Birthday Boy!

Shay was so excited as his birthday approached as he knew he was going to be four and he looks on this age as being a 'big boy'. He knew exactly what he wanted for his birthday; a motorbike, superman outfit and a skateboard! He will probably crash countless times, end up with a load of bruises but this is what it's all about, him having a very special 4th birthday.
It started as a very busy day for Shay. He was in GOSH nearly all day having his eyes tested. He is such a fantastic boy who gets pulled and prodded about until he is so tired that his eyes are closing with exhaustion. We are estatic to say there has been no changes with his eyes in the last six months. The information going into his eyes becomes very muddled but somehow it rearranges itself when it comes out the
other side as far as we are aware this causes him no problems at the moment.
After the hospital Shay wanted to go to Pizza Hut, he throughly enjoyed himself even though a mouse would have eaten more than him. Shay had a very long day and it took him two days to recover from a very busy day.

A special day out

I really need to be more organised and try at least manage to keep my little mans blog up to date! But life has been a little more than hectic to say the least. Shay had a fantastic 4th birthday and is now the very proud owner of a motorbike just like his Daddy. Of course he is exempt from any speeding or road traffic offences now :0)
A couple of days before his birthday Shay had a brillant day out at Camden town hall with Daddy. On the way he stopped to see his 'best friend' (as Shay calls him) Paddy Hughes. They enjoyed a late celebration in the pub for St Patricks day as you can see by the hats in the picture. After visiting, Shay and Dad both made their way to the town hall so Shay could watch his Daddy receiving a commendation. Shay was allowed to be next to Dad during the ceremony and must say gave Dad a tough time. Shay knows when to be quiet but his whispering is extremely loud! He was so proud to go up with Dad to receive his commendation by the borough commander and John Snow the channel 4 news reader. Shay had a fabulous day out and on the way back insisted on stopping at the pub again to see his 'best friend' Paddy.

Poorly...

Shay has been poorly since Sunday evening. It started with a high temperature and sickness. Monday morning he was put on antibiotics and Ventolin for his cough. Yesterday Shay was at hospital with suspected chicken pox, he only had the spots down the backs of his legs. It seems our little man has chicken pox but we won't be sure until his blood cultures are ready tomorrow. He is on double strengh Zovirax which will protect Shay from alot of the symptoms of the pox. At the moment no-one knows how his body will respond to the virus especially with him having Pearson's. It's getting more difficult to give him his meds as he is now refusing them point blank. So lots of persuasion is needed but even then it is a major battle.
Hopefully it will turn out to be an uneventful week and he gets better soon.

Growing up!

Shay is certainly growing up fast the last couple of months. He is looking older and developing how he should across all areas. He enjoyed a recent trip to Wembley stadium and as you can see by the picture he loved it. I think his favourite part was going on the train! Shay had his last transfusion on the 23rd September 2010 so it has been a while now. It seems his marrow is making red cells as his hb is now a whooping 10.8, nearly in the normal range. His platelets, WBC and neutrophills are still very low but stable. So hopefully in the near future these will recover also. It has always been a huge worry that Shay would go into complete marrow failure. They can transplant but it seems the survial rate for a child with Pearson's is 18mths post transplant. So thank God he is slowly recovering it's been a long old wait for it to happen. Can't believe our little man will be 4 years old next month he has had a hard struggle with life the last couple of years it just goes to show what a strong fella he is.

We'll miss you Katie!

Shay's favourite nurse is leaving GOSH at the end of the month to follow a career in nursing. Katie has been with Shay since day one and it was really sad to hear that she is going to uni. Shay will miss her lots when he is up at the hospital as he always looks forward to seeing her. We wish her all the best over the following 3 years and hopefully will catch the odd glimpse in the corridors when she is a student nurse.

Happy New Year!

Shay at last was well enough to enjoy Christmas this year. After weeks of colds and coughs he was given respite from all of this and thoroughly enjoyed Christmas day. It is the first year that he knows what Christmas is and that Santa is coming to visit. Shay is manic about toy story and buzz at the moment as the picture shows.
Shay had his bloods taken just before the New Year and with a fantastic 9.4 for his hb he doesn't need a transfusion. It has now been 15 weeks since his last transfusion which he is really pleased with. Next week we will be seeing his lead specialist and lots of questions to ask regarding this change in Shay's health.
Happy New Year everyone!

Life is very busy...

The last 7 weeks have been hectic to say the least. Shay is now a very proud big brother. His sister 'Cearney Shaylee' (pronounced Car-nee)is now 7 weeks old and is adored by Shay. Our household has become manic! Shay has taken to a new addition really well and has grown-up in many ways.

For the last 4 weeks Shay has been at school only 4 times. Since September he has had more coughs and colds then ever before. He has had one visit to hospital for a medical assessment but so far we have been able to keep him at home. Shay is now at the age where he gets really upset when he cannot go to school and is starting to dislike hospitals.

As Shay has grown his port is now very uncomfortable for him and having bloods is requiring two or even three attempts with the needle. Our son shows so much bravery and knows that if he moves it will hurt him more. You can feel him shaking and tensing up as his port is accessed.

Shay's last transfusion was in September. It has now been 13 weeks since this transfusion and at his last count his hb was 9.4. At last his marrow is starting to make red cells. To most this would be brillant news but to us it's just as his doctor predicted and now we are waiting to see what else changes in our little boy. Any changes with Shay is not good, it is a sign that the pearsons is progressing.