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