Arrived in St Louis and our first day

We arrived in St Louis after travelling for 24hrs, both Dana and Oliver did really well. Heathrow seemed a long time ago. Due to storms in New York we were delayed, which was fine, better to be safe, however AA had boarded all the passengers and baggage then announced air traffic control had stopped all flights taking off going west from New York. We asked for Dana's wheelchair and they had put it in the hold and were not going to bring it back up. So we waited and waited and waited until an airport wheelchair arrived, which Dana hates. Looking out of the airport lounge the storm was very strong and we really didn't know if we would be flying at all. I started to panic knowing how important it was we got to St Louis and I wanted Dana well rested before seeing Dr Park on Monday. I asked a couple of the AA staff if they could help me and got an apology not any help. I could feel myself crying inside and wanted to shout "can someone please just help". I ended up using the airport telephone phoning AA reservations who were really helpful and put me through to the hotel so I could advise of our delay. AA ground staff were useless with any assistance. We boarded the plane, which was tiny only 16 rows, a couple of hours later and sat throughout the flight with seat belts on as it was a very bumpy ride. Dana and Ollie slept throughout the flight. We arrived at the hotel just before midnight US time or 6am Sat morning UK time and given an information pack from the hospital. It hits you again why you are here.

We all slept really well and woke at 7am. After breakfast which the hotel provide, we visited the mall and then did some grocery shopping. The people is St Louis are so very friendly and nothing is too much trouble. There is a free shuttle bus which takes you anywhere in a 3mile zone from the hotel, so that included the supermarket trip but not the mall. After all the food shopping was put away, dinner was started, Pasta tonight which was easy. The apartment is lovely, with two bedrooms and two bathrooms, sitting area and a kitchen. You feel its home from home, especially once the food shopping and cooking had started. We met some other UK families at the hotel who have been in for 2 weeks so it was good chatting with them. There are a few children around Dana's age for Dana to chat with who are currently in hospital or are at the hotel which is good for Dana.

Sunday is going to be preparing to meet Dr Park so it going through the information pack and filling out the paperwork. Our schedule for Monday is set and starts at with 9am appointment at the hospital (that's 3pm UK time).

Dana walking at home pre SDR

Dana's pre-op physio

It's session 4 of Dana's pre-op private physio sessions and again she has worked incredibly hard during the hour. We as parents are understanding more about how the CP has impacted on Dana's body and it feels we knew nothing before. For the first time we have been explained how over the years how Dana's tone has affected her body. Why her body turns the way it does and importantly how by doing the exercises shown will help. The purpose of starting physio now is to build up Dana's secondary muscles so she has a good baseline to work with post op. We do not know what level of weakness Dana's muscles will expose once SDR has been performed, so we are building up this strength as much as possible. This is even more important due to Dana being older and will find the rehab much harder. I feel angry not one person sat us down and said as your child grows, their body will compensate due to the CP. Year after year I repeated her knee was turning in, not one person listened, I knew her knee was not right. A child just a number in the system, none cared. I wish we had found Kerry years ago, Thank you Kerry for working with us now and the months ahead.