Giant gaps!

Sorry about the giant gaps in between my paragraphs but for the life of me I can't get rid of them!

Photos courtesy of my sister, Emma 'David' Bailey!

K xxx

Max is finally walking :)

Max continues to do very well. Apart from getting tonsillitis & ear infections more often than we'd want he is very healthy and just growing up so quickly.

Max joined the library, started nursery, is picking up more words and has learnt to walk all in the past month! He has become more adventurous too and likes to climb on everything and anything - he is thoroughly enjoying his new found freedom and only crawls occasionally now. He seems to have gone from a baby to a little boy without us even noticing. We are so very proud of him - especially with the walking, which as an added bonus allows me to indulge in my obsession with buying shoes.....but now for Max!

He is doing great at nursery and I see the difference in him already from spending time with children his own age rather than always with his me. We have already got some artwork from him which is pride of place on the fridge (and I laughed at my sister when she framed her kids scribbles, I take it back Emma!).

We have a routine check up with his surgeon tomorrow but in general hospital appointments are now at a minimum. We have 1 more physio appointment in August with a view to being discharged - our clever Max :) He saw the respiratory Dr at the diaphragm clinic last week and he was very pleased with his progress especially given his tough time whilst at Yorkhill Sick Kids.

Will continue to keep blog updated.

Katie x

First steps!

Max's procedure has been put on hold due to his retching subsiding. We, along with the surgeon felt that it was best not to rock the boat when he was doing so well. We are literally down to 1 retch a day if that - we have not changed anything so not quite sure why they have stopped.....but its great!

Max's immune system seems to be coping much better with colds etc now too, the last cold hardly affected him at all. He has had a second bout of tonsillitis and ear infections but again has managed to fight them off no problem with a course of penicillin. We have been going to playgroup now almost routinely and so far so good on the infections front! We are thinking of putting him to nursery 1 day a week so we just need to find the right one now and more importantly one where they can do his tube feeds. I think I need a break from Max and he definitely needs a break from me!

I had my friend Melissa round last Friday night and Max literally took his first steps from me to Melissa without me even realising. He has done it a few times since but only when he wants, which is typical.

Max is still being entirely tube fed but continues to try licking different foods. Today he sat up with the other kids at the snack table and was quite happy copying them with a strawberry & cheesy crisp - mmmmh quite a combination together :)

Thats about all to report for now - and thats a good thing :)

Katie xxx

All going well.........

Max had his barium done on Friday 20th May and was a very brave boy. I managed to mess up and fed him his morning feed when he was supposed to be fasted, I was so annoyed at myself. As it turns out the dye could still clearly be seen so we didnt have to reschedule. Im not sure what I was really hoping for but it showed that Max does not have reflux so the retching still remains a mystery to us. The procedure itself is not painful in any way but its distressing to Max (and me)as he has to be held down so he remains still whilst they take a series of x-rays. We had to leave twice and come back again so he was thoroughly hacked off by the last check of the dye especially as he had fallen asleep in his push chair and i had to wake him :(

Max was scheduled to have his endoscopy done on Thursday 26th May but he has had a prity bad cold and they don't like to put him under anaesthetic when he is so bunged up so it was decided to cancel. Its not a long procedure by any means but i'm quite happy to wait for a bit as I feel like we've been at the hospital loads lately and a break is no bad thing.

We had an appointment on the 19th May with the physio who seemed generally happy with Max's progress. He is slightly behind with regards to walking but who wouldn't be I guess after what he's gone through? We've always been amazed at how well Max gets through all his hurdles and unexpected set backs despite still being so young - I know just how difficult Simon and I find it all at times. He is almost there with his walking, often trying to stand on his own for a couple seconds so now he just needs to take the steps. He has a push along baby walker which he likes to push around the living room although he does look a bit 'monster mash' as his legs do their own thing! He just needs the confidence to take off on his own which will come in the next few weeks im sure. His next appointment with his physio is not until August and i'm sure he'll be running by then. After that we no longer need to see a physio anymore, it will feel weird as it has always been part of our hopsital visits/routine and I enjoy seeing Maureen too. He will continue to see a dietician, respiratory dr, surgeon, speech therapist and occupational therapist until he is older - so I guess I should be glad he no longer needs at least 1 specialist!

We spent the weekend in Edinburgh which was a really lovely break from home. The routine was the same, feeding every 3 hours etc but it was fun to do things together and see Max enjoying himself at the Zoo and spending time with his grandparents.

Max's new date came through yesterday for his endoscopy and stretch so we are back into hospital next Thursday at 8am for his procedure. Its something we've pushed for as we still want to see if there is something stopping Max eat and this particular procedure was last done over a year ago. I think we both feel it might draw a blank but its something we need to rule out again. As for the stretch, this is from his fundoplication done in Jan 10 and may also help with his retching.

Max is actually starting to lick foods more and is always keen to try what we are eating. He even gets quite angry when we eat which is a very good sign that he is starting to understand eating. He was desperate for a bag of crisps at the supermarket checkout today so I bought them and he was so excited. To an onlooker he must have looked like just a normal toddler getting a treat but I was just so happy that I could give him some food that he wanted :)

Will update with results on Max's endoscopy once we have them.

Katie x

Max 18 months past Tuesday!

Hi everyone,

The last few days have seen Max the healthiest he has been in months and months! He is retching less, tolerating his new milk we started him on yesterday :) and just generally seeming so much more lively - which means more chasing about for me! He is yet to start walking but that doesn't stop him crawling about at high speed.

I never blogged before but Max had a very suspicious rash about 2 weeks ago which I noticed when I went to bath him. He had been so agitated and seemed in pain, grabbing at his mouth and ears - I felt helpless as I had no idea what was wrong. I called NHS24 and with Max's "complex medical history" as they put it, it was best I took him in. Turns out it was an MMR rash which shows itself in about 5% of babies (he always makes it into the low to "rare" side effects!!). Mind put at rest they checked his ears and throat and found him to have an infection in both ears and tonsillitis :( He was put on penicillin which worked a treat :) Hence me saying he is finally well!

Things have been very tough for Simon and I since November, I don't exaggerate when I say this is honestly the first time he has been properly well since - it has been horrendous, draining etc but we feel we can really enjoy him again rather than feeling like his carers, well, I know that's how I felt. The last few days have been great great great, he is a joy to be around and is so full of life!

We had a great meeting with the speech therapist and occupational therapist last week. They could clearly see that Max 'wants' to eat but is definitely a little fearful of how it makes him feel (and the retching it brings) - this makes a huge difference as we are not dealing with a child that's adverse to eating (scared etc) which would make it even harder. We have since seen Mr Driver Max's surgeon with regards to the retching and we are awaiting some dates to take Max back into hospital to have a contrast and endoscopy done. This means feeding him his milk with some dye in it which will then be shown by x-ray on a screen to determine whether the milk is trying to come back up again. The endoscopy is a microscope which they put down Max's throat whilst asleep to see how his throat etc looks. These procedures will be done over two separate days. This will hopefully determine whether Max still has reflux or where the problem may lie with his retching. Retching is a VERY difficult problem to fix but its one we will totally strive to get rid of as its so debilitating for him on his bad days and horrible to watch him going through. Max received a fundoplication in January 10 which creates a wrap around esophagus to stop him being sick (he had such severe reflux this was the only option to keep the milk down) and although this is still working he may need a stretch and this is also what his surgeon plans to do when he has the endoscopy. A small deflated balloon is place in the GI tract and slowly inflated to stretch the fundo slightly.

We enjoyed a really great long weekend, watching the Royal Wedding at my sisters, heading out on the bikes (i'm new to this and puffed and panted my way up some hills!), going to the park, BBQ'ing with friends and generally enjoying the nice weather. Simon was off and it was great to do things together as a family, finally have some fun, yay, away from nasty bugs and viruses!

Will update once Max has had his procedures and hopefully report some further good news.

Katie xx

Good News!

Max had a check up with the neurologist a week past last Thursday and we got the amazing news that they no longer believe him to have evolving cerebral palsy. Simon and I doubted he had it given his range and flow of movements although we did still keep a closer eye on his development. I thought it might show itself more as he started to walk but it looks like we no longer need to worry about that now :) It was amazing to be told by the Dr as now we can put it out of our minds completely. I can't say i'm not still annoyed/angry at how we were told in June last year - it seemed a very quick assumption (it was never officially 'diagnosed') and the heartache we went through and our immediate family went through was unnecessary - it was a complete bombshell at the time given what we'd just come through with Max already. Overall, the treatment Max has had has been second to none, the nurses and in particular his surgeon have given him amazing care so it was only 1 bad experience.

Max starting walking with his walker last Friday - he just took off and even managed to steer it rather than just crash into walls! I was so amazed as he'd never even attempted to walk with it before, although he won't perform when we want him to - I guess that would be too easy!

We have two appointments at the hospital next week, 1 with the respiratory Dr to check all is well with his breathing, lung development etc and the other with a speech therapist and occupational therapist to re-assess his eating (or lack of it). He has had some good 'tasting days' where he licked his daddy's homemade lasagne and some tikka masala sauce followed by butterscotch angel delight (without retching) but in the main although interested in watching people eat he likes to keep to his distance.

Our main concern just now is the amount of retching Max continues to do. We were told it may get better as he gets older but so far this is not the case, which is very disappointing. Its very hard to watch him look so distressed and do nothing about it. We may look into trying some new medicines to see if this will calm it, something we will discuss with his surgeon.

Max has been ill again for over a week but he seems to be getting a little better and with the weather getting much nicer hopefully he'll get a good spell of feeling well. We are off to Spain in August for 2 weeks so that will do us all the world of good to get a break - after the burst pipes in November we are only just getting the kitchen re-fitted so things still feel quite hectic at home.

Hopefully my next post will say that Max is walking!

Kxxx

Not another virus!

Sorry for delay in update but as usual life has been busy.

We got home to Aberdeen 15th February following Max's hernia repair and all was going really well. Max was coming on so much and you could see how much the reherniation must have slowed him down because he took off crawling the day he was discharged from hospital! It was fantastic to get home and to start over again with our now healthy little boy. However, within a week of being home he picked up a cold which turned into a cough, i'm not normally one to panic about Max but given the ride we'd just come through I was worried it was RSV again and took him to have his chest listened to, which was clear. This went on for around 3 weeks with Max not getting any worse but not getting any better either. I eventually took him into A&E on the Tuesday of week 3 due to him crying so much, seeming quite lethargic and retching way more than usual, he was checked out and they felt he was good to go home - just cold & cough. I felt there might be more but as all his stats were fine off we went. By the Friday he was no better and I still had the same concerns so again I headed in to A&E to have him checked out and again we returned home. On Saturday morning with Simon off work we decided to head out for a walk, however Max was still very letharic, retching what felt like every 5 minutes, was now having really horrific diarrhoea and showing temp of 39.6deg C! Simon actually made the decision to take him in and i'm so glad he did. The nurses could see how dehydrated he was and started him on some fluids through his gastrostomy, he was also having some very jumpy movements due to his temperature which is apparently very common (but worrying to see). A stool sample had been taken on the Friday and within a couple of hours on Saturday the results were back that Max had picked up a virus known as Rotavirus. Rotavirus is the most common cause of severe diarrhoea among infants and young children infecting and damaging the cells that line the small intestine causing gastroenteritis. Max was given fluids to hydrate him and pain relief for the tummy cramps he was also having. I felt so sorry for him given what he had only just gone through and now this, he really deserved a break (and so did we!). By Monday afternoon Max seemed much better and the Drs felt he was good to come home. Tuesday was a very hard day as he seemed to get worse again crying all the time, having tummy cramps etc but we had started him back on his milks as advised and I think given the severity of his virus it was too soon. Its now Saturday and he seemed to be almost back to his usual self although we have still not put him back on full strength feeds.

We're back on the right path now and with winter almost behind us & RSV season fading we can look forward to a much healthier summer.

xx

Max gets home

On the ward round yesterday the Dr was so pleased with Max's progress that he asked if we wanted to take him home on a 'pass'...'yes please'! As we have to be back tomorrow morning at 8am to see Max's consultant they did not officially discharge us so we were out by 10.30am and straight back to the flat. My folks had arrived on Friday night and they were delighted to see him back home on Sunday - I think everyone is in awe at how well he has done, including his mummy & daddy! My folks gave Simon and I a break on Saturday and mum and I went shopping whilst Simon went to the gym - dad stayed at the hospital and played with Max and he was fast asleep when we got back (thats Max and not my dad!).

Max's scar is healing really well, its probably about 4inches and is on the left hand side of his chest. It has paper stiches which will eventually fall off themselves so he won't need to go back to have them taken out. We are due back down again in 6 weeks to see his surgeon and thereafter every 6 months.

To add to his surprise recovery, he even started crawling on Sunday morning.

We are hoping to head back home tomorrow early afternoon, i'm so excited to finally have the last 13 weeks behind us and Max looking such a healthy and happy boy.

xx

Max with some animals at Kelvingrove Museum today - our first trip out together in over 3 months!

Operation over......

Max's operation on Tuesday went even better than we could have hoped for. He was in surgery for 6 hours and instead of going to ITU where he was to be ventilated he went to HDU and was given only oxygen prongs. Simon and I were amazed to see him looking so well given such major surgery. The surgeon came to see us later on and said that his smaller left lung actually looked quite healthy and that his diaphragm also looked really good, so much so that they contemplated not using a patch to close the hernia (although they did land up using a patch). Max struggled a bit as he came round, he was very aggitated and disorientated and not even Simon or I could calm him down. Following his post-op x-ray the team noticed that part of his left lung was collapsed and decided to put him on CPAP, which blows air in through a tube in the nose and helps to re-inflate the lung/s. The CPAP did its job perfectly and although the lung is not yet fully inflated they removed the CPAP today, along with his epidural and stopped his morphine. He had oxygen prongs for a short while but also had these removed tonight. He has a new wound on the left side of his chest which will need regular dressing changes and checks for infection, luckily he doesn't seem to be having any pain there and is already trying to get moving in his cot.

The plan is to be moved to the ward tomorrow and then within a week we could be home - although it all depends on the surgeon and his team.

I honestly never thought it would go so well, its still been very hard, tiring and emotional (well more for me coz I blurb all the time!) but the outcome could not be better and we are so incredibly proud of Max :)

Looking forward to getting home and getting out and about!

xxx

I have attached a picture of Max going to surgery in the 'theatre car'

Max on CPAP

3 days to go.....

Well, we've made it back down to Glasgow and settled into the flat, Max is being bathed by daddy whilst i'm having a glass of wine updating my blog :)

We had a few family and neighbours pop in past yesterday to wish us all good luck which was so nice although I started feeling very anxious as the reality sets in. We wish we didn't have to be here at all but the thought of Max being better and us starting to do things as a family again makes me quite excited. We have really missed going out and about and doing the normal things, its been this way since November so we honestly can't wait to get going again.

Max is due into the hospital on Monday afternoon for his operation first thing on Tuesday morning. I will stay the night before because although he is familiar with hospitals he is so much more aware now and needs one of us with him. The good thing is he has no idea whats about to come and so its just Simon and I that have been dreading the 8th - Max has been his usual happy smiley self and that sometimes makes it harder as outwardly he looks so well.

Tomorrow we plan to have a nice day together and take Max to the park ect although I just want the day to pass so we can get on to the next and get things moving.

I never imagined parenthood would be such a rollercoaster but even at this point its the most rewarding job we could ever do.

Thanks again to everyone for their support and a special thanks to Max's friend Murray (and his mummy Emma) who made Max the cutest 'Get well soon' card complete with cotton wool balls and lots of paint!!!

xx

Max with his daddy

Back in Aberdeen :)

Simon and I made the decision on 7th January to come home to Aberdeen for a long weekend. We checked with the surgeon at Yorkhill who said it should be fine given Max's operation was not likely to be anytime the following week. It was amazing to get home after almost 7 weeks away. Max seemed so excited when he realised he was back in his house and even more excited when he saw some familiar toys! Things are far from normal but its made life more bareable now we are home and Simon can get back to work.

In general Max seems really happy and back to his old self, he is breathing a little quicker given the congestion in his chest but to look at him you would never know how much he has come through.

We now have a date for his hernia repair of 8th February - seems a million miles away but hopefully in this time Max will continue to get better as he still has some secretions on his lungs making him sound a little wheezy. He has put on weight, some would say 'chunky' which again is good for him going into this operation. As the date is 4 weeks away we decided to stay in Aberdeen until a few days before the op date.

Written down, this journey sounds a hundred times less painful than its actually been and I know we're tired of all the ups and downs and not knowing whats going to happen to Max next but then you find the strength to keep going because thats the least you can do when he's shown what he can do :)

We would like to thank you all again for all the kind emails, texts etc it really helps to know we are thought of.

Wishing everyone a happy and healthy new year.

xxx

Op postponed

We took Max into the hospital today to be admitted as planned only to be told that due to an outbreak of swine flu and RSV there was no bed for him in the intensive care or high dependancy unit. I had worked myself up so much for this but when they said we could take him home I couldn't decide if I was happy or not??? Simon was just happy to get out of the hospital I think! No idea whats going to happen next, as its near impossible to schedule the op given the situation i'm not sure if we will be coming home or not. I'm desperate to get home with Max but if we head just now it only means this whole op looms over us all...and then we have to come back down. I'm also worried Max starts to struggle, i'm totally confused. He is still showing after effects of the RSV so maybe it was not the right time anyway, although they did say this may be because of the organs in his chest - so may questions???

Anyway, Simon has gone out with Max to get some wine as we're already fed up thinking about it all - so we'll drink instead!

Will update when I can.

Simon, Katie & Max xxx

p.s - In the photos, Max at the swing park yesterday.