Diary - April 2008
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“Life is full of beauty. Notice it. Notice the bumble bee, the small child, and the smiling faces. Smell the rain, and feel the wind. Live your life to the fullest potential, and fight for your dreams.” Ashley Smith - Author |
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April 2008 Diary Updates Hi everyone, it's been busy the last two months for us here in the Connerty household. Alex albeit being ill with tonsillitis and flu for the last 4 weeks and being on 4 different types of anti-biotic's is coming along in leaps and bounds. For someone who is snotty and coughing constantly his energy levels are unbelievable, at one point early last week we were ready to take him to hospital, he had a temperature of 38.7 degrees. he was having trouble breathing due to being congested and needed oxygen every now and again to give him a boost and a rest; and after about 20 minutes, well you wouldn't think he had anything wrong him! Everyday he's getting stronger and stronger, he's talking even more (well child's talk) but is starting to say his own name (Ack). I will give more of an update on Alex later on in this post as I want to explain what has been going on in all our lives at the moment. Well the last two months have chaotic (I think chaotic is our middle name). When I'm not in work or Sue has spare time in between being a father/mother to all our children every single bit of free time is spent on the Charity work we do for the Foundation that we set up to help the other children affected with MOPDII here the UK. Our main aim has been trying to raise in the region of £12,000.00 to help finance a trip to America for the other families and their children to visit the American families and their children during the LPA convention in Detroit. This is the same convention we attended last year and believe me these families will benefit totally. They will also get the chance to meet the Dr Bober, Dr McKenzie and the rest of the gang from Nemours. These are the experts that we saw last year and who helped us tremendously. There will be other Doctors attending who will also provide vital information, especially Dr Reidy and orthodontist), he is one outstanding doctor and has provided vital information regarding dentures and teeth in general and also has made several set of dentures for some of the young children/adults in America. We have raised over £7,000.00 via pledges, individual donations and events but still need to raise £5,000.00. If you would like to help and donate the charity appeal to help fund this trip please visit the foundation site by clicking here. So many people helped to try to make this trip a reality but one person I really want to thank from the bottom of my heart is a local liverpool mum called Amanda Craven. Amanda took on a personal challenge of a life-time yesterday and also done it on behalf of the "Walking With Giants Foundation". For the last 12 weeks she has been training to take part in a Horse Race at the Grand National Event. This race is called the People's Race, a charity event that allows ordinary people (well they have to have some riding experience) to race at the Greatest Racing event in the world. Amanda and 9 other brave competitors where picked from 2,500 applications to train for the chance to win £50,000.00 for their nominated charity. The 10 finalists had already won £5,000.00 for their charity by being selected for the race but yesterday was one emotional event for all of us at the foundation and for all her family friends and supporters. Amanda did not win the race, but I can tell you that yesterday I saw one brave individual give it her utmost best to win it. From the start she led the pack even at one time by up to four lengths but the horse (Inspirina) just couldn't hang on there. She finished fourth! This was the strategy that trainer the famous "Richard Ford" to follow, just get out their and lead from the start and to cue Amanda followed the advice. As Amanda was getting interviewed after the race I waited by the Jockey's Weighing Room, all emotional as I wanted to say "I'm so proud of you and thank you so much for what you have done". As Amanda came towards me and before I could say what I had been preparing for the last 20 minutes, she uttered the words sorry John and the look in her eye said it all. This blew me away and with a quivering lip I replied you have nothing to be sorry for, we're all proud of you for what she had accomplished, one for herself, what she did was one hell of a feat and for me, well she has helped 3 of the families with a big part of the cost of their trip to America. In addition to this she has helped the Foundation become a registered charity along with raising the awareness of the work we are trying to do locally, regionally and nationally! Well Mandy, there is never going to be a bigger giant to the children and their families and this giant is you!! Your are truly a star and your name will always be associated with the "Walking with Giants Foundation" for the rest of it's history!! Thank you so so much! Well more about Alex: Walking Hey the little fella is trying to run now, well speed walk and when he's being mischievious and we tell off; and ask him to come to us, he's off like the clappers. it's a funny sight to see and I will get a video uploaded for you to see this! He's not falling to much and becoming more steadier and stable every day. One thing we have noticed over the last couple of months is that if he outside walking with us and there is a windy, it blows him down or he cannot walk, it's sad for us to see this but we count our blessings that it only windy here in the UK 300 days a year! Joking aside it's something that we will and he will have to get use to, it's probably one of the hurdles that he may not be able to overcome, but again jokingly, he will be like his dad and use it as an excuse from having to walk any long or short journeys! I have learn to ask his mum to give him a lift in the car to get around! (psssst - one of my failures in life is I cannot drive - no i can drive superbly - just cannot find a decent examiner to give me a pass - I've failed 5 times! - Sue keeps telling me to sign up for one of these guaranteed pass courses, otherwise known as a 2 week crash course - the word crash and me in a car does not fare well, so I will keep to walking, public transport or more often my own private taxi - Love you loads Mrs C. Talking I said earlier that Alex is making a lot more sounds, well you cannot shut him and sometimes drives us crazy when he's having a conversation with you. He knows what he's saying and wanting. The frustration comes when he's all hyper and now that he's a little bit more intelligent where having trouble keeping up with him, especially with some of the new sounds when he's trying to explain what he wants or trying to make us understand. We still try sign language with him but like normal he has none of it. when we do sit down and practice with him, he telling us in his own way stop making those stupid hand signals mum and dad, they don't make sense. A lovely moment occurred a couple of weeks ago when I took him to bed, I read a Balamory book to him and then watched a Balamory DVD - this is a ritual that he demands (in a nice way). When he's going off, i just talk to him and tell him how much I love him and I swear he said love you dad - it was baby talk but the sounding was to the phrase. I just hugged him and we both fell asleep. Him leaning on his side with his head on my chest and his arm stretched out over me! I love this time as it dad and lad time, plus it gives sue that well earned break for a couple of hours anyway! Eating No major day to day improvements here but there was one episode that did show us that he can eat (so to speak). This happened whist at pre-school nursery (I will tell you about nursery indepthly later). One day during his meal time for the rest of the children, Sue had forgotten to bring his feeding tube with her, she was suppose to bring it along with his feed to show the staff how to feed him. Anyway this day during lunch, Alex was hungary, all the other children were happily tucking into Spaghetti Bolognaise and the staff put a bowl out for him to try. Well he watched the other children, picked his spoon up, and started to eat some of the sauce, he had a good try and his face was covered in it, Sue and the staff was ecstatic. The following couple of days we decided to delay his lunch time feed and put some food in a bowl for him and guess what??? No chance, the little fella was having nothing of it! He hasn't been to nursery for a couple of weeks due to him being ill, but the staff are going to try! I'm a great believer in how young children learn social skills and playing by attending school early on in first years. I believe it comes from our animal instincts (or mammal instincts to be correct). We have all heard the "Stop aping about". Well it comes from our so called ancestors - the apes/monkeys. Even present day young apes/monkeys learn about things by mimicking the other in thier group, well I believe this is what all young children do and it's a major part of thier development, so Alex here's dad telling you watch those other children and learn learn learn! I going to regret this one day but for now it the best for him! - just hope he doesn't come home one day sniffing his backside and eating the contents of his nappy! Height No increases here, but he's starting to realise things are out of his reach - but he will try and stand on his tiptoes and have a go of geeting the things he shouldn't which is another story - which I will leave for another day!. Pre School Nursery Well this is the biggest achievement in his life, for over two months Alex and Sue has been attending pre-school nursery! Sue has been attending so that she can educate the staff on his needs but tomorrow will be his first official solo half day! Alex loves nursery and more so the other children. When the day comes for him to attend nursery he gets all excited and when it comes to him having to leave for the day, he's more or less gets upset and tell Sue in his own little way that he does want to leave! The way he tells Sue is by motioning with his hand in a bye bye way - which means leave me alone i'm happy where I'm or you go mum or plainly it means go away! Since attending 2 half days a week, Alex has really come on. It's a credit to all the staff there and also Angie the owner. Even the other children are made up when they see Alex come in to the room! He has come on and it makes us so happy to know and see that he can cope with mainstream boys, girls and school and more so they accept him! I will update you all on this subject more often as this is where I think Alex life is going to change and more so will indicate to us as parents if these hurdles in his life exists! I'm going to leave it at this for the moment and again I do apologise for not writing more often but like normal all our available time is spent raising the profile of the condition via the Foundations work along with raising much needed funds. Again please help if you can, visit www.walkingwithgiants.org and see if you think a donation is worthy. Please note that Alex does not benefit from the foundation! Well he will, not financially but he will get to meet individuals llike himself on a regulare basis via our own savings or through the people who donate money to his trust fund! John (Alex's Dad). Well this must be a shock to the visitors who come here often, two updates in one month. Well it;s just going to be a brief one, at present both Alex and I are unwell. Alex has been fighting off flu and |
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