Just a quick post tonight. Even though Jude still has the odd screaming session, he’s nothing like he was a few weeks ago. We are having longer and longer periods of a more alert Jude, playing the staring competition with us, giving us what can only be described as “an old look”. Today whilst asleep, Jude smiled twice. Well it was either a nice dream or wind, but I didn’t care which. It was truly wonderful to see and I like Ian cannot wait for the awake version. When we get it, we will as promised provide photographic evidence. Sleep well Jude…………. please x
Well we’ve has a week/fortnight from hell! The toll that ACTH has taken on little Jude has been horrid. Ian’s post with the ever so attractive picture pretty much summed things up. Once Jude was asleep we were petrified to even move a muscle, because if we did………………. you’ve guessed it he SCREAMED!
He had his last injection on Wednesday and now has doses and doses of prednisolone to take. I keep the picture in my mind of that first smile after the last bout of ACTH. And believe you me, when we get it the whole world will know about it, and of course we will provide photographic evidence.
Today Jude has had a better day, spending time in his play ring looking at the toys and responding to sounds. He has also been making good eye contact with us. We have had a few horrible nights though, last night Jude didn’t settle until 3.30am then woke at 7.10am! The picture attached shows a slightly tired little man, wonder why?!
Tonight we are sending our love to a very special friend and loved one – Anna Murray, take care xxxxxxxxxx
What a fun day…not.
Jude has two activities at the moment, sleeping or screaming. Sometimes he even screams in his sleep. I really had forgotten just how badly this drug hits him.
I took him up to the hospital today for his ACTH injection, he screamed all the way there, he screamed all the time he was there, he screamed all the way home. Then he slept, but only if he was clamped onto me in some way. I spent the whole afternoon lying on the floor with him sleeping on my tummy. Guess what he did if I tried to move him…..
He is currently lying on Rachel’s tummy in the other room and they are both sleeping and I’m not disturbing them.
Jude’s back home again and he’s sleeping. He’s doing a lot of sleeping at the moment which is a good thing because awake he’s an angry little baby. It’s just gone midnight and he looks peaceful and relaxed, if only it was always like this.
He’s about half way through his ACTH and maybe, just maybe it’s worked again. We think, just think, that we haven’t seen a spasm for a couple of days now. Please let it be so. Please. Every one I saw in the past couple of weeks has shook me to the core. Having believed that we had seen the last of them, every repeat was heart breaking. While they exist it feels like they have taken my son and holding him hostage just out of reach.
I’ll know they’ve gone when he smiles again. That’s when I’ll know that Jude is back home (again).
When I went to the hospital this morning, I wondered what I would find… the little man I had seen the day before was so upset and in obvious pain. My sister – Jude (the elder) had come to relieve me yesterday so I could go home and get some rest. Jude was so unhappy and the nurses felt he needed a break and they decided to give him some chloral, just so he could have a chance to rest. I think it was what the little man needed as today, he seemed alot more settled, still suffering with the dreaded wind but so much more settled than the day before. I found it so hard yesterday seeing him suffer but I think you will agree the picture below shows a more settled Jude. His blood pressure is on the up and a little high today. I think the hospital are going to keep a close eye on this, so we are not sure when Jude will be home. Sometimes I can’t believe we are back on the merry-go-round again. Roll on home life together…… it’s funny how the simplest of things can seem so desirable – all waking up in the same house.
Ok, I think Jude must love everyone in the Childrens’ Ward as we are back there again. As of yesterday Jude was re-admitted. My gp was quite anxious about his temperature and referred me to the ward. I really just wanted to stay back home, having had a taster of life back at the hospital, I had decided 100% that I preferred home life.
We went back yesterday, and Jude was not a happy chappy the whole day, he was very irritable and cried most of the day. This from just two ACTH injections, ad we have so many more to go. His temperature has settled but our consultant wants to keep her eye on him while we do the next few injections.
She told me today that the results from the EEG carried out on Thursday were not good at all. I thought as much, following a four hour crying seesion last night, Jude was visibly jumping and twitching. It’s is not nice to see. But I said to the consultant this morning, I know this road is not a nice path but it is one we must all travel for Jude to hopefully make these horrid things go away again.
My statement to Ian “If we stick together, we can get through anything”. And we will.
Jude has restarted his ACTH injections but at a higher dose than last time – 2 weeks of ACTH followed by a few weeks of Prednisolone (also a higher dose).
He came home in a really good mood and at the moment I feel that while this next few weeks may not be pleasant it is something that he needs to be got through so we can start to get back to the Jude we got to know over the summer.
I went through some photographs on Rachel’s phone and realised that there were a whole load of photos from early summer of Jude smiling and then they dwindled to almost nothing. I reckon a smiling baby is happy and content and probably the reverse is also true. So if this can give Jude his smile back it will be worth it.
See you soon ‘real’ Jude.