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.
Saturday, 27 March 2010
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.
Saturday, 27 February 2010
"Oh, errrm, hello your back
Two nights last week both Dan and I have been out. Not together. No, we have been doing our own thang. Well for me both were social for Dan one social and one work event. So the two sets of Grandparents got to babysit.
Baby-sitting for us means me leaving a thousand instructions for them repeated at least fifty times before I put my coat on to leave the house. They both, very patiently let me dribble on even though they have managed to raise myself and Dan past childhood and into adulthood without any major accidents or injuries.
Tuesday was Team Gould's turn. Zack usually goes to bed about 8.30pm and has his little light show on. generally falling asleep at about 9pm. I then feed him without waking him (aaaah the beauty of a PEG fed baby) at about 10.30pm. So off I go to meet some friends for a spot of gossip and eating of food. I return at 10.15pm to find one wide eyed young man sat up on his Granny's knee. Zack looks at me as if to say "Oh, errrm, hello your back, yes, errrm, hi there, I seem to be still up, did you have a nice time? I'm having a super time."
"And what is he doing up?" I enquire
"Well" answers Granny Gould "we did put him to sleep and then we heard him coughing and he's had something in his throat so we brought him down here. We let him lie down on the couch and he started laughing. Oh he's been laughing and smiling away."
"Hmmmmm." I looked at Zack. "Right, well, he's certainly worked out the trick here then hasn't he?"
I found it quite funny really. I don't know if he did do it on purpose but after they had gone he did have a little look see if they were still around and then finally settled down and went to sleep. No messing with me.
Thursday was Team Price's go. As they were baby-sitting earlier I said not to worry too much about him going to bed unless he falls asleep. I get back about 9.15pm and who is still up, the Pants, up but asleep, then he wakes up.
"What's this?" I say
"Well" begins Nanny Price, "He's only just fell asleep but you won't believe what he has been doing. He's been in his little room banging his bells, kicking his legs and laughing away to himself. He was laughing next to your dad. But I just can't believe what he was like in that little room."
I was starting to see a pattern here. Zack laughs, a lot, Zack stays up a lot. Still, it's good to hear that it's because of his laughing and not because he is screaming the house down. But come Friday it was bedtime as usual...but not before at least a thousand cuddles.
I am sure he is going to have a lot of special needs
We went to see the paediatric consultant this week, the one that looks after Zack's development. She's quite nice but I think she is one of these very overly negative doctors. To be honest, I don't see the point in going to see her, the only benefit is that it gives us access to other services that we need to use.
She asked me lots of questions about Zack, weighed and measured him, messed about moving his legs etc. She suggested we go for an appointment to see the orthopaedics at Alder Hey so that they can X-ray his hips. I asked if she thought something was wrong with them. She thought the left was a little stiffer than the right, which it is and explained that sometimes children with disabilities have problems with their hips because they aren't moving them as much as other children would do normally. Fine I thought, just add it to all the other people we see.
She asked if we had seen the neurologist about Zack's MRI. I told her we did and how he explained the severity of Zack's injury and what it may mean for him but I also said at the same time he doesn't know how Zack will develop. She said to me well, I am sure he is going to have a lot of special needs. Yes I said, but it won't be through me not trying to help him will it? Oh no she said in her sympathetic voice that people put on when they are trying to treat you kindly but actually what you want is just someone to talk to you as though it isn't the worst thing in the world.
I was pissed off with her comment. I just thought, why did she have to say that to me. Does she think I have no idea what Zack's problems are or that I am deluded into thinking he might one day be running and jumping all over the place. No. I just have hope and an abundance of support for him. What are we to do with every child with a disability prop them up in a corner, pity them and just leave them in their own little world? Or do we treat them the same as any other child, give them extra stimulation, talk to them, play with them, love them and most of all have hope for them. I'm glad I only have an appointment with this doctor once or twice a year otherwise Zack and I may as well jump off a cliff. I don't need negative people in our lives so I will firmly shut the door and file that appointment away in never to be opened again.
I told Dan about our encounter and her telling me that Zack will have many special needs. His reply....
"No shit Sherlock!"
Amen to that.
She asked me lots of questions about Zack, weighed and measured him, messed about moving his legs etc. She suggested we go for an appointment to see the orthopaedics at Alder Hey so that they can X-ray his hips. I asked if she thought something was wrong with them. She thought the left was a little stiffer than the right, which it is and explained that sometimes children with disabilities have problems with their hips because they aren't moving them as much as other children would do normally. Fine I thought, just add it to all the other people we see.
She asked if we had seen the neurologist about Zack's MRI. I told her we did and how he explained the severity of Zack's injury and what it may mean for him but I also said at the same time he doesn't know how Zack will develop. She said to me well, I am sure he is going to have a lot of special needs. Yes I said, but it won't be through me not trying to help him will it? Oh no she said in her sympathetic voice that people put on when they are trying to treat you kindly but actually what you want is just someone to talk to you as though it isn't the worst thing in the world.
I was pissed off with her comment. I just thought, why did she have to say that to me. Does she think I have no idea what Zack's problems are or that I am deluded into thinking he might one day be running and jumping all over the place. No. I just have hope and an abundance of support for him. What are we to do with every child with a disability prop them up in a corner, pity them and just leave them in their own little world? Or do we treat them the same as any other child, give them extra stimulation, talk to them, play with them, love them and most of all have hope for them. I'm glad I only have an appointment with this doctor once or twice a year otherwise Zack and I may as well jump off a cliff. I don't need negative people in our lives so I will firmly shut the door and file that appointment away in never to be opened again.
I told Dan about our encounter and her telling me that Zack will have many special needs. His reply....
"No shit Sherlock!"
Amen to that.
I don't want him to have more drugs
So the Vigabatrin hasn't stopped the hypsarrythmia. I knew this, like I knew it hadn't when Zack was on the steroids.
We met with the neurologist and he explained that there a few different options we can try.
We can either carry on trying to aggressively stop the hypsarrythmia and go down the route of giving Zack two weeks of steroid injections. This only has a 30% chance of working and given that the last lot of steroids didn't work it's unlikely that this would be successful.
Second option is to carry on with the Vigabatrin and take him off the sodium valproate which he doesn't think is doing anything for Zack. As the clinical seizures we are seeing are greatly reduced and Zack has become more alert and responsive it may be that we should forget trying to stop the hypsarrythmia but just keep the clinical side under control.
Both Dan and I agreed to this plan. I don't want him to have more drugs, with horrid side-effects, just in the hope that it has a slight chance of stopping his hypsarrythmia. If he continues to progress as he is doing with the drug he is on then I'm happy with that.
We were also told about another drug that will be kept in the background in case Zack's seizures increase when we decrease the sodium valproate, I can't remember the name of it, but we can use it now Zack is a little older.
We also understand that it is highly likely that his infantile spasms will develop into epilepsy that he will have for the rest of his life. But we will just deal with things as and when they happen. The consultant thought there was a definite change in Zack and he reassured us that he will keep trying to get the seizures under control. I think this is just one of the areas that I have accepted is a war we might not be able to win but I still pray that one day it might all go away.
On a happier note I took Zack swimming again this week. The pool was blimmin' freezing plus it was only us in there so the lifeguard that was on just paced around the teaching pool continuously. I felt like we were being stalked by a tiger, very off-putting. I decided enough was enough, got us out, dressed and back to reception. The manager was there so I mentioned about the water being cold. Result. We get a free swim next time, wooohooo, if you don't ask you don't get.
After we had been to Alder Hey on Friday we went to Nanny/Grandad Price were Zack had his food and got fussed over. Then we went to the playgroup that the vision team had organised. It was busy this week and Zack nearly got kicked in the head by some little girl wearing Piedro boots. She also dropped a rubber disk on his head but he wasn't that bothered. His vision teacher popped him in the little room for safety and she remarked how he knew it wasn't his own room at home. He was feeling the sides for his usual artwork that wasn't there and waving his arm for his noisy bell. He also went into the sensory room for some light work, he got another well done and I was told that his vision is really improving, hurrah!!!
Thursday, 25 February 2010
Zack laughing
A short video of Zack laughing his husky laugh. Not looking my usual glamourous self but have to post on here as I think it's the best noise in the world. Oh and the high pitched noise that sounds like I am communicating with Dolphins is me telling Zack we are going swimming....well he doesn't have his hearing aids in!!!
http://www.youtube.com/watch?v=qiGOogPlVgI
http://www.youtube.com/watch?v=qiGOogPlVgI
Sunday, 21 February 2010
"Well who has some cement just lying about the house then?"
At the moment Zack is in his cot chillaxing too lullaby music and watching his projector lights on his new mosquito net.
We haven't had a sudden invasion of mosquitos, this is my new fab find. I was in Ikea the other week, looking for some fabrics (another story) and I came across this net that you hang over the bed in a kind of Out of Africa style. I thought this would be ideal to shine Zack's borrowed projector on and sure enough I was right. He loves it. Okay he looks like a little prince in there but all the colours transfer beautifully and now I have one peaceful, happy baby. And one mummy with even more free time.
Here's a link so you can see what I mean.
http://www.ikea.com/gb/en/catalog/products/20130878
This happy baby makes a change from yesterday when he was in a bit of mood. By mood I mean whingey. Zack still has no teeth and I can't see any coming through but his cheeks were a bit red so we thought, hmmmm maybe, he's teething. Out comes the Calpol, two minutes later, fast asleep and not a dicky bird from him all night, job done.
Yesterday afternoon I started a project. I was going to put together Zack's new swing. We had bought him the swing seat from a great special needs website called TFH http://uk.specialneedstoys.com/
Nanny/Grandad Gould had bought him a swing frame for his birthday so I thought it would be a good idea to put it all together. I started the project, laid out all my parts nice and neat, got all my nuts and bolts in nice lines. Managed to put together three bits......... Dan finished the project and I decided to do some pruning in the garden. Well for goodness sake, you should have seen the instructions on how to set up the seat. Plus I think Dan had got a bit neanderthal and decided he could do it better. That was really my plan all along. I knew he would offer to help and then just take over. Mwwaaahahahahhhhhaaaaa!!!
I got bored pruning and watching Dan swear at the swing so Zack and I went inside for a snack and a drink. Fifteen minutes later Dan walks in, an air of smugness followed behind him:
"You haven't read these instructions all the way through have you?"
Not even looking at him I said, "I have because I went and laid everything out in a neat order so I could see which bits I needed and when."
"Oh" he said and then thrust the instructions in front of my face, "turn to the back page and tell me what that says."
I sighed and turned to the back page. Oh. We were instructed to dig four square blocks fill them with cement and pop in the ground pegs.
"Well who has some cement just lying about the house then?" I tutted. "I know, just try it in the ground on its own and see how sturdy it is."
With that he went off mumbling something about health and safety. Twenty minutes later he came back.
"All done." He said. "Is it safe?"I enquired. "Yeah, it's fairly solid, we'll just have to try him in it."
Hmmmm, yeah, that's a good idea we'll use the one year old for risk assessment.
It turns out the swing was very sturdy and we let Zack experience the ooooohs and aaaaaahhhs of a swing.
We think he liked it. Well he knew something was going on because every time we pushed him to go up in the air his eyes would look upwards. He also did a quick check to the left and right when he came down. Either that or he was thinking oh my lord what have they got me doing now???
Have just checked on Prince of Persia as I assumed he would be asleep by now. No such look, wide awake enjoying the light show!!!
We haven't had a sudden invasion of mosquitos, this is my new fab find. I was in Ikea the other week, looking for some fabrics (another story) and I came across this net that you hang over the bed in a kind of Out of Africa style. I thought this would be ideal to shine Zack's borrowed projector on and sure enough I was right. He loves it. Okay he looks like a little prince in there but all the colours transfer beautifully and now I have one peaceful, happy baby. And one mummy with even more free time.
Here's a link so you can see what I mean.
http://www.ikea.com/gb/en/catalog/products/20130878
This happy baby makes a change from yesterday when he was in a bit of mood. By mood I mean whingey. Zack still has no teeth and I can't see any coming through but his cheeks were a bit red so we thought, hmmmm maybe, he's teething. Out comes the Calpol, two minutes later, fast asleep and not a dicky bird from him all night, job done.
Yesterday afternoon I started a project. I was going to put together Zack's new swing. We had bought him the swing seat from a great special needs website called TFH http://uk.specialneedstoys.com/
Nanny/Grandad Gould had bought him a swing frame for his birthday so I thought it would be a good idea to put it all together. I started the project, laid out all my parts nice and neat, got all my nuts and bolts in nice lines. Managed to put together three bits......... Dan finished the project and I decided to do some pruning in the garden. Well for goodness sake, you should have seen the instructions on how to set up the seat. Plus I think Dan had got a bit neanderthal and decided he could do it better. That was really my plan all along. I knew he would offer to help and then just take over. Mwwaaahahahahhhhhaaaaa!!!
I got bored pruning and watching Dan swear at the swing so Zack and I went inside for a snack and a drink. Fifteen minutes later Dan walks in, an air of smugness followed behind him:
"You haven't read these instructions all the way through have you?"
Not even looking at him I said, "I have because I went and laid everything out in a neat order so I could see which bits I needed and when."
"Oh" he said and then thrust the instructions in front of my face, "turn to the back page and tell me what that says."
I sighed and turned to the back page. Oh. We were instructed to dig four square blocks fill them with cement and pop in the ground pegs.
"Well who has some cement just lying about the house then?" I tutted. "I know, just try it in the ground on its own and see how sturdy it is."
With that he went off mumbling something about health and safety. Twenty minutes later he came back.
"All done." He said. "Is it safe?"I enquired. "Yeah, it's fairly solid, we'll just have to try him in it."
Hmmmm, yeah, that's a good idea we'll use the one year old for risk assessment.
It turns out the swing was very sturdy and we let Zack experience the ooooohs and aaaaaahhhs of a swing.
We think he liked it. Well he knew something was going on because every time we pushed him to go up in the air his eyes would look upwards. He also did a quick check to the left and right when he came down. Either that or he was thinking oh my lord what have they got me doing now???
Have just checked on Prince of Persia as I assumed he would be asleep by now. No such look, wide awake enjoying the light show!!!
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