Max at 4 years old!

Hi All,

Its been over 3 years since I last updated on here and its definitely about time I let everyone see how well max has been doing.

Max's milestones in short are;

Max learnt to eat with a MASSIVE thanks to Dr Markus Wilken who stayed with us during the last 2 weeks of October 2011.  It was absolutely amazing to have a once 100% tube fed little boy to one that took interest in food and drink.  It felt very weird at first to not tube feed Max at all (or give him water) but with the professional support of Markus it was the turning point Max needed. The 1st food he ate was corn on the cob, then straight after that 3 pots of yoghurt! Max absolutely thrived, tasting so may different foods, drinking & also starting to talk.
Max became a big brother.  On 13th March 2012 Max's baby sister, Lily Ann Dingwall was born.
Max had his gastrostomy closed!  Max had his gastrostomy button removed when Lily was around 8 week old.  A very momentous occasion in the sense that it was the final step in his tube feeding journey but that in reality actually consisted of Mr Driver literally deflating the balloon & throwing the g-tube into the sink!  He then covered the remaining hole with a bit of cotton wool & tape - done!
Max went to America!  In August 2012 we went on a family holiday to the States for 3 weeks.  Max had an absolute ball, sightseeing aboard the open top bus in San Francisco, staying in Napa with family, enjoying the hotel & pool in Lake Tahoe & finally meeting cousin Sydney at Disneyland in Anaheim.  Despite all the sunshine he still came back as pale skinned!
Max was finally potty trained.  After a very long process of potty training Max finally used the toilet!
Max had surgery to close his gastrostomy.  Max had continued to have a 'leaky button' since his g-tube was removed so in February 2013 it was decided he need a small operation to close it.  Max was extremely brave & although needed a general anaesthetic was out the same day.
We moved house.  In April of 2013 we moved house! Max thought it was great because "there was so much more room" and that he finally got a bunk bed, he also manages to make loads more mess!
Max started pre-school.  Max started at Broomhill Primary School Nursery in August 2013.  I cant say he always wants to go in but he is certainly enjoying the routine & activities at pre-school & has made some great friends.
Max starred as a shepherd in his 1st nativity.  Max may not have sung the songs (until we walked back home to the house!) but did take part in the school nativity as a shepherd.  A very handsome shepherd I may add ;P
Max started to ski.  Max started to ski in January of this year at the dry ski slope & is doing really well.  He is now on his 4th lesson & can confidently go up the lift & down the nursery slopes on his own.

Max continues to do amazingly well given his CDH & early arrival.  He is on no medications & is now only seen by his surgeon annually. 

His is a typical 4 year old boy who pushes the boundaries (& his sister!) but is so much fun to be around.

Katie x

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