Zack is enjoying a few days with both mummy and daddy this week. Dan has got some time off work so we are getting to do lots of fun family things, like mowing the lawn and cleaning the house.
Only joking, we just did a bit of that in between Dan experiencing a day in the life of Linzi and Zack.
We went to our dietician appointment today. This includes measuring and weighing the Pants. Zack continues to put weight on and has grown in height. All good stuff so we carry on as we are. Any more fast weight increasing and someone will be a right old porky pig. He is currently at 120% ratio of weight to height which means tubby. He needs more stretching and less widening but who cares, he'll catch up soon enough.
We went swimming this afternoon. Zack enjoyed his swim support ring thing. He was more bothered about looking at everything than us pulling him round the pool. Dan enjoyed taking him swimming but not as much as last time as whilst we were there Zack had a few of his infantile spasms, which also caused Dan to go into worry mode.
He has had quite a few today (Zack's spasms not Dan's worries). I think we may be giving the consultant a call just to see what he thinks. We aren't sure if the 2mls of Sodium Valproate Zack was on was just keeping an edge on them or if he needs a new drug. It's so hard to tell.
I have been having a look at a few sites about tube feeding children and in particular weaning kids off being tube fed. There is a place in Austria that specialise in weaning children, known as Graz
They do it by reducing the amount of tube feeds that a child gets so that they start to experience hunger and thirst. They also allow kids to play with food rather than forcing them to eat.
They let the child naturally request the food. They have a very high success rate but I think a lot of these children are not necessarily kids who have disabilities such as the brain injury Zack has, they seem to have a bit more motivation to reach for food and toys.
Zack doesn't do any of that (yet) so I am not sure how it would work for him. However there is no doubt that Zack can be motivated by thirst and hunger. When he had his PEG fitted and he came back from the operation, he was so thirsty that Dan gave him a gauze with water and he sucked it dry.
I just think that our NHS don't have the encouragement or the time to focus on getting children weaned off feeding tubes. They seem to see them as solving a problem for a child that can't eat. I think we need to take a new approach to trying to encourage Zack to feed as I am pretty sure the problem now is not because he struggles with his swallowing.
Monday, 12 April 2010
Saturday, 10 April 2010
It would be a good idea for Zack and for myself to have a bit of separation
Zack had his physio this week. He did very well, good head lifting during tummy time and he even moved his head over to the left to look in the mirror. He tends to like his head on the right side so we are trying to encourage movements to all sides including alignment in the centre. He also tried to throw himself over from his front to his side. He would throw his head back a bit to try and shift his weight. His physio was impressed as he was doing this of his own accord rather than due to a muscle spasm.
The Pants also got to have a go of the physio's gym ball. She shifted his weight from right to left whilst he was on it to get him used to correcting his balance. I told her we have one of these gym ball things (bought when I thought it would be of valuable use in my fitness regime that lasted all of two days). She advised me to give it a try and perhaps just steady it against the couch. Hmmmm, little did she know that previously we had been rolling Zack all around on the gym ball. Whaaaaaat? He likes it.
Today we went to visit Zoe's Place in Liverpool. It is a hospice for children with life-limiting conditions as well as complex disabilities. They offer parents respite care for their children aged from birth to five years.
When you hear the word hospice you imagine a sad place with sick children but it isn't like that. They have a fantastic facility that is open 24-7. It has two little bedrooms each with three cots, a fantastic sensory room, a hydrotherapy pool, a massive play room and it's all set within quiet, beautiful grounds.
I have been thinking of late that it would be a good idea for Zack and for myself to have a bit of separation. It won't be long before he will be able to go to a nursery class a couple of afternoons a week and at the moment I am very nervous about leaving him with anyone other than family. But I know it will do him and myself good to get used to being in situations without each other. I mean lots of people put their children in to nurseries. But I feel so guilty about leaving him, I guess I am extremely protective of him because I see the barriers and difficulties that his disabilities can create.
Sometimes I feel that I am the only person who understands they way he communicates. I suppose I am though because I spend so much time with him. However, I have to let him try to experience new things without me, perhaps this is another way that may help in his development.
They gave me an information pack to complete. Effectively it is like a little handbook for Zack. It lists all his likes and dislikes, his way of communicating, his condition, his medications, his typical day. This way they can put together a care assessment for him so that when he does go and spend time there they know exactly what he needs. Every child has a one to one person in the day and at night time the ratio is one person to two babies. I don't think I could ever leave him there overnight. For now I think I will try an afternoon but even the very thought of it makes me feel quite sick.
The Pants also got to have a go of the physio's gym ball. She shifted his weight from right to left whilst he was on it to get him used to correcting his balance. I told her we have one of these gym ball things (bought when I thought it would be of valuable use in my fitness regime that lasted all of two days). She advised me to give it a try and perhaps just steady it against the couch. Hmmmm, little did she know that previously we had been rolling Zack all around on the gym ball. Whaaaaaat? He likes it.
Today we went to visit Zoe's Place in Liverpool. It is a hospice for children with life-limiting conditions as well as complex disabilities. They offer parents respite care for their children aged from birth to five years.
When you hear the word hospice you imagine a sad place with sick children but it isn't like that. They have a fantastic facility that is open 24-7. It has two little bedrooms each with three cots, a fantastic sensory room, a hydrotherapy pool, a massive play room and it's all set within quiet, beautiful grounds.
I have been thinking of late that it would be a good idea for Zack and for myself to have a bit of separation. It won't be long before he will be able to go to a nursery class a couple of afternoons a week and at the moment I am very nervous about leaving him with anyone other than family. But I know it will do him and myself good to get used to being in situations without each other. I mean lots of people put their children in to nurseries. But I feel so guilty about leaving him, I guess I am extremely protective of him because I see the barriers and difficulties that his disabilities can create.
Sometimes I feel that I am the only person who understands they way he communicates. I suppose I am though because I spend so much time with him. However, I have to let him try to experience new things without me, perhaps this is another way that may help in his development.
They gave me an information pack to complete. Effectively it is like a little handbook for Zack. It lists all his likes and dislikes, his way of communicating, his condition, his medications, his typical day. This way they can put together a care assessment for him so that when he does go and spend time there they know exactly what he needs. Every child has a one to one person in the day and at night time the ratio is one person to two babies. I don't think I could ever leave him there overnight. For now I think I will try an afternoon but even the very thought of it makes me feel quite sick.
The teeth growing is taking ages
Zack has been a bit under the weather this week. His infantile spasms have increased slightly. I had got used to seeing hardly any at all so a sudden jump to about ten a day makes you question the reason for the increase. It could be because he has been a bit poorly, it could be because he seems to have five top teeth coming through, or it could be because he is now off the Sodium Valproate.
We have decided to wait a couple of weeks to see if they decrease. That way if they do we can assume the increase has been due to him being not quite right health wise. If they continue to increase then we are back to the drawing board and I am afraid a new drug may be introduced.
Yes, these teeth things are causing a lot of bother. For ages and ages I thought Zack was never going to get any teeth. I thought he would permanently have his gummy smile, that he might be the first baby in the world to never grow teeth. Now, his top gums look all swollen and you can see the tips of quite a few teeth. Nothing on the bottom though which is weird. But then Zack doesn't do things in any normal fashion. The teeth growing is taking ages, he has been extra drooly and the whole thing is compounded because he can't put anything in his mouth to chew and break the gums.
To help we have taken to giving him our finger to chew. He really does give it a good old chew when you pop it in his mouth. But what he loves more than anything is a bit of Marks and Spencer chocolate mousse. Oh yes, not your plain old Tesco mousse just the good stuff.
Come to think of it I think it was the chocolate mousse that made him a bit sick the other day. Maybe I should re-think that one.
Anyhow, here are some pictures of the mess. Along with a video clip of an amuse chocolate covered pants. Enjoy.
Can I just point out here that at the end of this giggle fest is what I think some video footage of Dan and Brett shaking their booty to Womaniser, their favourite tune. It was a complete accident how that got on there and now do you know what? I just can't get it off.....oooopsey.
We have decided to wait a couple of weeks to see if they decrease. That way if they do we can assume the increase has been due to him being not quite right health wise. If they continue to increase then we are back to the drawing board and I am afraid a new drug may be introduced.
Yes, these teeth things are causing a lot of bother. For ages and ages I thought Zack was never going to get any teeth. I thought he would permanently have his gummy smile, that he might be the first baby in the world to never grow teeth. Now, his top gums look all swollen and you can see the tips of quite a few teeth. Nothing on the bottom though which is weird. But then Zack doesn't do things in any normal fashion. The teeth growing is taking ages, he has been extra drooly and the whole thing is compounded because he can't put anything in his mouth to chew and break the gums.
To help we have taken to giving him our finger to chew. He really does give it a good old chew when you pop it in his mouth. But what he loves more than anything is a bit of Marks and Spencer chocolate mousse. Oh yes, not your plain old Tesco mousse just the good stuff.
Come to think of it I think it was the chocolate mousse that made him a bit sick the other day. Maybe I should re-think that one.
Anyhow, here are some pictures of the mess. Along with a video clip of an amuse chocolate covered pants. Enjoy.
Can I just point out here that at the end of this giggle fest is what I think some video footage of Dan and Brett shaking their booty to Womaniser, their favourite tune. It was a complete accident how that got on there and now do you know what? I just can't get it off.....oooopsey.
Saturday, 3 April 2010
My Montage 4/3/10 at OneTrueMedia.com
Here's a mushy little treat for you Zack fans. A montage of his first year from birth. Makes me realise just how much he has come on. Here's the amazing Pants.
I don't think she was that keen on him
Zack went to Saturday Fun Club today. He had a power nap. Decided it would be a good idea to relax on a stuffed snake, look at some toys, get covered in a bright pink feather boa and fall asleep.
Met some more families at the fun club, it is part of the sessions run by Families United. Nice to talk to lots of different people about themselves and their children with disabilities.
An Easter Egg hunt had been set up. All the smaller children went first. Their goodies were hidden in the ball pool. Zack had never been in a ball pool before. Even though he now has his own. Nanny/Grandad Gould bought it for him for Easter but we haven't set it up yet. He liked the ball pool. He found a stuffed bunny rabbit, he's called him Edward. The Pants was entranced by another little girl around about his age, but I don't think she was that keen on him. He moved on. Back to living it up in the ball pool. He also had a cuddle off a nice lady who said she would like another one next time. I don't think he'll refuse.
Appointments have slackened which is so much better for the two of us. We can now do lots of fun stuff, get his therapy completed and have more play time. Lately I have been trying to get Zack to sit upright. It's coming. If I have him face me and he straddles my legs he can almost keep himself upright. He's quite wobbly but at least he is experiencing falling from side to side to encourage his understanding of balance and movement. Sometimes he really likes it if you move his arms up and down very quickly. He gets so excited, he smiles, his eyes get really wide and he looks straight at me. It's so great to see joy in his eyes.
Met some more families at the fun club, it is part of the sessions run by Families United. Nice to talk to lots of different people about themselves and their children with disabilities.
An Easter Egg hunt had been set up. All the smaller children went first. Their goodies were hidden in the ball pool. Zack had never been in a ball pool before. Even though he now has his own. Nanny/Grandad Gould bought it for him for Easter but we haven't set it up yet. He liked the ball pool. He found a stuffed bunny rabbit, he's called him Edward. The Pants was entranced by another little girl around about his age, but I don't think she was that keen on him. He moved on. Back to living it up in the ball pool. He also had a cuddle off a nice lady who said she would like another one next time. I don't think he'll refuse.
Appointments have slackened which is so much better for the two of us. We can now do lots of fun stuff, get his therapy completed and have more play time. Lately I have been trying to get Zack to sit upright. It's coming. If I have him face me and he straddles my legs he can almost keep himself upright. He's quite wobbly but at least he is experiencing falling from side to side to encourage his understanding of balance and movement. Sometimes he really likes it if you move his arms up and down very quickly. He gets so excited, he smiles, his eyes get really wide and he looks straight at me. It's so great to see joy in his eyes.
Saturday, 27 March 2010
It was sheer bliss
We took the Pants swimming the other day. Decided to try out a new swimming baths and Zack's snappy little yellow rubber ring.
This baths was much nicer than the usual one plus the life-guard chappy threw some toys into the water for us to use. We hadn't used the swimming aid for Zack before so weren't sure if he would like it or not.
Ha. Why worry. Zack's as laid back as they come. He sat in his little yellow boat and loved it. He had a good look around the swimming pool and even tried to track things around the room, this is a good thing. It all helps with his vision development. He didn't move his legs whilst in the water so we did it for him and he liked being pulled about the pool. If we were on holiday I reckon I wouldn't be able to get Dan or Zack out of the pool. I reckon he could have fell asleep in there.
Zack had another new experience at the swimming baths, the showers. I thought I would try him and see if he liked it. Like it? He loved it. At one point when the water fell on his head he tipped it back closed his eyes and looked like he was in heaven. I almost expected him to say, "aaaaahhhhhh the water feels so nice have you brought my Wash and Go mum, because I only take one bottle into the shower."
I had a day release today. I left Dan in charge of Zack whilst I went on a little galavant to Manchester. It was great until my feet started to hurt and my arms ached from carrying my bags. Dan and Zack picked me up from the station. In fact I was met by Dan zooming round the corner with Zack laughing his head off in the back. Apparently when daddy drives you get to fly round the bends really fast and its hysterical. Safe. i don't think so. But muchos funny.
This baths was much nicer than the usual one plus the life-guard chappy threw some toys into the water for us to use. We hadn't used the swimming aid for Zack before so weren't sure if he would like it or not.
Ha. Why worry. Zack's as laid back as they come. He sat in his little yellow boat and loved it. He had a good look around the swimming pool and even tried to track things around the room, this is a good thing. It all helps with his vision development. He didn't move his legs whilst in the water so we did it for him and he liked being pulled about the pool. If we were on holiday I reckon I wouldn't be able to get Dan or Zack out of the pool. I reckon he could have fell asleep in there.
Zack had another new experience at the swimming baths, the showers. I thought I would try him and see if he liked it. Like it? He loved it. At one point when the water fell on his head he tipped it back closed his eyes and looked like he was in heaven. I almost expected him to say, "aaaaahhhhhh the water feels so nice have you brought my Wash and Go mum, because I only take one bottle into the shower."
I had a day release today. I left Dan in charge of Zack whilst I went on a little galavant to Manchester. It was great until my feet started to hurt and my arms ached from carrying my bags. Dan and Zack picked me up from the station. In fact I was met by Dan zooming round the corner with Zack laughing his head off in the back. Apparently when daddy drives you get to fly round the bends really fast and its hysterical. Safe. i don't think so. But muchos funny.
Thursday, 25 March 2010
New toys and new positions are just the funniest things in the whole world.
Zack had a visit from our favourite ladies from the visions specialist department. The Pants had just finished off a rather large breakfast so decided he would take a little nap. His new teacher had brought him a little apron to try on, not that they were going to get him baking or anything, oh no, the apron had velcro strips on the front to which were fixed lots of different fabrics and toys to feel.
When the Pants woke up he tried on the apron. He reminded me of a butcher but seemed to quite like the feely things that were stuck to him. His new favourite teacher is going to make him his own apron and a special feely floor mat to go underneath his Little Room. She has provided me with some information on Canaan Barrie signing, a form of on body signing for deafblind children.
Of all the people we see this gang is the most useful, helpful, positive and encouraging bunch. They are just brimming with ideas and handy suggestions.
Zack also did a little showcase of his head raising whilst on the floor. To which he received much praise and ooooh clever boy comments. I gave him a round of applause he quite likes a few claps when he's doing something well, I mean I can hardly give him a little treaty snack can I, so a clapping is what he gets and a cuddle too.
We discussed the fact that Zack has a tendency to hold his head to the left as that is his best field of vision. We are now trying to encourage him to look from the centre (mid-line) and to the right. We decided that it would be a good idea to do a change round of all his toys in his little room. After they left I did a complete overhaul of his crib. I moved his favourite bells to the right and put loads of new things all to the middle and right hand side. No more fun stuff to the left. I popped Zack in his little room. He knew things had changed. He spread out his arms to the side and just lay there quietly. Then up comes the right hand, bingo, he hits the bells. Well that was it. New toys and new positions are just the funniest things in the whole world. I heard him aughing away to himself. When I came to see what the commotion was and shouted to him this warranted more laughing to the point where he started having a coughing fit. He got pulled out after that to calm down. I honestly can't see how it's funny but he just loves it.
We went for our meeting with the neurologist today. It was short and sweet. Not much to report to him only that Zack was continuing to do well on the reduction in his sodium valproate. He thought that Zack is doing brilliantly and that even compared to when he last saw him he thought he was holding his head much better. I looked at Zack who was peering over his left side. Oh, that isn't his best I said, he can do much better than that, but I was pleased that he thought Zack's minimal effort at head control was better.
Zack has been very good this week. Less sicky, bit better in his car seat but still elements of him hating it. I am now convinced that it may be his expression of a kids paddy when he gets all frustrated in the seat.
On two occasions now Zack has decided to shout for us when in bed. When I say shout I don't mean he goes "Hey mum can you get your arse up here please". No it's a baby gurgle that kind of sounds like a laugh but is a bit of a whinge. When I go in to see what's up with him, I am met with a grin and more chat. He just wants some company and then he goes to sleep. I suppose this is a really good thing. Me thinks he is becoming more aware of wanting company and shouts in order to get it, either that or he's doing further training in how to wrap us round his little finger.
When the Pants woke up he tried on the apron. He reminded me of a butcher but seemed to quite like the feely things that were stuck to him. His new favourite teacher is going to make him his own apron and a special feely floor mat to go underneath his Little Room. She has provided me with some information on Canaan Barrie signing, a form of on body signing for deafblind children.
Of all the people we see this gang is the most useful, helpful, positive and encouraging bunch. They are just brimming with ideas and handy suggestions.
Zack also did a little showcase of his head raising whilst on the floor. To which he received much praise and ooooh clever boy comments. I gave him a round of applause he quite likes a few claps when he's doing something well, I mean I can hardly give him a little treaty snack can I, so a clapping is what he gets and a cuddle too.
We discussed the fact that Zack has a tendency to hold his head to the left as that is his best field of vision. We are now trying to encourage him to look from the centre (mid-line) and to the right. We decided that it would be a good idea to do a change round of all his toys in his little room. After they left I did a complete overhaul of his crib. I moved his favourite bells to the right and put loads of new things all to the middle and right hand side. No more fun stuff to the left. I popped Zack in his little room. He knew things had changed. He spread out his arms to the side and just lay there quietly. Then up comes the right hand, bingo, he hits the bells. Well that was it. New toys and new positions are just the funniest things in the whole world. I heard him aughing away to himself. When I came to see what the commotion was and shouted to him this warranted more laughing to the point where he started having a coughing fit. He got pulled out after that to calm down. I honestly can't see how it's funny but he just loves it.
We went for our meeting with the neurologist today. It was short and sweet. Not much to report to him only that Zack was continuing to do well on the reduction in his sodium valproate. He thought that Zack is doing brilliantly and that even compared to when he last saw him he thought he was holding his head much better. I looked at Zack who was peering over his left side. Oh, that isn't his best I said, he can do much better than that, but I was pleased that he thought Zack's minimal effort at head control was better.
Zack has been very good this week. Less sicky, bit better in his car seat but still elements of him hating it. I am now convinced that it may be his expression of a kids paddy when he gets all frustrated in the seat.
On two occasions now Zack has decided to shout for us when in bed. When I say shout I don't mean he goes "Hey mum can you get your arse up here please". No it's a baby gurgle that kind of sounds like a laugh but is a bit of a whinge. When I go in to see what's up with him, I am met with a grin and more chat. He just wants some company and then he goes to sleep. I suppose this is a really good thing. Me thinks he is becoming more aware of wanting company and shouts in order to get it, either that or he's doing further training in how to wrap us round his little finger.
Saturday, 20 March 2010
I just cannot be arsed with ticking off more boxes for him.
Reflux has been our main concern this week. Zack is still managing to deliver some of his food back to his mouth and it is driving us all crazy.
It is usually worse during the car journeys. Not sure if the reflux is making him annoyed or he is getting so annoyed it's causing him to reflux. Either way it ain't pleasant. I have heard that some children are so bad that their clothes are changed about twenty times a day. Zack only refluxes a small amount of food after each feed which I guess isn't so bad but you can tell it is getting on his nerves and I am sick of having a permanent tissue shoved in my back pocket.
I managed to get hold of the Dr. and we discussed (in the waiting room as you do) Zack having some medicine. She mentioned something that helps to empty the stomach a bit quicker. The idea being that some children have a slow digestive system, so the quicker that empties the less likely it is to come back out the other way. Now I am a bit wary to type this but for the past three days Zack has been quite good. Today hardly any reflux and good in his car seat. Not sure if the threat of medication has made him behave or the fact that we are giving him three feeds a day has eased his digestive system. Hoping tomorrow will be a good day too as I am already thinking we may have cracked it.
Today we went along to a local charity group called Families United. They are a lovely group of people and most of them have a child or children with disabilities. The charity holds a fun club for children every other Saturday, go on outings together and have parent get-togethers. It was nice to talk to other people in a similar boat, where everything just feels normal.
Zack decided he would just monitor the situation. I got a child stuck to my face. Yes a gorgeous little boy ran up, threw his arms round me and stuck his lips to my face. He wasn't for moving. He did eventually but I enjoyed the cuddle. Zack remained unimpressed.
It was also good to hear positive stories about children with special needs and see how much fun they all have. I have added a link to the side of the blog as I think they are a brilliant, worthwhile group.
Zack had his physio this week. Same old same old except with me asking lots of questions about standing frames and lycra suits (a later post I think). The physio mentioned the development journal for children with visual impairments. It is a huge folder with all the milestones broken down into really tiny steps. We already have one I told her and mentioned that it was useful out of politeness. Truth is I hardly look at the bloody thing. Zack is measured and queried so often I just cannot be arsed with ticking off more boxes for him. In fact I almost feel like it's given to parents of children with special needs to make them feel better about the tiny things their children can do. I can be proud of my son without ticking a box so I'd rather not use it. And whilst I am on this rant, if I have any more children I have no interest in red books, milestones or any other flippin' government checklist. What will be, will be. The end.
Okay rant over.
Zack also met with the audiologist consultant. I told her how I didn't think there was any difference in his hearing with or without his hearing aids in. She stood behind him and called his name and clapped her hands. He half smiled at me. Even though he didn't turn his head round I knew he could hear her but if you could see the look on his face. I know he was thinking stupid lady, I know you are shouting me but there is no way I can be bothered turning round to look at you, I don't do tricks you know.
She also tested his fluid in his middle ear. Yep. Still has that, which isn't helping his hearing. If that disappeared it could make a dramatic improvement to his hearing. It can clear up of it's own accord or he could have grommets fitted. As I don't want him to have any operations until he is bigger I am happy to carry on with the hearing aids. The consultant said he was probably hearing more with them in. I did ask why he can now hear more than before, she made some comment about it's probably because he is getting older that things are working a bit better. But that makes no sense to me because I don't think hearing stuff has anything to do with being older. Yet again I'll do what I think is right for him but to be honest I sometimes think all this consultant lark is just guess work.
On a very sad note, Mary, my other beloved baby has gone. Yes, my little Mazda has left the building. For a whole year I managed to keep my claws into her avoiding Dan's threat of "we really need to sell the car you know.' But now we do need a proper car, that can fit a big boy car seat in and after all, as much as I loved Mary she doesn't come close to Zack. Who knows one day she could come back.
It is usually worse during the car journeys. Not sure if the reflux is making him annoyed or he is getting so annoyed it's causing him to reflux. Either way it ain't pleasant. I have heard that some children are so bad that their clothes are changed about twenty times a day. Zack only refluxes a small amount of food after each feed which I guess isn't so bad but you can tell it is getting on his nerves and I am sick of having a permanent tissue shoved in my back pocket.
I managed to get hold of the Dr. and we discussed (in the waiting room as you do) Zack having some medicine. She mentioned something that helps to empty the stomach a bit quicker. The idea being that some children have a slow digestive system, so the quicker that empties the less likely it is to come back out the other way. Now I am a bit wary to type this but for the past three days Zack has been quite good. Today hardly any reflux and good in his car seat. Not sure if the threat of medication has made him behave or the fact that we are giving him three feeds a day has eased his digestive system. Hoping tomorrow will be a good day too as I am already thinking we may have cracked it.
Today we went along to a local charity group called Families United. They are a lovely group of people and most of them have a child or children with disabilities. The charity holds a fun club for children every other Saturday, go on outings together and have parent get-togethers. It was nice to talk to other people in a similar boat, where everything just feels normal.
Zack decided he would just monitor the situation. I got a child stuck to my face. Yes a gorgeous little boy ran up, threw his arms round me and stuck his lips to my face. He wasn't for moving. He did eventually but I enjoyed the cuddle. Zack remained unimpressed.
It was also good to hear positive stories about children with special needs and see how much fun they all have. I have added a link to the side of the blog as I think they are a brilliant, worthwhile group.
Zack had his physio this week. Same old same old except with me asking lots of questions about standing frames and lycra suits (a later post I think). The physio mentioned the development journal for children with visual impairments. It is a huge folder with all the milestones broken down into really tiny steps. We already have one I told her and mentioned that it was useful out of politeness. Truth is I hardly look at the bloody thing. Zack is measured and queried so often I just cannot be arsed with ticking off more boxes for him. In fact I almost feel like it's given to parents of children with special needs to make them feel better about the tiny things their children can do. I can be proud of my son without ticking a box so I'd rather not use it. And whilst I am on this rant, if I have any more children I have no interest in red books, milestones or any other flippin' government checklist. What will be, will be. The end.
Okay rant over.
Zack also met with the audiologist consultant. I told her how I didn't think there was any difference in his hearing with or without his hearing aids in. She stood behind him and called his name and clapped her hands. He half smiled at me. Even though he didn't turn his head round I knew he could hear her but if you could see the look on his face. I know he was thinking stupid lady, I know you are shouting me but there is no way I can be bothered turning round to look at you, I don't do tricks you know.
She also tested his fluid in his middle ear. Yep. Still has that, which isn't helping his hearing. If that disappeared it could make a dramatic improvement to his hearing. It can clear up of it's own accord or he could have grommets fitted. As I don't want him to have any operations until he is bigger I am happy to carry on with the hearing aids. The consultant said he was probably hearing more with them in. I did ask why he can now hear more than before, she made some comment about it's probably because he is getting older that things are working a bit better. But that makes no sense to me because I don't think hearing stuff has anything to do with being older. Yet again I'll do what I think is right for him but to be honest I sometimes think all this consultant lark is just guess work.
On a very sad note, Mary, my other beloved baby has gone. Yes, my little Mazda has left the building. For a whole year I managed to keep my claws into her avoiding Dan's threat of "we really need to sell the car you know.' But now we do need a proper car, that can fit a big boy car seat in and after all, as much as I loved Mary she doesn't come close to Zack. Who knows one day she could come back.
Sunday, 14 March 2010
Happy Mother's Day all you Mums, Mummy's and Mamas
Mother's Day last year Zack was allowed out of hospital for the first time. I took him home on the proviso that I brought him back to hospital again. It was so wonderful bringing him home. I remember how tiny he was as I walked throughout our house telling him that this was his home. Showing him his room that we had lovingly decorated. Introducing him to the cats, well pointing at the cats who had been made to sit in the back garden. By the end of it I didn't want to take him back but we did. Back to his hospital bed, back to the monitors and the institution. But not for long, it would only be a few more days then he came home for good.
This Mother's Day as I type this he is lying asleep next to me so very different to the small baby that once lay in a hospital cot. I can honestly say I think I am even more in love with him than in the beginning. I am so proud of all he has achieved. I am still excited when he makes his happy laughing sound in reaction to things that amuse him, I love the fact that he can now prop himself up on his arms and I am in awe how, given his awful injury he continues to make every effort to try and sit upright.
I am very lucky to have such a beautiful boy and very fortunate to be a mummy. It is without doubt the best most fantastical feeling in the world. Thank you Pants for making me very happy. Oh and thanks for my CD it's fab. xxxx
This Mother's Day as I type this he is lying asleep next to me so very different to the small baby that once lay in a hospital cot. I can honestly say I think I am even more in love with him than in the beginning. I am so proud of all he has achieved. I am still excited when he makes his happy laughing sound in reaction to things that amuse him, I love the fact that he can now prop himself up on his arms and I am in awe how, given his awful injury he continues to make every effort to try and sit upright.
I am very lucky to have such a beautiful boy and very fortunate to be a mummy. It is without doubt the best most fantastical feeling in the world. Thank you Pants for making me very happy. Oh and thanks for my CD it's fab. xxxx
Tuesday, 9 March 2010
Success. No hand grabby.
So far so good. We have used the new pump a few times now. It has become our special friend. It's so easy to use and best of all Zack usually falls asleep when being fed which frees up some more of my time to do some pottering about.
As for stopping his vomiting it has minimised it somewhat, much better than before. I just don't think we have the timings quite right yet. We have tried to up the speed a little to see if that is any better as at first, I think we were far too slow. I will say it is so nice not to be sat holding a 60ml syringe in the air for twenty minutes. I feel that we should give the pump a name she's such a great addition to the household.
We even took our new friend out with us at the weekend. We went on a trip to Southport. Which for the record is like the nearest place to us but takes an age to get to and I just can't work out why, it's a regular X-file.
We packed up Zack's little rucksack with his machine, milk and giving set and off we went. As we got stuck in traffic Dan started Zack off on a lunchtime snack and it was great, no messing whatsoever. Now we can go out for full days and not have to worry about feeding sessions.
Zack is still a bit unhappy with his car seat and pram. He is still getting a bit wound up in the car seat but not to the extent where he was clinging to the straps and crunched up like he has done on recent trips. I put a folded up blanket underneath his bum to try and boost him up a bit more and that seemed to help a bit. On the journey back from Southport he was a little annoyed but eventually calmed down. I think it also helped that I held his hand and chatted to him.
Zack has a lovely Quinny pram which he is okay in but only for short bursts. I got to thinking maybe I should try him in a cheap little stroller and see if he is any better mood wise. With a plan in place we both went off to Babies r Us to check out the strollers for today's hip babies. I found a nice cheap one that let the seat recline back into various positions, had a little shopping basket and was easy to put up and down in an instance. At £39.99 with a £5.00 off coupon I thought to hell with a named brand, this is either going to work for him or he'll hate it so I am not spending a small fortune on one.
Got us both home and thought right lets test out the new wheels. It was a lovely day which often gives way to people feeling rather jolly and positive. Amazing what a bit of sunshine does for us. I fixed the stroller up, put all the accessories on, popped my letter for the postbox in the shopping basket (novelty for me as we don't have one on the other pram) and stuck Zack in the stroller. He looked at me, I looked at him. Fastened his straps and then the hands started the grabby motion. "Right" I said, "this is the way it's going to be, we are going for a walk, you are not going to get carried back up the road, you are going to stay in your new stroller and we are going to give it a go." Yeah, that'll do it, he understood everything I just said. Zack carried on with his hand grabbing, I shoved a blanket over his legs and off we went. Round 1 to Mummy.
Hahahahahaaaaaa! Success. No hand grabby. Just one little boy being pushed down the road in his new stroller. Cheap it may be but he likes it. Okay, he had a little bit of I don't like it but on the whole much better than the other one. We took him out again today. Dan hadn't seen him in his push chair and thought he looked like a proper little grown up boy in it. Again, he didn't seem to mind it. Dan said it's probably a novelty to him and he'll decide he's going to hate it in a few days time. I said too bad, he's staying in it for good now. I am hoping that he remains happy with this form of transport as I am fast running out of ideas.
As for stopping his vomiting it has minimised it somewhat, much better than before. I just don't think we have the timings quite right yet. We have tried to up the speed a little to see if that is any better as at first, I think we were far too slow. I will say it is so nice not to be sat holding a 60ml syringe in the air for twenty minutes. I feel that we should give the pump a name she's such a great addition to the household.
We even took our new friend out with us at the weekend. We went on a trip to Southport. Which for the record is like the nearest place to us but takes an age to get to and I just can't work out why, it's a regular X-file.
We packed up Zack's little rucksack with his machine, milk and giving set and off we went. As we got stuck in traffic Dan started Zack off on a lunchtime snack and it was great, no messing whatsoever. Now we can go out for full days and not have to worry about feeding sessions.
Zack is still a bit unhappy with his car seat and pram. He is still getting a bit wound up in the car seat but not to the extent where he was clinging to the straps and crunched up like he has done on recent trips. I put a folded up blanket underneath his bum to try and boost him up a bit more and that seemed to help a bit. On the journey back from Southport he was a little annoyed but eventually calmed down. I think it also helped that I held his hand and chatted to him.
Zack has a lovely Quinny pram which he is okay in but only for short bursts. I got to thinking maybe I should try him in a cheap little stroller and see if he is any better mood wise. With a plan in place we both went off to Babies r Us to check out the strollers for today's hip babies. I found a nice cheap one that let the seat recline back into various positions, had a little shopping basket and was easy to put up and down in an instance. At £39.99 with a £5.00 off coupon I thought to hell with a named brand, this is either going to work for him or he'll hate it so I am not spending a small fortune on one.
Got us both home and thought right lets test out the new wheels. It was a lovely day which often gives way to people feeling rather jolly and positive. Amazing what a bit of sunshine does for us. I fixed the stroller up, put all the accessories on, popped my letter for the postbox in the shopping basket (novelty for me as we don't have one on the other pram) and stuck Zack in the stroller. He looked at me, I looked at him. Fastened his straps and then the hands started the grabby motion. "Right" I said, "this is the way it's going to be, we are going for a walk, you are not going to get carried back up the road, you are going to stay in your new stroller and we are going to give it a go." Yeah, that'll do it, he understood everything I just said. Zack carried on with his hand grabbing, I shoved a blanket over his legs and off we went. Round 1 to Mummy.
Hahahahahaaaaaa! Success. No hand grabby. Just one little boy being pushed down the road in his new stroller. Cheap it may be but he likes it. Okay, he had a little bit of I don't like it but on the whole much better than the other one. We took him out again today. Dan hadn't seen him in his push chair and thought he looked like a proper little grown up boy in it. Again, he didn't seem to mind it. Dan said it's probably a novelty to him and he'll decide he's going to hate it in a few days time. I said too bad, he's staying in it for good now. I am hoping that he remains happy with this form of transport as I am fast running out of ideas.
Friday, 5 March 2010
we also had pump training
In pursuit of trying to stop Zack's occasional ability to throw up his food, Dan and I have decided to use a pump to feed the Pants. So today we not only had a pump delivered but we also had pump training.
Please don't imagine some giant pump mechanism that we have to push up and down in order to feed Zack, no that would just be too weird. It is simply a small little machine that allows you to programme in how much food you want to give Zack via his PEG over a certain allotted time scale.
The usual way to feed Zack is to hold up a syringe with milk which then goes through a tube into his body. This is called bolus feeding and means he can have about 165mls of milk in 15 minutes, as it goes in quickly it sometimes causes him to throw up a little. With the pump we can give him the same amount over say an hour and we don't have to sit with him whilst we do so, it will also slow the food down, meaning less refluxing.
I was quite against this at first as I felt that we were just hooking him up to a machine. However I now see the benefits. The machine is tiny. It means we can feed Zack early in the morning and in the evening when he goes to bed. This frees up more time to do physio and other therapies as well as going out and family fun time. Talking of going out. We get a little rucksack that holds his food and the pump. We can now go out all day and take his food with us, set it all up and carry on with whatever we are doing. Fantastic.
Hopefully this method of feeding him will mean less reflux and more free time. I think when Zack was smaller I couldn't imagine using a machine but now as he is bigger I can see what benefits it has for him and us. I suppose you just need time to adjust to new ideas, way up the pros and cons and then consider whether as a family it is right for you. So tomorrow we are giving it a go. Pumping here we come.
Please don't imagine some giant pump mechanism that we have to push up and down in order to feed Zack, no that would just be too weird. It is simply a small little machine that allows you to programme in how much food you want to give Zack via his PEG over a certain allotted time scale.
The usual way to feed Zack is to hold up a syringe with milk which then goes through a tube into his body. This is called bolus feeding and means he can have about 165mls of milk in 15 minutes, as it goes in quickly it sometimes causes him to throw up a little. With the pump we can give him the same amount over say an hour and we don't have to sit with him whilst we do so, it will also slow the food down, meaning less refluxing.
I was quite against this at first as I felt that we were just hooking him up to a machine. However I now see the benefits. The machine is tiny. It means we can feed Zack early in the morning and in the evening when he goes to bed. This frees up more time to do physio and other therapies as well as going out and family fun time. Talking of going out. We get a little rucksack that holds his food and the pump. We can now go out all day and take his food with us, set it all up and carry on with whatever we are doing. Fantastic.
Hopefully this method of feeding him will mean less reflux and more free time. I think when Zack was smaller I couldn't imagine using a machine but now as he is bigger I can see what benefits it has for him and us. I suppose you just need time to adjust to new ideas, way up the pros and cons and then consider whether as a family it is right for you. So tomorrow we are giving it a go. Pumping here we come.
Subscribe to:
Posts (Atom)