I might as well stop his therapy

Okay then. Sleeping seems to be going well. Put him to bed, he cries, and eventually he goes to sleep at a good time. Amen. That's all I am saying. I don't want to tempt fate.


We went for a six month review with the orthopaedic department. This basically goes along the following lines.


Go to clinic. Go for Xray. Xray hips. Go back to clinic. Wait for half an hour. Watch copious amounts of children come out with fresh plaster on various parts of their body and wonder to myself how they managed to break said arm, leg, foot etc. Go in and meet doctor and physio. Get told that due to Zack's condition it is pretty unlikely that he will walk, sit, etc. etc. Take five minutes to explain to doctor that we know all this, have done from Zack's birth so nothing is a surprise to us. He nods approvingly (probably glad we aren't parents who are in denial). We add that we know it may be unlikely that Zack will move independently but also say we won't give up trying to help him. Zack gets examined. Spine is good. Hips haven't changed but there may come a point when he will need an operation on his hips as they could dislocate (quite common in children with his type of C.P). We make an appointment for a years time. End of appointment.


The thing is, I go along to these doctors clinics knowing full well it will be negative and not very positive. And I can see why and yes, given the nature of Zack's injury and the statistical evidence of what happens to children like him you would assume that he won't develop his gross motor skills. But I think that if I just gave in to the inevitable then I might as well stop his therapy, stop encouraging him to try, let him be and make no extra demands of him. If I did that then Zack wouldn't be where he is today so I will never give up on him and we will never stop trying. I know there is so much more he can do. Call it a gut instinct but this clever little boy is very strong willed and with a little encouragement and help I think he will get a lot further than most people assume. After all when he was a few weeks old in hospital and they took him off the ventilator they didn't expect him to be able to breathe for himself. Got that wrong. And as one doctor said to him, you proved us all wrong. 


He hasn't anything to prove. He just is who he is and anything extra he can and wants to do is an amazing achievement. 

We haven't heard a peep from him

Zack is an enigma. I cannot work this little boy out. Now I know I am getting a little boring with the mention of the (SLEEP) problem but seriously what the hell is going on with him. 


Thursday night got him to bed and asleep by 8.45pm. Result. To which Dan replied at 9pm, "No way. I'm off to bed. Goodnight." I on the other hand used my time wisely and went on Facebook and Twitter until 12.30am. Damn those social networking sites.


Friday night, the little bugger was up until 12.30am. And last night, a night when I needed him to go to sleep at a good hour as I had to be up and out the house by 6am. (Car boot sale. I was selling not buying.) He decides that 1.30 am would be a good time to sleep. My alarm did go off at 5.45am to which Dan asked if I was getting up and going to do the car boot. I told him to sod off and not be so stupid. I mean seriously who gets up at that time on just four hours sleep.


So tonight I stick him in bed at 8.30pm. We haven't heard a peep from him since 9.30pm. I am too scared to go into the room in case he is wide awake lying there. Waiting. 


As you can see, there is no pattern to any of this. I think now I have just given up on trying to work it out. It's better to accept the situation and go with the flow. I still hope one day the time will come when he will go to bed and go to sleep without all the drama.


Zack went drumming on Saturday. Dan took him to F.UN Club. Apparently, Zack was not to fussed about his Dad taking him and decided to offer him no smiles all morning. As reported back to me, the Pants gets to the drumming session when a young female helper comes over to say hello to him. He gives her a big smile. Such a flirt. 

Off I went down the M62, yet again

Slight problem last Sunday when another dash to Alder Hey was needed. Thankfully this time it didn't involve the body of a two year old, this was more to do with my obsessive cleaning habits.


I decided to put the extension tube to Zack's Mic-Key button (the bit that we attach in order for the food to go down) in to the steriliser. Well I thought it would give it a really good clean. It did. It also melted the top so we could no longer attach the syringe. Bearing in mind we were only given one of these, mild panic set in, it was Sunday night and it wasn't like I could pop to the chemist and pick one up.


I know I'll phone the local hospital. Nope they ain't got one, why not try Alder Hey. Bingo. A nice nurse in one of the wards found one for me and so off I went down the M62, yet again. At least now I know not to steam clean the tubes but maybe they should come up with one that doesn't melt in the steriliser.


We went to see the dietician the other day. Zack got weighed, he is still the same but 2cm taller than last time. I am sure the scales aren't right, I mean he is getting really heavy to lift and is starting to hurt our backs. I also had the discussion with the dietician about his blended diet. She still couldn't recommend it even though he's stopped throwing up during every meal. 


I asked why. One of the reasons given is that Zack wouldn't always be getting his nutritional needs met through a blended diet. I said I didn't understand the point and the dietician explained that through a blended diet you cannot be sure of the calorie content. Well hang on, does every parent feeding a child that eats normally count the calories or even know how many calories their child should have. Nope. They just feed them. I on the other hand know how many calories Zack needs, how much fluid he needs and I give him a diet that is probably healthier than most children as I can get all sorts of veg, and good things down his PEG. 


Anyway I just nodded, explained all of the above and said it was a shame more health professionals couldn't get on board with this method of feeding. We agreed that I didn't need to come to more appointments just for weighing as he usually gets weighed at the hospital and that if I need to see her I can just get in touch. Works for me. And off we went back home to some blended cottage pie. Nice.

I ran into the bathroom to find Dan and Zack minus one gastrostomy tube

Do you remember a while back in this blog I talked about changing Zack's gastrostomy to a Mic-key button? And how we would wait until he was a bit older as he would have to undergo a general anesthetic?


Well, unexpectedly, he now has his Mic-Key button. And had no general anesthetic.


Naturally this was all done in a dramatic fashion as nothing is ever simple in our house. I mean if it was, what the hell would I blog about, all this would be quite dull.


Thursday evening, Dan was giving Zack a bath when I heard him shout Linzi, in his panic voice that puts the fear of God into me. I ran into the bathroom to find Dan with Zack who was now minus one gastrostomy tube. 


Dan had accidently pulled it out when he was undressing the Pants. 


"It just came out."


"What do you mean it just came out, is he okay, did he cry?" 


"No he wasn't bothered at all." And he wasn't, he was just bothered about the fact he was lying on the bathroom floor half undressed.


In the next ten minutes we had two children in the car and we were all on our way to Alder Hey A & E. I knew we had to get there quick sticks as the hole were his gastrostomy had been would start to close up. Luckily we were seen straight away by a nurse who put in a catheter as a temporary measure until we could see the Stoma nurse. 


We were able to feed him through this and were sent home. After a bit of chasing up on Friday we managed to get hold of the Stoma nurse at Alder Hey who said she would put in a Mic-Key button.


I was under the impression that you had to have a General Anesthetic for that but no, apparently that's only to get it out. Hmmm. Seems there is a silver lining to every cloud.


The nurse also mentioned that the gastrostomy is only really a stop gap of about six months and the longest she's seen one in for is 18 months. OH. Maybe our two years is a world record.


So now we have one little boy with a little button in his belly. No dangle tube tucked into his pants, all nice and neat. Here's a picture of one, not Zacks, but an example of what we mean.


Mic-Key



Funny how accidents can create a good outcome. Well sometimes they can.

Dan has discovered what a lady magnet Zack is

Sleep seems to have found it's way back into our house once more. 

We have increased the Melatonin and for the past few days we have been getting Zack to sleep at a reasonable time. Okay one night it was a late one but that's only because he went to a swimming party (more on that later). We have done the odd night of leaving him to settle himself and he has done so a good few times, even though it meant crying and moaning for a while. However the last couple of nights I have just sat with him, giving him a cuddle and managed to get him to sleep. So we are slowly getting our evenings back. Yay.

At the weekend Zack went to a swimming party organised by Families United. Dan took Aqua Zack into the pool whilst Scarlett and I watched from the balcony.  Well, Scarlett slept and I sweated upstairs, it was tropical up there. We got to chat to some of the families we have gotten to know over the past year and it was nice to hear some positive stories about children who are doing well developmentally. What's more, Dan has discovered what a lady magnet Zack is. He was surrounded by ladies in the pool and told me on the way home that if he was ever single, he'd just take Zack to the swimming baths as he seems to have a gift for attracting female attention. Well, it's good to know Dan has a find a new mate plan using our son. 

Despite having an additional child I have still managed to keep on top of Zack's therapy and we are due back to Brainwave for an assessment in May. And not to exclude Scarlett in therapy playtime I made a little mat and roll up towel for her own tummy time session. See below. Nothing like a bit of competition to help push you forward.

Look Scarlett, you do it like this.

No, like me, look.

Oh and this is what happens when you don't get any sleep.

There was no way I was getting up early.

This was the day Zack had a three hour nap and we got him dressed and took him for a mile walk around the block and he still didn't wake up.

Dan took him downstairs for a little while

Well the sleeping seems to be getting slightly better but is by no means perfect. By better, I mean Dan and I are sleeping, poor Zack is still struggling.


He has a cold at the moment which is bothering him at night. We are still putting him to bed at a regular time and he still cries. I have gotten him out and comforted him and he still cries so I put him back him. This seems to settle him a little better. Last night he nearly went to sleep at 9.30pm but the fact that he couldn't breathe through his nose woke him up. Last thing I remember it was about 11pm and I was going to go in and get him out. I fell asleep. Woke up at 1.30am and he was still awake. Dan took him downstairs for a little while to settle him. He soon fell asleep and I let him lie in until he woke naturally at 9am. 


I just felt so sorry for him with his cold and the late nights that I wanted him to get at least some sleep.


Other progress is that Dan has spoken with the Doctor and he has said that it is very common for children such as Zack to have this type of problem. He has suggested we up his Melatonin to 4mg and give it to him twenty-five minutes before we settle him for bed. He also told us that it can take up to a month for it to have an affect. So we are going to continue with the routine and the melatonin and keep our fingers crossed. 

Yes 5am!

Dan came back from his sleep seminar with a host of ideas and enough reasoning to make me try the sleep technique of leaving Zack to cry it out. 


Oh God this is the hardest thing I have had to do for Zack and we are now on the third night of basically following a bedtime routine whereby we put him in bed whilst he is still awake and leave him to fall asleep and settle himself on his own.


First night, we put him down at 7.30pm the crying and moaning went on until 5am, yes 5am! We went in every so often to pat him on his back, to reassure him we were still there but it was so hard not to pick him up and go back to the old thing of holding him and rocking him whilst he cries and then finally drops off. Dan kept reminding me that the only reason he is crying is he wants to get up, he doesn't want to go to sleep and he has learnt that us holding him means sleeping and going to sleep. 


Night two was slightly easier. We did the same thing again. Remember routine and consistency is the key. (According to Dan, who now seems to be an expert on sleep). By about 9pm it had gone quieter. I went to the supermarket. I came back to Scarlett wanting food (nothing new there) which meant that her crying had woken Zack up. So back to square one with him moaning and crying. Eventually he went to sleep at about 11.30pm. Okay, a bit better than night one.


We are now on night three and he is moaning in bed. He is so tired he couldn't keep his eyes open downstairs. All I want to do is go in and pick him up but it would make no difference to his moaning he would still cry, in or out of bed. I feel awful but we have to carry on and break this dependancy on us for him to fall asleep.


Seizures


We had the results back from Zack's latest EEG. Apparently the Hypsarrythmia has gone. He no longer has infantile spasms. What he now has is partial seizures that is they are in one part of the brain on the left side. I asked the epilepsy nurse if this was a good or bad thing, she said well we aren't going backwards and the medicine he is taking treats partial seizures. So for now I'll take this as a good thing. We see the neurologist in June so will hopefully get a better explanation then as I don't fully understand it myself.