Its been a while.....

Life has been hectic as usual for Shay. The last couple of months Shay has enjoyed full health.
So far he has had 14 transfusions and was having these every six weeks until recently. For some unknown reason he has dropped back down to 4 weekly transfusions. Shay has recently had a full cardiac review and his clinical status remains stable. His heart sounds were normal with a systolic murmur, which is an extra sound in between the 1st and 2nd heart beat. At this stage it is nothing to worry about.
Shay has got his audiology, physiotherapy, speech therapy and eyesight reviews shortly, the month of August is going to be a busy time with appointments happening each week.
Shay still doesn't eat very much and it is a battle each day to get him to eat even the smallest of portions. We are working very closely with the dietitian and he is now on 'PaediaSure plus juce' (without the i)which is 300 calories per 200ml bottle. The price of these are day light robbery at over £4 a bottle on the Internet. Shay needs to drink two of these a day and we are pleased to say we have found something he actually likes.

Shay has just come back from a fun filled holiday in Spain. He was in the water every single day and can now swim with his arm bands on no matter how deep the water is. Shay was out there watching the world cup final along with everyone else and it was a special moment when Spain won. All he keeps saying now is 'Espana, Espana'. He coped remarkably well with the heat even though it hit the 38 mark. In total Shay was in Spain for 9 days which was enough for our little fella and he looked glad to be home (pictures to come soon).

Shay had a very special day on Thursday. At the moment he has a fascination with helicopters. So it was arranged to take him into London to see the police helicopters. Shay was very excited when we told him he was going to see them and kept saying 2, 8, 10 blast off! He was even using his hands to show us how the blades on the helicopter goes round. When he was on the airfield he was so excited to actually see the real helicopters. His eyes lit up when he saw the engines being worked on and even more when he saw all the tools on the workbench to fix the engines. Shay wanted to have his picture taken with the engine and the workbench. He was given a badge for his coat and stickers to remember his very special day. Now he thinks that every helicopter he sees in the sky are the ones at the airfield. It's great to see Shay happy and excited he really does deserve the best.

Here are 2 pictures of shay waiting for nursery school to open on his first week. The pictures I think say all what needs saying. These are days we never thought would arrive.

Home again

Shay at last had his blood transfusion today without any problems. We have put in an official complaint with the hospital about the system and process of ordering the blood. This appears to fall to one person when the results are telephoned through to the ward, the doctor on duty. This one person is responsible for ordering the correct blood and ensuring also that they actually check Shay's file for what exactly is needed. Somewhere along the line the process of ordering is failing and this is having an impact on the standard of care Shay receives. I dread the future when something serious might happen, how will the hospital cope when such little things are going wrong now.

12th Blood Transfusion

Shay was up bright and early this morning ready to go into hospital for his transfusion.He was in dire need of a lay in but his health must come first. He has been complaining of his legs hurting all week and his diet at the moment is extremely poor. Shay has not walked very far this week and is always asking to be picked up or to have his buggy.
Yet again our local hospital has completely ruined his day by not having his blood ready. Someone along the line at the hospital has seriously made a mistake of not ordering irradiated blood!! After a year and a half how can they still be getting things wrong you have to ask yourself. It is there in black and white in his notes exactly what blood he needs.
So now Shay is waiting around until 3pm for his blood to be ready. Maybe this does not seem to be much of a problem; but by the time he is hooked up Shay will be lucky to be home by 8pm. Shay suffers greatly from tiredness and this is why we ask for morning appointments in the first place. Do Doctors actually look at what is wrong with him? We spend most of our time educating people on mitochondrial disease and most go out of their way to make things as easy as possible for Shay. Hopefully things will go more smoothly once Shay is at the hospital, we will just have to wait and see.

HAPPY BIRTHDAY SHAY!!!

What a fab day it has been today! Shay is 3 years old now and he has enjoyed a full weekend with a birthday party on Saturday. This year Shay knew it was his birthday. He was getting very excited knowing it was very near and kept saying 'Me birthday'. Even though it was his birthday today, Shay still had to have his blood taken. It's a shame this fell on such a special day for him. Saying this when he saw not one but three nurses turn up at the door with helium happy birthday balloons for him, his face said it all. They especially went out of their way for Shay and it really made his day.
Normally Shay has a transfusion every 6 weeks. This time he is a week under and will be having a transfusion this week. It is very disappointing as we thought maybe his blood lines were improving but we will just have to wait and see.

Results:
Hb - 8.3
Platelets - 97
Wbc - 3.21
Neutrophills - 0.47

A very brave boy!

Shay at last had his long awaited ECG yesterday. We haven't had the results back officially from the doctor, but it seems everything is as it should be. As the pictures show, Shay yet again proved what a fantastic boy he is who is always putting up with so much. Lately he has been asking if he is 'all better' which is heartbreaking to hear. As each week passes he is becoming more aware of how he is feeling and knows when he needs the nurse to come and access his port. Shay is back on antibiotics today as his chest is crackly again and he has started coughing. Hopefully we have caught it early enough before anything really takes a hold of him.