Noah had an opthamologist and orthoptics appointment on Wednesday. We thought we'd seen an improvement. The doctor didn't see that. So gutted was putting it mildly. The doc was fuming that Noah hadn't had his pediatrics appt. He needs this so that he can be referred for his scan. We need the scan to see if there is anything else going on. The doc got his nurse to fax the hospital there and then. He told us if we hadn't heard anything in 2 weeks to call his secretary and he'd sort it. Well yesterday I got a phone call from the hospital offering us a pediatric appt for Monday morning at 9.15am. So at least things seem to be moving. The doc did talk about other tests that he thinks Noah will have done and mentioned that he thought he'd probably have to refer Noah on to Great Ormond St Hospital (GOSH). Obviously GOSH is the best of the best but its making it more official that they think that possibly its not DVM. The one positive that was said was that Noah is a smiley baby and blind babies generally don't smile. Orthoptics also raised some issues with is eye reflex's but until she's seen him a couple of times she can't really come to a conclusion. So again we wait.
I'm trying to be as positive as possible but its just not easy at the moment. The emotion on Wednesday when it all sunk in was anger. I was really surprised by that. But then I look at my gorgeous little boy and I feel so privileged to be his mummy....he really does make me feel better every time I look at him.....he is just so happy and he already has a lovely little sense of humour. And his laugh does honestly fill my heart with joy. I am just so afraid of letting him down.
Friday 28 January 2011
Tuesday 25 January 2011
Stupid milestones
When I was pregnant with Noah I signed up to several baby sites...when I put in his birth date they started sending me emails saying....your 2 week old baby and what it should be doing. I got one today...your 16 week old baby. I opened it and in it was saying your baby might start crawling soon. That really got me because I know Noah won't be attempting anything like that soon. He can sit up for a few seconds unaided and is incredibly strong so I'm sure he'll be doing it for longer soon. But he won't be crawling as for him there is no need. He can't see his toys so he won't make any attempt to get to them. I am trying to teach him to roll over but when I do and he is on his tummy he just lays there and then gets annoyed and starts yelling.
He's not gonna hit most of the normal milestones and most of the time I have accepted that....but today it was just something else to rip my heart out.
He's not gonna hit most of the normal milestones and most of the time I have accepted that....but today it was just something else to rip my heart out.
When dinosaurs roamed the earth
Alex often comes out with random comments and generally they are quite funny. The other day he turned to me and said "you know in the olden days when Chelsie was little.....was it in black & white?" Chelsie is all of 17 yrs old....well ok she is 18 in march but I hardly think that makes her ancient. And if it was olden days when she was born.....what the hell was it when I was born. I always used to take the mick out of my Mum when she said...when I was little.....I always responded with...when dinosaurs roamed the earth.....its obvious that my darling son seems to think that I am that old now. Time to get the hair dye out again methinks.
Thursday 20 January 2011
Injection...what injection
So yesterday I had to take Noah for his 2nd lot of immunisations. As usual he fell asleep in the pram almost straight away. We had a short wait in the clinic and then we were called into the nurses room. He was sound so I took him out of the pram and asked if she wanted me to pull his trousers down. He's still snoring his head off. We had a bit of a wait waiting for a 2nd nurse to come through. As they do 2 injections they like to do them at the same time. Eventually the 2nd nurse comes through and takes one look at Noah and says....aww it seems a shame to wake him up. The first nurse says I don't think we're going to. So they do all the checks on the injections and come over. I have Noah on my lap snoring away and I pin his arms to his sides just in case he does wake up. The nurses bend down and the first one counts...1, 2, 3 and on 3 they inject him. I felt him stiffen up and he gave a yell for all of about 3 seconds and he went back to sleep....if he ever woke up properly. I think its safe to say he wasn't that bothered.
Today Mum wanted to go to the Range to see if they had a vase the same as one we have for her freshly decorated living room. I have brought a lightweight stroller that lays back for when we are out and about in other peoples cars. When we got to the Range Noah was again soundo in his car seat. He wasn't best impressed with being taken out of his car seat and put into the stroller. I've used the stroller quite a few times with him and not had a problem. But from the moment we walked in the shop he was upset. Not screaming but crying and moaning. I couldn't understand why. We ended up having to hold his hand all round the shop....not an easy feat when the stroller is one that faces the front. The only time that Noah calmed down was when he was holding our hands. Normally in shops he is fine and all I could think that it was was because he was facing away from us he couldn't hear us talking and he was getting scared of all the noise. When Mick got home from work I told him what had happened. He said it was because it was a warehouse type of shop. As one of the guys he looks after who is blind has a very similar reaction in similar shops. Sadly I don't think that there is a lot I can do to help him with this and I am hoping that he'll get used to it eventually as so many shops these days are the warehouse type.
Up until then I had been doing well for a good few days. I don't forget that he can't see but when he is his happy, smiley self its so easy to forget that he has problems. I guess because at this age it has very little effect with his day to day life. We've altered somethings to help him but they have become such routine that you don't think that they are any different from what anyone has with their babies. So today was almost a slap in the face and I am guessing a sign of things to come. Luckily he seems to have got over it a lot quicker than I have. We went back to Mums and he was just playing and chatting away. And of course smiling.....his lovely, lovely gummy dribbly smile that melts my heart every time I see it. From now on it isn't worrying about what he wont be able to do....its concentrating on what he can do.
Today Mum wanted to go to the Range to see if they had a vase the same as one we have for her freshly decorated living room. I have brought a lightweight stroller that lays back for when we are out and about in other peoples cars. When we got to the Range Noah was again soundo in his car seat. He wasn't best impressed with being taken out of his car seat and put into the stroller. I've used the stroller quite a few times with him and not had a problem. But from the moment we walked in the shop he was upset. Not screaming but crying and moaning. I couldn't understand why. We ended up having to hold his hand all round the shop....not an easy feat when the stroller is one that faces the front. The only time that Noah calmed down was when he was holding our hands. Normally in shops he is fine and all I could think that it was was because he was facing away from us he couldn't hear us talking and he was getting scared of all the noise. When Mick got home from work I told him what had happened. He said it was because it was a warehouse type of shop. As one of the guys he looks after who is blind has a very similar reaction in similar shops. Sadly I don't think that there is a lot I can do to help him with this and I am hoping that he'll get used to it eventually as so many shops these days are the warehouse type.
Up until then I had been doing well for a good few days. I don't forget that he can't see but when he is his happy, smiley self its so easy to forget that he has problems. I guess because at this age it has very little effect with his day to day life. We've altered somethings to help him but they have become such routine that you don't think that they are any different from what anyone has with their babies. So today was almost a slap in the face and I am guessing a sign of things to come. Luckily he seems to have got over it a lot quicker than I have. We went back to Mums and he was just playing and chatting away. And of course smiling.....his lovely, lovely gummy dribbly smile that melts my heart every time I see it. From now on it isn't worrying about what he wont be able to do....its concentrating on what he can do.
Sunday 16 January 2011
Too tired to stand
On Saturday I decided that the boys and I would visit my bro J and sister in law B. They have been living in their house for 3 months and this is only my 2nd visit. They don't have kids but J is one of Alexs godfathers and they have both agreed to be good parents to Noah. They are big gamers and have all the up to date stuff. Which is what made Alex want to visit. He knew Uncle J had an xbox 360 and he is obsessed with the girls one. J and B also have a kinect. I'd never seen one but a couple of the girls had played it round their friends. J had joked he'd wear Alex out. I really didn't think that'd happen. But after an hour of playing Alex just turned to J and pitifully asked....can I play a game where I can sit down. I'd love to get one. We have a wii downstairs that we've had for ages and have the board for, but the kinect took it all to a whole new level. But I think we are going to have to save up for one so might be a while before we can afford one.
Saturday 15 January 2011
Emotions
Since we've been told about Noahs problems its safe to say we've been on a roller coaster of emotions.
The logical part of me correctly says that it may only be temporary and with help he should catch up with everything and that there are worse things to have.
The emotional side of me feels as though a bombs gone off in my head. One minute I can make jokes...mainly to make others feel better....then I am in turmoil. I look at my beautiful little man and I feel my heart break all over again. The unspoken questions are always there, just below the surface. What will he be able to do if he doesn't gain sight, how will I be able to help him cos I really just don't know how to, will he go to a normal school, will he have friends, how can I protect him when he gets older, is this my fault??? A million questions waiting to be asked and no answers.
And then I get a grip, and I look at my gorgeous little boy and I am thankful that he is here and I know he is surrounded with love and we will all do what we can to make his life full and happy whatever the situation.
The logical part of me correctly says that it may only be temporary and with help he should catch up with everything and that there are worse things to have.
The emotional side of me feels as though a bombs gone off in my head. One minute I can make jokes...mainly to make others feel better....then I am in turmoil. I look at my beautiful little man and I feel my heart break all over again. The unspoken questions are always there, just below the surface. What will he be able to do if he doesn't gain sight, how will I be able to help him cos I really just don't know how to, will he go to a normal school, will he have friends, how can I protect him when he gets older, is this my fault??? A million questions waiting to be asked and no answers.
And then I get a grip, and I look at my gorgeous little boy and I am thankful that he is here and I know he is surrounded with love and we will all do what we can to make his life full and happy whatever the situation.
Prom
So this year it's Charlee's prom. Chelsie had her prom 2 years ago and despite sorting her car and there being a few hiccups with people agreeing to pay and then not wanting to etc it all went very smoothly. Chelsie choose her dress from ebay....it was one that was made in china and shipped over. It was a very pretty, pale blue one that looked quite similar to wedding dress in the photos where you couldn't see it was a baby blue colour. The car they had was a 1950's gorgeous pink Cadillac. It was a stunning car.
Now with Charlee there has been nothing but hassle with the car. I said I didn't want to organise it as I had the baby and there was a large group of them originally so plenty of parents to sort it. But due to arguments and disputes the group got smaller and smaller until there is now just Charlee and her date Jake (not her boyfriend). The car she is now going in is a friends. The friend Tracy is also a hairdresser so she's doing her hair as well. We ordered her dress for her yesterday. She had an orthodontist appointment so before she went we sat here looking on the web. Despite the fact she appears to eat her own body weight in chocolate every day (cadburys should sponsor her) she is still a size 6-8. She didn't want the traditional big dress...so her dress is a Lipsy one that is fitting and quite short. She also goes a lovely colour when the sun is out so with a tan and some killer heels she'll look stunning and very likely a lot older than 16. Mind you if I had her figure now I'd probably want to wear something nice and tight.....though some of my clothes are quite tight....but sadly that's due to the expanding waist size and not because they're meant to be.
Now with Charlee there has been nothing but hassle with the car. I said I didn't want to organise it as I had the baby and there was a large group of them originally so plenty of parents to sort it. But due to arguments and disputes the group got smaller and smaller until there is now just Charlee and her date Jake (not her boyfriend). The car she is now going in is a friends. The friend Tracy is also a hairdresser so she's doing her hair as well. We ordered her dress for her yesterday. She had an orthodontist appointment so before she went we sat here looking on the web. Despite the fact she appears to eat her own body weight in chocolate every day (cadburys should sponsor her) she is still a size 6-8. She didn't want the traditional big dress...so her dress is a Lipsy one that is fitting and quite short. She also goes a lovely colour when the sun is out so with a tan and some killer heels she'll look stunning and very likely a lot older than 16. Mind you if I had her figure now I'd probably want to wear something nice and tight.....though some of my clothes are quite tight....but sadly that's due to the expanding waist size and not because they're meant to be.
Introducing us
As the name suggests I am a mum of 5. I have 3 beautiful girls Chelsie 17 (nearly 18 as she likes to remind me), Charlotte or Charlee as she calls herself is 16 and Gabrielle AKA Gabbie is 13. My two little men are 7 yr old Alexander and my baby Noah 3 months.
I am Helen 37 and I am married to Mick who is 56....quite an age gap but we have been together since I was 18 so I think we're doing quite well. The rabbits are smokey and fudge and Gary the fish is Alexs.
Both Mick and I are what you would call cuddly or as we put it short and fat and go to slimming world. The only child who's build is anything like ours at the moment is Noah and I suspect that's more to do with his age than genetics at the moment. We've been going to SW for a year now. I found out about 2 weeks after we joined I was pregnant. By the time I had Noah I had only put on 4 lbs. My first weigh in after having Noah I had lost 19.5lbs....funnily enough I won slimmer of the month. Sadly due to Noah having some health issues I didn't keep on so well with the weight loss. My way of dealing with stress is to eat. First of all he couldn't gain weight and any weight he did gain came off. When he was born he spent 5 days in SCBU due to low blood sugar. I'd had gestational diabetes and he did suffer because of it. Then he lost 14% of his body weight. Not good when you are tiny. So 1 1/2 days after his discharge from SCBU he was admitted to the childrens ward. I was made to feel so bad as I was trying to exclusively breastfeed. They kept asking if he was my first child, when i replied no 5th the comment that always followed was....oh so you do know how to breastfeed. By the time we got home he was on boob and bottle. After 2 weeks he still wasn't gaining weight and the health visitors were worried enough to insist he saw a doctor that day. The duty doctor at our clinic was amazing. He did want to refer him back to the hospital but he listened to what I had to say. Noah threw up....a lot. I had told them at SCBU and the childrens ward but no one seemed to take much notice. The doc prescribed him infant gaviscon and asked the HV's to weigh him for the next 2 days and then a decision would be made....and the weight gain was amazing and he hasn't looked back since. My poor babe had reflux. Though he was better I thought he was still bringing up to much milk (thank the lord for leather settees) and I mentioned it to our GP and she prescribed a lactose free formula and the vomiting stopped. So I still combi feed as he has to have the gaviscon with just booby milk anyway and at 12 weeks he weighed in at a very chunky 16lb 12. That put him on the 98th centile line on the growth charts. At his worst he was on the 2nd centile so quite an improvement.
Sadly that's not the end of his problems. At his 6 week check up we mentioned to the HV that he looked out the corner of his eyes and didn't seem to fix and follow. She referred him to an opthamologist and on the 29th December he said he thinks he has Delayed Visual Maturation (DVM). His eyes are structurally fine but at the moment he just can't see. He does respond to bright light and will, if able to spend hrs starring out of windows. But other than that nothing. If it is DVM he should hopefully gain some sight by 6 months. But the odd thing with DVM is that it can't be truly diagnosed till after sight has been gained. So really just a waiting game now. He has to see the opthamologist again on the 26th. I think he wants to see if there is any change. His HV is trying to sort out help for him now as he is already very developmentally delayed. Most of a babies development does seem to depend on sight. He is a very happy little fella though. He chats away for hrs. Just figured out how to suck his thumb and if you tickle his face and play with him he smiles loads and laughs away. I long for the day when my little man just looks at me and smiles. Its possible that might not happen as the blindness might be permanent.....but for now all I want is that smile.
I am Helen 37 and I am married to Mick who is 56....quite an age gap but we have been together since I was 18 so I think we're doing quite well. The rabbits are smokey and fudge and Gary the fish is Alexs.
Both Mick and I are what you would call cuddly or as we put it short and fat and go to slimming world. The only child who's build is anything like ours at the moment is Noah and I suspect that's more to do with his age than genetics at the moment. We've been going to SW for a year now. I found out about 2 weeks after we joined I was pregnant. By the time I had Noah I had only put on 4 lbs. My first weigh in after having Noah I had lost 19.5lbs....funnily enough I won slimmer of the month. Sadly due to Noah having some health issues I didn't keep on so well with the weight loss. My way of dealing with stress is to eat. First of all he couldn't gain weight and any weight he did gain came off. When he was born he spent 5 days in SCBU due to low blood sugar. I'd had gestational diabetes and he did suffer because of it. Then he lost 14% of his body weight. Not good when you are tiny. So 1 1/2 days after his discharge from SCBU he was admitted to the childrens ward. I was made to feel so bad as I was trying to exclusively breastfeed. They kept asking if he was my first child, when i replied no 5th the comment that always followed was....oh so you do know how to breastfeed. By the time we got home he was on boob and bottle. After 2 weeks he still wasn't gaining weight and the health visitors were worried enough to insist he saw a doctor that day. The duty doctor at our clinic was amazing. He did want to refer him back to the hospital but he listened to what I had to say. Noah threw up....a lot. I had told them at SCBU and the childrens ward but no one seemed to take much notice. The doc prescribed him infant gaviscon and asked the HV's to weigh him for the next 2 days and then a decision would be made....and the weight gain was amazing and he hasn't looked back since. My poor babe had reflux. Though he was better I thought he was still bringing up to much milk (thank the lord for leather settees) and I mentioned it to our GP and she prescribed a lactose free formula and the vomiting stopped. So I still combi feed as he has to have the gaviscon with just booby milk anyway and at 12 weeks he weighed in at a very chunky 16lb 12. That put him on the 98th centile line on the growth charts. At his worst he was on the 2nd centile so quite an improvement.
Sadly that's not the end of his problems. At his 6 week check up we mentioned to the HV that he looked out the corner of his eyes and didn't seem to fix and follow. She referred him to an opthamologist and on the 29th December he said he thinks he has Delayed Visual Maturation (DVM). His eyes are structurally fine but at the moment he just can't see. He does respond to bright light and will, if able to spend hrs starring out of windows. But other than that nothing. If it is DVM he should hopefully gain some sight by 6 months. But the odd thing with DVM is that it can't be truly diagnosed till after sight has been gained. So really just a waiting game now. He has to see the opthamologist again on the 26th. I think he wants to see if there is any change. His HV is trying to sort out help for him now as he is already very developmentally delayed. Most of a babies development does seem to depend on sight. He is a very happy little fella though. He chats away for hrs. Just figured out how to suck his thumb and if you tickle his face and play with him he smiles loads and laughs away. I long for the day when my little man just looks at me and smiles. Its possible that might not happen as the blindness might be permanent.....but for now all I want is that smile.
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