Saturday, 26 March 2016

Goodbye St. Louis, we'll miss you!

So Dylan managed to get 2 days of physio in during our stay and they were both with Mad Mike, Dylan has great timing! :) Over the last 2 days Dylan did some nice work with Mike, he did some bowling, football, he did great on the trike (which he was unable to peddle the last time we were here) and managed 7 minutes on the treadmill, only two days but a productive 2 days! :) 
Listening Intently
Loving the trike

Showing off his new skills
Treadmill was a piece of cake!

The last time we were here it was so cold we didn't get to do much but over the last couple of days, as Dylan was feeling up to it, we decided to be tourists!


There's a little bit of Ireland everywhere ☘
Being tourists at the arch :)

Taking the metro for some cheesecake 🧀🍰
Admiring the skyscrapers 🏙 Although
this is probably small by American standards! :)

Now that our time at Childrens is done and the body clocks have adjusted its time for some Easter fun! Every school holiday/midterm is usually crammed with therapy so this time we decided to do both, I hope Disney World is ready for my crazy boys because they are definitely ready for Disney World :-D

Thursday, 24 March 2016

See you tomorrow Mad Mike! :)

Yay!! Dylan is on the mend!! He was still too weak for physio this morning but by lunch time he was much better so we all took a trip on the metro to the Galleria for a walk around, they were very excited about going on the train (I have two Thomas the Tank fanatics!) The boys were spoiled for choice in the Disney store but managed to make up their mind in the end, they settled for Lightening McQueen! Who else? 😊
Dylan was quite tired after his adventures today but has eaten all three meals and is now in bed ready to face Mad Mike in the morning!! 🙏🏻🙏🏻😊😊

Tuesday, 22 March 2016

There's no moving him......

Dylan was due to start physio today at 1pm, it is now 3.15pm and Dylan has not moved from his bed all day, he wouldn't eat anything for breakfast but said he'd have some orange juice, which just came straight back up, he's eaten half a banana, some crisps and a cracker although he's drinking plenty of water. Myself and Deryn decided to take a little trip to the Galleria, it's a lovely day here today, such a shame we can't all get out and about. Hopefully Dylan will feel better soon and see Mad Mike at least once before we head off again, he had so much fun with Mike the last time he was here. 
 Not moving from his bed 😢

Monday, 21 March 2016

Review Day!

Dylan had been progressing really well since January and had been doing some really nice walking and standing, but in the last couple of weeks although he wanted his walker all the time he also seemed really drained and a trip all the way to the US of A has not helped. Dylan is awake since about 6am and has refused to eat all day, it's now 5pm here. He had his physio therapy review today and his review with Dr. Park and it's a shame he is in such bad form as they really didn't see the best of Dylan today. On a brighter note though, Dr.Park said Dylan will continue to improve, he does not think his spasticity will come back (which can happen, especially in kids that have quad cp), he thinks the balance issues Dylan is having is just some weakness, not dystonia and he still thinks Dylan will walk independently! So good news all round!! 😃😃
   Waiting for Dr.Park

Sunday, 20 March 2016

Weeeeee're Baaaaaack!

We're back on American soil!
We left our house at 6.20am on 18th March and got to our hotel at 10pm on the 18th March (3am 19th March our time) so a VERY long day! 😴😴
The Body clocks are all over the place and today we have two sick little boys but resting and in good form. 

Dylan is exhausted.... So much so that our GP referred him to hospital due to possible seizure activity which was more than likely caused by infection and exhaustion, Dylan has been really sick for the last 13 months on and off but in the last few weeks he seemed to be bouncing back and was doing great work in physio and didn't want to use his wheelchair at all.... But as always cerebral palsy is unpredictable and slaps you in the face when you're least expecting it, we'll just have to take it easy on Dylan in physio over the next week and as always Dylan will probably surprise us when we're least expecting it!! 😊

Wednesday, 6 January 2016

1 Whole Year Post Op!

Today marks a full year since Dylan had SDR with Dr. Park and we just can't believe the change in him. Dylan has gone from strength to strength, he's talking and walking, two things that were only a dream 12 months ago! Dylan has been such a busy little boy this year, below is a snippet of just how busy he has been... 2016 is shaping up to be just as busy! :) A few videos to follow also so keep an eye on the page! We hope everyone's New Year is fantastic... Ours is certainly starting off great! :) #SDRChangesLives