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