Seems like we haven’t been on here for a while now but put that down to: week 1 jetlag – no National Rail, you did not help; an incredibly untidy house (it’s all true about the tidying with kids around…really true), and of course our all new Kt-physio-based lives.
Five times a week she undergoes varying forms of body manipulation and exercise. Apart from this her – how shall we call it – powerful sense of independence is driving constant mini gains while the strength learning goes on else where. Her new flexibility is awesome and dreams that would have been impossible seem A LOT less so. This stretch in the pic above was absolutely impossible pre SDR; her adductors (look it up) were steel cords that could not move outward for anything; her achilles would not allow her ankles anywhere near 90º. Her hands could barely touch over her head, such was the tension in her shoulders as her body fought tooth and nail against the CP caused tightness. SDR has unlocked the potential and she’s working hard to make the most of it.
Slippers. These are her very first pair of slippers and she adores putting them on. They would never have stayed on pre SDR.
Can you tell she’s chuffed? 🙂
PERCS is a lengthening surgery. Children with spasticity often have shortened muscles because the bones and muscles don’t grow at the same rate. Caitlin has short heel cords. SDR if performed early enough saves children from needing orthopaedic surgery. Caitlin will possibly need PERCS but not yet. The casting and night splints has helped her to get a good range in her heel cords. She should not need any other surgeries. Without SDR she’d have needed a greater number of operations.
This is the kit Caitlin has to wear at night. The parents of another little girl who had SDR a few days before Caitlin call the knee immobilisers “leg warmers” and I think we’ll do the same. Sounds less medical!
So we were sitting in the foyer at the hotel waiting for the taxi to take us to the airport and suddenly Caitlin just went for it. She walked at least 40 steps! She’s been so frightened to do it & we were feelin a little exasperated as we knew she could do it. Dr Park predicted she would walk before we returned home and he was right!
Caitlin now needs to build strength and confidence so that she can walk independently in all environments and have the stamina to cope with a full school day. This is where her UK physiotherapists come in. Judith & Lucy are great with Caitlin & have supported us in our quest to help Caitlin have a better future. We feel rather lucky about that as some families have not been supported by their healthcare teams. Caring for a physically disabled child is hard work and families need support and guidance.
Caitlin was very pleased with herself and showed off her walking to the ladies working at the front desk. I am so happy now that I’ve seen her so this. Irwin knew she would do it once we stopped putting pressure in her & it seems he was right. Grrrrr! 🙂
Went to the hospital with Caitlin to meet Dominic, one of the orthotics guys who works with Keith (who measured Caitlin when she was in hospital. The night braces needed a slight adjustment and Dominic took them away to do this and had them brought back to us before we left. This orthotics team are great. They make great braces (or splints as we call them in the UK). So good that ……..NO CASTING was needed. The night splints (confirmed by Blaire’s assessment) had done their job and given Caitlin the extra range needed. Happy Caitlin & happy mummy 🙂 Was all set to barter with Blaire for a possible 3 day cast rather than 4 but no need in the end. Woo hoo! A good physio session with Blaire focusing on strength and balance. A good day 🙂
In a nutshell, a big thumbs up from Dr Park this morning. As Kian is suffering with a fever and jaw pain, only Daddy and Caitlin set out for an early meet with the revered Dr Park. Caitlin showed off her walking with only her shirt being held for support. He liked what he saw and said she will not need review until 3-6 months from now. We need to work the stretching but the strength will come from a child’s natural inability to sit still!
He said he remained ‘neutral’ on whether she should be serial cast this week and left it to us to discuss with physio therapists in the afternoon appt.
This is good news. Caitlin has been enjoying more freedom since the last set of casts were removed and we are eager to build on this confidence.
So remember we said Physical Therapist Jackie Bryce was Caitlin’s favourite? Well now it’s Jackie…..and Blaire Ballard……..Mike Kenyon…….and Ali. Yes – ALL of the therapists who have worked with Caitlin (she also liked inpatient PTs Jo-Lynne & Nicole).
The PT team are wonderful. They really know how to motivate the children and are resourceful – always thinking of fun ways to get the children to work hard. They genuinely like their work & it shows. They are super busy so it’s always appreciated when they fit in extra time to put on/take off casts, answer our constant flow of questions and provide parents with belief. A special thanks there to Blaire & Mike.
Caitlin has been pushed by the team here (Jackie and Ali here this time) and is now getting back on her feet. Progress is slow and thankfully steady. She has new splints inside her nifty adidas, wears night splints and has night time knee braces to contend with. Not to mention fatigue, itchiness, irritability, weakness and appetite loss.
Tough times but she is managing! She went to and loved the Magic House today. Great value and so much to do that we didn’t have to worry about further physio today.
Caitlin Rose with Dr TS Park MD, Neurosurgeon in Chief at St Louis Children’s Hospital.
Caitlin has a penchant for pretty blonde physiotherapists. She has one back home (Lucy) and now Jackie here in St Louis. Instant like both times – of course their interpersonal skills may also be relevant I suppose!
Caitlin did some good walking on the treadmill – some feat what with the heavy casts on her feet & legs. We were proud of her. She finished the therapy with a lap of honour on the bike. It's become her favourite thing.
Afterward we went to the inpatient playroom which Caitlin had not been able to enjoy before as she was too sore & frail. She enjoyed it today though 🙂
We explored the Euclid area of St Louis afterward and found a nice restaurant where we could eat outside and enjoy the hot but not too sunny weather.
Looking forward to a weekend off. Physio is tiring for us all!