As predicted Shay is enjoying full health and back to his normal self again. He is a quirky little boy who has his own little ways and habits now. If routine isn't followed in the house he will soon put you right. Even when he uses the potty everyone has to look and cheer, then he has this ritual of saying goodbye to whatever is in the pot! Every night without fail he asks to have Vick's on his chest and back. Everything has to be done in the correct order, otherwise he creates havoc.
Now March is nearly upon us he knows his birthday is very near. Looking at him it is hard to believe he will be 3 at the end of the month. What a magical birthday that will be for him and such a great milestone with his health.
About Me
- Shay
- London, United Kingdom
- Welcome to Shay's story and thank you for taking the time to find out how Shay is doing. It is a place to share our hopes, sadness and the happy times that our little man has. Shay in April 2008 was diagnosed with Pearson's Syndrome a Mitochondrial disease with no cure. Pearson syndrome is very rare, less than a hundred cases have been reported worldwide. It characteristically present in early infancy with pallor, failure to thrive, pancytopenia and diarrhoea. Additional manifestations often include progressive external ophthalmoplegia, proximal myopathy with weakness, and neurologic disturbances. Multiple organ involvement is quite variable. Most infants die before age 3, often due to unremitting metabolic acidosis, infection, or liver failure. Those few individuals who can be medically supported through infancy may experience a full recovery of marrow and pancreatic function. These children eventually undergo a transformation from Pearson's syndrome to Kearns-Sayre syndrome with the development of ptosis, incoordination, mental retardation and episodic coma. Life as we use to know it I cannot remember. We have to live in hope that a miracle will happen for our son.
Sunday, 28 February 2010
Friday, 19 February 2010
11th Transfusion
Shay has quickly gone from being healthy to being poorly again. He has an eye infection in both eyes and his cough is back so he is on a course of antibiotics, eye ointment and his inhalers.
He has spent a rough day in hospital today having his transfusion. All he wanted to do was be at home and sleep. His eyes are really hurting him at the moment and they are constantly streaming which is irritating them further. Shay has been fantastic today, especially with the nurses. Hopefully Shay will have a quick recovery and get back to the cheeky, happy boy we know.
Hb - 8
Platelets - 95
Neutrophills - 0.95
WBC - 2.91
He has spent a rough day in hospital today having his transfusion. All he wanted to do was be at home and sleep. His eyes are really hurting him at the moment and they are constantly streaming which is irritating them further. Shay has been fantastic today, especially with the nurses. Hopefully Shay will have a quick recovery and get back to the cheeky, happy boy we know.
Hb - 8
Platelets - 95
Neutrophills - 0.95
WBC - 2.91
Wednesday, 17 February 2010
Can't wait for Spring
Since January Shay has been very well. It has been a hard winter for Shay as the cold and his mitochondrial don’t do too well together. He is feeling more and more tired since winter and we can’t wait for the spring to bring some warmer weather for him. The most significant sign of Shay being poorly now is his inability to walk far when we are outside. If Shay is out and about you will always see him in arms or in his pushchair. He can crawl up the stairs (slightly out of breath) but if he stops midway and turns he falls down. Coming down the stairs Shay still cannot master, this is very dangerous for him as he has had a couple of accidents just from the bottom two steps.
He is now having transfusions every 6 weeks instead of the normal 4. His Metabolic doctor in GOSH did say to us that the mitochondrial does seem to be clearing from Shay’s blood but cannot tell us where or when it will affect other parts of Shay’s body. She is really pleased with how Shay is coming on especially in his development. His behaviour is absolutely outstanding for his age and his health. Very soon Shay will be having another ECG and his pancreas checked for signs of failure.
Shay’s sensitivity with his eyes is back and now he will ask for the curtains to be shut in the house. We only have another couple of weeks until he has another round of tests on his eyes at GOSH.
We are pleased to say Shay is now out of nappies. As you all know Pearson’s affects the child’s development and some parents don’t see their children crawling, walking, talking and in some cases are fed by a G-tube. At the beginning of the half-term holidays I told Shay ‘Mummy forgot to buy nappies’ (I had 140 nappies hidden!). As usual Shay again has amazed us, 5 days later he is toileting himself independently on the potty and this is number 1 & 2’s. At night he still has a nappy which he is not happy with and will try and kick his way free when we are getting him dressed for bed.
Shay is having his normal blood tests tomorrow as he has woken up extremely tired and irritable today. It’s very hard now to know without a test whether he needs blood or it’s just the mitochondrial in his body that is making him pale and tired.
He is now having transfusions every 6 weeks instead of the normal 4. His Metabolic doctor in GOSH did say to us that the mitochondrial does seem to be clearing from Shay’s blood but cannot tell us where or when it will affect other parts of Shay’s body. She is really pleased with how Shay is coming on especially in his development. His behaviour is absolutely outstanding for his age and his health. Very soon Shay will be having another ECG and his pancreas checked for signs of failure.
Shay’s sensitivity with his eyes is back and now he will ask for the curtains to be shut in the house. We only have another couple of weeks until he has another round of tests on his eyes at GOSH.
We are pleased to say Shay is now out of nappies. As you all know Pearson’s affects the child’s development and some parents don’t see their children crawling, walking, talking and in some cases are fed by a G-tube. At the beginning of the half-term holidays I told Shay ‘Mummy forgot to buy nappies’ (I had 140 nappies hidden!). As usual Shay again has amazed us, 5 days later he is toileting himself independently on the potty and this is number 1 & 2’s. At night he still has a nappy which he is not happy with and will try and kick his way free when we are getting him dressed for bed.
Shay is having his normal blood tests tomorrow as he has woken up extremely tired and irritable today. It’s very hard now to know without a test whether he needs blood or it’s just the mitochondrial in his body that is making him pale and tired.
Sunday, 10 January 2010
Transfusion No.10
Yesterday Shay had his 10th red cell transfusion. As usual he took it in his stride, the only thing he doesn't like is having his special cream put on his port. I think he can now link the cream up with having his port accessed, even though he shows no fear with the nurses.
As each week passes us by Shay's development is clearly changing. When telling him the nurse is going to come and see him, it's heartbreaking for us to hear his reply 'all better'. Even when he hurts himself he will say this and he looks at you waiting for an answer when he says all better.
Shay said his first 5 word sentence the other day which is fantastic, his speech is getting clearer and clearer all the time.
For Christmas Shay got given a doctors set. Well....I have lost count of the people he has done port operations on. Shay will lay his patient down on the floor (first he lays cushions out for them, our son is very considerate) and he will pretend to put a port into them. The funniest is that he has to put the Doctors glasses on that makes him look cross eyed.
We are seeing Shay's Metobolic Doctor in a couple of weeks so Shay will get a full health check. We also have a list of questions that we put together so hopefully more answers to our never ending questions.
Monday, 21 December 2009
Blood tests
Shay is becoming more aware of what is happening when he is having blood tests. It's very hard now to watch and to hold him when this is being done. As he gets older he is starting to become scared and panicky when the needle is coming towards his port. This does not hurt him as he has emla cream on the site but you can see in his face now he is scared.
His last transfusion was 4 weeks ago and his results are fantastic considering this. His HB 10.3, his neutrophills 1.19 the highest its been and his platelets 89. Our first thought was his marrow is starting to produce more healthy cells fantastic, this was quickly followed by panic. We cannot help but look more into the future it's no good burying our heads in the sand and ignoring facts. Shay's metabolic consultant did say that Shay's bone marrow would return to normal within 1 to 1 1/2 years but the defective DNA will accumulate elsewhere in Shay's organs causing more damage that unlike the bone marrow does not repair itself. All we can do now is to carry on with the blood tests to see what is happening and to be even more observant with our little man.
Shay is such a contented, happy little boy at the moment who I can't imagine being without. I love his hugs and kisses, the way he laughs when you tickle him brings you absolute pleasure. Even when he is being a rascal!! the other day I was putting the rubbish out and he quickly ran behind me banged the door and turned the key. Looking at him through the porch window laughing even made me laugh. It took alot of persuading to get him to turn the key to let me back in.
I would like to thank everyone who has supported Shay this year and especially all of the fund raising for our little boy. Shay's childminders Sally & Mick we would like to say thank you for all the money that you have donated to GOSH on Shay's behalf and the consideration and support you have shown our family. Simon and the team in West Hamstead who raised £2560 for GOSH a huge thank you from all of us. To everyone at the Murchu-Duiginn Irish dance school who raised a substantial amount of money to send Shay to Disneyland in Florida. The kindness you have shown to our family will always be remembered and we can't thank you enough, our memories will last forever. Also not forgetting people we don't even know who has sent in money to the Shay Murray fund account. People who don't know Shay have shown so much kindness this year to our family.
We would like to wish you all a very Happy Christmas and a prosperous new year.
His last transfusion was 4 weeks ago and his results are fantastic considering this. His HB 10.3, his neutrophills 1.19 the highest its been and his platelets 89. Our first thought was his marrow is starting to produce more healthy cells fantastic, this was quickly followed by panic. We cannot help but look more into the future it's no good burying our heads in the sand and ignoring facts. Shay's metabolic consultant did say that Shay's bone marrow would return to normal within 1 to 1 1/2 years but the defective DNA will accumulate elsewhere in Shay's organs causing more damage that unlike the bone marrow does not repair itself. All we can do now is to carry on with the blood tests to see what is happening and to be even more observant with our little man.
Shay is such a contented, happy little boy at the moment who I can't imagine being without. I love his hugs and kisses, the way he laughs when you tickle him brings you absolute pleasure. Even when he is being a rascal!! the other day I was putting the rubbish out and he quickly ran behind me banged the door and turned the key. Looking at him through the porch window laughing even made me laugh. It took alot of persuading to get him to turn the key to let me back in.
I would like to thank everyone who has supported Shay this year and especially all of the fund raising for our little boy. Shay's childminders Sally & Mick we would like to say thank you for all the money that you have donated to GOSH on Shay's behalf and the consideration and support you have shown our family. Simon and the team in West Hamstead who raised £2560 for GOSH a huge thank you from all of us. To everyone at the Murchu-Duiginn Irish dance school who raised a substantial amount of money to send Shay to Disneyland in Florida. The kindness you have shown to our family will always be remembered and we can't thank you enough, our memories will last forever. Also not forgetting people we don't even know who has sent in money to the Shay Murray fund account. People who don't know Shay have shown so much kindness this year to our family.
We would like to wish you all a very Happy Christmas and a prosperous new year.
Saturday, 12 December 2009
I'm a Celebrity!!!
What a fantastic day Shay has had at Chrissy's Irish Dancing class feis. Thanks to two dancers who spotted a celebrity just across the road and very quick thinking managed to get everyone out. The poor fella was going shopping and only stopping to fill up with petrol!! Within two minutes he was surrounded by all the dancers plus mums, nans and whoever else you can think of.
Gino from I'm a celebrity was kind enough to come and join everyone at the feis and even stayed to watch some Irish dancing. Gino was more than happy for me to take his picture with our little man and was kind enough to give me permission to publish it on Shay's blog. Absoultely Fantastico!!!!
Monday, 7 December 2009
A Happy Shay
Shay is in a good place at the moment and is feeling happy, contented and most importantly healthy. He has finished his course of inhalers and only needs them occasionally, his chest has cleared and he is no longer coughing.
He will be having another transfusion just before Christmas to ensure he stays well and healthy for the Xmas celebrations.
It's the first year that Shay now knows it's Christmas. He can point out Father Christmas to me and also a Christmas tree. When he sees toys he wants on the television he has started to copy Chrissy and will say 'Me me' especially when it's anything to do with construction and trains.
A little story that really made me laugh and cry at the same time. Chrissy was practising her Irish Dancing in the lounge and doing her walking exercises. Shay was watching her for about 10 minutes then decided to join in. Well I was shocked to say the least, he got up on his toes and started copying her.Shay did try crossing his feet but that was a bit much as he kept falling over. He was smiling at me and I have to say he made such an effort keeping his arms tucked in that he put his sister to shame. Shay has been around the dancing so long now that he can do cuts, points and even outs on command it is the most magical thing to see.
Shay's development is remarkable considering there are children out there with Pearson's syndrome that cannot walk, sit, talk and have to be tube fed. It's a horrific illness that takes even the slightest development away. So seeing Shay move on in his development gives us hope and we pray we can continue to see him develop and enjoy life to the fullest.
He will be having another transfusion just before Christmas to ensure he stays well and healthy for the Xmas celebrations.
It's the first year that Shay now knows it's Christmas. He can point out Father Christmas to me and also a Christmas tree. When he sees toys he wants on the television he has started to copy Chrissy and will say 'Me me' especially when it's anything to do with construction and trains.
A little story that really made me laugh and cry at the same time. Chrissy was practising her Irish Dancing in the lounge and doing her walking exercises. Shay was watching her for about 10 minutes then decided to join in. Well I was shocked to say the least, he got up on his toes and started copying her.Shay did try crossing his feet but that was a bit much as he kept falling over. He was smiling at me and I have to say he made such an effort keeping his arms tucked in that he put his sister to shame. Shay has been around the dancing so long now that he can do cuts, points and even outs on command it is the most magical thing to see.
Shay's development is remarkable considering there are children out there with Pearson's syndrome that cannot walk, sit, talk and have to be tube fed. It's a horrific illness that takes even the slightest development away. So seeing Shay move on in his development gives us hope and we pray we can continue to see him develop and enjoy life to the fullest.
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