Which remained stuck in the air as evidence of his torture

We have started Zack on his two week blast of steroids. This has included three visits to hospital so that he could have his blood pressure, bloods and urine samples taken. On the first day the nurse managed to get his blood via a little finger prick on his thumb. The pants was not happy and by the end of it he sat on his Dads knee with his bottom lip stuck out giving everyone the evil eye. I would have felt sorry for him but I couldn't help but laugh at the fact that he had a big white plaster stuck on his thumb which remained stuck in the air as evidence of his torture. He got a I've been good today sticker, this didn't improve his mood but his dad and I thought it was cute.

So far we are on day three of the steroids and Zack has been a little out of sorts. He is vomiting up his food again, been sleeping a bit more and is generally a little irritable. This is to be expected with the medication but at least it's only for two weeks. We have also seen that his spasms have been increasing not decreasing. I am hoping by the end of seven days they will have decreased and Zack will be back to his usual self.

He just sticks his tongue out

We met with a new Speech and Language therapist the other week. I shan't go into why we have left the old one but the new one wasn't for taking us on at first. By the end of the session we had agreed she would see us every couple of months, which is no more often than the last one was seeing us. She was quite happy for us to keep trying Zack with his little tasters of foods and showed us a couple of tricks to get him to shut his mouth.

For the first few months of life Zack kept his mouth firmly shut, he kept his lips in a permanent rosebud shape so when he started relaxing his mouth and we actually saw that he had a tongue we were quite excited. Now we have to lift his chin up slightly so that his mouth closes, the poor baby can't win. He isn't too bothered, if he doesn't want you to do it he just sticks his tongue out.

The Pants has been for a hearing test today. He slept through the whole thing. He needed to be awake but managed to go into coma status for the whole session. The consultant tested his ears and he still has glue ear which could be affecting his hearing but we agreed to leave any decision to operate until he was a little bigger. For now the hearing aids are doing the trick and seem to be working quite well. As soon as we got out of the room he woke up, how on earth does he do it, I mean, really, how does he know.

Tried to chase up the OT about Zack's seating arrangement to no avail. I just ended up with a phone call from another OT to tell me that they were the wrong OT and the one I want was moving boxes at the moment so here's her number. So I asked what the difference was, apparently one deals with school children the other with seating, huh! Okay, so I asked her to phone me to let me know how long her waiting list is, the lady asked me what my number was, I said the same as the one you've just called me on. Slaps hand to forehead.

In the meantime I took Zack to look at some high chairs in Mothercare. I popped him in one, assuming he would just flop forward. I am quickly learning to not assume anything with him. He sat upright and placed his hands on the table and lifted his head up. Then he checked out what was to his left and right. Ooooooh, I thought, he likes this, how much is it.....£149.00 I don't think so, get out of the chair Pants. My thinking is that I get a second-hand one which will do until he gets his special seating. That way if he hates it we haven't wasted money that could be spent on pretty shoes for mummy.

My day was finished off nicely by a call from the epilepsy nurse to tell me that the recent EEG Zack took a couple of weeks back shows no change from the original. Even though we have been seeing less seizures the hypsarrhythmia is still there and not under control. We are being advised that the next thing to do is to give Zack a two week dose of Prednisolone. Whilst he is having this he has to go in to the hospital five times to have his bloods, urine and blood pressure tested. Great. I hate the thought of new medication and not knowing what it might do to him. But if we don't treat the seizures then they could get worse and this won't help Zack. If the steroids don't work then we have to consider a different drug. I am not looking forward to the next few days, it is so unfair on Zack. I just wish sometimes he would get given a break. I remain hopeful that we will get his seizures under control I just don't know how long it will take.

He had put on a pound in two weeks

Zack went out for Sunday lunch. He looked very smart and was a good boy. His now enhanced skunk eye was given to a cute little five year old boy who was staring at him....I sometimes get the feeling that Zack isn't going to play well with other children unless he can be top bitch!

Zack has also been growing....a lot. The new milk he is on is certainly having an affect. We went to see the dietitian and as I was getting him undressed for his fortnightly weigh in (Zack that is not the dietitian) I was saying to her how I don't think he will have put much weight on as he has been poorly with his chest infection. Wrong. He had put on a pound in two weeks. Amazing, he has jumped up a curve in his little red book. I was so pleased. I knew he had gotten bigger as he had outgrown most of his clothes. This is also a great excuse to go shopping for mini clothes, I never knew it would be such fun to choose little boy outfits. Oh who am I kidding, I have only been trying to dress Dan up for the past 13 years to no avail. I now have the perfect little guy who I can style to my hearts content and he doesn't even moan. In fact, I think he likes looking quite dapper. He has his gangsta look, his geek chic look, his preppy look and he is working on his collection of dressing up costumes. He could teach Gok a thing or two about being on-trend!

Zack's physio came round the other day. Zack slept through the whole session, well she did call at 9.45am and he doesn't get up until 11am, no amount of stretching limbs was going to raise him from his coma. We talked about his stretches and the physio made the suggestion of lying Zack on his side in his little room to encourage him to play so his hands are in a mid-line position. I tell you, I never thought I would understand what supine position and prone position is but shout them out to me and I can put a baby in chosen movement within five seconds flat. Physio told me that she has asked the OT to contact us with regards to Zack's seating so we are now on a little waiting list for I don't know how long.....good old NHS.

Zack took his first big boy bath tonight. I bought him a little seat thing that he lies in which frees up my hands. So I put some water in the bath and plonked him in this plastic seat. He knew something was amiss as he wasn't doing his usual floating position that he enjoys in his baby bath. He narrowed his eyes and looked at me. I then started the splashing. Oh.....someone likes the splashing of the water, I think the sitting in the bath is a big hit. At one point his feet where soaking in the water and he dropped his arms over the sides of his seat in a proper chillax position. Every time I would stop the water splashing he would look at me and almost stop breathing, waiting until I did it again. Big boy bath is a big hit.

Last thing to note is that we have noticed Zack is holding his head up a lot more when sitting on your knee. You can support him just at the base of his spine and he will sit upright for a short space of time. He doesn't do it constantly and his head will drop but he will pull himself back up again. Sometimes he will have a day where he will do his sitting up a lot, other days he will be a bit lazy and not do it so much. However it's a development and a good step in the right direction.

He is wanted

Over the past couple of weeks there have been a number of articles and a t.v programme about parenting children with special needs. In the main I have found these articles to be deeply depressing and unbalanced. One such article appeared in the Daily Mail and can be read on-line at http://www.dailymail.co.uk/femail/article-1227080/Do-I-love-disabled-daughter-With-heart-Will-relief-dies-Without-question.html.

It was written by a lady who has devoted 18 years of her life in caring for her disabled daughter. She has now decided that they will only provide pallitative care for the daughter, which means no more intevention. Reading this, horrified me, but then I asked myself was I just horrified because this woman had bravely spoken about things that you bury deep inside of yourself. Was she right to suggest that because her daughter was profoundly disabled that she had no quality of life? Yes it would be a release for her when her daughter dies and undoubtedly she loves her dearly, but, how can we judge a quality of life? Will I be able to say Zack has a good quality of life if he depends on me for all of his?

I am only at the beginning of my journey but I know that even though Zack might never, walk or talk or do things you or I do, his quality of life for him is good. He is loved. He is cared for. He is wanted. He is content. Isn't that enough?

I also watched a TV programme on BBC 1 last week called When a Mother's love is not enough. Rosa Monkton, herself a mother of two daughters, one with Down Syndrome, met with parents of disabled children and discovered or rather voiced her utter despair at the lack of support given to these families. The programme showed families and single parents in dire circumstances in which life is terribly difficult, consuming and full of hardship. After watching this programme I felt that anyone who has no experience of raising a child with special needs would only pity us more. I found the programme to be very unbalanced. It gave nothing of the positive side of loving a chid with a disability. It made us out to be parents who are so desparing and so desperate that we could take our own lives and the lives of our children at any given minute.

I do believe that there is still a lot of work to be done in order to change the system in order to make it easier for parents to access support and help. But come on, let's have some programmes and articles showing the positive side of our lives. Show the families that go through both the ups and the downs, show all of the journey not just the walk through the dark tunnel.

And so here endeth the rant.

P.S.

Zack is much better but is still very naughty and staying up until 11pm. Surely this can't carry on.

Zack on film.

Some badly edited video footage of the Pants enjoying some play time in his little room. He seemed to have a routine of hitting his round rattle and then his bells. Oh, it was Halloween when I filmed this, we don't always dress him up as a pumpkin........or do we????

Okay that was impressive

Now Zack is on the mend he has decided that to introduce a new bedtime routine to our lives. Gone is the tucked up in bed by 9.30pm evenings and welcome to the I am staying up until 11.30pm at night event.

The little tinker has a great routine. He gets up at about 6am, has an early breakfast, nappy change, bit of a cuddle then back to bed. If he's lucky he twitters away in his cot for a bit whilst his dad gets ready for work and I get him out of bed for a cuddle in our bed where he promptly falls asleep. This ahem, lie-in, lasts until 11am. Then he gets up, gets dressed, has second breakfasts and is wide awake for the rest of the day until about 5pm when he has a nap. Then bathtime, evening food and what should be bedtime. Not tonight, he decided he would rather stay up and be wide awake at 10.30pm ready to play and looking for someone to take him up on the offer. He even tried to impress me by doing head lifting a good number of times whilst lying on my chest. I was not impressed. He tried to REALLY impress me by pushing up on his arms and lifting his head even higher. Okay that was impressive but I would rather you go to sleep.

I had a plan that the epilepsy drugs made him drowsy for a few hours and that if we gave them to him at about 8pm it would make him sleepy........plan didn't work, they make no difference whatsoever. And please no suggestions of waking him up earlier, it doesn't work. You can get him out of bed, dress him, do his nappy and it's like he is in a coma, he will not wake up. So hear I am now blogging at 11.30pm, after he has finally gone to sleep. Serves me right for being so cocky about his great bedtime routine.

Zack went mad

Zack spent the 5th November in hospital. This wasn't due to some rogue firework accident or the fact that he grabbed a sparkler after it had gone out.....nope it was down to a nasty chest infection again.

The night before he had been a bit unwell and his breathing was slightly panty so I took him into the local childrens ward. He has open access to the hospital ward so we don't have to go through A and E. The doctor took a look at him and said his chest was clear and that he probably had a cold virus. So we took him home again and dosed him up with paracetamol. The next morning he panted his way through four hours and I just knew he wasn't right, his temp had gone up and he was looking quite poorly. We contacted the hospital again and they told us to bring him in. We expected a quick look over and to be sent home with antibiotics, but this wasn't the case. His heartrate was up, he had a temperature and he was working hard at his breathing, he had developed a chest infection.

Next thing a very nice and very cautious doctor had him in a cubicle, suggesting oxygen and catherters, Zack by this time was panting away looking awful. The doctor asked if we use a suctioning machine at home for his secretions, errr no he can sort them out for himself I told her. So she instructed the nurse to get a sample of his saliva to see if he had a bacteria infection that was causing bronchilitus.

Doctor leaves the room. Nurse comes back with a tube.

"Where's that going?" I asked, "Down his nose" the nurse replied with a smile....."Mmmmm good luck with that because he's going to go crazy" She just smiled at me. Oh the chaos. She tried one nostril no secretions (well duh, that's because he swallows them), she tries the next nostril, by this time Zack went mad his arm came up and he started whacking her out of the way. He can move his limbs when he wants, I swear if he was bigger he would have smacked her across the face. The nurse looked up "Oooh he doesn't like that does he and I couldn't get anything. Mmm, yes, I think we'll leave it I'll let the doctor know." She left the room pretty quickly.

After that they didn't attempt to put the oxygen prongs up his nose instead they just put an oxygen mask by his face. Then a junior doctor came in to put a catheter in his hand. I did ask the reason for this and she said it was in case they needed to put fluids in to him, they also needed to get some blood. I wasn't overly happy about it, I didn't want him any more distressed and I thought they were going a bit over the top. By this time Dan had gone home to get some clothes and other Zack items as he was going to stop the night. They proceeded to get the needle in Zack's hand. I got upset. The doctor turned round and asked if I was okay and said it's alright, it's only a little needle, he's only upset because we are holding his arm down. It wasn't the needle, I was tired, I only had two hours sleep in the last 48 hours and I was upset that Zack was ill. The nurse who was helping the doctor was lovely she said that I was just upset because Zack was ill. In the end they managed to get the bloods off him but the catherter couldn't stay in place so they took it out. They agreed that they wouldn't try it again unless he really needed it. I didn't think he needed it in the first place!

A chest Xray was also taken. When the results came back it turned out he had some shadowing on his lungs and infection showing up in his bloods. They said that it was likely that he caught a virus which had turned into a chest infection and they started him with oral antibiotics. By the time Dan come back and I left to go home Zack was a lot more comfortable and sleeping. I went home, got a shower and slept through the constant drum of fireworks.

When I got in the next day The Pants seemed a bit better and fortunately the consultant whom Zack is under was about and came to take a look at him. He had only taken two steps into the room and said to us, "Do you think he's well enough to go home?" He checked him over, looked at his monitor and asked us how his saturation levels had been (amount of oxygen he was taking in). We said they had never really fallen below 85, he said, mmm sometimes staff end up treating the numbers on the machine rather than the patient and he didn't need the oxygen. He assured us it was a chest infection and that like he has said before he will get quite a few of these. Regardless of Zack's problems all babies suffer in the first year, which is often the worst. The second year is tough again but a bit easier and as they get older their immunity builds up so it gets easier. We were allowed home. Zack was still a bit panty all day and slept through most of it but I'm not surprised given he had a rough time. He has some antibiotics to take and they seem to be doing the trick. Only a few more months to go and we should be away from all this winter cold stuff, roll on spring that's all I can say.