The lady was fantastic. She should have her own tv show.

The vision specialist teacher came to visit Zack on Tuesday. She turned up with two Ikea bags full of creative little ideas for stimulating vision in children. 

It worked so well that Zack fell asleep through the whole session.

 I, on the other hand was amazed at how inventive you can get with a bath scrunchy and an octopus clothes dryer! The lady was fantastic. She should have her own tv show. Out of this bag came one small bottle of water filled with gold glitter, two round bath mats, one black and one white for contrast, stripey socks, paper bags made of holographic paper, it was endless. Most of her finds where purchased from Ikea, including some black and white material....why didn't I think of these things before I went and spent £32.99 on a miracle and milestones mobile from Fisher Price?

In the middle of all this oooohing and ahhhhing at the stuff, Zack decided to have a choking fit and turn blue. He does this every so often when he is dozing. I think he forgets to swallow his saliva and it starts going down the wrong way so he gags and coughs, this is usually over with in a couple of seconds, but this one, he couldn't get his breath, it did get a bit scary. After some slapping of his back he sorted himself out, but he was a bit pooped after it all so went back to sleep again.

When the vision teacher comes back in a couple of weeks she is going to bring the little room (ie. cardboard box) with her. It's based on Lillie Neilson's theory of containing visual stimulation in a small room for babies so that it is amplified for them minus other distractions. Can't wait.

I also couldn't wait for Dan to get home so I could ship out to Ikea for a few visually stimulating tools. I came back with the following items:

1. One black and one white bathmat

2. Two different types of black and white fabric

3. Four black and white prints along with frames to pop them in

4. A set of finger puppets (I took my eye off the ball there, but I really liked them, they reminded me of finger mouse)

5. A packet of red and black bath scrunchies (these now hang on the ceiling of Zack's nursery, if you didn't know us you would think we are very strange parents)

6. A hotdog and a drink (I didn't come back with these, I ate them, you have to, it's the law when you visit Ikea)

I came home with my goodies, I was impressed, Dan was relatively impressed, Zack wasn't arsed at all.

We have booked our place at the Advance Centre and are going there next week for three days. I have also noted that it is meant to be a heatwave next week, so I am not looking forward to the drive down with Zack melting in the back of the car. 

Zack is still having his little episodes of spasms. At the most it is 10 a day, still the same, pursing of lips, neck stretch and arms down to the side. We are both extremely worried about it. We are hoping it isn't some form of infantile spasms, but I guess the only way we will find out is for the doctor to send him for an EEG, I presume that is what they will do when we let them know about it. I think if they get to about 20 a day we are going to contact the hospital. Until then we will hang on until our docs appointment on the 9th July. He still doesn't seem disturbed by them, he just can't control it. 

Zack allowed his mum to go out for dinner the other night. The first time in ages. I really enjoyed it. It was good to talk about other things other than the little man. Not that I mind talking about him but getting away for a few hours was great. I feel quite guilty when I think like that but I suppose you have to be a little selfish at times otherwise you'll end up getting so engrossed in the situation that you lose yourself. Anyway, I have arranged to go out again, this time for a few little cheeky drinkies......I let Dan know my plans. He asked how I am going to manage to get up on Saturday morning to feed the Zacky Pants, I suggested it would be very nice if he could do it and perhaps look after him for the whole day as I am most likely to be not very well with a small headache and a vomiting virus! 

18 weeks old and already trying to sign on

The weather was rubbish outside so I spent the afternoon being very industrious on behalf of Zack. I sat down and actually filled in his Disability Living Allowance form.

This epic War and Peace form took ages to complete. Parts of it I couldn't complete as they asked stupid questions such as can the child dress himself? Do they need to be observed whilst outside? Do they need help with washing? Duh!!! Of course he does, he's only 18 weeks old.

There was also a nice big space to fill in additional information about Zack's disabilities. I did so. With an extra two pages for them to read. Ha! I'll show them and their big forms.

It's all completed now. So we will see what happens. I don't know, 18 weeks old and already trying to sign on, he better not get used to this!!

Zack has spent much of the afternoon with his dad. Which is great for me as I can get lots done. As I write this Dan has taken him to Tesco's....aaaah his first Daddy and son trip on his own. I did the usual make sure he's got a blanket and a bib and don't forget his mittens.  It's quiet in the house without them.

Lately we have noticed Zack having a couple of spasms here and there. We don't know if they are seizures but we are aware that epilepsy is something that could develop due to his brain injury. 

They usually take place when Zack is worked up. One in particular is when he is very stressed and jackknifes forward, throwing his arms toward his legs and his legs off the floor toward his arms. This last for 5 seconds at the most and then he is calm. The other one we have seen is he will suddenly go stiff and straight, purse his lips and bend his hands inwards, his eyes go quite wide too. Again this lasts all of 3 seconds then he is very calm and alert. They only happen once at one time, they don't come along in bursts of three or four. We are keeping an eye on it and if it gets worse will contact the hospital. We have an appointment with his consultant in August so we will mention them to him then  and get his opinion. I know epilepsy could be something we have to deal with but I really don't want Zack to be put on medication. He is doing so well health wise, no medicine, just his therapies. I just want to try and keep it that way.

She suggested we up his oral fluid in-take to 10mls of water

This has been a busy week for the Zacky Pants, it's been full of appointments, travel and has given us all plenty to think about it. 

Monday was Feeding Clinic day

This is a visit to the Child Development Centre in Warrington. Lovely place, friendly staff, nice building, I think we are lucky to have somewhere like this in our borough. We met with the Speech Therapist (ST) and the Dietitian. What usually takes place is Zack gets naked, shouts a lot, gets weighed and then the Speech therapist pops her finger in his mouth to see how his sucking is coming along....you can see how he loves going to these sessions!

This week, he did brilliantly. He has put on some more weight and is now 9lb 3 and has grown a little more, 52cm in length. But the best thing was his sucking has improved a great deal. ST was very, very pleased with his progress, she thinks he is developing nicely and it seems, in her opinion, he is delayed developmentally, which although isn't perfect is good as he can catch up.  ST was so happy with his progress that she suggested we up his oral fluid in-take to 10mls of water. Ten I shouted are you sure. Mmmmm. Okay seven. Seven! Okay I tell you what go with 5mls before each feed. 

And so 5mls we have been trying before each feed and he is doing great with it, having a good go and swallowing it all I am so proud of him. 

Tuesday we went to see eye lady 

Again we were at the Child Development Centre. We got taken into their nice sensory room and met another lady who specialises in working with children who have visual problems. 

Before we go in we have to take our shoes off.....so now we are all sat in this white plastic room looking at a bubble lamp and I am wondering if its my feet or Dan's that smell really stinky. 

Anyway, Zack seems to be enjoying the bubble lamp and eye lady is very impressed with his intense watching of bubble lamp....then Zack decides to do his usual trick of falling asleep. Appointment over with in less than 15 minutes. However, new lady suggests she comes to our house for a visit and will bring with her a new house for Zack. Personally I think the one he lives in is fine and was quite offended that she thought he needed a new one.

It seems Zack will be the proud owner of a cardboard box house! Apparently there is a theory that to encourage visual development babies are better off with no other sensory interaction, so by popping them into a box with visual things for them to look at it cuts out all of the other distractions. Great, in the middle of Zack's pretty nursery is going to be a cardboard box, never mind, by the time I've pimped it up it will look fabulous.

Following visit to eye lady, I went off for a visit to the dentist, to be told I am to come back in a couple of weeks for root treatment and some fillings, fantastic.

Then we went over to meet a lady whose little boy has had a gastrostomy. (By we I mean Zack, Dan and I, not the dentist, I am sure she wouldn't be that interested.)

The little boy who is two has a Mic Key button, slightly different to the PEG but the principle is the same. She was very nice to chat to and showed us what Zack will end up with which isn't that bad and will be much better for him than his NG tube. She also told me that gastrostomy's heal very quickly which is good to know, as I was wondering how easily they are to reverse. 

Wednesday - Visit to the Advance Centre for the Scotson Technique

I suppose any parent with a child who is disadvantaged will look to find the best therapies that can help them. Sometimes we are all looking for a wonder cure that may just perform a miracle and help your child to become more, and I hate using this word, 'normal'. 

We just want to help Zack, and I will do everything I can to make sure he has every opportunity to develop to the best of his potential. This has led to many hours researching therapies, talking to other parents who have had success and failure to varying degrees with different forms of therapy. 

By chance I came across the Scotson Technique, 

http://www.scotsontechnique.com

It is a therapy developed by Linda Scotson and works on the theory, and I quote here from the website:

 "develops the potential of the uninjured brain by enhancing the respiratory and circulatory systems to deliver oxygen to the body tissues. This is achieved by the gentle manual delivery of breath and pulse-like pressures which copy the effects of breathing on the body tissues and circulatory systems."

Huh! 

Yes that's what I thought when I first read it. I'll put it into language I understand.

Basically, a child's growing brain needs a lot more oxygen to grow and develop, most children who have suffered a brain injury also suffer with their respiratory system, therefore if we can help to develop a correction in breathing, more oxygen will go to the brain helping it to develop. 

Typing this here makes it all seem a bit pie in the sky, but I do understand where the theory is going. I'll never forget the day Zack was in the incubator and for some reason he had a funny turn, his oxygen levels started to drop so the nurse gave him a quick burst of oxygen. This was when he opened his eyes for the first time and the nurse, commented on how he liked the extra oxygen. For Zack this was the turning point, this was when he started on his recovery to come home. I am a strong believer in oxygen being necessary for the healing and development of the brain. However, the therapy costs a lot of money. Whilst I would happily sell my soul to the devil to do whatever is needed for Zack I don't want to just throw money away on a whim.

Hence our road trip to West Sussex. I took to the wheel for the journey down. Dan got off lightly as Zack decided to sleep all the way there. This was not the case on the way back when i was stuck in the back seat with the Pants who decided now was a good time to be wide awake for the next four hours and have a hissy fit. 

The centre is in East Grinstead tucked away behind two buildings. we know this because we did five laps of the one way system before we got directions to the building. We met with Linda Scotson who explained in great detail the theory behind the practice, she also took a look at Zack and showed us how his back is curving and how he is using superficial muscles to try and do the things that most babies would naturally do, the problem with this is that they won't support him forever and when he is older they will collapse due to his growing height and weight.  I know Zack doesn't breathe well he sometimes, when he gets stressed, pants quite fast, almost like he is hyperventilating, he also doesn't like being on his back and tends to roll to the side when you place him there. Linda pointed out that he probably likes to be held a lot, which is true, this is because it makes it easier for him to breathe, again I have to say this is true, when you hold him, his breathing becomes calmer and more rhythmic. She also thought he was very alert and suggests that a lot of his problems are physiological rather than neurological.

We left with a lot to think about. Usually I am quite good at making a judgement call on places or people, I get a feeling about it, (I am starting to sound like that woman off the Apprentice who believed she had the gift of intuition). Anyway, with this place I don't know I just couldn't say for definite whether it will help or not. Dan and I have spoken about it over the past two days and our conclusion is the same. We can sit here at home and not go and then wonder if we did go whether it would have helped him. Or we can go, spend the money, spend our time and invest in it and it can either do nothing or it could help him a great deal. So we are going. We are taking the chance and giving it a go, at the end of the day it's only money and time. If it doesn't work it doesn't work but at  least we will have tried. 

Friday - And mummy rested

No she bloody didn't. She got up fed the Pants, winded the Pants, dressed the Pants. Went into town so Zack could pick up a Father's day present. Got back, cleaned the house, cooked the tea and finally sat down for two minutes to write this blog. There is no rest for Mummy!

I feel like I am in a very small funhouse for teeny tiny people

I realise in my last post the picture of the Bumbum chair hasn't quite worked, will try and get some new pics of it on here soon. 

I took Zack to use the sensory room in Latchford on Friday, his Auntie Karen came with us. I had booked the room for an hour all to ourselves and it cost us not a penny........I was quite impressed with that considering I was going to spend £40 on Baby Sensory Classes.

So we get to the family centre and oooh and aaah at the nice little building tucked away, then we get taken to the room and oooh and aaaah at the spinning lights. The lady explains how to use the controls for the room.  Meanwhile Zack is checking out the spinning lights and I'm starting to feel nauseous at their endless repetition around the room, I feel like I am in a very small funhouse for teeny tiny people.  The nice family centre lady leaves us to it and we get excited about the nice big comfy leather beanbags and then Auntie Karen gets extra excited about the special little seats for babies. When I spot what she means I too get extra excited, yes, ladies and gents, the sensory room only had the best seat in the world, the Bumbum chair, fantastic. This was followed by lots of screaming about the seat, then Zack got plonked in the seat, followed my more screaming of how cute he looked in the seat. 

By this time Zack really didn't care about the room and went to sleep for the full hour.  So Auntie Karen and I spent the hour gossiping, lying on comfy leather beanbags and relaxing to classical music all whilst messing about with fibre optic lights. It was very relaxing....I recommend that every office in the UK has a sensory room, they're fabulous.

The Pants and I shall be returning for another visit soon, this shall definitely be added onto our list of therapies.

This week coming up is going to be a busy one, we have appointments all week. 

One good thing though, I had a phone call today from a lady whose little boy has a PEG fitted. She is more than happy for us all to come round and visit to see what they look like. I did ask if her little boy wouldn't mind and she enthusiastically explained that he doesn't mind at all, in fact he is often curious to see if other people have them too!!

 Talking of the PEG, Zacks date has come through for his, its on the 15th July. I am very nervous about it, even though we have made the decision I still find it all very uncomfortable. I think for me this is one of the strangest things about being a parent, making decisions for another person. I very much believe that you should be responsible for your own decisions, make your own choices and be in charge of your own destiny (as much as is possible). Now here we are, making a choice for our son to have a tube fitted  into his stomach so that we can feed him. People tell me it's the right thing to do and I know it isn't permanent, but I would give anything for him to not have to go through this. I think I am more terrified of the operation (even though it is only about 10 minutes). Dan isn't worried, he thinks after what he's been through already this will be nothing for him. He also thinks he is a tough little man. I suppose he is but that still doesn't stop me from wanting to scoop him up and protect him from the whole word and lock us away safe from harm. But isn't that how most parents feel?

Fern Britton used to be overweight but she had a gastric band fitted

Sometimes I don't know what Zack has to complain about, I mean he has had a lovely week so far. 

Okay it didn't start off too well, his dad took him for his second set of jabs. I was otherwise engaged in a very serious meeting of Jeremy Kyle watching. Actually the real reason is I hate needles. I can't stand them, which is odd really considering all the bloods I had to have taken when I was pregnant and then the countless bloods and needles they stuck in me when I had Zack. I'm not bothered about them being stuck in me I just can't watch them going in, so the thought of the Pants having two jabbed into his thighs at the same time is just too much, so I wimped out. Dan is much better at that kind of thing, plus he gets made a fuss of by the nurses, they coo on about how it's nice to see the dad's bringing the children in for their vaccinations.....yeah, yeah, well his mum does other good stuff, like teaching him that Fern Britton used to be overweight but she had a gastric band fitted, but pretended she had dieted and then everyone got cross at her, but it's okay now because we all love her again and oooooh isn't she thin!!

 I digress, so, after jab Tuesday, we had health visitor Wednesday. Oh my lord, how I love these visits. My Health Visitor is very nice, very friendly, but my God, how long will she be in my life. I get asked general questions about Zack which is fine and perfectly understandable. Then we have the chat about how I'm feeling, what have I been up to, what types of things have I been doing. Aaaaaaaaaaaaaaahhhhh! I sometimes wonder if she is expecting me to break down and say I can't cope, its all awful etc. etc. I know she is only doing her job, but I feel like she doesn't believe me when I tell her I am okay and that I am actually having quite a lovely time with Zack.

After our chat Zack got his weigh in (8lb 13, he's coming on, he was only 4lb 13 when he was born). Then he peed all over me. Health visitor and I both looked at his jab puncture wounds, Zack got even more annoyed at being naked, then she wrote in his read book and made an appointment to come back and see us both in two weeks time. Can't wait.

 We went off to Nan and Grandad Price, where Zack spent the afternoon getting hours of cuddles, I continuously asked how you get rid of a Health visitor and my mum continuously asked if Zack was warm enough and did he need another blanket.

 This was all rounded off with a trip to Mothercare for a Bumbo chair. Yes, ladies and gents a bumbo chair, it is now known in our house as a bumbum chair.  I never thought the day would come where I would use words such as bumbum chair, napnap, dumdum or cheeky boy! 

I have to thank a lady I met in the hospital for posting a pic of her little girl in one on facebook for this as I would never have known about them.

Tadaaaaaaaaa

The bumbum chair!!!! Zack absolutely loves it. I popped him in it, stuck him on the kitchen work top and he was happy as larry, whilst I whizzed round feeding cats, tripping over cats and washing dishes. It's also good for getting him to practice holding his head up which he isn't bad at.

 Zack has also been sampling the delights of his own mix on the ipod. Yes he has his own playlist, it's full of kick ass tunes , such as Row, Row, Row your boat, The Farmer wants a wife and the old favourite, We've got the whole world in our Hands. The only trouble is that we can't work out how to not have them play during iTunes shuffle which means after a bit of Lady Gaga you're suddenly singing Five Little Ducks Go Swimming One Day.

Finally, Sir's eyesight is getting a little better, he is starting to follow his yellow and black book a bit more and today, he followed my eyes from right to left, all good stuff, so he can be forgiven for messing up my sophisticated taste in music. 

As soon as I switched them on he put his head back and went to sleep

Zack had a good weekend. He got pushed around Bolton, all snug in his carry cot complete with waterproof protection and enjoyed a spot of people watching in M & S cafe. His dad and I on the other hand got soaked, battled through Saturday shoppers, struggled to find a seat in said M & S caf. and got stuck in traffic on the way home.

We've nearly finished his nursery now, I must stick a picture up on here, it's looking lovely. Dan spent the afternoon putting up the curtain rails, this resulted in a lot of shouting and swearing, good job the Pants has non-perfect hearing. 

Zack has decided he loves sleeping in his own room. I tried it over a few days and he seems to like his own space and his big cot. I suppose he enjoys looking at the bright walls and pictures in his room and it is better than lying in his carrycot and just staring at grey fabric. Plus I think he was sick of sharing our room, probably couldn't sleep due to his dad's snoring and frequent jumping up in a panic thinking he has lost Zack somewhere underneath the duvet.

Did some movement exercises with his legs and arms today (Zack that is not Dan), he protests a lot about this but in the long run it will benefit him. By protesting I don't mean he screams the place down, just grumbles, typical bloke really. 

The exercises involve me turning each leg inward so they are straight. Zack has a tendency to turn his knees out to the side, which makes his feet turn outwards.  Once straight I bend them up to his tummy and then straighten them flat to the floor, all this just helps to keep his muscles and joints moving. 

He does move his legs about but not lots, I am encouraged that there is movement there. When he was in hospital his legs were always bent and very stiff. Although they are still stiff now, I think they are improving. I also put the Pants on his tummy. Plenty of tummy time is good for him, it gives him chance to strengthen his neck and back muscles. He can lift his head up and turn it to the other side and back again, but it takes a lot of effort and he gets quite frustrated at it all. 

Frustration is good, it shows determination and I would rather he have fire in his belly than lie there passively, even if he does get a bit wound up by it all. If I left it and never did anything I know that he would be extremely stiff and his muscle tone would be awful.

Tried to do a bit more with his arms but he isn't keen on this and fights with me, so I just give in....for now!

On Sunday afternoon, seen as he was so wide awake, I thought I would show him the Xmas tree lights. As soon as I switched them on he put his head back and went to sleep, I mean fast asleep. I did say he was good at playing me for a fool. Never mind, I thought to myself, there is always tomorrow young grasshopper and mummy is just as strong willed as you......I think this may be turning into a battle of epic proportions.

If it was Christmas we could open our house as a grotto

I'm sure Zack is playing me for a fool sometimes. Today was yet another visit to the hospital, this time to check out his vision. You see, for this test he needed to be wide awake, what does he decide to do, go into a coma, yep, no amount of moving about, prodding or shouting would wake him. Yesterday, at the hearing test when he needed to be asleep, wide awake, bright eyed and bushy tailed. 

Anyway when we did get him to wake up a little, the eye lady (who was very nice and I can't for the life of me remember her technical title) thinks that his vision is there he just needs more stimulation with lights and colours etc. In hospital he didn't open his eyes properly for five weeks and it is only recently people have commented on how much more alert he is. Technically he hasn't experienced enough visually, this on top of the fact that the brain may be struggling to process the images he sees doesn't help the situation. However she was confident that it will develop we just have to keep stimulating him.....this advice has lead to the following.....

1. Dan dragging out the Xmas tree lights

2. My purchase of a changing colour Finding Nemo magic wand

3. Four spiral wind blower thingy bobs for the garden

4. One Lava lamp dragged out from the back room and placed in dark hallway

If it was Christmas we could open our house as a grotto. 

Eye lady thought that the Pants eyes had good reaction in terms of his pupils constricting and dilating, which means something is getting through. All in all not a bad visit.

He gave her his best skunk eye

Today the Zacky Pants went off to have his hearing tested..yet again. The last test, was a fat old fail, apparently most children pass at a hearing of 35 decibels in each ear, Zack could hear at 60 decibels in the left and 50 in the right. We were asked to come back to re-check it, in case his ears were blocked. They gave him another four weeks to revise, I told him there was no pressure and to just do the best he could.

 

So there we were again, sat in the little hospital cubicle, with me trying to get him to sleep. You see, the baby needs to be sleeping so they can measure the brainwaves in reaction to the little clicking sounds they make in his ear. This doesn't work very well if said baby is wide awake and bouncing off the walls. Getting the Pants to go to sleep isn't too difficult, though he did find it quite amusing at one point and managed to force out a couple of smiles, (by the way the smiling thing is very rare with him, I'm still convinced at this stage it's wind). 

Anyhoo, the two lovely audiologist nurses came in, complete with computer and wires. Electrodes were put on Sir's forehead and behind his ears, then a small headphone was placed on one ear and the testing began. This usually takes about   twenty minutes for each ear, but in my case, nearly two bleedin hours as Zack decided to do lots of stretching and mooching about. At one point, he opened his eyes wide, gave me the evil eye then turned his head to the audiologist and he gave her his best skunk eye ever, that's my boy. 

By the end of it all, his pass rate hasn't change, his hearing is still the same although they also tested his inner ear, which, they tell me has some blockage. A lot of babies get this which means that it can muffle sounds which makes it more difficult to hear. We are going to see a paediatric audiologist, who will most likely send us back to do the whole test again....fantastic. 

In the meantime, we now speak to Zack in louder voices. It's very strange trying to calm a crying baby whilst shouting "There, there!". We also play lots of music for him, loudly. He loves it, you can tell he is listening, but his dad isn't impressed that he has a soft spot for Bon Jovi. I don't know how that got on to the ipod.

Eye test tomorrow.....I hope he's revised for this one.  

We've finally decided

As I've mentioned Zack always had trouble with his suck and swallow since he was born, so he has been fed via a Nasogastric tube. This is inserted through his nose and down into his stomach, all his milk, medicine etc is given through this tube. A lot of prem babies are NG tube fed at first but then most do learn to breast feed or take a bottle. 

Zack was never able to do that. I can't tell you how difficult it was to watch other babies in the Special Care Baby Unit feeding normally. In some ways we thought if we can get him to do that then he'll be okay, he'll be just like all the other babies. 

Whilst in hospital Zack got to see a Speech Therapist, not to learn how to have a nice chat with his mum and dad, but to learn how to suck and swallow. And so we started the dummy training.  Every time we fed him we would have to encourage him to suck on his dummy so he would associate sucking with his tummy being full. Zack made very slow progress, in the end we were trained by the lovely nurses on the unit in how to insert an NG tube. I tried to avoid this for a while as the thought of the whole process was difficult, his dad was a little braver and managed it fine. After I did it once, it wasn't really that hard. Poor Zack has the short straw, whilst me and his dad hover above him with the little tube he's the one who is distressed for a couple of seconds as it hits the back of his throat. It breaks my heart every time we do this, I hate the thought of causing him any pain.

We brought Zack home NG tube fed, this also meant setting up a whole host of supplies which would arrive every month containing syringes, tubes, and ph strips. 

Zack's suck has greatly improved from those first few weeks in hospital.  From not holding his dummy in and doing virtually no sucks, he can now keep in his dummy and does lots of sucks. He just isn't very co-ordinated at it all. He can now drink tiny bits of water but it is nowhere near enough volume to maintain his ability to put on weight. So we were faced with the suggestion of taking Zack to have a Percutaneous Endoscopic Gastrostomy (PEG) fitted. This is where a flexible feeding tube will be fitted into his stomach. The operation is very short and we have been advised that to help Zack with his feeding, this will be better for the medium to long term. 

It has taken us a while to come to terms with the idea of having this operation done, but we've finally decided to go ahead with it. We know that once he can feed orally and sustain enough food to thrive the peg can be removed. We also know that it will be better for him as he won't be irritated by the NG tube down his throat, we won't be constantly battling with him to stop him pulling it out and we won't be terrified that every time we put it in it's going to go down the wrong tube and into his lungs. 

Believe me this decision has been difficult, most probably because psychologically all parents want to nurture their children by feeding them and what we are doing is completely abnormal. I know of parents who have children who have had a peg fitted and it has helped them immensely, I also know of children who have had one fitted and then removed not long after they have learnt to eat.

What I have come to terms with is that getting Zack to feed orally will be a long process but I know he will do it, I have a feeling that once we can get him on to pureed food he will find it easier to manage than liquid. 

We have recently been to an appointment at the feeding clinic at Alder Hey. They were all very helpful and went through the options of how we can get Zack to feed, there was no pressure on us to opt for the operation but I know it is the best option. They also explained that due to the damage within his brain he may struggle with using the muscles in his mouth hence why he has difficulty swallowing and sucking. I know he has the ability to do it but I also know how hard it is for him. Bless him, I am so proud of him when he tries at drinking his water, sometimes he looks at me as if to say, "yeah, what's all the fuss about give me some more" and other days when he coughs or gags on it, he looks at me with shock and it makes me feel so helpless.

Oh yeah, in case you are wondering why we can't just shove a bottle in and why we are so careful feeding him...well, if Zack can't control his swallow very well he could aspirate. Essentially he could take some liquid into his lungs and not into his stomach, this means a host of problems such as serious chest infections or as the speech therapist once mentioned, effectively cause him to drown. So that's enough to put me off ever trying too much before he is ready. See I told you he is teaching me patience.

We are going to make the appointment for Zack's operation tomorrow. I know I will make that phone call with trepidation, still thinking if I am doing the right thing, still part of me not wanting to do it. But I have to do what's right for him and hopefully we can then just focus on letting him enjoy nice things to do with food rather than the awful things such as ventilators, suction machines and tubes.

One good thing though, if anyone ever needs an NG tube putting in then I'm your girl!

So I'll start at the beginning

This isn't really my blog. This is Zack's blog, I suppose for the moment I have hi-jacked it, temporarily that is, until one day he might like to tell me to shut up about what he's up to, or take over himself. 

Zack is four months old, he arrived 7 weeks early which gives him a another age of two months corrected. I like to think that buys him a little time in reaching certain developmental milestones.

A lot of people ask me how Zack is doing, and a lot of the time I get to repeat myself until in the end I just say, oh he's fine. Fine is a word I use a lot, it represents a whole host of real feelings and things I would rather not talk about. So, I have created a blog for him, for people who might be interested in how he is, for me to record a new chapter of our lives and for all those amazing parents who have children with special needs or disabilities.

So I'll start at the beginning.......

Zack was born on 13th February 2009 at 5.53am.....my pregnancy had been plodding along nicely, I had gotten to 33 weeks when I was diagnosed with pre-eclampsia. A two day stint in hospital got my high blood pressure under control and I was sent home with tablets to keep it so until it was safe for Zack to venture into this world. However, life is never how you expect it to be, and that same week two days after I left hospital, I was being driven back to the labour ward in the early hours of the morning with severe abdominal pain. To cut a long story short, the pre-eclampsia had gone from mild to severe, my blood pressure was sky high and needed to be rectified before I could have a c-section. Whilst this was happening, Zack's heartbeat started failing then I started to bleed, by the time I was rushed into theatre, Zack had no heartbeat. A placental abruption had cut off his oxygen supply, this was the source of my abdominal pain. The doctors managed to revive Zack and then he began his fight. When I came too, we were told that he was not going to make the next 12 hours, we had him christened. I always think I did quite well to remember all his names, considering I was away with the fairies on morphine. Zack was ventilated, was given medication to stop him fitting and cooled to minimise the damage to his brain.

Seven days later he was taken off the ventilator and breathed for himself, he surprised everyone, no-one thought he would get that far, I always knew he would. We remained in the special care baby unit for 7 weeks, Zack came off all his medication but was unable to suck and swallow properly, so he was fed via an NG tube. His dad and I learnt how to pass the tube and we eventually got to take him home five days before his actual due date, 31st March.

Zack had suffered severe damage to his brain, this will effect his motor skills and possibly his vision and hearing. We don't know what he will be able to do or not do until he develops and grows but I count each and every day with him a blessing. 

He is our first child, we imagined the glossy kodak image of our family life, we imagined what he may be like when he was five, ten, a young man......our lives were completely and utterly shattered. This isn't how motherhood was meant to be, visiting your child in hospital for the first 7 weeks of his life, learning to pass tubes down his nose, visiting speech therapists, physiotherapists, hospitals and paediatric consultants. But this is our life......and this is a new life, one that is teaching me patience, acceptance, introducing me to people I would never have met, and most of all allowing me to see miracles in life that would have passed me by had our lives turned out 'normal'. I don't want to sugar coat it all and say how lucky we are, or think we are special to have been given a child such as Zack. Life is difficult and full of worry, but I wouldn't have it any other way. I love my time with Zack, I love talking to other parents with children who have disabilities, their strength of character amazes me. I suppose what I am trying to say is, this life, now, is one I never ever imagined but one that I am most grateful for, it's opened my eyes to what it means to be happy.