Diary / Blog

Tuesday we had a fantastic physio session with Ella walking in her walker for the first time in ages - she needed a bit of support as it was the first time we tried to get her to carry her weight through her legs but she was able to walk 20 feet and then spend some time standing at a bench and playing. By the end she was able to carry her weight for a couple of seconds at a time - great to see ! As she'd done so well we went to the zoo, St Louis Zoo is a fantastic place but the heat was starting to rise quite quickly so after seeing the key animals the girls wanted to see we headed off to a mall to get out of the heat and have mexican for lunch; Lois wasn't too keen but Ella managed to eat a whole taco on her own ! We came back to the hotel and managed to get Ella to spend 30 minutes standing at a coffee table playing with toys and holding her own weight for several seconds at a time. As she'd done so well we all went to the Old Spaghetti Factory for her favourite - spaghetti and garlic bread - before heading back for evening stretches and bed.

Wednesday we had a 10am physio session so were able to get a good stretching session in before breakfast and going to the hospital. We were in for two great surprises, first her walking sticks had arrived (powder pink and speckled, perfect for Ella), but also when we put her in her walker she was able to stand happily with no support and even walk a few paces on her own ! By the end of the session she'd walked over 40 feet with her walker, most of it with minimal support, really good to see some strength coming back to her legs and the new splints giving her a much better gait. We finished shortly after 11 but only had time to dash out and have lunch before we were back for an appointment with Dr Tychsen, an ophthalmologist, as Ella also has dificulties with her vision (including strabismus or "wandering eye" and nystagamus which causes the eye to jump up and down occasionally) after a few tests he identified that although she will always have some problems, her vision could be improved with surgery. We're having some further diagnostic tests done over the next few days to find out more and will then consider the best course of action - one thing's for sure though, Ella's had enough surgery for this trip !!! We return the car tomorrow so made the most of having it with a trip out to St Louis Mills for a bit of shopping before dinner at a steakhouse - the heat came back for the day hitting 100f again, too hot to be outside !

Sunday morning and the weather was fantastic so after breakfast and stretches we walked up to LafayetteParkfor Ella and Lois to play on the swings & slides and feed the ducks. We also put them both on the bandstand where they sang us a medley of favourites (“I’m a little teapot”, “The wheels on the bus go round and round” etc etc) before we listened to a great blues group and singer also in the park. After a very relaxing morning we stopped off at the Firehouse Grill in Lafayette Squarefor lunch before heading back to the hotel. Soon after getting back we nipped out to Culinaria then had a fab barbeque with some of the other SDR families. Ella and Lois playing with the other children until well past their bedtime !

Monday morning we paid the price for the girls staying up late the night before. We had a post operative review meeting with Dr Park at 8:30so had to be up before 7amto get the girls dressed, fed and give Ella her stretches - neither of the two were particularly keen about getting up so early ! The review meeting went well, Dr Park pleased with Ella’s progress and believing she should be walking independently in a year’s time. We left the meeting in high spirits and went to a 9amphysio session where the reality of how much we have to do to get her walking struck us again. Since having her hamstrings lengthened last Tuesday Ella hasn’t been happy straightening her legs or carrying her weight through them. Whilst some of this is due to the soreness she’s experiencing, some is definitely psychological with her scared to push herself so we need to work a lot on it over the next few weeks. After physio we went to the ScienceCenterfor a treat for Ella and the girls had great fun in the Discovery Room (as ever) before heading out for a late lunch. By the time we got back everyone was tired so we had a quiet afternoon & evening with stretches for Ella before an early night. 

Friday morning was great - driving to the 9am physio meant there was no waiting for the shuttle, allowing for time 'just in case' or hanging around at the hospital waiting for the session to start and we were able to listen to Ella's favourite music on the way in so she was in good spirits when we got there and the good mood didn't seem to reduce ! Having her new splints meant, after spending some time on the total gym, Ella was able to walk 20 feet with her walker (with some assistance) pull herself to standing a few times and happily ride a trike. The best part was seeing how straight her feet were walking with her new splints. Straight after physio we went for a walk in the area hoping to see the St Louis Cathedral (unfortunately we were unable to enter due to a funeral) then had lunch before heading back to the hotel for the girls to have their siestas before heading out to St Louis Mills mall for a quick look around, back for an early dinner and a short sit outside before bed, putting Ella in her new night splints for the first time.

Ella slept well in her splints but was woken a few times by thunderstorms and torrential rain during the night - it was still raining on Saturday morning so after stretches and Ella walking 10ft in her walker we decided to head out back to St Louis Mills as the forecast was poor for the rest of the day. The girls had a great time, riding a small train around the mall and Lois enjoyed a playground in the mall. Amazingly, Missouri weather forecasters are pretty much as bad as UK ones and so as the sun came back out we continued to Lake St Louis. A mix of the temperature rising to 35c and us not knowing where would be good to go when we got there meant after a drive around we came back to St Louis, stopping off at Walmart briefly and filling the car up with petrol... at 53p per litre...! The rain returned in the evening and, having been awake all day for probably the first time since getting to the US, Ella crashed out soon after we got back so we all had a quiet evening watching the Rams v Titans football on TV. 

Ella woke up a couple of times during Tuesday night feeling uncomfortable with her stiches & dressings on her legs and, by Wednesday morning's physio, was so tired that if she wasn't shouting for us to leave her alone and stop stretching her legs she was yawning. Overall it was probably her worst physio session since we'd started after the SDR - understandable given she was recovering from her second general anaesthetic in just over a fortnight but a shame given how far she'd come in the last week. After returning to the hotel Ella slept for several hours and was in no mood for anything afterwards so after a quick shopping trip we just spent the evening making sure both Ella and Lois were occupied and as happy as could be - with the heat often around 35c during the day (and not below 30c until midnight) and high humidity making it feel uncomfortable outside most of the day we've had to spend a lot of time indoors over the last couple of weeks !

After a better night's sleep we were up before 7 on Thursday for a 9am physio appointment - it went much better than Wednesday's and at the end we were able to collect Ella's new splints - moulded plastic supports that encase most of her foot, ankle and calf to give her a good right angle to her ankle (and help stretch her muscles), keep her feet straight when walking and not turn in as they currently do and give her support when she's walking - she has 2 pairs, one for night use and one for day although, due to their design the day ones are rather large and we're going to have to get larger trainers for her to fit over them. After collecting the splints we were on a bit of a high and this continued as we collected a rental car in the afternoon to give us a bit of freedom for the next week. With physio from 9-10am for all but one of the remaining 6 weekdays out here the ability to go where we want, when we want without being restricted to the 3-mile limit for the hotel shuttle or the cost & wait for taxis. We 'celebrated' with another trip to the Planetarium  for Ella & Lois to play in the Discovery room (Ella's favourite place in St Louis, Lois's seems to be the creche at the hospital) followed by a visit to Walmart and dinner at an Italian (no pizza though !).

Monday 15th was Ella's first day of physio after what had been a pretty relaxing weekend, and she didn't like it ! After a week of 11am physio sessions this one was at 9am so she was rather sleepy when we went to the hospital and took some time to get going - by the end she was back in her stride though and all in all she had a good session on the total gym, a lot of high kneeling and some assisted walking. After a quick shopping trip we went to the planetarium again - both girls really love the Discovery Room (and Chris is more than happy to look at Gemini capsules, tyres from the space shuttle, etc etc). Unsurprisingly Ella made a bee-line for the play house and spent a good 20 minutes high kneeling and even pulled herself to standing to play with a toy cat that was out of reach. The room also had a play tipi and she and Lois had fun dressing up as American Indians and beating drums. After a walk around the park we then came back to the hotel to remove the dressing from Ella's SDR operation and give her a good bath ready for tomorrow's hamstrings and heel cords lengthening procedure.

Tuesday 16th we were at the hospital for 8:30am ready for Ella's next operations to lengthen her hamstrings and heelcords. The operations are necessary as the spasticity she's had has caused her knees to never fully straighten out and her feet to be pointed like a ballerina's up on her toes, this in turn as has caused her thigh muscles and tendons at the back of her heels to become quite short (as they're not normally in a straight or stretched position) - after removing the spasticity she's now being hampered by these short muscles and so surgery has been necessary to address this. She was so calm about it all, although given everything that's happened over the last 2 weeks it would probably take a lot to phase her now ! She was taken for surgery at abut 9:30 but was in the recovery room 90 minutes later after what the surgeon and doctor present said was a "very successful correction". we were discharged about 5 hours later and returned to the hotel where Ella decided, after being sick all over her dad, to spend the evening sleeping off the rest of the anaesthetic in her system. She woke up later though and, apart from a bit of soreness, was in remarkably high spirits for someone who'd had such a procedure - good job too as even though we're letting her off the stretches tonight (understandably) she's still got physio tomorrow morning !

Saturday 13th was the first time since we arrived 2 weeks ago that we actually had a day to ourselves without a hospital appointment so we decided to make the most of it and went downtown. After queuing to get into the visitor's centre for the famous "Gateway to the West" St Louis arch that dominates the skyline (getting into the visitors centre requires a bag xray, walk through a metal detector, similar to passing through an airport) we were faced with another queue to buy tickets to ride to the top of the arch and even then the next available ride would require over an hour's wait. Luckily we were able to buy tickets with an even longer delay and so 20 minutes after entering the visitors centre we left with tickets to go up to the top of the arch mid afternoon - giving us just enough time to have our first hot dogs since arriving in the US and take a trip on the Mississippi onboard the "Tom Sawyer". After geting back we returned to the Arch for our trip to the top, there was still quite a lot of queuing to be done and, because the journey is made in small pods that just seat 5 people, we couldn't take Ella's wheelchair with us so she needed carrying for some of the time. The journey up was interesting, Ella was excited to be in "a rocket to the moon", and it was quite quick, only 4 minutes to the top where we looked out over St Louis - especially a great view of Busch Stadium where the Cardinals play baseball. After the short trip back down we left the Arch and wandered the streets downtown - it was quite packed due to a number of events - Cardinals playing, St Louis Rams having a pre-season football game against the Colts and a Taylor Swift concert but we managed to do a spot of shopping and be picked up by the hotel shuttle. A quick dinner and we were outside enjoying the evening until the girls started getting tired at 10.

Sunday was another great day, we skipped the hotel breakfast and headed off to a nearby park for the girls - Lois, unsurprisingly, found a 10-foot tall helterskelter irresistable and Ella had great fun on the swings and seesaw. After some time playing we went to the Firehouse Grill for a traditional brunch, the girls had pancakes with maple syrup, whilst we settled for eggs, bacon and cheese on muffins (Caroline) and a 1/2 pound beef patty topped with eggs, chilli, cheese and jalapenos (Chris) all with hash browns. We then walked back to the hotel, tackled the mountain of washing that had built up over the week while the girls slept before going out for pizzas to a great place (PW Pizza) one of the shuttle drivers had recommended. It was within walking distance of the hotel and on Chouteau Avenue, part of the old Route 66, we all really enjoyed the food, some very interesting pizzas on the menu and a great atmosphere. We wandered back and spent some of the evening with the other families outside and saying goodbye as one of them is returning to the UK tomorrow.

Thursday morning it was getting noticeable that some of Ella's stretches were easier to perform, especially her heel cords, her hamstrings are still very tight but hopefully the surgery next Tuesday will address this. We had her physio mid morning and she worked very well, some good high kneeling and riding a trike. We then had a picnic lunch in Forest Park just over the road from the Children's Hospital before going to the Science Center and Planetarium which was great, lots of interesting things to see and very hands on for both the girls. We spent half an hour in the child's 'Discovery Room' and Ella spent the whole time high kneeling playing with a dolls house which was good to see and definitely helped with her core strength and muscles. It was early evening by the time we came back, rather tired, and so everyone was in bed early !

Friday Ella had her first go with walking sticks - she needed a lot of support but it was great to see her with them - she picks up her own pair (pink of course!) next week. We have the weekend off from the physio (but not the stretches) so this was the last time for a few days she'd really be put through her paces but she did very well and with the least complaining we've seen this week, especially with her sticks but also on the total gym managing to lift her own weight from bent through to straight legs. After physio we went to the park again for a picnic before returning to the hotel. There was a thunderstorm during the afternoon that just grazed St Louis (we got the rain but none of the fun lightning or thunder) but it had cleared by 6pm so we were able to spend some time sitting out in the late evening.

Wednesday started with stretches (and associated yelps, shouts and tears) before a 30-minute physio session - Ella did really well, managing to carry her weight through her legs with her walking frame and getting much more confident at high kneeling. We then had a consultation with Dr Dobbs about surgery on her heel cords and hamstrings, unfortunately Ella's going to need both sets of surgery done on both her legs however we're definitely in the right place to have it done and the surgery performed is much less invasive than we were expecting and the recovery time much quicker than thought so there's going to to be no let up for her from the physio !

After the consultation we had the 2nd 30 minute burst of physio which saw Ella on the treadmill for the first time, she was able to hold herself up for 90 second bursts but needed help positioning her legs and starting to learn a proper gait, there was then a pretty intense session trying to get her to move from a kneeling to standing position under her own power... we'll work on that one ! After physio we had lunch (for once Ella was awake to enjoy it with us !) and were treated to a bit of  lightning, thunder and rain which cleared the air at least. As a reward for such good work we bought Ella a book about The Little Mermaid and Lois one about toys - of course by the time we got on the minibus back to the hotel they'd swapped but both were content.

All the excitement & exertion of the morning took it out of both girls and they slept for a few hours during the afternoon (followed by the inevitable stretches) before a shopping trip in the evening. By the time we got back it was getting dark and we spent a few hours sitting outside with the other SDR families discussing what was going to come of the next few weeks physio and the next session of surgery on Tuesday 16th.

After Ella's first night of "freedom" she was up early, far too early, at 5am and rather wobbly. We managed to do her morning stretches (albeit with a lot of shouting and tears from her) but by 11am she was already flagging. She did well during physio and has started getting into a high kneeling position, although she is as wobbly as a baby foal partially due to the medication still swimming round inside her and partially due to the weakness both from so much bed rest and from the spasticity being removed. We haven't given her the valium as she hasn't seemed to need it since coming out but we did give her paracetamol & codeine to help with the pain during physio - unfortunately, whilst helping somewhat with the pain, this really knocked her out and so straight after physio we made sure we got some normal Tylenol (Calpol in the UK). She then slept straight through lunch and into late afternoon but in the evening we joined up with a number of other families over from the UK for SDR that are staying in the hotel for a few glasses of wine, it was good for all of us after such a stressful week having seen little other than the apartment and the hospital and Lois had a great time running around and playing ball with some of the other siblings.

Despite having managed to sleep all through Monday afternoon Ella managed to sleep for 13 hours during the night, Daddy had to go down and get her a take away breakfast from the hotel dining room before it closed ! Given this much sleep, and no more codeine to knock her out, we were hoping for a great physio session and she didn't disappoint. She was able to push a toy shopping trolley walking in a high kneeling position for over 10 feet, and make the transition from sitting on the floor to high kneeling on her own several times - her treat was riding a tricycle around the 4th floor of the hospital (with a bit of help - more steering than pushing though !). As we'd been bribing her with the promise of chocolate cake for the last few days we figured we'd better settle our debt so in the afternoon we took the Metrolink tram to the Galleria and had our first "normal" dinner of the trip (no pizzas, burgers, microwave burritos or fluorescent orange macaroni cheese). True to form, Ella fell asleep halfway through her meal but a deal's a deal so we asked for a slice of chocolate cake to be boxed up for her and brought it back to the hotel. She woke up shortly after we got back and tucked in before having her stretches and going back to bed. Tomorrow, as well as physio, we have an appointment with Dr Dobbs so should find out more about her heel cord and potential hamstring surgery on 16th August.