Things have been a bit up and down lately. Our eldest is still doing well and his eating is coming on brilliantly. I was so excited last night as he tried some rice for the first time ever! He says he liked it in between 2 crisps so that's what he had for dinner. It may not sound like the most healthy dinner but I was so happy as it was a real sign of progress. He has come so far and is really trying, bless him.
Blogs
Ben on parenteral nutrition and where do we go from here
Submitted by helenb8man on Thu, 03/11/2010 - 11:27.It's been a long time since I blogged and a hell of a lot has happened. Ben went into Great Ormond Street hospital in november for a trial of modular feeding. To cut a very long story short it was a complete failure. We were discharged on the friday and by the monday he was in such a bad state, hysterical with pain that we were admitted to our local hospital for 2 weeks for gut rest and to try and restart feeding him.
PEG and rucksack
Submitted by sunshine on Mon, 03/01/2010 - 19:32.Hi all
Nephew (aged 4 yrs) has a tube inserted into his jejuodenum (wrong spelling), housebound because of feeds. I have heard there is a rucksack that allows you to be portable (he starts scholl in sept) - anyone had expereince of these - where available
Ruby
A new year a new start you must be joking!!!!!
Submitted by shell74 on Mon, 03/01/2010 - 09:58.
Well as I sat in my parents house on new years eve with my husband Ste, and our three children and my parents, the clock struck 12 and I raised my glass of champagne and said "the only hospital i'll see in2010 is for appointments only" two days later where was I in hospital.
Hypermobility and EGID
Submitted by Kitty on Mon, 02/22/2010 - 21:47.I took my boys for a physio assessment today as they've had frequent joint pain in the legs for a long time. Sometimes they complain when active e.g walking, running but sometimes they complain through the night. Our youngest gets it worst and can be upset for hours at night.
Anyway, the physio said both boys are hypermobile and need physiotherapy and hydrotherapy. They also need arch supports in their shoes. She recommend bike rides and swimming but not high impact sports. She said the aching and pain will be worse after excercise and growth spurts.
Interesting video clip
Submitted by Margaret on Mon, 02/22/2010 - 16:03.This video clip explains the true reasons behind childhood obesity and the rise of chronic illnesses, and what to do about it.
Special Needs Holiday Centre
Submitted by Andy Mahoney on Fri, 01/29/2010 - 18:14.Hi
I am looking for some advice and help.
I operate special needs school transport and take over 600 special needs children to school on a daily basis. A mother whose child we have taken to Stevenage for the past 6 years has repeatedly asked me if I know of a special needs holiday facility in Spain or Portugal. Her daughter needs a hoist to and from her wheelchair to bed and the swimming pool. I over a period of time have looked and looked to no avail.
Healthy eating
Submitted by Margaret on Sun, 01/10/2010 - 18:57.Out of concern to ensure that my family stay healthy and that I feed them correctly, over the past year I have read a number of books on the subject of healthy eating. I have been shocked to discover that the government and food standards agency are misleading us. It seems that we should be eating the complete opposite of what we are being told is healthy for us. Our levels of obesity, diabetes, heart disease, cancer and other chronic illnesses are all rising steadily - because we eat the wrong food.
It's going well!!!
Submitted by Kitty on Sat, 01/09/2010 - 20:33.It's been about 6-7 weeks since we were at Great Ormond Street and they gave us tips on how to help our 3 year old son get back to eating and being less scared of choking. We didn't see any improvement for the first month but things have definitely started to improve now. He was screaming hysterically about food and refusing to eat/drink after a serious of bad chokes.
We've just been to Great Ormond Street
Submitted by Kitty on Sun, 11/22/2009 - 16:58.We've just had our review at GOSH and it was a mix of good and bad. We saw the consultant, dietician and feeding specialist and all 3 were really pleased with the progress of our eldest son. They feel his EGID is definitely improving and they want to try him on some egg/soya (he must stay dairy-free though) and we can even experiment with stopping medications after the Spring. This is great news!


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