Apologies to 'followers'. I have really been slacking with the blog. There's probably a lot I need to fill in on, but wouldn't know where to start, so I'll begin by wishing everyone a happy new year.
I'm hoping this year will be a quieter one than the last few, that we'll spend less time at hospitals than the last few, and more importantly, that it will be less sad than the last few!
On a positive note; Hope is still seizure free! It's been almost 2 months now I think (with the exception of 7 spasms she had one day when she caught a virus).
The 'around the child' meeting that I mentioned in the last blog, was largely positive, with the exception of something that was said that I'm hoping i misunderstood. Too sad to even type :O(
Again, the topic of more tests came up, and I'm certainly giving it some serious consideration.
Oh, and Hope came up as delayed by 4-6 months on her speech and language assessment. Now some might consider that really bad on a baby who was at the time 11 months, but for me, it's REALLY positive! It means, she is making progress, and is no longer at newborn state.
We were also given a referal to use the hydrotherapy pool (which just happens to be 5 minutes away from our house). We've only been once so far, but it was lovely. Hope had a great time, the pool was so warm it was like getting into a bath, she was laughing and spashing and didn't get fed up, and we were eventually asked to leave after over and hour because it was closing.
On a sad note, we've come in contact with another baby girl 'M' who has recently been diagnosed with infantile spasms (the same kind of epilepsy as Hope has, which is a 'catastrophic' diagnosis). We came into contact with them through the lovely Dr. Ch, who was so concerned for this baby, whilst recognising it was completely unethical, but seeing the needs of the patient over everything else, urgently needed some vigabatrin, which we supplied. So far, our contact has been brief; texts and calls, but we plan to meet in the new year. Of course, I am sad to know of another life claimed by the devastating prognosis, it will be nice to share experiences, worries etc with someone.
Sorry if that was all a bit of a jumble...I mustn't leave it so long....Now I'm gonna post another blog about Hope's first Xmas...(See above)
Looks like we read some of the same blogs. You might want to get into another circle of bloggers who have children with IS. Meet Danielle: http://trevorshope.blogspot.com/
ReplyDeleteBarbara
Thanx for the update Caroline. Pleased to hear that Hope's speech has developed, and that she enjoyed the hydrotherapy pool. Also good that you will hopefully soon have friends who are going through and living with similar circumstances - think it will really benefit you to have that.
ReplyDeleteEverything sounds like it is in hand and most of all I am thrilled that touch wood the seizures are under control.
Happy New Year to you all, and I too hope you all have a less dramatic one!
Loving all the photos so so much.
Rachel, David, James XXXX