Amazing Last Day Go Gracie

Well we had our last physio session with michael today and Gracie had her post op video done and she did amazing her rangein her ankles and legs is now so much better than it was before and she has really evened out.

Grace Amazingly managed to walk about 20 feet today in the walker with adam not really doing much at all it was over a few goes but she still did the distance just the same we are really proud of her just 4 weeks ago she couldnt of done a step in the walker without a lot of support, she really has done an amazing job here we still have a long way to go but we are so happy with her progress so far.

at the end of the session we said goodbye to michael and i have to say it was very emotional and i did have a little cry these guys have been just so amazing to us here. we cant wait to come back next year and show them what she can do by then.

so thats it we are all done here for now we are having a bbq tonight to say goodbye to everyone and then have the weekend to get packed reasy for coming home on monday , this has been an amazing experience and we have met some really lovely people along the way that we will keep in touch with thankyou everyone for making this possible and to those of you who continue to support us and Grace to get her through the next 12 months we are so very gratefull..xxxxx

Last Physio with Beth and Giant Cookies

Well we had Physio today and we said goodbye to Beth as she is going to be off tomorow it was really sad we gave Beth and Michael a thankyou card each and a giant cookie cake to say thanks they have been so brilliant with grace its such a good hospital here and we are going to miss it.

Grace had another go on her favourite bike and pedalled around the physio room with help we are hoping to have enough left over too get her one before we go we are just waiting on the cost of shipping.

Grace also went on the total gym today and did 33!!! really good reps with her legs she is doing so well we just have to keep up all the good work when we get home.

last physio tomorow and then we get discharged cant belive we have been her over a month now and its nearly time to come home .

Meeting with Dr Park and todays physio WOW

We had our last appointment with Dr Park yesterday he said that Gracie is doing really well, he expects her to be walking with her walker within 6 months and then work toward Crutch/ stick walking after that there is a quite good chance that she will walk independantly providing she can isolate her foot movements which she can but wouldnt for Dr Park typical...lol....

we asked about the surgery and he said that she now has no signs of spacticity in her legs at all which is brilliant as she grows she may need some heelcord stretching or hamstring lengthening withing maybe 3-5 years time, which we expected at some point but basically as longas we keep stretching her ankles out all should be good there may be some need for serial casting at some point if the stretches and splints dont work but that we will not know yet.

he had to cut 60-65% of her nerves to release her spactisity but that is quite common as she is young she has the best chance of a bright future, we have to send videos of gracie to him every 6 months to be reviewed and will return next year to see Dr Park and to have some more physio and a splint change.

we are absolutely over the moon with this outcome with all the improvements she has made already such as her straight sitting being able to sit crossed legs her right arm improvements and her general awareness that i am positive has improved we are just excited to see what she will be able to do next.

We had a really good physio session today with beth too and grace was brilliant in her walker and only needed some minimal support around her hips which is amazing, she also got her new splints today some lovely day ones with ladybirds and flowers and some butterfly ones for the night.

we are really please with Gracies progress in just a few weeks and have many things that we hope to do over the next few months to help her such as a trip to Bobath in London in November and lots of equipment to help her, she is onlymaking this progress because of each and every one of you that has helped us get her here thankyou so much xx

Gracie make a model of michael

Gracie did really well at therapy again today some assisted crawling but she is moving her legs herself when she wants too, and also some walking in her walker she can only manage a few steps at a time and still need some help holding her hips but she proved to us today what she can do when she wants too.......





she made a face on the dress me Elmo and then turned round the Beth (physio) and said it Look like Michael ( the other Physio) it was so funny we decided to get her to walk in her walker to show michael and she was so excited she was practically running.

Grace is doing really well here and im hoping by the end of next week she will be a lot stronger i am worried that she is not going to get the level of care back home as she is getting here if she was staying in St Louis she would get physio everyday for 3 months we have had just under 4 weeks and we are going home to twice a week of physio, im hoping the gym equipment will help and we will be working her hard and liasing with america for the next year or so but i do wish we could give her physio everyday but its just not possible .....

we have the weekend off physio now and are hoping the weather is going to cool down from sunday next week is looking a lot cooler being in the 88's so hopefully we will be able to get out and about a bit more , we will be saying goodbye to the last of the original residence inn sdr families that were here when we came on sunday Debbie and Sophie and Pete which will be sad but then next week it will be our turn to go home .......

Monday post op day 15 Brilliant day video of Gracie in her walker

we had the morning free today so we went to the science museum down the road before therapy which as always over here is free, the kids had fun and really enjoyed the dinosaurs.

After this we went to the hospital we dropped chloe and Harvey and Evie of at the playroom which has been brilliant for them they have been using it every day when we have therapy with Gracie, and it means that both Adam and I are free to be with Gracie and see her sessions without worrying about the kids.

we then went up to therapy with beth Grace was brilliant she did some walking in her walker with help and also some crawling as well as tall kneeling she worked so hard today and i cant wait to see what she is like in 6 months if she is like this after 2 weeks.

Monday post op day 14

I cant belive we have been here 2 and a half weeks already !!!!! And i cant belive Gracie is 2 weeks post op her back has healed beautfully and she is trying really hard she is doing her streches well and although she is still very weak in her legs i can see improvements in so many things for her, she seems to be a lot more aware of her surroundings and a lot more chatty she is holding herslef in sitting brilliantly and is so much better with her hands her clumsiness has reduced greatly, she is also walking with support and getting better all the time.

We got up and said goodbye to cath and rees and Elodie and Lucas this morning as they were leaving for the airport we have met some really great people here and will be keeping in touch with them when we leave we were very sad to see them go.

We had therapy today quite late in the afternoon so we visited the magic house first where the kids got to let off a bit of steamit like a childrens science museum but fun at the same time.

We got to physio with michael and was hoping that Gracie was going to be good today and she was she did great she started the day in her walker doing some supported but not too much at all walking then moved on to the total gym and did great with her leg presses doing about 20, she then went on to a wooden trike and managed to push herself along which she has never been able to do before it was only about 5 pushes but this is amazing for Grace , she also had a go on the tread mill but was not quite ready for this yet im hoping that when she gets her splints she will be more able to this but all in all a really good session.........

we are now starting to see the things she is going to need when we come home to get her up and around and will be hoping to raise the funds to buy her a leg press bench as this is brilliant for her strength and also a wooden trike, as well as raising the money to bring her back next year for her post op appointment we would like to raise about another £10,000 -£15,000 to achieve everything she needs so will be continuing with her fundraising to finish the job and get her up and around so if anybody has any ideas or would like to help please let me know thanks xxxx

Saturday and Sunday

We have no Therapy on the weekends so after waving Callum and Family off to the airport which found quite emotional in the morning we decided to have a day out so we visited st louis zoo with little Elodie who had the surgery 2 weeks before Gracie and Lucas and their mum and dad cath and Rees who were also leaving St Louis on Monday.

What is Brilliant about Here is that all the attractions are free, so the zoo cost us nothing we had a lovely day and managed to get most of the Huge zoo done seeing all the animals although it was very hot and sticky but we are slightly getting used to the heat now.

After the zoo we decided to go back to the cheescake factory for dinner which was again lovely we had a really good day and will miss cath and rees loads when they go.

2 new SDR families arrived this weekend we have ruby who is having surgery next friday and little Dom who is having his surgery on tuesday so we all met up downstairs on Sunday night to say Hi and introduce ourselves we found it so helpfull when we got here talking to all the other families that had already been through the op i hope we can be as helpfull to them we also had another family who are staying at the metrolofts who have a little boy called Logan who is also having his surgery on Tuesday come over which was nice too.

Friday post op day 10

Hello everyone sorry i have not updated for a while have been unable to get on the internet in the hotel,so will update of the last few days.....

After Gracie being so brilliant in physio all week we went in on friday expecting great things from gracie but unfortunately she just didnt want to know she spent the whole hour with michael giggling or refuding to do anything!!!!!!! to be fair i think she was very tires since her op it has been non stop and she just wanted a bit of a break so we put it down as a bad day and were hoping for a better start next week.

we had to say to one of the lovely SDR families tonight as well Callum and dylan,sharon and Steve were going home in the morning so we had a BBQ at the hotel with all the other families that are here at the moment it was a good night and we all had fun just sad we had to say Goodbye.

Post op day 8 very clever Gracie-May

We havent done much today we picked up our dodge mini van which we have hired as we were getting to appoinmtents late depending on the public transport and with the heat here at the moment 101 today but feeling like 115 due to humidity the girls were really suffering standing around in the heat, after this went to therapy and WOW grace did amazing today first she did some sidestepping with some help from Beth which she has never been able to do before sue to her tightness being worse on the inside of her legs which was brill to see.

then after this she decided she wanted to walk in her walker to the tunnel which she did again with minimal help, she then did some assisted crawling to the ball pit and actually moved her arms and legs in the all four position which she has never done before and finished of with going on the multi gym and doing 15 leg presses and pushing all by herself......Brilliant day today Gracie....well done .

we are off to the botanical garden tonight with another family who's little girl had the surgery 2 weeks before grace she is also 3 and they are all lovely.

Gracie progress day 7

Hi everyone grace had her therapy this morning and was measured for her new splints, she chose some nice ones with ladybirds and flowers on for the day and and a nice pair of butterfly ones for her night time ones, they are around $400 a pair but they are amazing and so much better than what she can get in england they have padding and are nice and soft and cover her feet so much better than her old ones, also she only has to wear them when she is walking which is great it means she can have some shoes that actually fit her feet when we are out and about.

she did some supported walking with the shopping cart at physio which she enjoyed but found hard as she is so weak.

After physio we went to the Galleria to get Gracie some shoes as she does not have any here that will fit her feet without splints she chose a pair of lovely gold sandals which she is very proud of she has never been able to wear sandals before, we stopped for lunch at the cheesecake factory which was amazing ive never seen cheescake like it !!!!!!!

when we got back to the hotel i decided to give gracie a bath as it had been so hot today one of the hottest days they have ever had in st louis and i couldnt belive how well she was sitting in the bath she has always had a bath seat at home and has never been able to sit in water on her own but she sat beautifully im hoping thats the first piece of equipment we can give back when we get home followed by many more......xx

Dishcharge day

Today was discharge day from the hospital, yay, we had therapy this morning first thing and gracie got fitted with her knee brace which she has to wear at night on her right leg to stetch out her tendons as they are still a little short on this side which we thought would need serial casting but doesnt now which is good.

Gracie did some sitting on the bench today and managed to sit for a short time unaided, she also did some sit to stand and some high kneeling which she managed a few times, so again a very good day for her her incision is healing well and she is tolerating being in her wheelchair very well and seems to have no pain at the moment.

It was good to get her back to the hotel, where chloe harvey and Evie, Auntie Clare and Teddy were waiting for her, i couldnt be more proud of her she has been brilliant throug this whole thing :)

Post Op Day 4

we had therapy twice today with Gracie and she did really well this morning we did streches the difference in her tone is amazing, she managed to tolerate a lot of supported sitting a good 15-20mins and her target was 10mins for post op day 5, she is managing really well with her pain.

we did some throwing games and she was reaching for things and using her right hand really well which is good we did some bridging with her legs and she did really well,

then this afternoon we went back and although grace was really tired as she hadnt had a sleep after the morning session as she wanted to eat jello all morning!!!, she managed to sit unsupported for 15 seconds and she was pushing up on to her legs into her sit to stand which is brilliant its lovely to see her feet completely flat when she is standing and how loose her legs are.

she has now been asleep for about 3 and a half hours so really tired herself out think i need to wake her for dinner or she will be awake all night ..lol......

Gracie update to now

So we arrived in st Louis and met Dr Park on Monday morning he was lovely, he siad that gracie was a good candidate for SDR and he can def see her being able to walk with sticks or crutches and there is a chance with work that she could walk independantly, this is AMAZING and we really hope this will be the case. Her operation is tomorow Tuesday and we are first on the list.

Tuesday we arrive at the hospital at 5.30 am with a very tired gracie and get shown to our room soon it is time for gracie to get weighed and changed ready for her surgery she is being very brave, a lot braver than me and daddy. soon it is time for her to go down for the op so we walk down with her to theatre and she goes in happy as anything, while me and adam are in bits outside the theatre we know we are doing the right thing for her but its still very scary,

we go back to our waiting room and wait for the first phone call to say she is all ready to go, this comes about an hour later and the nurse tell us she is ok and Dr Park is about to start she also tells us she will not ring for another hour and we should go and get breakfast so we go downstairs for a bit.

The next phonecall came and said that Dr park was just starting on the second side of her spine and all was good so far thank goodness, the next hour goes really slowly and feels like forever but the phonecall eventually comes to say she is done and is ok and they will call when we can go through to recovery to see her.

we wait and wait and wait but no call comes we are both getting very anxiuos and want to see her eventually the nurse calls through to say she is ready, when we see her gracie looks very puffy and pale and is hooked up to monitors and machines the nurse says they had trouble waking her and when they try to get her to move her legs she wont which is very concerning. we follow her up to PICU where she will spend the night all i can think of is if her legs are damaged im so worried.

Eventually after a while and reducing her meds we get gracie to move her legs thank goodness!!!!

she stays in picu for the night she is a bit distressed and the medication is making her very tetchy and grumpy when she wakes which is hard but she sleeps for the most part and all her signs are good.

Dr Park comes for a visit this afternoon , i asked how many nerves he had to cut he replied "we left enough!!!!! " so im guessing she was very very spastic in her nerves..

Wednesday post op day 1

we move to the 12th floor of the hospital into our room which is nice and big and meet gracies nurses, Grace is very unsettled and keeps waking up and asking for her brothers and sister and asking "whats Happened to me" this is hard as she doesnt understand whats going on she is like this all day and night on and off not much sleep for anybody this night but hopefully tomorow will be better.

Post Op day 2 Thursday grace is much better today in herself her fentynal is being stopped today and the difference is amazing in her she calms right down and even start to move her arms and legs aounf her right arm looks amazing already she could not put it straight before the op and is noe led with both her arms above her head her toes look flat which they never have befor and her legs look lovely and relaxed, Gracie spends the day watching tv and we read books, tomorow she can get our of bed for the first time so we are looking forward to seeing what will happen then . we also had a visit from Sharon Callum who had the surgery 3 weeks ago he brought Gracie a get well Balloon which was lovely.

Post 0p day 3 Friday
we had therapy this morning at which was just getting gracie out of bed into her chair and going for a walk for half an hour she loved being out of bed and we went up to the roof garden in the hospital where grace threw some dimes in the fountain and made a wish, wondered what she wished for? we then went for a short trip to the playroom where grace played with the trains, she was very wobbly and her head was nodding the whole time but this is normal and she should regain this strength very soon.

after lunch it was time for more therapy we transfered her to her wheelchair which is a bit awkward but not that bad as gracie is small this must be really hard to do when you have an older child that has has the surgery.

we met Michael the pt therapist and he took us down to the therapy room, i know now why some people have called him mad michael he is crazy!!!!! but in a good way, we did some streches and tried to sit to stand but gracie is so weak at the moment although she did put some effort into her standing and did well me and adam both had a few tears watching her be able to move with no tightness is amazing she didnt moan once either she is a very brave little girl.