Day 11 St Louis - 1st Out-Patient Therapy!

St Louis is getting warmer and set to come up to double digits by the weekend, hopefully we can get out and do some exploring because right now it is just so cold outside!

Dylan had his first out-patient therapy and he did very good today, he did some more assisted crawling, standing and walking! There were a couple of times where Michael could have lost Dylan for the session but fair play to him he brought him right back around and had him full of smiles! Dylan didn't want to do the trike today either but I'm sure he'll come round to that when the pain calms down a bit. Dylan picked out the colour and design for his Kaye Walker the other day and that is due to arrive sometime this week, I can't wait to get Dylan using it!

The hotel is nice they have dinner here Monday - Wednesday, tonight was Italian night and it was very tasty, I couldn't eat most of it because I wasn't feeling very good and whatever I have seems to have passed onto Deryn, I hope it doesn't go any further though, Dylan still needs to stay healthy for another surgery! I'm not sure when that is due to be scheduled but Dylan is due to have it sometime before we leave.

Day 10 St Louis - Post Op Day 5 (Home!)

It's a damp and dreary day today in downtown St Louis, but made very bright with Dylan being discharged from hospital and returning to our home away from home! Dylan had his last in-patient therapy session and had many tears today which is surprising considering he was so well yesterday! If Dylan gets put off a session it's hard to bring him back around and I reckon something hurt him at the start of the session, I've started his home physio since he was discharged though and he was great, so hopefully that continues. Dylan starts out-patient therapy tomorrow with Michael (Mad Mike) Kenyon, I've seen and read a lot about Michael and I'm looking forward to Dylan working with him! Dylan is still tender but doesn't seem to be in any pain, the muscle spasms seem to be at a minimum and his appetite is almost back to normal so all is going as it should, he's tired today though after a hard couple of days and out for the count in his bed, getting well rested for a week of hard work! 

Day 9 St Louis - Post Op Day 4!

The worst part really is over! Today was such a good day! Dylan had physio at 9am and he just did so well, we had no tears only concentration and smiles. In today's first session Dylan was in high kneel unassisted! (Except the bench!)

At the end of the session Dylan did some assisted walking and his legs were so loose, it was absolutely amazing to see, his hamstrings are still tight but PERCS will help that and Dylan's legs will be free to build true strength. Although this surgery is regarding spasticity in the legs, Dylan's left arm has definitely improved also. Dylan's left arm is normally so tight that it's pulled right into him, look at the difference in his left arm in the pictures below..... Nothing short of amazing!! :) 

After his session Dylan didn't want to be back in bed, he just wanted to be out and about, he's such an active boy, being in bed for so long is probably driving him mad! Dylan went to see the gardens again and down to see Thomas The Tank Engine! :-)

The second physio session went even better, more high kneeling and more assisted standing! 

Dylan has one more in patient physio tomorrow morning and then he is due to be discharged! As much as the hospital is great, I can't wait to get him out of there! 

Deryn is loving the sibling playroom, he is absolutely wrecked everytime I pick him up, they are great in there!! He's also looking forward to having his brother out of hospital so he can help teach him how to walk :) 

Day 8 St Louis - Post Op Day 3!

I think Deryn is finally coming around to the time zone, I think it's the first night since we got here that he slept all night long. I'm sure the sibling playroom will help a lot, he looked worn out when I collected him earlier! Dylan had a great night last night, only waking when being checked and changed and awake then for most of the day. Dylan's first physio session was at 9.30am and in this session we learned how to transfer Dylan from his bed to his buggy and from his buggy to his bed. It was scary, there were tears (more from mammy than Dylan!) We went for a walk around the ward, just a couple of laps and then Dylan wanted to get into bed, so we went back to his room. The next session was at 2pm, we had to bring him to the therapy room for this one. This session was harder on Dylan he had to do some real work, there were some stretches and he had to go on his tummy, then he had to sit on a bench. 

Dylan had some cries of protest and one or two of pain but the session ended with smiles so wasn't all bad! I think it was worse to watch than for Dylan to actually participate. Dylan also had a quick little trip to the rooftop gardens, they are beautiful, but it's still very cold here in St Louis.

Dylan's classmates back home all hold hands and wish really hard that Dylan will be better soon and will be home soon! I think that their wishes have whooshed all the way to America because Dylan is doing great! Dylan even had all his favorites today, spaghetti and meat balls, lemony lemonade, grapes and cookies! :)

Physio is at 9am and 1pm tomorrow, I hope they go a bit better than today! Although I've been advised by a few parents that have been here before me that the worst is over! Thank God for that!! :)

Day 7 St Louis - Post Op Day 2!

Still cold in St Louis, but the temperature seems to be coming up to -3 degrees, hoorah!! :)

The plan today was to leave Deryn get familiar with the sibling playroom for when Dylan starts his therapy. However, the fire alarm went off in the hotel at 11.30 last night and Deryn didn't get back to sleep until 4am, so by the time we got to the hospital, the shuttle ride had knocked him out, poor child! :) Today is post op day 2 for Dylan and he is doing so well! The spasms are under control now which is great, Dylan lets out a little cry when he's being turned but in between that he's great, he's eating and drinking and holding it all down too!! In the early hours Dylan will be disconnected from the heart monitors and epidural and he will start to take pain relief orally. It'll be nice to have him unhooked from everything. Physiotherapy starts bright and early at 9.30 tomorrow morning and the team here will show us how to transfer Dylan (dreading that part!) Dylan will have another physio session at 2pm tomorrow. Let's hope it's not too rough on him.

Mammy is on night shift tonight.... I'll probably get more sleep here! :)

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 :)