Blog Challenge my child 101

OK callenged by the CdLS group to blog facts about my child...as we have children with more than just CdLS this is going to be a quick run down on each! hmmm was it easier to find facts you may not know about me than about my kids...decided I talk about them far too much...not much is a surprise really.

ok Jonathan, my beautiful bown eyed baby boy with the lopsided grin will be 18 in just two weeks time..my how time flies!

Jonathan came to us in october 1990 aged just 6 1/2 months a Healthy baby boy with Down Syndrome. Oh my goodness I am sure most of you now know how wrong the healthy bit was...but what a lot of hurdles our boy has overcome.

At 1 year old Jonathan underwent major heart surgery from which he was given a 3% chance of surviving. There have been so many episodes in Jonathan's life that led us to doubt we would ever be celebrating his 18th Birthday with him.

Jonathan loves music, drums, guitar and saxaphone are his favourites, he plays Drums and Guitar but dos not have the puff for a saxaphone.

Jonathan is very partial to Abba and Spice Girls music, he listens to Abba at night to go to sleep to.

Jonathan also loves to colour and write, in the last couple of years he has mastered writing his own name and can copy simple text. He knows the letters of the alphabet and can write them down when asked and this is most often readable.

Jonathan is very short sighted and this last summer has lost the useful vision in his left eye, this is a big worry fo us as there is no reason to believe that the right eye will not suffer the same fate, he is closely mnitored by the oppthalmology department but the risk is always there. Jonathan's life is very dependant on visual cues. We pray his sight will not deteriorate further.

Jonathan has grown into a lovely young man, he is kind, polite and friendly. loves to help and is very good at washing up and emptying the dishwasher!

Ok Rosie!
WOW that tiny little scrap we brought home at 10 months of age is almost 16! When we first met the adoption agency medical advisor we were told tha Rosie had a rare syndrome, she was very hairy, very tiny, had no useful vision or hearing, would never respond to us would never walk or talk and really we were loking at caring for her until she died...this could be before her first birthday but would deffinately be before she reached 5.

We met Rosie for the first time later that day. Yes she was tiny and she had an incredible amount of hair. She also nearly jumped off her foster carers lap when David spoke...ahaha! not deaf then! Sat on my lap with her back to my chest she tracked her foster carer across he room...so there goes the thought of blindness!
A little rough and tumble with her brother to be, Jonathan and she gave a throaty chuckle and a grin that split her face in two! so much for not responding,

Rosie has continued to prove the profesionals wrong from that day forth.
Rosie walked the week before her 5th birthday, she has nver mastered any speech but is very good at communicating, he majority of people she comes into contact with who are not profesionally involved in her care are able to understand her wants with very little difficulty. Of course the profesionals prefer to believe she has no communication skills. We know that they have more learning difficulties than Rosie so leave them to their folly these days,

Rosie has many health issues, in her early years chest problems were the worst of these. pneumnia was her near constant companion. however we have far more problems now with her epilepsy. This seems to be such a multi headed monster I despair of ever getting it under control for long. We seem to have found a drug combination that is helping and we have the best control we have had for a long time but our hold is slipping and this weekend we have seen the monster poking his nose out again.
Rosie also has problems with periphral neuropathy, altered pain sensations in her hands and feet, she will not tolerate shoes and we now understand why, they hurt! School like to insist she wears them we insist she is not forced to do so! It is a battle we have fought almost consatnatly since sh started school. Rosie has sufered some horrible sores on her feet from wearing shoes but has rarely hurt herself without them. Whilst in our care she wears shoes almost never, she walks in the summer where and when she chooses on all sorts of ground and has never had any injury from so doing. Schools have forced her to wear shoes and he has had injuries that have needed hospital treatment through being made to wear shoes! Our little girl loves to rewrite the book on good practice!
When she is well and the epilepsy is at bay Rosie is a mischievous, loveable, happy young lady. She is adicted to Duplo bricks and carries a basket of them around with her. She loves to collect other interesting items to pop into her basket but we have learnt to intervene with her collection before it gets too large. Once we get to the point of things falling out the stress of keeping everything with her gets too much for her to cope with and we lose conrol of the immense frustration that can escalate into horrendous self-injuring explosions of behavour.

Rosie loves dressing up, loves girly femenine clothes and loves to go girlie shopping. unfortunately her post puberty shape does not lend itself to easy fashion choices. We struggle to keep her looking beautful with current fashion trends....oh how I wish I could handle a needle and thread as well as my dear friend Tia.


Joshua. Joshua is he eldest of our two home grown chldren. he is a bright intelligent 11 year old. he loves music and is desperately searching for a violin teacher to continue his violin lessons, hopefully once he starts secondary school in Spetember he will once again have that option.
Joshua excells in mathematics and alhough able he does struggle with the discipline of litrature. he does not enjoy reading for pleasure but reading for knowlege does interest him more. he can spell very well and has some good ideas but tends to rush his thoughts and not check back. Hopefully maturity will aid those skills.
Joshua is severely myopic and his visual problems do cause him some difficulties with spacial awareness and he has no periphral vision. this makes his interest in sports very dificult for him. he enjoys cricket though and hpefully once the new season starts he will be able to continue with this nterest. he also loves archery and we are hoping to enable Joshua, Christina and Dad to follow that more actively in the summer.
Christina the younger home grown one. Christina is a loving little girl who trys too hard to be grown up and the boss. If only she could sit back and enjoy being younger and accept other peoples decisions little she would lead a much happier life. unfortunately christina has a very srong sense of what is right and if she feels something is not right she will argue the point to death. This does not alway sit very comfortably with others, particularly her slightly older friends, her brother and her Dad! However if someone else is upset or in trouble or in need Christina is often the first on the scene to help. Christina loves to be with the very young children, she loves to be caring and helping and cuddling little people! she does find it hard to accept that todlers are not necesarily babies. Allowing them to do things themselves does not come easily to poor Christina and she feels badly hurt when this is pointed out to her. She is a very forgiving prson though and once the misuderstandings are sorted she is ready to carry on as before with adults and children alike. Unfortunately she is now reaching the age where her peers are not always so forgiving and she finds is hard to deal with children who bear a grudge!

And so to Eve. At 4 years old our baby is growing up...she is very aware of what she likes and doesnt. She is in love with the Characters of Winnie the Pooh particularly Eeyore... Eve loves preschool but sadly her one to one left suddenly last week so we are not sure what will happen here. Eve is learning to use her walker and the video I was trying to upload the other day was her walking across her room. I will try and do that again soon.
Eve lost he abiliy to swallow jut over a year ago and is totally tube fed now, he also has some very difficult problems with her saliva and we are trialling different drugs to cope with this problem. It is quite significant as i does cause a problem with her breathing...this is a function that Eve seems to think is optional.
Eve has a natural sister and birth family who love her dearly and with whom she has contact. This is a delight for us but we acknowledge the pain it causes them. Eve is aware of her sister and loves it when we do manage to get together. Eve loves girlie clothes and shoes particular pretty dresses nd fancy footwear...she is very proud today as she has new shoes to show off when her siblings arrive home.
and so that is some facts about our children...maybe not 101 I could have bored people quite significanly with that!

so if you are reading this and have a blog...go on tell us some facts about your children.