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

Days 16 & 17 St Louis - Birthday Weekend!

We had great intentions of Dylan using his walker a bit this weekend but we couldn't get him looking anyway comfortable in it so we'll have to get someone to look at it tomorrow for him so he can start using it! On the bright side though (pun intended!) the sun came out and the temperature came up enough to venture out and have some fun! After working up an appetite wrestling the walker we headed off to "The Dubliner" to have some good food, Daddy even had a decent pint of Guinness (which is hard to come by outside of Ireland). 

We then headed off to the zoo, the kids loved seeing all the animals. It was late when we got there and we didn't get to go on the train but hopefully the weather will stay nice and we'll get to go another day because we have 2 huge train fans!

Today was an even nicer day, the temperature came up to a very acceptable 12 degrees! :) 

We headed off to the science centre, it was absolutely packed being a Sunday but a place that we'll definitely visit again, so many different things to see there. We also went to the planetarium, I saw the first few minutes of the show before I had to take Deryn out as he wasn't very interested in the stars but Dylan loved it! Deryn loves being out and about though and Forest Park on a day like today was a great place to be. When Daddy and Dylan were finished in the planetarium we continued our walk around the park and finished a lovely weekend with dinner in "The Dubliner" again, I have a feeling there'll be a few dinners there! 

Dylan is in for another tough week with his PERCS surgery scheduled for Tuesday, but if the last two weeks are anything to go by he'll hopefully breeze through it! :)

Day 15 St Louis - Dylan's Birthday!

Dylan had a tough day in physio today but he still worked really hard. Dylan did loads of work on the total gym and did 5mins on the treadmill (beating yesterday's record!) Dylan's walker arrived today also so I'm looking forward to him using that. I think Dylan is happy that it's his last physio for this week, he has done 8 days straight now and is tired!

Thankfully the weather was much much warmer today, warm enough to be out in it! We took Dylan and Deryn to the Galleria and into the Disney shop for a bit of birthday spoiling and Dylan wanted McDonalds for dinner so we treated them to some McDonalds on the way home.

Dylan got a lovely treat this morning, he got some pictures from home of his classmates wishing him a happy birthday and the lovely wall they've done in the class while Dylan is away. Dylan's classmates are such a lovely group of little boys. 

The weather is due to stay warm so I think we're finally going to get to do some exploring tomorrow, maybe go to Forest Park and the Zoo :) 

Day 14 St Louis!

Dylan was a trooper again today, a couple of tears, but smiles for the most part!:) Dylan did all sorts today, he started out on the total gym and did great, he then walked to the treadmill where he did 4mins 51secs in total, he had a couple of breaks on the treadmill but still did fantastic for his first time on it!

Dylan then walked to the bench to do some stretches and arm work, he hates doing stuff with his left hand but it's definitely easier for him since SDR. Dylan finished up his session working on his half kneel and walking back to his buggy!

Today was a lot warmer so we went for a walk and also had a little game of basketball with Dylan and Deryn, they both loved it, they had so much fun!:)  I hope the weather continues to warm up, we can all wrap up and move around but the cold weather is tough on Dylan, tomorrow is his birthday so hopefully it is warm enough to get out and about and we can do something nice with Dylan and Deryn.