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!
So this morning Caitlin was able to sit unsupported at the table for breakfast. She then surprised us by getting down from the hotel armchair by herself and cruising holding on to the furniture.
We missed the get down – another family pointed it out to us! In physio at 11am with Blaire Ballard, Caitlin was able to stand against a table supported a little behind and then managed 3 minutes of supported walking on the treadmill. This was exhausting for her but she still managed to find the strength to cycle (including up a small ramp) at the end of the session. She seems happier that she can do things again.
We stayed at the hospital as Caitlin was set to have casting at 2pm. We filled the time eating, skyping and playing.
Caitlin was not keen on the casting process. She didn’t like the sight of the scissors used to trim the excess plaster and I expect she felt out of control lying on her tummy with someone holding her legs.She cried herself to sleep 😦 Serial casting is where plaster casts are used to set and maintain position (ankles in Caitlin’s case) as an alternative (or to delay) surgery. If able to tolerate the casts Caitlin will then have a new set next week if the first ones haven’t given her enough range. Though to us Caitlin’s feet have always been a concern, Blaire said they aren’t too bad and that we’ve done a good job with stretches.
So we left the therapy floor with Caitlin fast asleep weighing a bit more (with the new casts) and dreaded her reaction on waking. What would she make of the new casts? Amazingly she was fine! She merely asked how long they would stay on for. She told Irwin that they made her toes feel nice! Early days though, early days. We met another family whose son could not tolerate the casts due to intense itching.
Kian wore his Cardinals shirt to mark the big game against the Pittsburgh Pirates. He and his dad have been getting into baseball. We watched it at the hotel whilst eating pizza & pasta from Imo’s. A massive win for the cards. Angie (breakfast staff at the hotel) will be ecstatic as she’s a huge cardinals fan.
So where has Kian been whilst his sister has been busy having surgery and therapy? Well….in St Louis Childrens Hospital there’s a fabulous playroom for siblings and it’s open most of the day every day of the week. It’s been a firm favourite of Kian’s, who literally could not wait to go there as soon as we arrived at the hospital each day. Not only has it kept him entertained but he’s had much needed attention from adults like Pat (pictured) who has been helping Kian with his ‘a’ game on many fronts. It’s a fantastic resource.
Early physio session at the hospital with Mad Mike Kenyon. I don’t quite know how he musters that much energy at 8am but I’ll have whatever he’s having! Caitlin started the session crying. I felt like crying too – think we all did. We’d have all loved an extra hour in bed. But Mike managed to win her over with jokes and pictures of his “puppy dog” who <whispers> is not actually a puppy as he’s 4 years old! He showed Caitlin how to roll – she’d had us up in the night asking us to turn her. She then managed to side sit and climb up on to the therapy mat. Her supported steps were better, as was her posture when sitting in a chair.
We decided to walk to the zoo after. A nice stroll through Forest Park – or so we thought. We regretted it at a point where we could not turn back. What had started as a pleasantly warm morning became an intensely hot scorcher of a day. No sun hats between us, no shorts – I’m sure motorists passing by must have known we were tourists. Not only were we in inadequate attire but we were walking! We’ve seen runners a plenty but walking is not something that seems to be popular here in St Louis.
The zoo was great but Caitlin missed the first 90 minutes as she was fast asleep. Caitlin, once awake, liked the giraffes best. There were 3 – a mummy, daddy and child we suspected. The highlight of the trip was seeing a gorilla come running over to the viewing window beating his chest and punching the window – aimed at Irwin!!! Don’t think he liked Irwin staring st him. The other people watching were so pleased to have seen such a show. Irwin stepped away from the window – just in case!
A tiring day in the heat. We took a nap when we got back to the hotel.
A good night’s sleep last night and a good physio session this morning. Almost back to her usual curious, adventurous self – wanting to try out different things in the physio gym. Lovely to see.
We were given knee immobilisers which will be worn each night and sometimes in the day (during growth spurts) to keep a good stretch in the legs.
After receiving the feedback from her pre-op physio assessment ( which scored her higher than in the UK) we headed off to the hospital pharmacy to collect Diazepam. No this is not for Caitlin’s mum on the return flight home – she has her own supply! This is for muscle spasms that Caitlin may experience in the early weeks post-SDR.
We were all happy to be back at the hotel and celebrated by heading out to a local Italian restaurant called Vito’s. Unfortunately Caitlin fell asleep before the food arrived but we took it back with us and she enjoyed it later. Kian enjoyed his spaghetti & meatballs exclaiming “I so needed that”! Kids have missed pasta.
Early start tomorrow – physio at 8am! Good night all 🙂