A shorter time since my last update. Seth’s health appears to be going from strength to strength and we are slowly getting used to our cheeky, energetic 5 year old that we have never before seen!
Things are still going in the right direction, albeit slowly. A couple of weeks ago they took the bloods for the Thymus check and the numbers are still not enough to give a conclusive result. However, there does appear to be a few more ‘mature’ T cells. So were hoping that this is a sign that things are changing, slowly! Also he has grown FINALLY! 6 or 7cm since January.
He is now eating pretty well. He has three meals a day, small portions but he finishes them. We are currently encouraging him to try different things, especially things with a sauce. This is often met with some anxiety from Seth and he often takes a break from the table, but then returns and finishes the meal. The last few days he has come on leaps and bounds with this. The best way we can get him to eat – is by getting him to cook it with us. This week he has made us Lasagne and Pizza.
In himself he is ready to go to school and be with other children. He is under stimulated at home. We try our best but it’s the same home everyday. We get him out in the garden and to the local park when it is empty. But it’s not the same as being surrounded by your peers and stimulated 7 hours a day 5 days a week. Hopefully, his cells will come up soon and he can go back to school in January. He will be going to a new school and restarting reception year because he has missed so much.
Also, just as Seth was going into isolation, what seems like a long time ago. I posted that we did not have a family picture, and a member of staff took one of the 4 of us in a room at the hospital. It’s not the most flattering family picture. But it is all we had and at the time we were not sure we would get the opportunity to take another.
So, Hugo had a cake smash photo shoot booked for his first birthday. The photographer kindly let us use this session to get some family pictures. We love them!
At the moment he is having bloods taken every other week to monitor his full blood count, liver, kidney function, potassium, magnesium, white blood cells etc and so far things are pretty stable. He is currently on less medication that he has been on since he was 6 months old! Also once a week I give him an infusion into his legs (subcutaneously) of anti-bodies. Known as IVIG.
In other news…… Seth was the winner of the Northamptonshire Pride Award for Courage. Unfortunately, he was unable to attend the award ceremony himself due to isolation. However, his daddy got an evening out at the awards and collected it on his behalf.
The Bubble Foundation, which has given so much to children like Seth has launched a campaign this week. Asking people to posts pictures of they #bubblesforthebubble. In our opinion the Bubble Foundation enabled Seth to have ECP treatment for the 12 months before his transplant, they provided Hugo and me with accommodation throughout Seth’s time in hospital so that we didn’t have to live 4 hours away. They do this for ALL families on the ward. They fund important research to help save the lives of children just like Seth. Here are Seth and Hugo with their #bubblesforthebubble.