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!!!
Wednesday, 17 February 2010
Fund raising
We have decided to open a non-charitable trust fund for Zack. We have been thinking about doing it for some time now as we would like to raise money to help pay for specialist therapies, mobility and communication equipment that the Pant's needs now and in the future.
A friend of ours, Sarah has kindly offered to raise money for Zack by running the half marathon in April. I think she is either very brave, very fit or just likes a real good challenge. I couldn't imagine running to the local shop so 13 miles is pretty amazing. If you would like to sponsor Sarah please email her at brettandsal@talktalk.net
We want to give her a big shout out on here because we think what she's doing is fantastic and if Zack could give her a high five he would but instead she'll have to settle for a cuddle.
I have added a donate button on the site for anyone who wishes to pop a few pence in Zack's fund. All the money raised will be used to help our little guy reach his full potential and go toward therapies that could help him develop even further.
Please don't feel you have to donate I want this blog to be used for the purpose of helping others in similar situations but if you do want to well a big huge sloppy thank you from the Pants. XXXX
Tuesday, 16 February 2010
Nanny P thought he sounded like a little pigeon
Zack went for his fourth EEG. It didn't help that he got stressed on the journey there. He decided to take a dislike to his new car seat. By the time we arrived, he was clinging on to the harness for dear life, panting away with a red face. The poor little guy then had to be put in his pram which includes yet more harness, so again not happy. By the time we eventually got to the EEG department he was extremely annoyed.
The receptionist came out for a cuddle with him, I just worried that he may actually spit all over her. She was more bothered about telling me how much she loves babies and has a new 9 week old grand-daughter. I was still bothered he might spit all over her.
Just before we were about to go in Zack managed to be sick so I told the nurse to give us five minutes. This was taken to mean come over and stand next to us whilst I try and calm Zack down. So no pressure to get a move on then.
Once we were in I said that he was a bit distressed, but they continued to wind him up even more by sticking the electrodes all over his head. And to top that off popped on a nice net bonnet. Great. Zack continued to be upset. By upset I mean this. When Zack is anxious he bends his arms at the elbow and opens and shuts his hands as though he is trying to grab something in mid-air. His breathing also goes a bit quicker. This usually happens when he isn't comfortable, is getting stressed or is going to be sick. Sure enough he was sick. But the EEG continued and the filming of the EEG continued too. Nothing was stopping this session from taking place.
Whilst we were there Zack managed to do two of his subtle spasms. I pointed them out to the nurse and she said that there was a slight change in his brainwave pattern when he did it. She then came over and said ooooh lets shut your eyes now and proceeded to place her finger tips over Zack's eyelids to close them. This only added to Zack's increasing annoyance. I asked why she did this as I hadn't seen this performed during any of our other tests. She said that it was to see if it causes any changes in his brainwaves.
Test over we were free to go. Zack wasn't for going in his pram so I carried him a bit of the way but he's a weighty bloater so I popped him in his pram and told him that I can't carry him forever and he would just have to lump it. He responded by trying to hold his breath and making his face red. When back at the car I got him back in the car-seat and accidently caught his hair as I was lifting him up. This resulted in a how could you cry and then he didn't speak to me for the rest of the journey. It was a very stressful morning. Not helped that he was starving hungry too.
We stopped over at the house of Nanny/Grandad Price were he got fed and fell asleep and I got a sausage sandwich.
When he woke later on we managed to get him smiling and even some I am really enjoying myself vocal noises. To which Nanny P went "he's just made a noise, he's just made a noise". "Yeah I said that's what he does when we chat", you know like it was no big deal but really it's the most cutest little sound ever. The best was when I laid him over my knee and pretended he was superman that resulted in super laughs. Nanny P thought he sounded like a little pigeon. A cute one though.
We go to see the neurologist in about a weeks time so we should have the results of the EEG then. However I have noticed that his spasms have gone down to about 2 or 3 again. So I think that they may have increased before because he has been poorly. He has been a bit rough with a cold (which I think he caught from school) and it is common for seizures to increase when ill. That's my thinking but I suppose all will be revealed.
The receptionist came out for a cuddle with him, I just worried that he may actually spit all over her. She was more bothered about telling me how much she loves babies and has a new 9 week old grand-daughter. I was still bothered he might spit all over her.
Just before we were about to go in Zack managed to be sick so I told the nurse to give us five minutes. This was taken to mean come over and stand next to us whilst I try and calm Zack down. So no pressure to get a move on then.
Once we were in I said that he was a bit distressed, but they continued to wind him up even more by sticking the electrodes all over his head. And to top that off popped on a nice net bonnet. Great. Zack continued to be upset. By upset I mean this. When Zack is anxious he bends his arms at the elbow and opens and shuts his hands as though he is trying to grab something in mid-air. His breathing also goes a bit quicker. This usually happens when he isn't comfortable, is getting stressed or is going to be sick. Sure enough he was sick. But the EEG continued and the filming of the EEG continued too. Nothing was stopping this session from taking place.
Whilst we were there Zack managed to do two of his subtle spasms. I pointed them out to the nurse and she said that there was a slight change in his brainwave pattern when he did it. She then came over and said ooooh lets shut your eyes now and proceeded to place her finger tips over Zack's eyelids to close them. This only added to Zack's increasing annoyance. I asked why she did this as I hadn't seen this performed during any of our other tests. She said that it was to see if it causes any changes in his brainwaves.
Test over we were free to go. Zack wasn't for going in his pram so I carried him a bit of the way but he's a weighty bloater so I popped him in his pram and told him that I can't carry him forever and he would just have to lump it. He responded by trying to hold his breath and making his face red. When back at the car I got him back in the car-seat and accidently caught his hair as I was lifting him up. This resulted in a how could you cry and then he didn't speak to me for the rest of the journey. It was a very stressful morning. Not helped that he was starving hungry too.
We stopped over at the house of Nanny/Grandad Price were he got fed and fell asleep and I got a sausage sandwich.
When he woke later on we managed to get him smiling and even some I am really enjoying myself vocal noises. To which Nanny P went "he's just made a noise, he's just made a noise". "Yeah I said that's what he does when we chat", you know like it was no big deal but really it's the most cutest little sound ever. The best was when I laid him over my knee and pretended he was superman that resulted in super laughs. Nanny P thought he sounded like a little pigeon. A cute one though.
We go to see the neurologist in about a weeks time so we should have the results of the EEG then. However I have noticed that his spasms have gone down to about 2 or 3 again. So I think that they may have increased before because he has been poorly. He has been a bit rough with a cold (which I think he caught from school) and it is common for seizures to increase when ill. That's my thinking but I suppose all will be revealed.
Sunday, 14 February 2010
I could tell by his face he was a little shocked.
The chair has arrived. The OT came with it last week and oh. My. God. It's bloody bright orange.
Both Zack and Dan hated it. Zack hated it as soon as he was sat in the chair and Dan hated it on sight.
I on the other hand remained hopeful that both of them would get used to it. I was right. Zack now doesn't mind the chair and Dan, well, Dan's kind of getting used to it.
It's called a Sunbeam chair, Sunbeam....more like bloody fluorescent orange beam. Here is a link to the website that supplies the chairs so you can see what I mean.
http://www.jcmseating.co.uk/pages/sunbeam.html
The idea of the chair is to provide Zack with the right support for his body. This way we he can sit in a chair that keeps him comfortable and doesn't make him work too hard to try and keep himself in an upright position. By doing this he can then be encouraged to use his hands more as he won't be concentrating on trying to right himself all the time. The other benefit is that it keeps him symmetrical so that as he grows we can try and avoid him getting curvature in his spine and keep him straight.
Dan's first meeting with the chair happened when the OT was still at our house setting it up. I could tell by his face he was a little shocked. He asked if Zack needed all that padding and she very nicely explained the reasoning behind the chair. Dan didn't look too convinced. But she did say to us that the Pant's is still very young and developing so he might not need as much as he gets bigger. Zack by this time was in the chair doing his panic hands, going red in the face and panting. He wasn't buying into this extra support business.
The OT told us not to worry that most children hate the chair at first and to just try him with small bursts of it. Small bursts, he had a big blimmin' long burst of it the next day and was quite happy.
So far he has sat in his chair for some t.v watching. Eastenders until his Dad told him he wasn't to watch that rubbish and put Top Gear on for him. He has used it for feeding. He ate six spoons of chocolate pudding whilst in the chair. He has even had a sleep in the chair. Good old chair.
I still hate the colour.
Both Zack and Dan hated it. Zack hated it as soon as he was sat in the chair and Dan hated it on sight.
I on the other hand remained hopeful that both of them would get used to it. I was right. Zack now doesn't mind the chair and Dan, well, Dan's kind of getting used to it.
It's called a Sunbeam chair, Sunbeam....more like bloody fluorescent orange beam. Here is a link to the website that supplies the chairs so you can see what I mean.
http://www.jcmseating.co.uk/pages/sunbeam.html
The idea of the chair is to provide Zack with the right support for his body. This way we he can sit in a chair that keeps him comfortable and doesn't make him work too hard to try and keep himself in an upright position. By doing this he can then be encouraged to use his hands more as he won't be concentrating on trying to right himself all the time. The other benefit is that it keeps him symmetrical so that as he grows we can try and avoid him getting curvature in his spine and keep him straight.
Dan's first meeting with the chair happened when the OT was still at our house setting it up. I could tell by his face he was a little shocked. He asked if Zack needed all that padding and she very nicely explained the reasoning behind the chair. Dan didn't look too convinced. But she did say to us that the Pant's is still very young and developing so he might not need as much as he gets bigger. Zack by this time was in the chair doing his panic hands, going red in the face and panting. He wasn't buying into this extra support business.
The OT told us not to worry that most children hate the chair at first and to just try him with small bursts of it. Small bursts, he had a big blimmin' long burst of it the next day and was quite happy.
So far he has sat in his chair for some t.v watching. Eastenders until his Dad told him he wasn't to watch that rubbish and put Top Gear on for him. He has used it for feeding. He ate six spoons of chocolate pudding whilst in the chair. He has even had a sleep in the chair. Good old chair.
I still hate the colour.
Party, Party, Party
What I have discovered this weekend is that young children can party hard.
In your head the idea of having a small tea-party at home is a great idea in reality it's crazy, manic, loud, explosive but a wonderful way to celebrate your son's first year.
We invited friends and family round to celebrate Zack's birthday. The house soon filled up with adults and children who pretty much entertained themselves. By children entertaining themselves I mean the following;
1. A spot of football in the garden
2. A spot of tennis in the garden
3. A spot of working out how the hose-pipe works in the garden
4. A spot of fighting in the garden (ooooh that was a bit of excitement)
5. A spot of carrying around a large, fat, ginger cat in the kitchen
6. Giving said fat cat nearly a full box of biscuits (no wonder he was letting them carry him round all afternoon)
At first Zack was a bit overwhelmed with the sudden onslaught of guests so he went upstairs for a bit of a lie down. By 3pm he was back up and raring to go, which meant he got lots of cuddles off various people. He also received a plethora of presents and cards and is a very, very, lucky young man. He even managed a smile and big grin when we all sang Happy Birthday and blew out his candle. Then he needed feeding which was closely followed by a big sleep for a couple of hours. Well partying can be so exhausting.
I on the other hand spent the afternoon running round trying to talk to people, making sure they had drinks, making sure Zack was okay and trying to remember where I last placed my glass of wine. I'm sure I never finished a full glass. Dan on the other hand seemed to have a lovely time mingling and drinking lots of beer.
We all enjoyed the day and we are very grateful to everyone that came along to celebrate with us. But seriously I need a nice long lie down now.
In your head the idea of having a small tea-party at home is a great idea in reality it's crazy, manic, loud, explosive but a wonderful way to celebrate your son's first year.
We invited friends and family round to celebrate Zack's birthday. The house soon filled up with adults and children who pretty much entertained themselves. By children entertaining themselves I mean the following;
1. A spot of football in the garden
2. A spot of tennis in the garden
3. A spot of working out how the hose-pipe works in the garden
4. A spot of fighting in the garden (ooooh that was a bit of excitement)
5. A spot of carrying around a large, fat, ginger cat in the kitchen
6. Giving said fat cat nearly a full box of biscuits (no wonder he was letting them carry him round all afternoon)
At first Zack was a bit overwhelmed with the sudden onslaught of guests so he went upstairs for a bit of a lie down. By 3pm he was back up and raring to go, which meant he got lots of cuddles off various people. He also received a plethora of presents and cards and is a very, very, lucky young man. He even managed a smile and big grin when we all sang Happy Birthday and blew out his candle. Then he needed feeding which was closely followed by a big sleep for a couple of hours. Well partying can be so exhausting.
I on the other hand spent the afternoon running round trying to talk to people, making sure they had drinks, making sure Zack was okay and trying to remember where I last placed my glass of wine. I'm sure I never finished a full glass. Dan on the other hand seemed to have a lovely time mingling and drinking lots of beer.
We all enjoyed the day and we are very grateful to everyone that came along to celebrate with us. But seriously I need a nice long lie down now.
Happy 1st Birthday Zack
A year has disappeared so quickly and I can't believe that I have just spent the weekend celebrating this charming little man's 1st birthday. He entered our lives so suddenly and shook our world, everything we imagined about having a child was turned upside down and inside out. For seven weeks we lived in a waking nightmare, terrified of what might be waiting for us each and every day that we walked the corridors of the hospital. Then we got our boy home and I knew everything was going to be fine.
For some people fine might not be a word you would use to describe the first year of our journey. Roller-coaster perhaps, rocky, yes, enlightening, definitely. The sun shone that day you were born, the season began to change just as you changed me and made everything in my life brighter. Happy birthday my beautiful, wonderful son. I love you.
Monday, 8 February 2010
He comes back into the kitchen ten minutes later holding one clean spoon and and empty bowl.
Zack went to see the speech therapist today. We tagged along. She was extremely helpful and patient with my five big questions. I have been getting a tad concerned about Zack's reflux that happens a couple of hours after he has been fed.
He usually has his milk and then pukes a bit back up. Sometimes some of it stays in the back of his throat as he isn't strong enough to cough it all out. Sorry, this post is becoming a bit gross, stay with me it'll be over soon. Anyway, I asked her about this and she suggested we can try to thicken his feeds up a bit to see if that helps. If it doesn't then there are some medicines that can help with the reflux. She also said that maybe when he gets a bit bigger his stomach and all that goes along with it will become stronger and the reflux may then go away.
She thought that Zack's head control was much better and we talked about feeding. I said I didn't know how far to push him with the food and we explained to her how Dan and I have different results when feeding Zack. You see when I do it I am slightly over-cautious and give Zack a couple of spoonfuls, you give Dan a bowl of food and it comes back empty!
Let me explain. I once gave Dan a small dollop of apple puree to give to Zack, well about 15 small spoons worth with the instructions of just try him with a bit of this whilst I make the tea. He comes back into the kitchen ten minutes later holding one clean spoon and and an empty bowl. "All gone" he casually remarks. "What, all of it?" I ask quite surprised, "Yes, no problem, you just have to get the spoon to the back of his mouth, okay some of it dribbled out be he ate most of it." I go into the lounge to find Zack still alive with a apple coloured bib around his neck. "Hmm" I say "well done."
So in discussion with the speech therapist she said that perhaps we want to just aim at getting six spoonfuls in Zack. That way we have a nice balance between Dan's go for it attitude and my over-cautiousness.
Zack came away with two new toys. They were little rubber toothbrushes. Well that's what it said on the packet but they are just for rubbing over his gums to encourage him to move his tongue to different parts of his mouth. He didn't mind them. There used to be a time when he wouldn't even have a dummy in his mouth so this is a good move forward.
He still has no teeth though. I am starting to wonder if Zack will be the only person in the world to never have teeth. Oooooh he might be a medical marvel.
He usually has his milk and then pukes a bit back up. Sometimes some of it stays in the back of his throat as he isn't strong enough to cough it all out. Sorry, this post is becoming a bit gross, stay with me it'll be over soon. Anyway, I asked her about this and she suggested we can try to thicken his feeds up a bit to see if that helps. If it doesn't then there are some medicines that can help with the reflux. She also said that maybe when he gets a bit bigger his stomach and all that goes along with it will become stronger and the reflux may then go away.
She thought that Zack's head control was much better and we talked about feeding. I said I didn't know how far to push him with the food and we explained to her how Dan and I have different results when feeding Zack. You see when I do it I am slightly over-cautious and give Zack a couple of spoonfuls, you give Dan a bowl of food and it comes back empty!
Let me explain. I once gave Dan a small dollop of apple puree to give to Zack, well about 15 small spoons worth with the instructions of just try him with a bit of this whilst I make the tea. He comes back into the kitchen ten minutes later holding one clean spoon and and an empty bowl. "All gone" he casually remarks. "What, all of it?" I ask quite surprised, "Yes, no problem, you just have to get the spoon to the back of his mouth, okay some of it dribbled out be he ate most of it." I go into the lounge to find Zack still alive with a apple coloured bib around his neck. "Hmm" I say "well done."
So in discussion with the speech therapist she said that perhaps we want to just aim at getting six spoonfuls in Zack. That way we have a nice balance between Dan's go for it attitude and my over-cautiousness.
Zack came away with two new toys. They were little rubber toothbrushes. Well that's what it said on the packet but they are just for rubbing over his gums to encourage him to move his tongue to different parts of his mouth. He didn't mind them. There used to be a time when he wouldn't even have a dummy in his mouth so this is a good move forward.
He still has no teeth though. I am starting to wonder if Zack will be the only person in the world to never have teeth. Oooooh he might be a medical marvel.
Sunday, 7 February 2010
Zack's seizures have been increasing again
Zack is getting a new chair. The O.T (occupational therapist) came to see us to discuss what extra fixtures and fittings the Pants may need around the house. We talked about seating and she showed me some pictures of what is called the Sunbeam chair but shall be known to me as the ugly fabric chair. It has all the right padding and support to make sure that Zack is sitting correctly and not having to work to hard to keep his balance. The chair can also be put on a little stand so that he can sit at the table with us when we have our dinner. It looks very good but all I was thinking was who chose the colours, they are all so garish and will not go with my home colour scheme. Still, it's good that he is getting this seating so I'll just get past the bad colour choice.
I also asked her advice about car seats. Lately Zack has been getting very upset whilst in his maxi cosi seat. He has had it since birth and is usually okay in it, not moaning too much, but the last few times we have been out he has crunched up, started breathing really fast and then made a loud crying noise. He got so worked up that by the time you get him out he is sick. I imagined that it was because he was too big for it and probably uncomfortable in it. So I asked her to take a look. We popped Zack in his car seat, she took one look and said, yep, I think he is too big for this now. I think the give away was the fact that Zack looked like a squashed up fat child in the seat, even his cheeks were squished together.
Zack now has a new car seat. It's bloody huge and a pain in the arse to put him in as it is still rear facing. However, he seems happier in it and has not done any screaming. Yet. I tested it out when I took him to school on Wednesday.
At school he learnt how to take his socks off his feet, well we helped him pull his socks off his feet. He also did his stretches and thought it was very funny when they did the riding the bike song. After all the stretching, singing and stirring of a bowl of soup (don't ask), Zack flaked out so we came home a bit earlier. We also brought back his first painting for his daddy to take to work.
Zack's seizures have been increasing again. We have asked to see the neurologist a bit earlier than our planned appointment. Dan spoke to him and he said that there are definitely other things we can try for Zack. He was also pleased to hear that Zack is smiling and laughing. He suggested that this may be because his brain is beginning to compensate for the parts that are damaged or that the hypsarrythmia is getting a bit better, or it could be both. Either way it shows signs of development in Zack which is a good thing. I just don't like seeing him have the spasms again. I was getting to used to hardly seeing them at all. I have learnt that it can take a while for things to get right. With some children you have to add medications, up some doses, lower others before you can get some form of acceptable levels. Somebody did tell me that it is a rollercoaster of emotions and this is quite true. Just when you think you are getting somewhere you suddenly shoot back down again. But we are trying to remain positive and take encouragement from Zack.
Just too add coldsville has entered the house again!! I blame the infected children at school.
I also asked her advice about car seats. Lately Zack has been getting very upset whilst in his maxi cosi seat. He has had it since birth and is usually okay in it, not moaning too much, but the last few times we have been out he has crunched up, started breathing really fast and then made a loud crying noise. He got so worked up that by the time you get him out he is sick. I imagined that it was because he was too big for it and probably uncomfortable in it. So I asked her to take a look. We popped Zack in his car seat, she took one look and said, yep, I think he is too big for this now. I think the give away was the fact that Zack looked like a squashed up fat child in the seat, even his cheeks were squished together.
Zack now has a new car seat. It's bloody huge and a pain in the arse to put him in as it is still rear facing. However, he seems happier in it and has not done any screaming. Yet. I tested it out when I took him to school on Wednesday.
At school he learnt how to take his socks off his feet, well we helped him pull his socks off his feet. He also did his stretches and thought it was very funny when they did the riding the bike song. After all the stretching, singing and stirring of a bowl of soup (don't ask), Zack flaked out so we came home a bit earlier. We also brought back his first painting for his daddy to take to work.
Zack's seizures have been increasing again. We have asked to see the neurologist a bit earlier than our planned appointment. Dan spoke to him and he said that there are definitely other things we can try for Zack. He was also pleased to hear that Zack is smiling and laughing. He suggested that this may be because his brain is beginning to compensate for the parts that are damaged or that the hypsarrythmia is getting a bit better, or it could be both. Either way it shows signs of development in Zack which is a good thing. I just don't like seeing him have the spasms again. I was getting to used to hardly seeing them at all. I have learnt that it can take a while for things to get right. With some children you have to add medications, up some doses, lower others before you can get some form of acceptable levels. Somebody did tell me that it is a rollercoaster of emotions and this is quite true. Just when you think you are getting somewhere you suddenly shoot back down again. But we are trying to remain positive and take encouragement from Zack.
Just too add coldsville has entered the house again!! I blame the infected children at school.
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