Day 29 St Louis - Last day at SLCH!

Dylan woke up in much better form today, he was walking all over the apartment and standing by the window very nicely! Dylan had an appointment with Dr Park today which was great. Dr Park was very happy with Dylan's recovery and progress and confirmed his thoughts on Dylan, he reckons Dylan will walk independently indoors,outdoors, everywhere!! Dylan has a lot of hard work ahead of him but if anyone will do it Dylan will and it will all be so worth it!! 

Dylan had his last physio session today with Michael! And of course, he did great again! :) Walked all over the place, did lovely sit it stands and had loads of fun on the trike!! Dylan also stood for a about 4/5 seconds without me holding on, he was holding onto a bench!! Again, I'm sure 4/5 seconds doesn't seem like much to most but me not holding him is HUGE!! :)

I have to say I'll miss a lot of people we've met here, the staff are fantastic in this hospital, they go above and beyond for our kids! We'll also miss Isla... Isla was Dylan's SDR buddy, they had surgery the same day, they shared a room after SDR, had PERCS the same day, had their casts off the same day and had their last physio appointment the same time, SDR buddies :) Isla is doing amazing things already and we can't wait to see how see progresses!! :) 

As much as it's been great, it's now time to pack up some bags as we leave on Sunday morning and get back home Monday morning, I can't wait to see everyone and my doggies, miss yee so much!!

Day 28 St Louis!

Not much to report today unfortunately, Dylan woke up a sick little boy, he had a sore throat and hasn't eaten much today, the mere mention of therapy or even his splints sent him into utter devastation, so he missed therapy today!! :( On the bright side he came around a little bit in the late afternoon and he did do a little bit of gentle "therapy" for me and he did well, he did some rolling, crawling and kneeling. Dylan is still quite weak, when he tries to come up on his knees his head looks really heavy :) but he's definitely getting stronger everyday! :) Dylan has one last physio appointment tomorrow and an appointment with Dr Park and that's it until his review this time next year! We are due to fly home Sunday but everyone is telling us the weather may be an issue as it's due to snow Sunday! :-/ Please light more candles!! :-)

Day 27 St Louis!

So Dylan started off early today getting his casts off, woohoo! :) The experience was a little bit traumatic for Dylan, nothing hurt him but the sound of the blade scared him, every time the blade stopped he was fine though. Thanks to Dr Dobbs and Dr Park, Dylan quite literally has new legs and he loves using them!! :) 

Dylan was back over to the hospital a second time for some physio with Michael. Dylan did mainly walking and trunk work today, he did really well on the treadmill, smashing previous records at 8mins 18secs with only 2 rests!! 

Dylan also wore his splints all day today with absolutely no complaints, they are much softer than his other ones and way more flexible. 

It was a sunny day today but the breeze was quite cold so we wrapped up and took a walk to the science centre, it was great on a weekday the kids actually got to do some stuff!! :) 

Deryn was very cranky near the end of it though (as he was up all night!) so when we came back to the hotel he had a nap and we didn't budge after that!! Dylan has 2 more physio sessions and an appointment with Dr Park (hopefully we'll get a picture with Dr Park too!)

Day 26 St Louis!

Dylan had a great day today in physio, loads of work done with loads of smiles!:)

Dylan started out doing high kneeling full of smiles playing with one of his many favourites Mr Potato Head, then walked his way to the total gym for loads of leg work, did some more trunk and leg work on a balance seat (don't know the name of this but need to get it!) popping bubbles and finished up on the trike.

Dylan's trunk is still weaker than before surgery, but he's definitely getting stronger and stronger everyday. We can already see the strength he's gaining in his legs, just this evening Dylan stood by the window for AGES (about 10 mins but that's ages for Dylan), I helped Dylan with posture and balance but he held the majority of his weight on his own two legs!! :) It may be dull here in St Louis but Dylan's future looks brighter and brighter every day! :) All those wishes being wooshed over here by all Dylan's classmates are working really well, he's doing so good and can't wait to see all his friends! :) 

Day 25 St Louis!

Dylan had an OK day today, there was some protest, but plenty of smiles too! Dylan did some work again on the total gym, some kneeling, some walking, some work on the trike and even some work with bubbles, which of course, he loved!! :)

It was so cold today in St Louis that we had little flurries of snow, brrrrrr! But the kids didn't mind the cold so much as they got a little bit of spoiling in the Disney store! :) 

We finally got to do The Cheesecake Factory today and all I can say is Yum! We all loved it, Dylan's last week is a busy one but we'll definitely try to make time to go back for more before the week is out!

Day 24 St Louis!

Nothing much to report, today was a miserable day in St Louis, misty rain and fog, so safe to say everyone had a well earned rest today, the furthest we ventured was The Dubliner for dinner. Dylan has another busy week ahead of him with physio everyday plus an early appointment Wednesday to get his casts off and another appointment on Friday with Dr Park. Dylan is still doing great, in good form, pain free and loving his new legs!! :) 

Day 23 St Louis!

The plan today was the science centre, the arch and shopping, 2 outta 3 ain't bad! :) We got down early to the science centre so the kids could actually get to use some of the things down there because once it gets busy in there you haven't a hope of using anything! 

The arch was on the cards for after as it was a lovely day, like summer again, but another family told us that you need to go up steps to get to the very top which is kind of hard with a wheelchair :-/ We still might check it out tomorrow though...who knows? 

We did get to go shopping though, hooray! After 2 weeks of tough physio therapy we were all in need of some retail therapy! :) Both boys are tired but in great form. Dylan is coming on great, tonight he was standing by the sink (supported mostly for balance as he held most of his own weight!) to brush his teeth, this is normally done sitting in his chair or held in our arms, again something very simple for most, but the very start of a future for Dylan with some independence! 

Day 22 St Louis - 2 weeks down, 1 to go!

Dylan was in great form today! Full of smiles in physio, he's doing so well, I'm amazed! :) Dylan did a lot of work on his trunk today with bench work, high kneeling and half kneeling (it's so easy now to get him into half kneel, it was so hard before due to tightness!) he did a little bit of walking too!

Dylan is just on neurofen now for pain and is doing just fine, he did have a couple of muscle spasms last night but nothing very severe thank god! Both boys are tired but they are doing so much! :) The weather is supposed to be nice for the weekend, we didn't get to go shopping today so we're off to the science centre again tomorrow nice and early and then off for some shopping, Dylan has put in 2 hard weeks of physio so deserves a treat and with so much attention on Dylan at the moment Deryn deserves a bit of spoiling too :) 

Day 21 St Louis!

Dylan remains in good form and pain free with the help of calpol and neurofen (or whatever the American versions are called!) Dylan had another good day in physio today, he started out on the total gym and scooted his way to the treadmill where he did a pretty amazing 6mins 37secs! 

We did unfortunately have some tears nearer the end of the session when he was working on his arms but those tears went away quick enough when the trike appeared :) 

Between a tough physio regime and the sibling playroom the kids were really tired again today and it was really cold so we stayed indoors again this evening. Shopping is on the cards for tomorrow temperature (and temperaments) permitting! :) 

Day 20 St Louis - Post Op (PERCS)Day 1...... Again

Dylan was content and pain free last night in the hospital but he didn't get very much sleep. However despite having hardly any sleep he absolutely smashed it today in physio! Dylan did all leg work today in physio, loads of sit to stands, walking (with a lovely heel-toe strike I may add!) and riding the trike. I think Dylan surprised himself today with his standing skills, he got so excited standing up today and he did it with such ease compared to a couple of days ago. Dylan (and kids like him) absolutely amaze me, he just gets up and gets on with it and more often than not enjoys doing the work! Looking at Dylan today you'd never guess he just had surgery yesterday (except maybe the bright red casts on his legs giving it away!) 

Dylan was quite tired after his physio and Deryn was also tired this afternoon so we didn't really do anything today, just left the kids rest up, went out for some dinner and back to the hotel. Dylan has more physio tomorrow so the plan is make sure he's well rested, pain free and ready to smash it again! :)

Day 19 St Louis - PERCS Op Day!

Dylan had another tough day today (not that you'd know to look at him!) he was in the hospital with daddy this morning at 6.15am to have his PERCS surgery done to lengthen his hamstrings and heel cords. Everything went well and surgery was finished within about an hour, Dylan was out of recovery and up on the ward by 10am, which was much quicker than we were expecting! Dylan is doing great and his appetite is just as it should be, he hasn't stopped eating since the nurse woke him at lunch time, he has fluids on a drip but he's taking plenty of drinks also. The worst part of Dylans day today was a DVD malfunction, the DVD wouldn't play and it sounded like the world had ended, no problem though about his legs? :) Kids are gas! Dylan also got to meet the touch dog Pepper today! (After the DVD malfunction tears!)

Dylan's feet are in casts at the moment and will remain in casts until next Wednesday, he got some snazzy boots too that he needs to wear over his casts so he can weight bear!  Dylan starts back at physio in the morning straight after being discharged but he's still smiling!! :)

Welcome To Holland by Emily Perl Kingsley

I didn't write this, this was written by Emily Perl Kingsley in 1987 but I just wanted to share it.....again! :)

Welcome To Holland

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Day 18 St Louis

The gait trainer Dylan has at home leaves Dylan weight bear but also gives him support in between steps when his legs buckle but unfortunately there is no way of fixing the Kaye walker we got here for Dylan to use comfortably until he's strong enough to keep his legs up himself and bear his own weight in between strides. However, once Dylan does have enough strength in his legs the Kaye Walker will be perfect for him. Dylan got all his new splints today too, he has long ones like the ones he already has, shorter ones for when he eventually needs less support and night splints to go with his knee immobilisers to get a good stretch at night time when he does most of his growing! Dylan did some good work today in physio too, he did some work on his trunk control and did really well, he also used the trike for the first time while he's been here and for the very first time in his life Dylan propelled himself a little bit on the trike, for some people that isn't much but for us it's bigger than HUGE!!

It was like a summers day today so after physio we took a walk to the science centre again and had some lunch there, they do some good burgers! The place was packed again today though, it's a public holiday today (Martin Luther King day I think). Deryn was tired and cranky after lunch so we brought him back to the hotel for a little nap. We were going to go to the arch today as it was so nice but by the time Deryn woke up we were too late so we went to Lafayette park instead to play on the swings! Deryn loved the swings but they were a bit too sore on Dylan's back, however there is a beautiful lake there with swans, ducks and geese and the kids had plenty of fun watching and feeding them. 

We ended a lovely day with some sub sandwiches back at the hotel! :) Dylan has another big surgery day tomorrow with Dr Dobbs. Dr Dobbs will be performing PERCS surgery to lengthen Dylans hamstrings and heel cords and hopefully all goes well again, please keep him in your thoughts :) x