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!

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! :)