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

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! :)

Progress!!

Dylan could not use his Kaye walker while in the US, even with the sling seat, it was just too hard for him. We are now just under 6 weeks post SDR and 4 weeks post PERCS and Dylan can take a few steps in the Kaye walker! I have my fingers just in front of his hips to help him with his balance but that's about it, no sling seat!! Baby steps, but we're getting there! :) 

Day 33 of 30 - Hello Chicago

So may aswell do a blog post from Chicago while I'm here, sure it would be rude not to :) But I must warn you all, this is again mostly a rant, as we are now into day 33 of our 30 days in America! However, this rant comes with a happy ending! :)

After Sundays commotions we were so very happy to finally be on our way home! Everything seemed to be going well except for a one hour delay with the Aer Lingus flight but that was kind of in our favour as we weren't rushing through Chicago airport like we imagined we would have been! At about 7.45 we were advised that there was a delay with the flight and we would get updated every 20mins, that's never good! Just after 8 the plane was being checked and cleaned, and it was still being checked and cleaned 2 hours later, until they finally told us that the flight was cancelled due to maintenance and we are all scheduled on tomorrow's flight instead. They gave us a $10.00 meal voucher each and told us to wait for the shuttle bus for the Holiday Inn, we managed to miss this shuttle as we had nappies to change! However maybe Lady Luck was secretly on our side again as people came back from the Holiday Inn fuming as there were no rooms available!! :-O

Aer Lingus then advised many of the travellers that they were going to put them up in a different Holiday Inn....an hour away!?? That didn't go down too well!!

We were one of the lucky few that were given the Hilton as our second option, no turning our noses up at that! :-D

On the shuttle we met two very nice gentlemen, one was part of the Aer Lingus debacle and the other was probably the nicest stranger we have ever come across in our 27 years! When we got to the Hilton this man was ahead of us in the queue and asked the guy at the front desk to give us his loyalty points to upgrade our room to the nicest one, which was a Presidential Suite!! :-O 

Our travel nightmare has actually turned into one of the nicest memories :) 

Chicago wasn't so bad to get stuck in after all! :)

The picture may not look like much.... But if you look really closely past all the fog/smog you'll see the Chicago skyline :)

Day 31 St Louis - The Longest Goodbye Ever!!

Warning! This Blog is a rant! :)

All week people have been telling us to check the weather and flight status before we leave on Sunday, just as well I did! We got up nice and early packed the remaining bits and checked the flight status to see this.....

It was an extremely stressful morning I have to say! I spent about 4 hours on the phone (2 of those hours I was on hold to United Airlines!) I rang St Louis airport to check as I wasn't sure of the validity of the website I was checking and I was told "Well it's only raining here, so you'll have to check with O'Hare Airport"..... Eh? Are you for real? You can't tell me if a flight is leaving your airport or not? This lady then proceeded to tell me that according to GOOGLE the flight was indeed cancelled! Yes that's right, I said GOOGLE!! >:-| 

I then rang Aer Lingus who confirmed that their flight to Dublin was leaving Chicago but was just delayed and offered to reschedule the entire booking for tomorrow, I said I'd leave it to see if there was any change on the flight from St Louis as the storm was moving north. There wasn't, so I rang Aer Lingus again to reschedule only to get through to the most unhelpful person I think I've ever come across who ended up telling me I need to ring United Airlines to reschedule and hung up on me!! Our United Airlines flight was a connector flight for 4 different companies as were many United Airlines flights today so as you can imagine the hold time was insane! After two hours on hold with United I chanced Aer Lingus again and with the luck of god I got through to the first person I had been speaking to and she rescheduled us for tomorrow, but we now only have 2 hours to get through Chicago as that was the only flight left out of St Louis tomorrow! 

On the way out here we were left waiting for Dylan's special needs buggy in Chicago for over a half an hour while everyone else was greeted with their wheelchairs, that buggy almost didn't stop in Chicago it was destined to go Dublin straight to St Louis and we almost had to carry Dylan, Deryn and bags through Chicago Airport, but I said I'd let that one slide, sorry I did now! 

Through all of the commotion today Lady Luck was somehow on my side as I checked all this before I left for the airport and we were able to just stay at the hotel, the room we are in wasn't booked for tonight so we didn't even have to switch rooms :) 

I am now hoping the next blog will be from the Emerald Isle (I may have spoke too soon yesterday!) 

Missouri, I believe you're known as the Show Me state..... Can you Show Me the way out please? :)

Day 30 - Goodbye St Louis!!

And that's a wrap!! :) We spent most of our day relaxing and packing and managed to get in one last meal at The Dubliner, there's nothing like a good shepherds pie! :) It has been an absolutely surreal experience! We originally sent Dylan's application to Dr Park in early 2013, so it has taken nearly 2 years to get Dylan here, the fact that he is now over his operations and we're going home is almost hard to believe.

We are glad this part is over cause there's no place like home but we are so grateful to everyone at SLCH, we have to come back in a year for Dr Park to review Dylan and (without wishing our lives away) I can't wait to see what happens in that year! Thanks for sharing Dylan's journey with us, the next blog post from us will be from the Emerald Isle, Dylan can't wait to get back to all his classmates (and teachers!)  :)

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!