Another Week

It seems almost unbelievable that the ned of next week marks the end of another year of school. What an evenful year!
Eve didnt start school in September and so far we do not have a fully functioning Statemen t of Special Edcuational needs for her. Looking back at the original final statement it could have been written about another child. Seeing it in black and white is quite a shock now. There is little resemblance to the child we see now. She was let down badly in those first few weeks of the school year and lost out on a time with mainstream peers that she could have really enjoyed and gained from. Now we have a placement at the Special School with integration into the local village school for out of class activities...today we put that to the test and joined them at the Zoo. It was a great day and gave Eve some fantastic time with her friends from preschool she has seen very rarely since last June. The older kids all included her in the goings on as they passed by in their excitement. She was just another child in the group.

Christina has almost completed her last year in primary school. It has been a difficult year for Christina in many ways. The pressures of Eve's unstable health, several hospital stays for Rosie, times when I have been away with the girls in hospital and a couple of very stressful periods for Christina when she had to stay elsewhere because I had to be away with Eve. On top of her anxiety over health issues and instability at home I do believe Hormones are on the rampage as well as general growing up and exerting her independance on the world. All of this has left her quite emotional and tearful/angry/sad and hyperexcitable all at once and in cycles. Despite all of this she remains a very popeular child at school. I witnessed that for myself today at the Zoo. I also sadly witnessed what she often relates to me in an offhand manner, her teacher this year really does seem to have a problem with Christina...I am sure clash of personalities has a lot to do with it but I was also concerned as a parent and glad that Christina is moving on.

Joshua has completed his first year in Secondary School. Again it has been a tough year for him. THe problems at home have impacted on him in a different way, he is a much quieter child, keeps troubles close to his chest and then gets upset totally out of the blue. His frustration has led to some angry outbursts at totally inappropriate moments and in inappropriate ways, it has been a challenge to meet this with love and compassion rather than our own anger.
Joshua struggled with the transition to secondary he found it hard to settle in and make friends and this is still an ongoing issue. He finds it hard to trust people and is not good at making friends. It appeaered he had made one solid friendship but today that appears to be shaken. I really dont know how to support him through this and try and encourage him to make friends wisely and to be a good friend too.

Rosie has plodded on through the year, problems with her gastrostomy and her throat narrowing and more gastrostomy problems and apparantly more swallowing problems. On top of the epilepsy issues which never seem to be really controlled. She has moved along through the Puberty steps this year and is still not really through it! Her regular episodes of nonconvulsive epilepsy that threw her into a frenzy each month seem to have been rocked from their regularlity over the last two months. We are hoping that may settle again.

Jonathan will finish school next Friday! Goodness where did those years go. Our tiny fragile baby undergoing massive heart surgery is now a tall slim quite Handsome young man of 19. Leaving school and hopefully moving on to college. He has just come home with his Walk Tall Award from the Spalding Lions today. Triumphing over diversity! Yes I think that describes my young man.

And so we march toward the long summer holidays. This week saw us over at Sheffield Children's Hospital again....it was a bit of a trek! Tom Tom broke down! Lost all connection to the sattelites and refused to tell us where to go! So we battled on and eventually after many hours of circling every road in Sheffield City Centre in every permisable direction.....we arrived at Sheffield Children's Hospital 4 hours after leaving home! Thankfully we had planned on shopping before hand so were not late for the appointment but we didnt manage any shopping other than in the hospital canteen! Coffee was definitely top of the list!

At least it wasnt a case of all those hours in the car for 2 minutes with the doctor, we did get a good 3/4 of an hour. We did also get a label!

Eve now has the formal label of Leigh Disease. We dont have a genetic cause identified, nor do we know the Mitochondrial complexes involved in causing the syndrome. But we have a name, it is one we suspected for a long time but decided if no one had come up with it maybe it wasnt so bad.

N ow it is official and we learn to cope and live her life with her in the hear and now.

The united Mitochondrial Disease Foundation has the best most accurate information....there is a lot of rubbish out there on the net.

Mitoaction.org is also a good source of information and their Forum is a lifeline of parents and adult's with Mito...it is good to know you are not alone.

Of Course Friends on Specialkidsintheuk.org have also been amazingly supportive and helpful. You all klnow who you are, thank you for being there.

The otehr thing we learnt at the appointment is that Eve has abnormal breathing patterns, they wont as yet be helped by invasive interventions but this remains a revisting place as it is likely they will get worse as time goes on.
Her sleep wake cycle is also abnormal and concerning, this is being investigated further as it is likely her Myoclonus is one of the triggers for this.
We are going to trial the higher dose of COQ10 having been on the low dose for four months with no change we will now try 10 X the dose and see if that helps.

We arrived home last evening at 7.15 11 hours after leaving! It was a long and stressful day.

So today's trip to the Zoo was a welcome break from life in general. We were blessed with the treat of seeing an Alpaca give birth, Something you cannot plan for at all, we just happened to be in the right place at the right time! It was amazing! We even had lunch and came back just in time to see the baby stumble to his faltering feet an hour and half later! David managed to catch both on camera!

Tomorrow is annual review time! Starting at 9.30. probably going on till lunch time. I am not prepared and it will flow how it will flow. Totally in God's hands as I dont have any spare capacity.

We now have the 7 weeks of holidays looming before us. So looking forward to the CdLS conference looking forward to meeting my friend Jenny! Having communicated on the internet for so many years actually meeting her is going to be amazing!

So it is now bed time. Time to turn off the mind and actually sleep! Please Rosie beyond 5????maybe even to 6????? would be so good!

Good Night!