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!! 🙏🏻🙏🏻😊😊

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 😢

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

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!! 😊

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

9 months post SDR

This time last year Dylan could stand for over a minute with support, bunny hop on all fours, roll, he could sit with his legs crossed for maybe up to a minute. Dylan had to be put into most of these positions, he was only able to transition from rolling up on to his knees but couldn't get back into the rolling position himself. At this point last year Dylan was non verbal and toilet training was a struggle. Dylan could walk in his Rifton Pacer gait trainer, this is an anterior gait trainer which means it is positioned in front of Dylan and moved forward rather than being pulled from behind (much much harder for Dylan). Dylan's gait trainer had forearm supports, a chest support and a sling seat that was a hip guide and also acted as a support in case Dylan's legs bucked. 

Dylan is now almost 9 months post SDR and about 8.5 months post PERCS.

Dylan still needs slight support for balance when he stands, but I've lost count how long he can stand for, he can even pull himself up to stand at the side of the couch and maintain his balance for a bit using the couch 😃

Dylan can still roll, bunny hop and can now sit on the floor with his legs out straight in front of him (harder than you might think!) not only this but he can transition in and out of all of these positions himself.

Dylan is now pretty much toilet trained and has OVER 80 WORDS!! 

While in St Louis, Dylan got a posterior Kaye walker and just hated it, he finds it difficult to use and because Dylan's hands are quite badly affected by his CP it's hard for him to grip the handles and pull it behind him. It took sometime but eventually he would use it every now and then and could use it as long as we held his hands in position on the handles. 

Dylan much prefers the anterior gait trainer and a couple of months after SDR we were able to remove the chest support, which was a massive step for him and thankfully he's been flying around in the yard in school this week being in the thick of it all with his classmates (who are wonderfully supportive of him, couldn't have wished for a better group of boys for him to be in school with! 😃)

Sometimes it's hard to see just how far he's come until you step back and literally do a list like above or sometimes it's like Dylan senses it and does something unbelievable, like he did tonight..... Tonight just before bed Dylan took 10 independent steps in his KAYE walker, yes that posterior walker that he hates and finds so so hard!! No help from me and no support for buckling legs! Just Dylan and a walker for 10 WHOLE STEPS! 😃 Couldn't be prouder! 😊

3 months post SDR

Dylan has been really busy and he's been having loads of fun! On Sunday 29th March he was at the SDR party in Dublin and met loads of other kids who have had SDR and other kids who are going to, Dr Park even came all the way from St Louis! And he met Mickey Mouse! 😃 Highlight of his life! :) Then on the Monday we sailed to Wales and drove from Holyhead to Cardiff passing through the beautiful Snowdonia! Dylan has his first day at SDR Fitness Wales on the Tuesday and he was super! 😃 Days 2 and 3 were tiring and there were some tears (but mostly giggles!) and Dylan is now back to pre op strength and dare I say a wee bit stronger than that!

6th April marked 3 months since Dylans SDR surgery and on the 7th April something just clicked with Dylan...Sit to stand no longer means "lean back and stiffen up" it is now controlled, he leans forwards and pushes down through his legs! Dylan stood holding my index fingers for 20 seconds and stood unaided for one whole second (that's really long for someone who's never done that before :) )
The future is looking bright for little Dylan! :)