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 🙂