap then goes about fitting the splits and making adjustments to ensure they fit well. Mike then disappears and then reappears with arms full of t-shirts that he has promised which says ‘ Selective Dorsal Rhizotomy, St Louis Children’s Hospital’. These seem to be really what it says, been there, done that…now have the T-Shirt!

We then spend the rest of the session getting advice from Blaire on split usage, and protocol. We are now armed with Long leg splits for walking, ankle splits for when the long leg splints are discarded after 6-8 weeks, night splits and knee immobilizers for night time and a head full of knowledge on what we should be doing. I make notes as the time tolerated will be increased daily.
We leave the session with a feeling that we have achieved and learnt many things but have not really progressed with Dana’s physio.

Now I feel more satisfied that we still have four weeks to work with Dana in and out of physio. A lot of parents have had the hamstrings and heel cords lengthened and only had a week to work on the physio before going home.
I realize that this would be really difficult and we need for Dana to maintain the focus on her sessions in and outside the hospital.

We get back to our hotel to drop off all the equipment we now have, the sun is shining, its 90 degrees and hot and were stuck without suitable transport to get Dana around. We are also too far to walk anywhere. We know we need to go and get new shoes now for Dana’s splints tomorrow and make arrangements with Joshua to pick us up at 11am.
Role on tomorrow…It’s the weekend so a few lazy mornings, some fun and physio at ‘home’.

Step in Time

Dana has a good sleep last night without much pain, just the odd spasm and without taking Valium, which is a vast improvement on the previous night. She even tolerated her Knee Immobilizers for an hour as instructed by Blaire without too much complaining.

We have physio with Mike at 11am and hope the splints have been shipped from Washington overnight. Sitting in reception which is becoming familiar to us now and getting to know the receptionist quite well, Mike appears with his usual bright smile, hippy beads and a bright red t-shirt with a logo on the front which reads SDR Party 2011 and on the back read Mad Mike 1, which suits him very well. We chat as we walk into the therapy room about his t-shirt and about the party next year which we shall also be attending. The conversation moves on to the splints which haven’t been shipped due to the suppliers not completing the order in time. Mike is straight on the phone to ensure the splints will be on tonights shipment and assures us it will. Now where have I heard this before!!! We take no chances and as soon as physio is finished we will make our way to orthotics just to make sure.

Mike assessed Dana pain level for yesterday and today. I said she had not wanted to have any pain relief last night or this morning and Mike suggested she should take something before therapy just to take the edge off and make physio as pain free as possible. Dana is tough and does fight through the pain yet on the other hand she will think it hurts before it actually does, so physiologically it’s no bad thing giving her some medication. The session started a complete disaster as Mike suggested Dana was going to kick a ball in a net. Dana was really struggling with shuffling forward on her wheelchair so Mike could transfer her onto a normal chair. She was shouting it was hurting her heel cord or hurting her hamstrings. Dana watches to many hospital programmes and listens too well when the doctors are describing things to us. Other kids would say my leg hurts or my foot hurts. Every few minutes she would say ‘I’m having a spasm’. I don’t deny she has spasms and also I do know she was thinking it was going to hurt before it may of done. I felt like a sergeant major and hate doing it but I know she can do it and more importantly she needs to know she can do it. Mike does the chair transfer which was quite hard work, so decides to go back a few stages and builds up to where he intended to start from this morning. He gets Dana to lift her legs alternately on the spot, then step side to side, then move her feet around the chair. Finally he lifts alternate legs until she feels a pull, to give her a stretch. We get to the stage where Mike lifts Dana and she tries to march on the spot, then he makes her transfer her weight from side to side. After all this, what seems so easy to us yet probably seems like climbing a mountain to Dana he asks her when he lifts and takes her weight, to move her feet and step towards another chair positioned to the side. She attempts this several times until Mike is comfortable Dana is able to do this. She is exhausted and listens to Mike explain the more times she does this the less the painful it will be. Again we reassure Dana it will be ok and she is doing really well. All this takes 50 mins and the last 10 mins is taken up with the initial objective of kicking a ball into a net while sitting on a chair, which she does beautifully. I feel as if I’ve run the 10k again as you are concentrating on what Mike is explaining to you, hanging on his every word and looking how he is holding Dana. You absorb so much it all becomes a blur and you go though the days physio again later in the day making sure you have understood everything.

Once physio has finished we head to orthotics and speak to Keith to get a definitive answer on the splints. He confirms they are on a special order and will be shipped tonight. One of his team will need to fit them on Dana as she will have an ankle splint fitted in a long legged splint. Not sure how that will work, soon see tomorrow. Then we have the joy of shoe shopping to buy shoes to fit over the splints. These shoes will be cheap as the long legged splints will be discarded after 6 weeks. You can only imagine now when we are in the shoe shop as Dana will have her sights on a pair of shoes which will either be impractical or expensive and I will look for the cheapest but look ok for the time she needs them. Oh happy days!!

When we get back to the hotel we do repeat the mornings physio again and initial talk through the steps until clear of the process which reduces Dana’s anxiety. We do a lot of sit to stand and the more she does, the more she feels comfortable. I am reminded by Dana, she is 2 days post op, as if that will make a difference.

One of the most interesting things I have noticed is how hard the physio’s push the children and what seems perhaps not suitable in your experience actually is very appropriate. As an example when Dana had a tendon release back in the UK she was in plaster for 6 weeks. That’s 6 weeks of no physio at all. After Dana had her hamstring lengthened and heel cord, there is no plaster, as Dr Dobbs said it hinders a childs progress and on day 2 post op they are riding a bike for half an hour.

Dana wanted to socialise this evening so after dinner we head down stairs and meet other UK families who are at the same stage as us. It good seeing Dana relaxed and laughing while I’m talking to another mum. We share our experiences about our time here which to me feels like it is happening to someone else. We both feel a bit unsettled still, although there has been plenty to keep us both occupied. I am sure when we eventually return to the UK I will look back and think how did we do all this, and most importantly how did Dana manage to be so brave and tough and do what was asked of her.

Another Discharge Day and another bag full of medication

Dana has a really uncomfortable night last night with spasms in her legs lasting around four hours on and off. The spasms really hit hard and she screams in pain. Deep breathing eases the pain a bit and Dana refuses to take pain relief, but after a few hours I call the nurse to give her some pain relief which by this point was around 11pm. Dana is crying which is a mixture of pain, the effects of surgery and needing to sleep. She settles down around midnight although she is talking throughout the night calling my name and asking for help, which when I look up she is sleeping. This coupled with the nurses coming in every few hours to take Dana's stats makes for a sleepless night.

I must of drifted off to sleep as two figures appeared beside Dana's bed which made me jump. Two of Dr Dobbs' team came and reviewed Dana at 6am. Not a cute doctor in sight this time. I soon woke up and started talking with the doctors who are happy to discharge Dana today and also answer my queries, which is mainly to do with the dressings as one has leaked and was advised to just put another dressing on top. This is not pretty however is normal, as is the tenderness Dana is feeling especially in the heel and of course the spasms which is very common after this surgery. The main concern for Dana is the IV line which is also being removed today. I wasn't prepared just how much more pain Dana would be in this time round, mainly to do with the spasms and also how dependant she has become again. We really are back to the beginning, which is upsetting, yet when I think of the long term benefits this is really just a minor hiccup. It is hard on a daily basis.

The doctor did make me laugh when I asked if she was able to remove the dressing from her SDR operation. She said everyone in the OR had it in their minds that Dana was not to leave the OR until this dressing was taken off. She said it was like a cross check by a whole number of people, every one was asking, making sure the dressing had been removed. The scar looks lovely and straight as if Dr Park had used a ruler and so small.

When the doctors had left, all I wanted to do is get back into bed, believe me this was not going to happen. I ordered breakfast and while we were waiting give Dana a freshen up before Blaire arrived. In a space of 45 mins we had a nurse, nurse practitioner, breakfast and Blaire arrive one after the other. Fortunately Dana was eating some dry cornflakes when Blaire showed up which didn't stop Blaire just getting on with showing the stretches which are important to do today. Dana was still having the odd spasms yet seemed to cope with it better during the day than at night. Each time Blaire attempted to touch Dana, Dana would clam up, this is no good for stretching nor for the spasms. We encourage yet again deep breathing, Dana pants which makes us laugh. Dana is not impressed but I feel better. Dana makes steady movements as Blaire shows us what to do and then we repeat. After an hour Blaire goes and now I can finally eat my breakfast, as her physio session with Mike is at 11am.

Dana catches up with her friends on Facebook while I pop down to pharmacy and pick up the medication. While I'm gone I hear there was a dog visitor which freaked her out. Poor animals. Mike also arrives and brings with him a bike. The look on Dana's face is horror. Yet she does really well and manages to ride for half an hour around the hospital twice. I'm tiring just walking, hate to think how Dana feels. We head back to the room and Mike goes through showing how to transfer Dana. This is familiar as we are back where we were post SDR. When Mike leaves Dana officially gets discharged and with a bag full of medication head to the cafeteria for some lunch.

Some butterflies are being released on the roof garden so we head up to the 8th floor and take a look. Dana's not impressed at all and just wants to get back to the hotel, while Ollie is so excited and manages to hold a few on his finger. We call for the usual assessable taxi and are soon walking through the hotel lobby. It feels so good to be back and the thought of no further operation just lots of hard work.

I give Dana some pain relief which helps and I end up falling asleep. I never fall asleep in the afternoons yet my body had other idea. I even miss a telephone call and notice the light on the answer phone flash. I do a few stretches with Dana to keep the momentum going as it is so important to keep the legs moving and also build up the strength in the quads. It takes all of Dana's strength to complete the set and does really well.

I feel the focus has moved away from the SDR operation and very much now on post op hamstrings and heel cords which I suppose all equals to strengthening her legs to enable function. It is sometimes quite overwhelming for us as parents to keep up with all the information given to us. We want to do the right thing for our children, encouraging and motivating them, but inside you have run out of steam, yet somehow the energy comes back at just the right moment. It is comforting knowing other families are going through the same thing, yet I do find myself in my own little bubble whereby my focus is purely Dana and I really do not want to know about anything else.

Dana is back with Mike tomorrow at 11am so at least she is able to have a restful morning. Hoping the pain is that much better and the splints have finally arrived.

Up and Down

We are due at the hospital for 10.30 this morning and I discreetly eat some breakfast as Dana is not allowed to eat anything since midnight last night. I aim to be at the hospital as soon as possible to establish if the splints will arrive this week. Blaire had informed us yesterday Dana is unable to walk without splints as this may lengthen the hamstrings further which would cause problems. So I was a bit anxious to find out where we stood and should we in fact even go ahead with the operation today.

We arrive at the hospital and make our way to the 4th floor to speak to Blaire, who is featured in the hospitals newspaper this week with another UK child who also has had SDR. Anyway I speak to Blaire who confirmed the splints have been sent to the supplier in Washington, however may not arrive until Monday. Now I am really panicking, what do I do? Blaire makes another phone call and confirms the splints should be with us by Thursday and says she will visit us in the ward later in the afternoon. My thoughts turn to all the hard work Dana has done during the last week and not being able to attempt to start taking steps until worst case scenario Monday, surely that can't be right. Blaire assures me the splints will be with us by Thursday and on that reassurance we go ahead with the op.

We make our way to the 6th floor and are familiar with the procedure, checking in at reception the receptionist greets Dana personally as we approach the desk and I look around and stop at the door which is the room we spent the morning of 4th August in when Dana was in surgery for SDR. There is another name on the door, another child in surgery and another family going through the same emotions I went through that day. My heart sank, firstly because we have come through that stage and secondly because I deeply felt for the family. I mentioned to the receptionist we were in there and she said all Dr Park's children get the 1st class treatment and I replied to seeing one of the cubicles assigned to us, we were now in economy or coach class as they say in America. I follow the nurse to the bed assigned to Dana for the pre med and we follow exactly the same procedure as a few weeks ago. A child life specialist introduced him self and talks with Dana for a while. Then again as before a whole series of professionals came in to Dana's cubicle. We had the same Nurse Practitioner who remembered Dana from last time. The nurse came in with Dana's pre med and I knew we were going to have a difficult time again. Dana refused to accept it and said she was not having the operation and fixed her lips tight. It took us 15 mins and a threat of giving the pre med by injection for Dana to finally take it orally. She is a real nightmare with pre meds. Dr Dobbs came in shortly after and we had a really good conversation about the procedure again and I asked about growth spurts and future operations. He replied and said Dana will not require further surgery and the physio, ie all the stretching we do will maintain the legs supple. I felt as if a weight had been lifted. You know even with Dr Park we have conversations about Dana, not just about SDR or the other surgery, but also about the future and how her body will be when she is older. Finally we have two doctors who as a parent can actually relate to and not feel as if my child is just a number. There is a plan here, a plan in which you are able to develop a timeline and see the progress made and also know what you have still to achieve. As a parent you are part of a conversation here and not feel you are talked at, as you are in the UK. There have been lot of occasions in the UK when I have raised concerns and been fobbed off by the doctors saying to me 'lets review in 6 months' or 'lets see how things go' The truth is they are playing with childrens lives and leaving things rolling over for years and years will add complications as the child grows. Believe me Dana is living proof of this and playing roulette with children has got to stop.

Dana gave me strict instructions not to walk with her part way to the OR and that she wanted to go alone with the nurses. This is while she had facebooked her friends and updated them on the pre med. Why I do not know, I just let it go, anything for peace. Dana was true to her word and with the orange flavoured mask in her hands, kissed her and said see you later, she was wheeled to the OR. How can she be brave during this bit and not take a bit of pre med??? She told the nurses to take it slow as she wanted to take in the scenery to the OR. Very weird. I took all the belonging to the cubicle and waited for that phone call to say all is well. With Ollie in the sibling room it was defiantly time for a coffee.

On my return I see the family who are in the 1st class room and have a really good chat with them. They look so frightened and I can really relate to what she was feeling and saying. The hour goes by so quickly and the phone call comes through. It's Dr Dobbs to say the operation went extremely well and he managed to get a very good stretch and we will be very pleased with the results. What fantastic news and I sigh with relief. I'm still on a high from being told no more surgery. Another call comes through shortly after to say Dana is in recovery. She looked so much better than when I saw her after SDR and soon after we all make our way to the 10th floor.

The layout on the 10th floor is much the same as the 12th and Dana has a room to herself again. No Amish family in sight this time. At our pre op consultation we were asked if Dana would stay the night as they recommend it and I said yes. Yet out of three children I knew was having the same procedure today, Dana is the only one who has stayed. I am so glad we decided to stay as Dana has been having terrible muscle spasms and she has a bit of leakage from one of the dressings. I would not know what to do if I was in the hotel.

When we arrive in her room, Dana is in a really bad mood, I know again it's the medication and that fact she hates the IV line and complains even further as it is in the wrist, Ooh! She is not in any pain at the moment but her attitude is awful and embarrassing. She slips in conversation when she was wheeled to the OR, she was actually in the OR awake as they moved her onto the operating table, then she was put to sleep after that. How can she go through this and not able to take the pre med. Blaire comes in as promised and chats through the splint issue and how we progress with physio. She suggested returning in the morning at 8.30 and then Dana is scheduled with Mike anyway at 11am and he will come to the ward instead of us going to the therapy department. Dana will need to be transferred as before whereby she is lifted to transfer. Great we really are back to Day 1.

Dana has some pasta for dinner as she is so hungry but need to be careful eating too much, so we start with Water and crackers. She even has a hot chocolate which the nurse makes for her. During the night she is suffering from terrible spasms and get some pain relief.

Physio will resume tomorrow and its going to be a painful one, hopefully she will manage the pain with medications and we can work on some bed stretches. Let's hope.

Preparing for Part Two

We had a fairly relaxing weekend as Dana does not have physio appointments at the hospital, but we still do the stretches from the booklet which are mandatory twice daily 7 days a week. Dana also manages to walk up and down stairs and increase her time with the walker. My aim is not to push Dana to hard but to ensure enough progress is made each day she feels the difference.

It's an early start again this morning, I say early, it is in Dana's eyes. If I left Dana to wake me up we would be looking at midday. Dana does like her bed. Ollie on the other hand has a little routine in the mornings. He wakes up and gets up at 6am, helps himself to an apple and juice, turns the telly on and sits on the sofa watching TV and eating. Somethings will always be the same.

At breakfast we meet a new family who have returned for a few days as her daughter had SDR last year and the mother wanted to see Dr Park and also see the physios. Dana talked with the daughter while I had a good chat with her mum. The conversation turns to Dana's operations tomorrow and she tells me her daughter was not able to put weight through her feet for 10 days. This horrifies me, this will take Dana right back to Day 1 again. What I have learnt since being here is parents will share their experience and yes you can listen, however do not take it on board personally as each child is so very different. Yet it is really difficult to be objective when your child is going through it. I feel with tomorrows operation I'm damed if I do and damed if I don't. Dana does need both operations and it is more effective to have this done at the same time as SDR. On the other hand as a mum you really do not want to see your child in pain.

We make our way to the shuttle bus as I'm going to see if Dana can manage the steps on the bus and yes she does with help. This is so great as we don't have to use the accessible taxi. We arrive at the hospital in plenty on time and make our way to our usual pit stop Starbucks, coffee is really weak, not a bit like A&M!!! Back at the hospital we make our way to the usual 4th floor and meet another family who's daughter, Emily, is slightly older than Dana and will also have the same surgery tomorrow. We discuss tomorrow and how we are feeling as we walk into the therapy department and register at reception.

Dana's physio session this morning is with Blaire who is like the others very knowledgable and immediately starts Dana on the treadmill following a few stretches. This time Dana walks for 8 mins stopping only once for a rest. This is such an improvement and Blaire is so pleased. I notice Mike walking past and gives Dana a high five. Blaire also demo's a couple of additional stretches as Dana's thigh and pelvic area, especially on the right is extremely weak which is resulting in her leg and foot compensating. Every physio session Dana has is also an education for me. I learn something new about how Dana's body moves each day. This is coupled with guidelines written in stages dependant on post recovery week which is a therapist and parent guide. Blaire advises Dana will need her splints after tomorrows operation and must not walk without them. Walking without the splint after surgery will lengthen the hamstring further which you will not regain function. This adds another fear to my list for tomorrow, believe me this list is ever so long. Blaire calls Keith to find out if the splints are ready and leaves a message for him to return her call. Blaire also advises Dana will be sore for 3 days, so by Friday we should see an improvement, of course bearing in mind Dana has the splints and she can put weight through her feet. I leave physio feeling really unsure about tomorrow and must put my trust once again in the doctors and the physios.

We decide to travel to the mall by metro so take a walk to the nearest station which is a couple of mins from the hospital by the time you walk out of the campus. The metro is a cross between a tram and tube. People can cross the track and the stations are part of the street. The first thing I notice is a security presence and with a gun. Not sure if I feel safe or scared. I buy the train tickets @ just over $2 for a round trip and wait on the platform for the train. It feels creepy even though it is full of commuters. As we board there is a police officer in our carriage, great more security and as we pass each station I see further security guards. Its time to get off , thank goodness and we walk to the mall. A change of scenery is just what's needed and a welcome break. I Skype my cousin in Italy as Dana has never met her and we have a video chat which is really nice. Dana and Ollie say hello and meet each other for the first time.

By the time we are back at the hotel it's nearly 6pm and my mind turns to tomorrow. I will pack an over night bag in the morning as Dana will be staying the night as a precaution. A lot of families take their children back to the hotel the same day, which is not what I want to do, I'd rather Dana recover properly from the anaesthetic and get the pain relief she needs. Also Blaire said she would do a bed visit later that day. We have to be at the hospital for 10.30am, which is 4.30pm UK time and I think surgery is around midday. Dana's worry is if she has any IV lines and doesn't fully understand how much pain she may be in, I have prepared her. I think it is quite a lot to take in what ever age you are and still have to perform rehab every day.

I am thinking if extending my stay for a couple of weeks longer is going to be enough, Surly 5 more weeks we will see quite a big difference. I hope so. Home is not important and my focus is purely centred around Dana. That crystal ball will came in very handy again.

Stepping Up

Its Friday and the last day for this week at least, Dana has physio at the Children's Hospital. Starting to feel a bit like the school run. We take things a bit easier this morning and following breakfast make a start on Dana's stretches referring to the exercise bible. Although I have done these stretches a hundred times before in the UK, it feels and seems different. I think I still feel scared hurting Dana's back if I lift her leg or foot too high and there are a few exercises which I am not sure I should be including. I will ask Mike later when Dana has physio.

After the stretches are done, Dana goes on Facebook and chats with school friends giving them an insiders guide to everything while I have an overdue date with a pile of ironing. Ironing at any other time I would have put down as one of those hated chores, this time however it is a welcome relief and comes as a bit of normality and gives me time to think. I also make the three beds, 2 queen size and 1 king and I actually enjoy it. I even tell the maid not to worry about our room today.

After yesterday's unexpected news of Dana needing the heel cord operation in addition to the hamstrings, my concern is the effectiveness of this due to an Achilles tendon release which was done in 2007 and log on to email Dr Dobbs directly. I notice James, the International Co-ordinator for SDR has already emailed me to ask if we what to go ahead with both. I reply with my concerns and also to request another urine sample for Dana as not sure we ought to continue with antibiotics as the doctor said no infection was present yet the nurse said it was borderline. Within half an hour I have a reply from a physician concerning the urine infection and suggests I stop the antibiotic and monitor Dana for any symptoms, then if necessary a sample can be done. Dr Dobbs replied later in the afternoon and confirmed Dana will benefit from the heel cord although he did say she would benefit even further had the Achilles tendon release not been done at all. This is just typical again of the way procedures are performed in the UK, reactive not proactive. I was led to believe back in 2007 this was the right procedure for Dana, I had no idea and gave no thought to the implications later in life. Dana shouldn't have had this done. Looking back I didn't have the understanding of how the hamstrings and heel cords work. Nor may I say did anyone bother to explain. Taking this all in has become quite overwhelming yet again, just as we are recovering from SDR, it seems like another big hurdle we have to jump. We will do it.

The hotel has a fire alarm test all morning and the fire alarm rings very loudly throughout the hotel including our room several times, Dana is completely freaked out. We head downstairs and Dana insists we sit outside as she feels safer. We meet another family and I start talking to the father who's child had the same procedure mid week. He tells me his story of how his child is still suffering. It's not what I want to hear yet I listen to his story. As he is talking I think back to what Mike said yesterday, that after the hamstring and heel cord children do go back a bit but having it done soon after SDR will give the child the optimum benefit and after a week of so they will just fly. I do hope Mike is right. I put my faith yet again in Dr Park and now Dr Dobbs.

It's 4pm and Mike collects Dana from reception for her hour's physio session. We have a brief chat and I can see he is thinking while we are talking. Mike asks Dana if she has done steps yet, no she replied and we head towards the fire exit and the concrete staircase. Dana manages to step up and down 5 steps with help and walk a bit also. Wow we may now even be able to get a normal taxi and even use the shuttle bus again. Mike continues the hour with kneel to standing and Dana does struggle with this. It shows and confirms to me that Dana is able to try out a range of positions and fear is playing a bit part. The stairs have taken quite a bit from her and she starts to flag a bit. While Dana takes a break Mike answers my queries regarding the exercises in the booklets and proceeds to show me a demo. I am much clearer now. Finally Mike asks Dana to stand and step on an off a stepper. Although this may appear easy, for Dana it is a totally different understanding and reprogramming of stepping.

There are rewards and that is seeing the smallest thing Dana achieves is a stepping stone and re programming Dana has to do. This time the work goes straight to her muscles and the increased tone does not even feature as it has now gone.

It's a Mad, Mad, Mad World

Dana awakens after another fantastic sleep very refreshed. Last night she managed to turn herself without calling out for help...another small milestone. Its funny how the small milestones mean a lot. You can't describe it to anyone to see your child start returning to the same ways as before this operation, is really comforting.

We start the day with organizing ourselves not to miss breakfast, which finishes at 9.30, and manage to get ourselves out the apartment door in time to enjoy another complimentary breakfast at the residence inn. Ollie and Dana both enjoy scrambled eggs and sausages, whilst I eat a bowl of porridge or oatmeal as the locals say. This start to the day will enable me to eat lots of sugar later. The Americans do a lot of things really well and some things we have discovered not so well. Sugar they do well! They must do because you certainly see lots of people who have enjoyed their portions of sugar walking all around. In fact they have enjoyed mine and your portions of sugar also.

We then return to our room to start the day’s activities that are vital for the SDR surgery to be successful. We start to go through the booklet that we have been given which is our SDR rehab bible. It shows us all the exercises we should do and the ones we should not attempt yet. Everything is so well put together; it’s like a step-by-step guide. Fortunately we are not new to these exercises so we perform them with Dana with a reasonable level of confidence.

Its now 11am and we find ourselves in a position where we do not have to be at the hospital for Danas physio sessions until 4pm. It’s sunny outside and the world beckons. We decided to take a short walk, well about 35 minutes to a nearby neighborhood called Lafayette Square.
Those of you that know it will know its to be a fairly well to do urban neighborhood with picture postcard houses and a fabulous park. We arrive in the local high street, well more of a splattering of shops and immediately seek solace from the sun in a coffee shop called 'Perk Coffee". Here comes the first of the sugar indulgences 'Banana Chocolate cake'.
Well all this physio with Dana is hard work.
We return back to our hotel in time to make our daily trip to the St Louis Children’s Hospital to our physio session with Mike.

So what you need to understand is that Mike is known as Mad Mike. It's not my label but I can now only agree with the description. Mike is a lovely chap, I’d say possibly around 50. He wears Hippy beads and is just so full of excitement. He is fantastic with the children’s and really gets the best out of them in their sessions.

Dana starts by telling Mike she's been walking with her walker today for about 12 steps. He responds with a 'Go girlfriend and gives her a high five'. He then hands us a piece of paper from Dr Dobbs telling us that after consultation with Dr Park, Dana's hamstring surgery will now also consist of heel cords.
My heart sinks and a lump appears in my throat. I was not prepared for that. I was ok with the fact that Dana was going to have her Hamstrings done, but heel cords as well. I think Mike notices the change in my stance and bursts into saying that Dana will be so fantastic having
everything done at the same time. She will be able to stand better, taller and also her feet will be more able to support what she needs to do with the heel cord surgery. He also says that Dr Dobbs is as good as Dr Park and he implicitly trusts him. This helps to reduce the anxiousness I'm feeling and I can start to see that it will be good for Dana.

Mike quickly shifts focus again in his own excitable way and tells Dana she is going to walk on her frame. Dana responds that she can walk to the end of the therapy room, about 50 feet away. I look at Mike with in-trepridation, and he looks back at me with those mad eyes...Game on.
Dana gets up on her walker and starts to go, I hold her hips to steady her but she's off.
She's like Ben Johnson on steroids and if anybody remembers the 100 metre Mens final in Los Angeles, where an unknown sprinter called Ben Johnson scraped into the mens 100M finals only to come out on the days of the final to whip the backside off the reigning champion Carl Lewis with plenty of distance in front.

She gets to 40 feet and she's done, she needs to sit.

Dana then announces to Mike she wants to continue the rest of the way. I can tell that Dana is getting tired and I urge her not to overdo it and to focus on her quality of walking not the quantity. She gets back up once again and she's off, determined to get to the end of the room and she does. Fifty two feet is her final distance, and just to think only Sunday she could not walk two steps.

We take her wheelchair into the gym room where Mike wheels her to a machine that's similar to the leg extension machines in the gym. Mike explains that he is going to test how strong her legs are and this in turn will show us how much she needs to work. He gets her unbuckled from her wheelchair and with a confident lift she’s up on the machine. He explains that she is going to play a game and he wants her to kick as quick and hard as she can. He straps her right leg in ready for action and fiddles with the computer to set it up. The computer starts to work and it shows Dana a traffic light system which when turns to Green she needs to kick as fast as she can.
The machine indicates Dana to go and she starts kicking as fast as she can...Mike is more or less jumping up and down telling Dana to kick fast and hard. My god this is hard work, Dana is gritting her teeth and pushing her legs as hard and fast as she can. This is unbelievable, I realize not only is Dana pushing this machine but also actually it dawns on me that she is pushing really fast and with explosive strength. Before SDR Dana could never do this, she had no explosive strength and now she has. I’m amazed and Mike is off the wall with praise and enthusiasm. Dana then repeats this with her other leg which was always the weaker one. By this time she is spent and energy is depleted.
I ask Mike about the weight she is pushing and her informs me that Dana has to be able to support her body weight on one leg, as she will need it for when she is running at school sport days.
Running at school sports days, am I dreaming, did her just say that? I never ever thought I'd here somebody say that about Dana...why would have I, but in this place of magic that's the Children's Hospital of St Louis, dreams can come true.
The session ends and Mike praises Dana saying that she is doing so well. She has amazed us yet again and she just asks if I'm proud of her. I tell her that I'm always proud of her and she is truly fantastic.


I treat her to a well-earned mini pack of pringles for all her hard work.... back tomorrow for another assault on Her body.

Preparing for Hamstring Operation

Dana had a really good nights sleep and did not need or want any pain relief which was welcoming. We have a physio session at the hospital with Erica again this morning at 9am and have booked the same taxi as yesterday to take us there. I give Dana medication to help with the nerves ending which have been cut and are still shooting messages after we get ready and make our way downstairs for breakfast. I like the fact the hotel provide breakfast as this makes it so much easier in the mornings. We see a physio from the UK who has flown with the family of the child she treats on the NHS at breakfast and we discuss the little boy and Dana's progress. The physio was given study leave of a week by her Trust. What a fantastic learning opportunity as she is working with the best physiotherapists who are leaders in SDR rehabilitation. Why can't this be replicated across the country as families are travelling every week from the UK so their children receive this care. Dana has been working with a private physio before we flew to the USA who will join us via Skype on one of Dana's physio sessions in the coming weeks which will be exciting.

We arrive at the hospital a little bit early and sit in the large reception area where we chat with John who is there welcoming staff and everyone as they enter the building. He tells me he has twin boys and feels truly blessed they are healthy. Johns is a very humble man and is very caring who's profession suits him. I must ask him tomorrow why it's always so cold in the hospital. Seriously I have to go outside to get warm and wear a cardi inside. Wherever you are in the hospital it is freezing. Back home it's the complete opposite.

On the 4th floor we register at reception as usual and sit until Erica collects Dana. I chat to the receptionist who tells me she is the only one on reception and works from 8am - 4.30pm. I am sure I will get to know her better as the weeks progress. Erica calls for Dana and we chat about how Dana is feeling as we make our way to the area of todays session. She asks Dana what she would like to do today and what are the goals she would like to achieve during her time here. How refreshing to hear this is a partnership. Their relationship will be very special I just know it, Dana feels so comfortable here and is so willing to do anything they ask of her. One thing which I do have to control is the amount of chat Dana likes to do. My goodness she has a story for every topic and tell it in great detail. I make a shut lip action to her and she is quite, Erica just laughs. The phrases 'concentrate Dana', 'Dana stop talking' and 'focus Dana' I use a lot. It's incredible to hear what Erica suggests for today, after some stretches Dana will go on the treadmill, leg press and bike. You know she did fantastically, two and a half minutes on the treadmill, 10 leg press, and two laps of the therapy room on the bike. I will post pictures of the therapy room, it is more like the size of a school gym hall. This is only the beginning, can you imagine after a few weeks of this type of therapy, she will be fitter than me. Dana has already told me she wants to walk race for life, now that is a long term goal.
The final thing Erica did was to measure Dana for her crutches and gets to choose what colour to have, Dana has chosen pale blue as first, purple as second choice and red third. We meet another therapist called Mike, actually mad Mike as he known. Dana has him tomorrow so more about Mike tomorrow.

We have until 3.30pm until our next appointment with Dr Dobbs to discuss the hamstring lengthening so we make our way to Starbucks which conveniently is situated in the hospital campus. I sit while we eat and drink and catch up with emails. We meet Dana's intensive care nurse in there and I chat with her, Dana cannot remember her so slightly embarrassing but Dana smiles and politely has a chat. We head back to the hospital as I need to speak with pharmacy, I got confused with the mg amounts to the mls amounts, just didn't make sense. The pharmacist explained the mg matched the strength of the mls which made sense now and did not equal like for like. We Skype nanny and grandad and both Dana and Ollie are pleased to speak to them. Its lovely they can speak to one another. Ollie got upset as he said he didn't have the same time as Dana speaking with nanny.

We have a deli sandwich on the campus and the sky turns a nasty grey, we see lightening and a roar of thunder so we make our way back to the hospital, within seconds it felt like someone had turned on a massive tap, it started to rain so heavy we stopped under a shelter until it passed.

The day was beginning to take it's toll on Dana, she needed to sleep yet we had to see Dr Dobbs. She was in some pain so moving positions was important to relieve the pressure on her back. Dana stands and side steps whenever she feels she wants to which helps. We make our way to Dr Dobbs department and again register at reception. Our appointment is at 3.30pm we are seen at 4.30pm, I suppose somethings are impossible to control. We are shown to a private consultation room and advised Dr Dobbs will be in soon. Over here the doctors comes to the patient rather than the other way round. Dr Dobbs walked in with his team, as did Dr Park when we met with him. Dr Dobbs sat on a stool infront of Dana and to the side of us and asked us a few questions about Dana's history and asked if he could look at her feet. When he took Dana's right shoe off, his face was one of shock. He had seen the operation on Dana's foot and was horrified at the scars left behind. He didn't need to say anything, his face was enough, however he did confirm to Dana when she asked what the scar would be like, by shaking his head and saying they would be much better than the ones she had. He said also that he and Dr Park work very closely together and very much as a team. I asked what Dana would feel in her legs after the operation and he explained very clearly to us. He confirmed Dana has a bed on the ward for the night which Dana will use and that physio will continue the next day. The hamstring lengthening is scheduled for the 16th August. Dr Dobbs and his team left and I was left so reassured how professional and slick everything is run. His PA arrived and confirmed our contact details and we were give his business card if we wanted to email or phone Dr Dobbs directly and an information sheet about the procedure to take away with us.

So it a bit like here we go again, but so worth it in the long term. As I enter deeper in this journey it is quite over whelming at what a decision we made coming here. It's interesting how other families deal with their childrens journey. I feel very grateful Dana is here and Dr Park and team accepted her. Dana has changed since the op, I can't put my finger on it but there is something different about her, in a positive way. She did make me laugh, she sent a friend request to Dr Park on Facebook and he accepted. Not sure he knows what he has let himself in for. Ollie on the other hand is hooked on the teenage programme i-Carly and picking up american words.

Discharge Papers and a bag full of medications

It's Tuesday morning and Day 5 post op which means discharge day. There is one more in patient physio session at 9am this morning with Erica who will also see if Dana is fit for discharge.

I am woken up this morning by a female student doctor who comes in to Dana's room at 6.30am, she stands while I wake myself up and I start talking about how Dana is feeling, asking her questions. She replies I have to repeat my questions to the doctor who will follow in 10mins or so as she doesn't know the answers. Yes cute doctor will arrive in 10 mins giving me time to at least get out of bed. He is happy with Dana's progress and happy to discharge her.

We get ready for physio and go to the 4th floor again taking the staff lifts. Its great Dana has Erica as she did her pre op physio assessment so has a good understanding of Dana's range of movements before the operation. We register at reception and take a seat in the waiting room where there is a TV and a number of colourful toys which kids can touch and move objects around, really interactive. The reception desk has circles as panels all across the front desk which have small marbles within the circles. Ollie heads straights for this and starts rolling the colourful marbles. Erica comes out and calls for Dana, we are shown to an area where Dana will be working for the next hour. During the session Dana did a lot of stand to sit and side stepping slowly. This is fantastic work. The determination is Dana's face is of someone who really wants to walk and work really hard to achieve this. They say a picture says a thousand words, well the picture of Dana's face says it all.

I am still worried about Dana putting weight through her feet, as transferring her is really difficult. Erica assures me she will get stronger and she can do the things she can do before, just as long as Dana can tolerate it. I am advised that is Dana moves that's fine however I am shown how to move her, therefore not to do passive moves on Dana. The hour goes really quickly and Erica gives us the all clear to go 'home'. How will Dana manage sitting on the toilet, well we will have a go when back at the hotel. We head back to the ward and wait for pharmacy to get Dana's discharge medication ready and to be discharged officially from the ward. Allie is back today and goes through the paperwork and explains about the 7 different types of medication,two or three will be regulars others are as needed. As I look at the list it's quite overwhelming, the doses are in mg and was assured each bottle will have mls stated. The list has the following: Tylenol, tylenol with codeine, suppositories, diazepam, gabapentin, miralax powder, sulfarrethoxazole. I sign I have been explained everything regarding discharge and make my way to the pharmacy on the 1st floor to pick up the meds. The pharmacist converted the mg to mls for the tylenol as it is an over the counter medicine. To say the bag was big is an understatement. I had so many syringes, bottles of meds and this was to take home, you can only imagine the dosage Dana was on immediately following surgery.

We leave the hospital and travel to the hotel in a wheelchair assisted taxi as Dana is not able to step into the shuttle bus herself. That's fine, Dana will get there, this is only temporary. We will be back to the hospital tomorrow as we have another physio session and we are seeing Dr Dobbs for her Hamstring operation.

We arrive back at the hotel and it feels so good to be back. Dana manages to even sit on the toilet for the first time since the op which is a big milestone. This in itself may seem small but to us is progress. Dana is putting weight on her feet and side stepping from the wheelchair to the toilet and back to the wheelchair. Dana then wants to sit on the sofa which again she manages to transfer with support. The support given is placing your hands under her bottom and Dana grabbing your neck so you are supporting her lift. She then stands and side or forward steps. After dinner Dana is so exhausted she wants to go to bed. I make sure she is surrounded by pillows as she feels nervous without the bed guards she had on the hospital bed. I reassure her by placing her on one side and putting a pillow on her back and another between her legs, just like she had in the hospital.

Reflecting on today, it scary being out of hospital yet it feels right Dana should be at home. Seeing other UK families who's children are a few weeks post op ahead of Dana its encouraging to see the progress they have made. It is also important to remember each child is different and not to compare. I think and know Dana will do great at the physio sessions planned for the weeks ahead yet I know it is really so much hard work I can't even relate it to anything similar. I can say that Erica's face was rather red and she had drips of sweat on her forehead and that is a physio who is very experienced and has been doing this for years.

Tomorrow we are seeing Dr Dobbs for Dana's hamstring op which is scheduled for the 16th Aug. I really do not want to put Dana through another operation, but I know this will push her even further forward long term.

Day 4 Post Op

Sunday night was a good night in terms of Dana's pain and we were both able to have a good nights sleep. I heard the night nurse come in about 2am to turn Dana and change her. Then at 6.30am I woke up to the sight of a really cute doctor standing next to Dana's bed. Not a bad way to wake up in the morning. I sit up while he is talking to Dana and asking her how she is feeling, I join the conversation and we speak for a few moments. He seems pleased with Dana's progress and then leaves.

I place an order for Dana's breakfast and she complains of feeling sick and a headache. I think she is feeling anxious about the therapy this morning and most likely also feeling hungry. While we wait for breakfast I get Dana ready and the nurse comes in and introduces herself, Allie has been given the day off today as quite a few children were discharged yesterday so less nurses are needed. Michelle gives Dana her meds including a course of antibiotics as the urine sample tested borderline and did show something so the doctors feel Dana is better starting the medication. Within half an hour Dana is ready for physio. The transfer to her wheelchair is still difficult and Dana is uncomfortable with pains in her back which settles down after a few minutes. I take the post surgery exercise booklet which was given to us at our initial assessment and make our way to the staff only lifts which will take us to the therapy department. I know Dana is nervous, I am nervous about the physio session this morning. There are so many question which no one can answer, they can only give me examples of how other children have progressed. Yes Dana is progressing well, don't get me wrong, the doctors are really pleased. My questions are when will she feel less pain, when will she be able to use the bathroom, when can she put weight through her legs and feet. Every child is different and I know older children take longer to recovery, but this really sucks, sorry american term but fits with how I feel. I am expecting too much post op day 4, but am really scared being discharged tomorrow and being on my own at the hotel without the support of the nursing staff.

The physio session in the morning was so good and Dana really made a great effort. The therapist took one look at the wheelchair and said she was going to find a wheelchair we can use. I really did not give a thought about transfers and how Dana's wheelchair is so unsuitable. I planned for everything before flying to the USA and wish I had thought about the wheelchair. The thought of making your child more uncomfortable than what they are currently experiencing makes me feel I have let her down. The therapist called an assistant who was tasked to search the whole hospital for a wheelchair and was given a very specific brief. A while later she return with a wheelchair which was disinfected and looked so much more suitable for Dana. I raised my concerns with the therapist about being discharged tomorrow and especially about the transportation to and from the hospital. This again was taken care of. Nothing is too much trouble. At the end of the session the therapist advised Dana should stay in the wheelchair for up to an hour then go back to bed for a sleep. This is repeated following the afternoons session also. I take Dana to choose some more DVD's to watch and soon becomes uncomfortable. We head back to her room and I order lunch once Dana is back in bed.

The plan was for Dana to have a sleep before lunch, however what followed was a bit distracting. Superman made an appearance in Dana room and left a magazine which I gave to Ollie and I got a picture with Superman, well it had to be done. Once he left a few minutes later Nel arrived. Nel is a dog who had a hat, green neck scarf and green glasses. She was so cute and is a regular visitor to the children on the ward. It really makes a difference to their recovery. Can't see this happening in the NHS, can you? You know the whole experience while in hospital is much more relaxed than back home. The nurses wear tee-shirts which have the children's hospital logo and are different colours, they wear nail varnish and every time they leave your room will always ask, is there anything else I can get for you, is there anything you need. They welcome you buzzing them and answer via intercom. The meds are scaned into a computer which is in every room and matched again Dana's hospital bracelet. It's like a remote scanner in a supermarket. As soon as the meds are scanned they show on Dana's records, I dread to think how much medication she has had. Keith then arrives who will cast Dana for her splints. This of course happens when lunch arrives. Dana is give a ring with samples to choose from and has to choose a colour for the splint, another from samples for the lining, another from samples for the straps and another from samples from the velcro. The NHS have a choice of colours for the splint, and white for the straps and velcro. There is no lining. Keith proceeds to take the cast of both legs which is mess free. Believe me when Dana has this done at home it is so messy it is like they are putting a plaster cast on her and we always have to go to the plaster room. Keith mentions the splints are ready in 6-10 days, we usually wait 3-4 weeks back home and only have a review when we as parents feel Dana has grown out of them. Dana will wear these USA splints for 6 weeks then these are reduced to ankle splints. Keith is done within 20 minutes and Dana is able to eat.

It's not long until we have to return for the afternoon physio session and Dana has still not slept. Meds are given to Dana and we get ready to go to our appointment.This time the transfer to the wheelchair is easier as she now is using the hospitals wheelchair. Again a very good physio session, I'm so proud of Dana. As she is lying on the mat she looks at the treadmill by the side of the mat and the rock climbing wall infront of her and says'when am I going on them' that's my girl!! Again Dana is asked to stay in the wheelchair for another hour if able to so I take her for an ice cream for a treat. Dana returns to her room in the hope of having a sleep but nothing. I order dinner for her and make her comfy in bed.

Today has certainly been a long day for Dana and she has done so well. I am looking forward to what she is able to achieve and hope she does not loose heart in her own ability in what she is capable to achieve. It will be good getting back to the hotel again after being in hospital since Thursday and sleeping in a proper bed. In a way I feel she should remain in hospital for the support, yet she is not clinically needy.

Well tomorrow is another day and I haven't got a clue how it will turn out. I do hope Dana continues to make progress and is able to weight bare soon. I need to relax a lot more and just ensure I encourage and support Dana.

Day 3 Post Op

Saturday night was a disturbed night, Dana was sick twice during the night/early morning which was upsetting and she had been complaining of an upset stomach. When you look at the amount of drugs she has had since the op, it's no surprise her stomach has suffered. I called the nurse and we both cleaned Dana and changed the bedding. I was keeping quite as an Amish mother and one of her 11 children had joined Dana in the room. The girls machines kept bleeping and with Dana's unsettled night, a third night of sleeplessness.

The day shift arrived at just after 7.30am and was told Dana's first physio session was at 9am by bedside, so I made sure breakfast was ordered so Dana was able to receive pain relief half and hour before physio. We were both ready well before the session time, unfortunately the physio did not appear until 10am as I was given the wrong time by the nurses. I was really annoyed as Dana had the pain relief way too early and why did the nurse get the time wrong which made us rush in the morning. By the time 10am came Dana had got herself anxious and when the physio shown me how to sit her on the bed and then transfer her to the wheelchair, Dana's did not look so good. She looked so pale and washed out and her body was leaning that her upper body seemed unable to support her. Looking at her was really scary and thought there is no way she can do anything this morning. Within minutes of sitting in the wheelchair Dana was sick again. I had the bowl in one hand and holding her up with the
other. The physio then left as she had to see another patient and would be back in half an hour. The build up towards today and the events of this morning were just too much and I just broke down and cried. I couldn't do this any more. I was exhausted and didn't feel comfortable handling Dana as I couldn't lift her, she weighed a tonne. She looked completely spaced out. What had I put her through.

The afternoon was much more of a success, I asked the physio to come to the bedside first then we would all go to the therapy gym, which she did. The transfer from bed/wheelchair/bed is still uncomfortable and makes me feel really nervous. I am thinking there is no way she is ready for discharge on day 5. The Amish girl and mother move to another room, so Dana has the room to herself again. When we arrive at the gym, the first thing I notice is how big the room is and seems to go on for ever. It is divided into section which seem age appropriate. It is so well equipped it is a physiotherapists dream. The physio suggests we have a wheelchair on loan as it is very difficult to grip Dana as her wheelchair is too narrow. She will place a request and will be with us on tomorrow. I am shown a couple of stretches and Dana also was able to stand for a few seconds. Dana worked extremely hard and was completely shattered. When the physio asked how her legs feel, Dana said her legs feel divorced from each other. I thought this was a very mature and interesting way to describe her new legs.

Dana's hands are still extremely swollen and am hoping this will go eventually as that is what I have been told. She may also have a urine infection and a sample was requested, this was sent off to the lab, results back Monday morning. After Dana had a short nap she made a Skype call to her nanny who was so pleased to hear from her and I know Dana misses her terribly.

In the early evening as I was ordering dinner, Catlin came in who asked if we wanted anything and Dana started to talk about the film she was watching as it was about ice skating. Dana mentioned about the charity event which had a cheerleading group perform and Catlin said she travels and teaches cheerleading. That was enough for Dana to start quizzing Catlin about cheerleading as Dana has taken a real passion to it. The conversation then moved to doctors and the good looking ones, it was nice hearing Dana being so comfortable with someone and beginning to be like her old self. Dana said goodbye to Catlin as she was not back on the ward until Wednesday and Dana would be discharged on Tuesday.

I change Dana and get her comfortable for sleep. The nurse gives her oral meds. She is now allowed to have the bed back rest up 30 degrees. I lower the bed back to flat and soon she is asleep. I attempt to make the chair into a bed, half an hour later it looks like a bed. While I'm doing this an announcement is made in the ward stating there will be severe storms until 1am. Apparently this means all the windows need to be shut. Still scary to hear.

Tomorrow is Day 4 post op and I hope Dana has the rest and sleep needed to be able to be comfortable for the session in the morning at 9am. I feel really apprehensive and know this feeling is not forever but still doesn't help when you go through it. We have Allie back as Dana nurse for the day tomorrow which will please Dana. Dana keeps saying I will try my hardest and I know she will. She is a fighter and a very strong person. It is not only me saying this but nurses and Dr Park have said this also.

Day 2 Post Op

It's Saturday morning and Dana had a fairly good night. Rachel was her night nurse and rolled Dana every few hours during the night which Dana wanted. Allie is Dana's day nurse and so lovely, she has a very gentle approach and knows how to calm and reassure her. I order Dana some breakfast and she eats some waffle and has orange juice. I have to cut up her food and feed her lying down so I make sure the mouthfuls are cut up very small. During the day it's a case of meds, change, transfer side to side, some food and sleep.

As soon as the antibiotics finished in the morning, Dana had the option of the IV's coming out. There were two condition, one Dana increased her fluids and two she was able to take oral valium. Dana agreed to both and Allie took the IV's out a day ahead of schedule.

Dana seems to be repeating herself, I'm thinking it's the meds as she defiantly was not like this pre op. She has stages when she is pain free yet other times when the pain hits, she screams in agony. Allie is great at calming Dana down and talking through what meds she is given her. I start changing Dana and get told that I'm not a professional and that I should leave it for Allie. Allie laughs and said'your mom has done a pretty good job these last 13 years' Dana's reply is 'no she's done a terrible job these last 13 years' With my mouth wide open in shock at what Dana has just said, I let it go as again it's the meds talking. I carry on helping Allie change Dana and get her comfy again.

Later in the day Dr Park visits Dana and asks how she is feeling as he is looking at her feet. She says fine and as Dr Park asks about her legs Dana says' be careful my legs are attached to my spine'. I looked up at Dr Park who was laughing as was another doctor standing next to him.

Tomorrow is the 3rd day post op and the day Dana starts physio. This is both exciting and nervous at the same time. This will be the day Dana learns to walk starting with very very small steps.

Looking forward to moving to the 12th floor

The main focus for today was to move to the 12 floor and leave intensive care. BP seems to be stable and Dana's IV lines were holding up even though she hated them and said they hurt. When Andrew arrived in to Dana's room, he introduced himself as Dana's nurse for the day, Dana was her usual moody self. I know its the meds but its horrible to hear her say things which she would never say. Dana questions and watches Andrews every move. The poor man can't just get on and do his job. At the point where Dana's catheter had to be removed, just to distract Dana and to keep her calm, Andrew and Dana were discussing the kings and queens of the UK.

It was time for the ICU doctors ward rounds, this was in addition to Dana being visited by Dr Park's team. The doctors formed a semi circle outside Dana's room and a lead doctor started to brief the 10 or so doctors. The nurse said to me I could listen in if I wanted to. At the end the lead Doctor asked if they had any questions, then turn to me and asked if i had any questions, which I was blown away by. I did have a question regarding Dana's anxiousness and when to tell the difference between that and pain. The nurse replied to me and the lead nurse she would speak to child life and have someone from that area come down and talk with Dana. This was done and followed through within the hour. The ICU doctors work very closely with the patients doctors and all take an interest in the patient. This I found very refreshing and so reassuring.

Andrew came and told us Dana was moving to the 12th floor, what a relief and luckily the meds were given just before the move. I gathered Dana's belongings and Jeff came to help wheel Dana's bed up to the 12th floor. I followed Jeff and Andrew and we went in the staff only lift. A few seconds later we were coming out of the lift and on the 12th floor. Now this was no ordinary childrens ward as we are used to back in the UK. As you enter, you are faced with one of the many nurses station where there are coloured lights behind a clear sheet which hugs the nurses station. As we head to find Dana's room 14b, we pass all private rooms, each room has a private bathroom and a slim wardrobe. I look at other signs on different doors and say, Private Consult Room, Gym room Kitchen and Parents Lounge. We enter 14b and Dana is wheeled next to the window and were quickly met with Dana's nurse and technician Allie and Morgan who are both very friendly. Dana was still her usual moody self and told Allie how horrible Andrew was to her. These meds have a lot to answer for. Of course Andrew was so lovely as all the ICU team were.

Dana was very anxious and again was protective of the IV's. She didn't want anyone to touch her.I was given a goodie bag with bits and pieces in and informed of the process with regards to meals and meds. Dana has trouble turning which she must do to keep her back supple. This hurts and Dana screams each time she turns to side to side. All I can do is encourage her to take deep breaths and relax. The IV wires are put to the side of Dana so they don't become caught under her. Dana's attitude is one of non reason as what ever you say it is never what Dana wants to hear. So you accept you do what you have to do and make your child as comfortable as possible. Tomorrow is a new day.