15 - 21 Weeks (4-5 months) Post Op

Shortly after my last blog it was Talia's 6th Birthday. A lovely lady who donated cup cakes for some of our fundraising events during the Footsteps4Abigail campaign offered to make Talia's Birthday cake. Pauline Clifford from True Love Cakes delivered the most beautiful, sparkely, Cinderella cake. Such a kind and generous gesture and it tasted delicious.

The Fat Wheels that we had ordered from the USA finally arrived. In the meantime we had ordered Abigail a non-special needs bike. We are very fortunate that in our local bike shop, Giant, there is a member of staff who has adjusted bikes for people competing in the paralympics. So he was more than happy to help us and agreed that once the fat wheels arrived he would fit them to the bike and Abigail could trial it.

The day we collected that bike is one that will be etched in my memory for many years to come. Abigail was so delighted to have a bike that was not from her 'disability world'. Before SDR surgery she would never have coped with even sitting on a bike without any trunk support; her body would have gone rigid and tense because of spasticity and fear and now here she is without any worry at at all of falling, tensing, or not feeling safe. That smile on her face was huge and my Mummy proudness was brimming.

She has a bit of trouble making the circular motion in order to turn the pedals but she can propel the bike. Given she could do this on her trike we think this issue can be solved with some foot plates and leg callipers. We are awaiting the imminent delivery of these. I am amazed that she hasn't experienced any problems with the ability to operate the brake herself.  A godsend I think! 

During the Easter holidays we took a trip to Amsterdam to meet with our special friends the Podgorski family, whose daughter Pola aged 3 years, had surgery the same day as Abigail. Pola and Daddy Rafal were waiting to welcome us at the airport. As always Pola had a beaming smile and within a few moments the three girls were singing the songs they had sung whilst together in St Louis. Pola had, only days, before got a pair of crutches and she eagerly showed us how well she was doing with her new equipment. 

On route to Amsterdam Tim had discovered that he had forgotten his wallet containing credit cards and more importantly his driving license!!!!! This set me into immediate panic as I had mine, forcing the issue, that I would finally have to, for the first time in my life, drive abroad. I managed this successfully during the visit in a manual car, driving on the wrong side with no prangs. A miracle some might say. I'm sure that my only saving grace is that I followed Rafal everywhere and there was no need for me to read sign posts or make decisions on which lane we should be in etc. All I had to do was follow Raf's 4x4 !!

Back at the Podgorski's flat we celebrated in style with Champagne. This lovely photo was taken by Talia aged 6 years!  Thank you Tali.

How good it was to be reunited with a family we had spent such an emotional month with. Dorota put together a scrumptious lunch and in the afternoon we took a boat ride  through the canals. The sun was shining and it was glorious. It was lovely to watch all four girls together again.

The next day I drove an hour following Rafal's car to a park called Eftling. It was a spectacular place but it was far too big an expanse for Abigail to have walked so she did a combination of hand walking, walker and wheelchair. The Park was so big we simply didn't have time to see it all. I think we were one of the last families to leave.

On our last full day we visited the Poppy fields that were in full bloom. It was utterly beautiful. We've got so many pictures! But here are just a few. 

Next we visited Little Holland, a miniature version of all that is historical and of interest. Again we all enjoyed it. We topped the day off with a trip to a restaurant on the seafront.

When our trip came to an end and we had to say goodbye at the airport, it was hard. Pola was so sad we were going and this really showed in her mood. We had had such a wonderful time and had packed so much in. Yes there were tears but I know we will see them again soon and the next time will be in our home town of Bristol. The moment we got home from our trip Abigail was desperate to get on with physio despite it being 8 o'clock at night. Then she had me posting her physio photos back to the Podgorski's, who we were already missing!!

Abigail is very competent at holding a hand to walk.  In the last few weeks this has just gone from strength to strength.  There is a difference between which hand she uses as obviously she has a weaker side, but she loves walking this way as she feels she is just like every body else.

During the Easter holiday's and having seen Pola with her crutches, we had a physio session with Abigail's NHS physio. I asked if we could have a pair of crutches to practice during physio sessions. These were subsequently delivered to school. The first time Abigail used these she found it very difficult. They are a lot more challenging than using the pods which have 4 feet on them. But I am happy to tell you that today, Sunday 15 May, Abigail has walked with her crutches through Marks and Spencers along the downstairs of the Mall, got on the escalator (she loves using these, as of course she never could before in a wheelchair) along the upper level of the Mall to Yo Sushi. She, and even Talia, enjoyed lunch there and then Abi walked with her crutches all the way back again and more, to get to the car. Talia had the walker on stand-by the whole time but Abigail refused it. She did so well, it took so much stamina and she was totally determined. Two weeks ago she could not have managed this. I am so enormously proud of her.

Walking With Sticks

I am also happy to report that Abigail's manual and electric wheelchair have now been relocated to the garage. No one, unless in similar circumstances, can appreciate what a loaded sentence this is for me to write. I have watched so many mothers of children with Cerebral Palsy who have been to St Louis and in the months that followed, they've posted on Facebook that the wheelchair has been put in the garage. I used to read those posts with envy, hardly daring to believe that one day I would write that too but here I am and what a flippin' fantastic feeling it is. Obviously, it will need to be resurrected for long distances or if Abigail is unwell but on a general day to day basis it is not required and hasn't been for some time now!

Generally Abigail has aqua therapy once a week and a physio session once a week both with her private physio Caroline.  She receives only one session every three weeks from her NHS physio. All other sessions are done with me at home and we tend to do something every day. She also continues her horseriding sessions once a week for 30 minutes. Abigail is able to take some independent steps as I think I've previously said on the blog but as Tim doesn't get home until late I don't think I've managed to capture much of this on video.  I promise I will for the future.

On the physio front we had named Abigail's legs Bob and Mollie for the purposes of learning the motion of swinging the legs, alternately and independently of each other. She has changed the names of the legs so many times that I've gone totally do dally in trying to train her brain for this action! It is an instinctive action in you or I but for a child like Abi it is extremely difficult. We sit on the therapy bench so her feet are above the floor. Before surgery Abi would only have been able to swing both legs up and both legs down at the same time. I am trying to train her brain to learn to swing only one leg, whilst keeping the other leg absolutely still. We are getting there. And I now catch her practicing this in the car or when she is sat at the table. It's all about the brain learning to isolate the muscle groups. When we are very competent at this we will move onto the alternate swing of the legs.

Foot Tapping

Bob & Mollie (Possibly)

Abigail has also learnt to kneel and play catch, maintaining her balance very well. Not a hope she would ever have been able to do this before SDR surgery.

Physio Session

Abigail upped her own speed by 3 notches on the treadmill. She now walks at a speed of 2.0km/hr she does this in two sessions of 5 minutes each. I do think she has pushed herself a little too far because we are back to her moaning all the time on it but she refuses to let me reduce the speed and as long as I act like her personal trainer and encourage her the whole 10 minutes she manages to get through it!!

As you may know we were filmed in St Louis for the Inside Out West documentary. Part 1 was aired in November before we went to the USA and part two will cover the surgery itself, rehabilitation and a much broader picture nationally of the SDR subject. This is going to be aired in the next three weeks and I will put out a reminder on Facebook nearer the time. Of course Abigail's rehabilitation is still on-going but it should give a very good flavour of what this whole subject is all about and the uproar it has caused amongst parents because we are so very far behind in this country.

The other major news I have is that after about two years of Abigail wanting to look like a boy, from her short cropped hair through to boys pants and socks she is finally wanting to look like a girl again. I think a lot of this has to do with the fact she feels happier within herself about who she is. She's no longer sat in a chair all day wanting to fade into the background and not be noticed. She is really enjoying being upright and mobile and of course she's growing up. I never thought I'd see the day she would wear tights or something decretive in her hair! She did point out to me the other day that she doesn't cry any more about being disabled and she's right, she hasn't cried since we were in St Louis when gaining back the strength to stand was so hard for her. Dr Park has given her so much and there is still so much hope about what the future holds. We are all so happy with how things have progressed and are eager to see what lies in store for the next 7 months of rehabilitation. We will certainly give it our all.