Day 6 St Louis - Post Op Day 1!

So it's still like the arctic here in St Louis but nothing warms your heart better than seeing your baby doing so well. He's had a few ups and downs today but by and large he's been smiling when he's not sleeping! :) 

Dylan did start to have some muscle spasms in the early hours of this morning and valium seemed to be controlling them for the most part but he started having them again (not very bad) about 45mins before he could have his next dose of valium so they started him on a long acting muscle relaxant and it appears to be doing the job intended, the staff here are great, I couldn't fault any of them, they are all lovely people! Daddy is on the night shift again, so more updates to follow but he just amazes me! :)

Deryn has been great too, he's not really adjusting to the time difference yet and he's in his terrible two's phase so not the best time to bring him anywhere, but with everything that has been going on he really has been such a great little boy! So proud of both my boys x 

Day 5 St Louis - Operation Day!

Today started very early, despite going to bed last night at 9pm extremely tired, I just couldn't sleep, I woke up every hour! We got Dylan up at about 5.15am and brought him to the hospital for 5.45am.

Dylan's nurse Cherie did all of his checks and gave him medicine that made him really drowsy. A lot of people saw Dylan today and asked a lot of the same questions, everything was checked and double checked so that was good. Dylan was brought down to surgery at about 7.15am and I made my way back up to the private waiting room (teary eyed)! A member of Dr Parks team rang at 8.15am to tell me that surgery had started, they rang again at 9.15am to say Dr Park was half way through and again shortly after 10am to say that Dr Park was finishing up, every phone call also assured that all Dylan's vital signs were good and he was doing just fine. Dr. Park came to our waiting room at about 10.45am to tell us that everything went well and that Dylan was doing ok and advised us that we will get another call to let us know when Dylan can be visited in recovery. Everything from start to finish was so smooth and you just know your child is in the hands of complete professionals, its a very calming feeling. Dylan was moved to the ward at about 12pm, when he woke he was very sleepy and very teary. Daddy is on night shift at the mo and is keeping me updated on how well Dylan is doing. Full of smiles and chat, he received a lovely big Lightening McQueen balloon from Katie Byrne, which has made him a very happy chappy, thank you Katie x

From the minute Dylan was born he was a trooper, there's no stopping him now! :) Dylan has a hard road ahead of him but there's no better boy for the job! I just hope he gets through the next couple of days alright, but I'm sure he will :) 

Surgery has begun!

Dylan and Mr Tumble all gowned! I have read so much about this surgery, researched, followed the progress of hundreds of kids, went against all professionals in Ireland and pushed to get Dylan this surgery.... All of this and I still can't believe I am here, nothing can ever prepare you for when they wheel your child away. All my trust is in Dr Park and his team now as surgery has just started, please keep my baby in your prayers x

Day 4 St Louis - Pre Op Day!

Today started out nice and cold again at -10 degrees as we set off on our journey to meet Dr Park. The shuttle service run by The Residence Inn is great, dropped right to the entrance of St.Louis Childrens Hospital and picked up there again when we were finished, fantastic service! 

We arrived not really knowing what to expect and we were greeted by a very pleasant man on hand to give us directions.(I think he was a police officer!) The hospital was clean and bright just as a hospital should be! Our first appointment was 9.30am, we had to watch a video about SDR and then Dylan had a physio assessment with Jacky. Jacky was happy with Dylan's assessment, she ran through different things regarding the hospital facilities, what to expect after SDR and the physiotherapy to follow. We then met the man himself "Sir Dr. Park"! Dr. Park's letter from June said "We feel Dylan has the chance to walk with a walker" and PERCS wasn't recommended at that time. Today Dr. Park recommended PERCS for Dylan while we are here and said he reckons Dylan will walk INDEPENDENTLY!! Best news ever! Dylan starts a long road of hard work tomorrow, he is scheduled for surgery for 7.30am (1.30pm at home) so all good vibes, thoughts, prayers and candles welcome.

Day 3 St. Louis! The Deep Freeze!!

Today, unfortunately Dylan is still pretty wiped! (Getting in on this American slang already😃) Really hoping Dylan comes round for tomorrow's physio assessment and definitely hope he comes round before Tuesday, he really needs to be well rested by then! The plan today was to go to the zoo, the kids woke up early and the weather was fine, so we went downstairs for some breakfast and within an hour of finishing breakfast it was in the minus degrees and snowing! Safe to say we didn't venture to the zoo today, but we will at some stage while we're here I'm sure, there's so much to see and do! Rumour has it that the weather is due to get colder this week, thank god we brought our winter woollies! :) We did end up taking a trip to Walmart... It was an experience, the place is HUGE! :)

The plan for tomorrow is hospital at 9.30 (15.30 back home) to meet Dr. Park, Dylan loves the book "Sir Dr. Park and the dragon spasticity" so he seems to be looking forward to it, so let's hope all goes well and the weather gets warmer!:)

Day 2 St Louis!

Nothing major to report, today was a relaxing day, we still have 2 very tired babies and it was quite a rainy day so we didn't do too much. I've heard a lot about the Galleria and The Cheesecake Factory so we went for a look, there was a queue for a table at The Cheesecake Factory, which of course is a good sign but not something these 2 jet-lagged babies will tolerate right now, so maybe another day! The zoo is close by so we might venture down there tomorrow! Dylan meets Dr Park and has his physio assessment on Monday, he is then scheduled for such a huge operation on Tuesday I just want him, relaxed, strong and well rested, so nothing too hectic planned for the moment!

Day 1 St Louis! We're Finally Here!!

A car, a bus , a train, two planes, 3905 miles and 20 hours later we have 2 very tired little boys (thank god for iPads and dummy's!) We set out on the road at 7am and got to our hotel at 8pm local time (2am next day our time) so it was a really long day for Dylan and Deryn but hopefully it will bring them round quickly to St Louis time as we're not arriving mid day and they get to sleep all night! (Here's hoping!) 

Hopefully we'll have many many exciting updates during the month we're here, time for sleep now 😴😃