Jude’s Art Wall

The boys have started an art wall in Jude’s room to display the art work Jude does at his pre-school. Nathan also did this clever looking collage as well………

As Nathan calls him, Little Man is thriving at the moment – an absolute joy. He still has seizures but in between them he is having a great time….and so are we. (Although daddy has man flu, very poorly).


Things Are Changing

Well there have been some changes recently, this was following our conversations with the neurologist and dieticians about Jude’s lifelessness.

It was decided that we would take Jude off his topirimate. The change in Jude is unbelievable! I so wanted to say to Jude’s neurologist “I just want my little boy back” but I thought that may sound a little silly. Well he is back and so so happy. He responds to us when we talk to him, he coo’s, smiles, laughs, almost chuckles! It is so good to see.

Tonight he’s been on his front and has been kicking and pushing himself up lifting his head. Now he’s decided to stamp on the floor with his heels whilst playing under his gym.

His new bed arrived today, loaned from our respite team, oh my word! What a difference this is going to make to our lives ….. well our backs actually. The lads think it’s pretty good too.

This week we’ve also had the joy of trying to sort out medication – anti-biotics for Jude that will suit his diet. What a nightmare that was, but thanks to his fab GP and pharmacist we have found one that is safe to give whilst on the diet.

Jude will turn 3 in a few weeks time and when he was first diagnosed I never thought we would reach this day with any sanity. At the time I felt faced with a mountain that I would never be able to climb. But with amazing support and love from family and friends and the help of all the services we have a happy little boy who has now got his own room on the ground floor (thank goodness) in a new home with his family. Happy days 🙂

My Own Room …….

I think this is what Jude must be thinking. Last night Jude slept in his own room for the first time. Initially we had no curtains or video monitor. Well last week the last curtain was put up and his big brothers, plus three friends, ‘tested out’ the room for their baby brother.

I think there have been some people who thought I’d never let go and put Jude in his own room and I would be a liar if I said I hadn’t found it difficult, but come on he’s three in 44 days!

The monitor is a Tomy video monitor. It’s great! you can see, hear and talk to Jude! So I can still see he’s ok at night which equals a happy (if not very tired) mom.

This is Jude, fast asleep about five minutes ago 🙂