Monday 7 November 2011
CFC/Costello Conference: Part 3, Halloween Disco
Marcus loves a good party and the CFC/Costello Halloween dinner and disco was no exception! He tucked into at least 3 platefuls of food, savouring all the delicious flavours that were on offer then Marcus took to the dance floor in a BIG way while we took the opportunity to relax and chat to the other families. Marcus was thrilled to win the best fancy dress prize and Joely enjoyed making friends and having fun! 
Saturday 29 October 2011
Day 2: Part 1
We were all a little on the tired side this morning after a rather late and unsettled night. Marcus took a while to calm down and woke about five times in the night. However, we were excited to hear from the doctors and after a hearty breakfast, we settled the kids into the crèche where the kids had fun and got to know each other.
The programme kicked off with a welcome and introduction from our Chair and Consultant Geneticist, Dr Bronwyn Kerr, who fed back on some of the areas of interest from the US Conference. The rest of the day was then filled with talks from Dr Emma Burkitt-Wright (Geneticist); Rebecca Howarth (Speech and Language Therapist); Dr Nilima Malaiya (Consultant Cardiologist); Kay Hood (Consultant Dentist) and Frances Binns (Therapeutic and Specialised Play Consultant).
It would be impossible and unnecessary to try to report back on everything which was said throughout the day, you should be able to access the recordings of the presentations through
the Costello Kids website. However, I will take the time to comment on the things which
interested me the most.
Firstly, we heard about a research study, from Dr Emma Burkitt-Wright, whereby the use of statins were successful in helping to un-lock the learning potential of children who suffer from disorders of the RAS-MAPK pathway, in particular NF1. Statins are a safe and well used drug which are commonly used to treat raised cholesterol and I would love it if Marcus were able to benefit from such a chance. It was interesting to learn that chemotherapy drugs could also affect the RAS-MAPK pathway - one day, a discovery may be made in the name of cancer research which may also benefit our children.
We also heard about possible heart problems and while Marcus' heart problems are mild and stable at the moment, it really helps to be aware of the possible problems which might occur in the future. It means that I know what questions I should ask at our next cardiac review.
Sleep-problems are ridiculously common in children with CFC and Costello and I will definitely be starting a sleep diary to take to our next general Paediatric review. Dr Kerr was spot on when she said that parents often don't remember exactly how many times we get up or how long we are awake for. She also explained that you need to keep a sleep diary after beginning treatment in order to accurately gauge the impact of the drugs. I'm not keen on Marcus using Alimemazine syrup again but I think melatonin may be worth another shot after hearing that many CFC and Costello patients suffer with disturbed sleep cycles, possibly due to the chiari malformation which often occurs in the brain.
Next, I was totally blown away by a really ingenious suggestion from the consultant dentist, Kay Hood. She understood how difficult it is to brush the teeth of kids who suffer with oral hyper-sensitivity. She suggested arming yourself with two tooth-brushes: one three sided tooth brush and one with a thick rubber handle. Next you need to place the thick handled brush between the teeth on one side so they can clamp down on it- meanwhile, you are free to clean the opposite side with your three sided brush. I will definitely be trying this technique when I have sourced the correct tools. We also heard about tooth mousse which sounds like it's worth a try too.
I felt really emotional after hearing Rebecca Howarth (Speech and Language therapist)speak because I felt that she was completely in tune with what we had gone through as parents of children with feeding problems. She didn't necessarily teach me anything that I hadn't already learnt on our 7 year feeding journey but I really wish I'd met her years ago; she would have reassured me that none of this was my fault and told me to take a step back and not to pressurise Marcus. I'm sure her presentation would have helped the parents of the younger CFC/Costello patients enormously. I will definitely be e-mailing her for some oral-stimulation activities and maybe she'll be able to help us with the next stage of Marcus' feeding journey.
Finally, I found the presentation on transition from Francis Binns very interesting. I was planning to skip this one as we have other, more current issues to deal with but I'm really glad I stayed. Cath Stone's words really struck a chord when she spoke about her daughter, Helaina 17, and how she felt about her transition from childhood into adulthood. I tend to live each day at time, concentrating on the present, but I learnt that we need to start planning early and preparing ourselves for Marcus' adulthood. I was especially interested to hear about Helaina's single page health profile and her 'All About Me' review. I think Marcus could benefit from something like that now, especially when meeting a new teacher, doctor, health-care worker, social worker or therapist.
All in all, we all enjoyed a fantastic day. I'm sure every parent took something valuable away from the presentations and discussions. Thank you to Colin and Cath and the Doctors for all of their hard work - we really appreciate their efforts.
Watch out for the next installment: The Halloween Disco!!
The programme kicked off with a welcome and introduction from our Chair and Consultant Geneticist, Dr Bronwyn Kerr, who fed back on some of the areas of interest from the US Conference. The rest of the day was then filled with talks from Dr Emma Burkitt-Wright (Geneticist); Rebecca Howarth (Speech and Language Therapist); Dr Nilima Malaiya (Consultant Cardiologist); Kay Hood (Consultant Dentist) and Frances Binns (Therapeutic and Specialised Play Consultant).
It would be impossible and unnecessary to try to report back on everything which was said throughout the day, you should be able to access the recordings of the presentations through
the Costello Kids website. However, I will take the time to comment on the things which
interested me the most.
Firstly, we heard about a research study, from Dr Emma Burkitt-Wright, whereby the use of statins were successful in helping to un-lock the learning potential of children who suffer from disorders of the RAS-MAPK pathway, in particular NF1. Statins are a safe and well used drug which are commonly used to treat raised cholesterol and I would love it if Marcus were able to benefit from such a chance. It was interesting to learn that chemotherapy drugs could also affect the RAS-MAPK pathway - one day, a discovery may be made in the name of cancer research which may also benefit our children.
We also heard about possible heart problems and while Marcus' heart problems are mild and stable at the moment, it really helps to be aware of the possible problems which might occur in the future. It means that I know what questions I should ask at our next cardiac review.
Sleep-problems are ridiculously common in children with CFC and Costello and I will definitely be starting a sleep diary to take to our next general Paediatric review. Dr Kerr was spot on when she said that parents often don't remember exactly how many times we get up or how long we are awake for. She also explained that you need to keep a sleep diary after beginning treatment in order to accurately gauge the impact of the drugs. I'm not keen on Marcus using Alimemazine syrup again but I think melatonin may be worth another shot after hearing that many CFC and Costello patients suffer with disturbed sleep cycles, possibly due to the chiari malformation which often occurs in the brain.
Next, I was totally blown away by a really ingenious suggestion from the consultant dentist, Kay Hood. She understood how difficult it is to brush the teeth of kids who suffer with oral hyper-sensitivity. She suggested arming yourself with two tooth-brushes: one three sided tooth brush and one with a thick rubber handle. Next you need to place the thick handled brush between the teeth on one side so they can clamp down on it- meanwhile, you are free to clean the opposite side with your three sided brush. I will definitely be trying this technique when I have sourced the correct tools. We also heard about tooth mousse which sounds like it's worth a try too.
I felt really emotional after hearing Rebecca Howarth (Speech and Language therapist)speak because I felt that she was completely in tune with what we had gone through as parents of children with feeding problems. She didn't necessarily teach me anything that I hadn't already learnt on our 7 year feeding journey but I really wish I'd met her years ago; she would have reassured me that none of this was my fault and told me to take a step back and not to pressurise Marcus. I'm sure her presentation would have helped the parents of the younger CFC/Costello patients enormously. I will definitely be e-mailing her for some oral-stimulation activities and maybe she'll be able to help us with the next stage of Marcus' feeding journey.
Finally, I found the presentation on transition from Francis Binns very interesting. I was planning to skip this one as we have other, more current issues to deal with but I'm really glad I stayed. Cath Stone's words really struck a chord when she spoke about her daughter, Helaina 17, and how she felt about her transition from childhood into adulthood. I tend to live each day at time, concentrating on the present, but I learnt that we need to start planning early and preparing ourselves for Marcus' adulthood. I was especially interested to hear about Helaina's single page health profile and her 'All About Me' review. I think Marcus could benefit from something like that now, especially when meeting a new teacher, doctor, health-care worker, social worker or therapist.
All in all, we all enjoyed a fantastic day. I'm sure every parent took something valuable away from the presentations and discussions. Thank you to Colin and Cath and the Doctors for all of their hard work - we really appreciate their efforts.
Watch out for the next installment: The Halloween Disco!!
Friday 28 October 2011
Costello/CFC UK Conference, Northampton 2011
Day One - Welcome Meeting.
Last night we enjoyed an informal meeting, catching up with old friends and meeting lots of new ones. We had met several families before back in 2007 at the Orlando CFC Conference but we haven't had the opportunity to attend a conference since then. It's an extraordinary feeling, meeting people who have had similar experiences to us, almost like finding a long-lost family. Everyone is so warm and friendly and it's feels good to share experiences.
Back in 2007, I think we were still emotionally raw after Marcus' traumatic start in life. Complete with Marcus' new diagnosis, the Orlando conference held a mirror up to show us our new life and what the future probably held. Today, I can look at the older children and their parents with a huge amount of admiration and respect but without fear. In those early days, I was very afraid of what the future held for Marcus and, more selfishly, ourselves.
Last night, I also watched and was inspired by the parents of the younger children and babies with CFC and Costello and admired their strength and the obvious love and pride they have for their extraordinary families. I don't often have time to stop and think about the way others regard us but I hope people look at us in the same way.
It's been a very enjoyable evening and I'm now really looking forward to the medical discussions tomorrow.
Last night we enjoyed an informal meeting, catching up with old friends and meeting lots of new ones. We had met several families before back in 2007 at the Orlando CFC Conference but we haven't had the opportunity to attend a conference since then. It's an extraordinary feeling, meeting people who have had similar experiences to us, almost like finding a long-lost family. Everyone is so warm and friendly and it's feels good to share experiences.
Back in 2007, I think we were still emotionally raw after Marcus' traumatic start in life. Complete with Marcus' new diagnosis, the Orlando conference held a mirror up to show us our new life and what the future probably held. Today, I can look at the older children and their parents with a huge amount of admiration and respect but without fear. In those early days, I was very afraid of what the future held for Marcus and, more selfishly, ourselves.
Last night, I also watched and was inspired by the parents of the younger children and babies with CFC and Costello and admired their strength and the obvious love and pride they have for their extraordinary families. I don't often have time to stop and think about the way others regard us but I hope people look at us in the same way.
It's been a very enjoyable evening and I'm now really looking forward to the medical discussions tomorrow.
Saturday 27 August 2011
Sponsored Swim!!
Our buddy, Joe Hunter is swimming the channel solo in a fortnight and has kindly offered to pledge all sponsorship money to CFC International. Please, please take the time to donate, we would like to raise as much money as possible to help those suffering from this very, very rare genetic condition.
http://www.cfcsyndrome.org/pdf/newsletter/CFCNewsletterApril11.pdf
www.cfcsyndrome.org
http://www.cfcsyndrome.org/pdf/newsletter/CFCNewsletterApril11.pdf
www.cfcsyndrome.org
Thursday 4 August 2011
Packing!
Don't you just hate packing? As I begin to write this, I'm aware that I'm simply delaying the inevitable. Tomorrow, we will be setting off on our road trip and today, I need to pack everything bar the proverbial kitchen sink. Gary's at work today and as chief organiser in our household, he's written lists, placed all the kids suitcases in their rooms and made every attempt to spur me into action. The truth is, in my home life, I like to do things at the last minute, I don't like to plan ahead any more than necessary and I have a tendency to procrastinate. But I can't put it off any longer ...
Wednesday 22 June 2011
Tuesday 21 June 2011
Uncle Joe is swimming the English Channel for CFC!!
Our friend, Joe Hunter, is swimming the English Channel this weekend and has decided to raise money for CFC International and to raise funds to buy a specialist bike/trike for my son, Marcus. If you would like to make a donation to CFC International see www.cfcsyndrome.org. If you would like to make a donation towards Marcus' bike, either contact myself or Joe Hunter privately. Alternatively, you could leave me a comment at the end of this blog entry and I'll tell you how to make a donation.
Marcus, suffers from Cardio-Facio-Cutaneous Syndrome. (For more detailed information about the syndrome itself see www.cfcsydrome.org).
CFC syndrome is very rare and affects less than 300 individuals worldwide. It is a genetic disorder caused by a random mutation. To put this into context, no- one else in our families either carries the gene or suffers from CFC Syndrome therefore we were not at any greater risk of having a disabled child. I enjoyed a normal pregnancy with no unusual complications, a normal labour and gave birth three weeks early to a seemingly healthy baby boy weighing in at 7lb 15oz.
We brought Marcus home the next day to meet his 19 month old sister and we began to adjust to life as the parents of two very young children. Quickly we began to realise that all was not well with Marcus. He vomited frequently, wasn't growing, fed very poorly and slept all day and night. He contracted RSV at three weeks and practically gave up feeding all together. I'd sit and dribble 2oz of breast milk into him over the course of an hour only for him to vomit it all back up again. This continued day and night. By seven weeks, Marcus was still a full pound lighter than his birth weight and he was admitted to the local hospital. He was subjected to a full array of investigative procedures and the doctors tried various drugs to alleviate the sickness, to no avail. I kept hoping that the next drug would make a difference but none of them did. No- one could tell me what was wrong with Marcus or why he wasn't feeding or growing. He underwent serious amounts of genetic testing and each and every one came back all clear. The doctors were flummoxed and that is terrifying as a parent - doctors are supposed to have all the answers ....
Marcus was eventually admitted to the Royal Victoria Infirmary in Newcastle to be fed intravenously whilst the doctors there tried to find a way of managing his condition. We remained there for 3 months initially and Marcus was readmitted many times throughout the first two years of his life. Throughout this time, Doctors still had no idea why Marcus was having so many problems and Marcus' general Paediatrician always tells me that he really did not expect Marcus to live past his first birthday.
Marcus' health has improved steadily since those early days and we are truly thankful for this. Marcus was diagnosed with CFC syndrome at the age of 2 and we put in touch with Brenda Conger from CFC International. All of sudden, thanks to Brenda, we had lots of information, a 'CFC Family' and a CFC conference to look forward to. Once we'd recovered from the initial shock of the actual diagnosis, Gary and I were able to read all the brochures and studies provided by CFC International; talk to and meet other families in the UK and around the world. Suddenly, everything made sense, we could accept that we had a child who would need extra help and care throughout his life. Marcus needs have changed a lot since he was born. He's no longer tube fed or medicated round the clock but his develmental delay is significant. He is 6 1/2 and cannot speak and is not toilet trained. He is unsteady on his feet and cannot manage stairs unaided. Children with CFC are prone to seizures to we must be on the look out for those and Marcus has a growth hormone injection every night before bed.
The very existence of CFC International means that we are not alone; the other parents often offer advice and solutions when the medics cannot. Whenever we're feeling isolated, marginalised or just plain fed-up and exhausted - there are always other CFC parents on the e-mail list serve, ready to offer comfort, advice, support or just an ear. It's very reassuring to know you are not alone and bringing up a disabled child can be very lonely at times.
Please donate. Try to imagine having a child with a condition so rare and have difficulties that are so extreme that no-one is able to understand or explain them to you. CFC International gives us so much; please help me to show how grateful I am by voting for them. Thank you.
Marcus, suffers from Cardio-Facio-Cutaneous Syndrome. (For more detailed information about the syndrome itself see www.cfcsydrome.org).
CFC syndrome is very rare and affects less than 300 individuals worldwide. It is a genetic disorder caused by a random mutation. To put this into context, no- one else in our families either carries the gene or suffers from CFC Syndrome therefore we were not at any greater risk of having a disabled child. I enjoyed a normal pregnancy with no unusual complications, a normal labour and gave birth three weeks early to a seemingly healthy baby boy weighing in at 7lb 15oz.
We brought Marcus home the next day to meet his 19 month old sister and we began to adjust to life as the parents of two very young children. Quickly we began to realise that all was not well with Marcus. He vomited frequently, wasn't growing, fed very poorly and slept all day and night. He contracted RSV at three weeks and practically gave up feeding all together. I'd sit and dribble 2oz of breast milk into him over the course of an hour only for him to vomit it all back up again. This continued day and night. By seven weeks, Marcus was still a full pound lighter than his birth weight and he was admitted to the local hospital. He was subjected to a full array of investigative procedures and the doctors tried various drugs to alleviate the sickness, to no avail. I kept hoping that the next drug would make a difference but none of them did. No- one could tell me what was wrong with Marcus or why he wasn't feeding or growing. He underwent serious amounts of genetic testing and each and every one came back all clear. The doctors were flummoxed and that is terrifying as a parent - doctors are supposed to have all the answers ....
Marcus was eventually admitted to the Royal Victoria Infirmary in Newcastle to be fed intravenously whilst the doctors there tried to find a way of managing his condition. We remained there for 3 months initially and Marcus was readmitted many times throughout the first two years of his life. Throughout this time, Doctors still had no idea why Marcus was having so many problems and Marcus' general Paediatrician always tells me that he really did not expect Marcus to live past his first birthday.
Marcus' health has improved steadily since those early days and we are truly thankful for this. Marcus was diagnosed with CFC syndrome at the age of 2 and we put in touch with Brenda Conger from CFC International. All of sudden, thanks to Brenda, we had lots of information, a 'CFC Family' and a CFC conference to look forward to. Once we'd recovered from the initial shock of the actual diagnosis, Gary and I were able to read all the brochures and studies provided by CFC International; talk to and meet other families in the UK and around the world. Suddenly, everything made sense, we could accept that we had a child who would need extra help and care throughout his life. Marcus needs have changed a lot since he was born. He's no longer tube fed or medicated round the clock but his develmental delay is significant. He is 6 1/2 and cannot speak and is not toilet trained. He is unsteady on his feet and cannot manage stairs unaided. Children with CFC are prone to seizures to we must be on the look out for those and Marcus has a growth hormone injection every night before bed.
The very existence of CFC International means that we are not alone; the other parents often offer advice and solutions when the medics cannot. Whenever we're feeling isolated, marginalised or just plain fed-up and exhausted - there are always other CFC parents on the e-mail list serve, ready to offer comfort, advice, support or just an ear. It's very reassuring to know you are not alone and bringing up a disabled child can be very lonely at times.
Please donate. Try to imagine having a child with a condition so rare and have difficulties that are so extreme that no-one is able to understand or explain them to you. CFC International gives us so much; please help me to show how grateful I am by voting for them. Thank you.
Saturday 4 June 2011
Hello All
It's been a while since I posted. Once again, I've been swept along with the chaos of family life with barely a moment to stop and reflect.
Marcus continues to make great progress and he had a great annual review with both teachers from each school agreeing that the dual placements really serving Marcus well. He is becoming more independent, his speech is developing slowly and his physical strength continues to improve all the time. His baby sister, Romilly, is providing the best therapy ever. They have taken to mimicking each other an Marcus tries to copy the noises she makes; Romilly shouts - Marcus shouts and vice versa. Romilly is also picking up on the Makaton really quickly and her favourite sign is "STOP"! Very useful with a big brother who likes to dive on her ankles and rugby tackle her to the ground.
I can't help but compare my children, especially Marcus and Romilly because she is beginning to overtake Marcus now in some areas of development. Already, she is much more agile and quicker on her feet; her sounds and words are clearer. In Marcus' favour, his thinking and understanding is much more sophisticated and thank goodness, we have learnt Makaton so that he can express himself to us. Marcus still loves books and stories but he especially likes to make up stories with people and characters he knows. His stories usually include helicopters, hospitals and Balamory!!
We're still working on the bike for Marcus, we've found and trialled the perfect model so hopefully we'll be able to purchase that soon.
We've enjoyed a fantastic half-term. Really relaxing and we've really enjoyed the warm weather. Yesterday, we went to Monk Park Farm; Romilly and Marcus really enjoyed the guinea pigs and the sand pit. YES, you heard that right. Marcus has spent every holiday on the beach, hiding in his buggy with his hat over his face: hating the sun and hating the sand. Yesterday, my little man managed to enjoy both! And, he also managed to eat some cake in the cafe. Now that's what I call a progress!
Marcus continues to make great progress and he had a great annual review with both teachers from each school agreeing that the dual placements really serving Marcus well. He is becoming more independent, his speech is developing slowly and his physical strength continues to improve all the time. His baby sister, Romilly, is providing the best therapy ever. They have taken to mimicking each other an Marcus tries to copy the noises she makes; Romilly shouts - Marcus shouts and vice versa. Romilly is also picking up on the Makaton really quickly and her favourite sign is "STOP"! Very useful with a big brother who likes to dive on her ankles and rugby tackle her to the ground.
I can't help but compare my children, especially Marcus and Romilly because she is beginning to overtake Marcus now in some areas of development. Already, she is much more agile and quicker on her feet; her sounds and words are clearer. In Marcus' favour, his thinking and understanding is much more sophisticated and thank goodness, we have learnt Makaton so that he can express himself to us. Marcus still loves books and stories but he especially likes to make up stories with people and characters he knows. His stories usually include helicopters, hospitals and Balamory!!
We're still working on the bike for Marcus, we've found and trialled the perfect model so hopefully we'll be able to purchase that soon.
We've enjoyed a fantastic half-term. Really relaxing and we've really enjoyed the warm weather. Yesterday, we went to Monk Park Farm; Romilly and Marcus really enjoyed the guinea pigs and the sand pit. YES, you heard that right. Marcus has spent every holiday on the beach, hiding in his buggy with his hat over his face: hating the sun and hating the sand. Yesterday, my little man managed to enjoy both! And, he also managed to eat some cake in the cafe. Now that's what I call a progress!
Sunday 20 March 2011
The first time is ALWAYS special!!
The first time your child achieves a milestone is undoubtedly special but when you are made to wait and wonder whether your child will ever achieve the usual milestones; when they eventually do, the moment is truly magical.
Marcus has global developmental delay so each and every milestone has been incredibly difficult achieve. At 12 months of age, he was tube-fed for 20 hours per day and was still at the same stage of development as a newborn baby. He could not even lift his head up independently let alone sit, roll, crawl or walk. I'd hear other mothers worrying about their children being slow to walk or waking in the night for milk and I'd want to scream at them - don't you realise how lucky you are? Of course, I understood that it wasn't their fault and I didn't wish their babies any harm but it can be a very lonely experience having a child with disablilities.
Six years on and Marcus is progressing so well. Of course he is still delayed; we have waited what feels like an eternity for him to eat solid food and those who know us or have been following our progress, will know what a long, frustrating and arduous journey it has been. However, this week we have witnessed a major breakthrough with our determined and courageous son. We have been diluting his high-calorie milk in the hope that it might encourage him to eat more solid food and with great success!! He seems to particularly enjoy cake and so I have let him have some at every opportunity. As I have mentioned previously, carrot cake is a favourite; he really enjoys licking the icing from the top but he has progressed to actually eating the cake.
I am just overjoyed. It is a mothers' instict to feed her child and I have found Marcus' eating disorder really frustrating and very difficult to accept at times. These feelings are exacerbated by the fact that there is very little help, support or professional help for children with such difficulties. Indeed, when we weaned Marcus off his jejunal feeds, we had to do it under the advice of a professor from a feeding clinic in Austria.
So, we tentatively enter a new phase. Marcus' bowels have never experienced anything other than the array of different milks he has been prescribed throughout his short life - and breast milk. We have no idea whether he has food allergies or intolerances. We have no idea whether his bowel will be able to absorb the nutrients from his food. I guess we might have to reintroduce ourselves to his dietician who we haven't seen in three years since we found a milk that suited him. I imagine it will be a while before Marcus is eating a roast dinner but meanwhile, he can continue to enjoy his carrots dipped in gravy : )
http://www.facebook.com/video/video.php?v=10150214423678835
Use the link above to see Marcus' progress in eating and speaking.
Marcus has global developmental delay so each and every milestone has been incredibly difficult achieve. At 12 months of age, he was tube-fed for 20 hours per day and was still at the same stage of development as a newborn baby. He could not even lift his head up independently let alone sit, roll, crawl or walk. I'd hear other mothers worrying about their children being slow to walk or waking in the night for milk and I'd want to scream at them - don't you realise how lucky you are? Of course, I understood that it wasn't their fault and I didn't wish their babies any harm but it can be a very lonely experience having a child with disablilities.
Six years on and Marcus is progressing so well. Of course he is still delayed; we have waited what feels like an eternity for him to eat solid food and those who know us or have been following our progress, will know what a long, frustrating and arduous journey it has been. However, this week we have witnessed a major breakthrough with our determined and courageous son. We have been diluting his high-calorie milk in the hope that it might encourage him to eat more solid food and with great success!! He seems to particularly enjoy cake and so I have let him have some at every opportunity. As I have mentioned previously, carrot cake is a favourite; he really enjoys licking the icing from the top but he has progressed to actually eating the cake.
I am just overjoyed. It is a mothers' instict to feed her child and I have found Marcus' eating disorder really frustrating and very difficult to accept at times. These feelings are exacerbated by the fact that there is very little help, support or professional help for children with such difficulties. Indeed, when we weaned Marcus off his jejunal feeds, we had to do it under the advice of a professor from a feeding clinic in Austria.
So, we tentatively enter a new phase. Marcus' bowels have never experienced anything other than the array of different milks he has been prescribed throughout his short life - and breast milk. We have no idea whether he has food allergies or intolerances. We have no idea whether his bowel will be able to absorb the nutrients from his food. I guess we might have to reintroduce ourselves to his dietician who we haven't seen in three years since we found a milk that suited him. I imagine it will be a while before Marcus is eating a roast dinner but meanwhile, he can continue to enjoy his carrots dipped in gravy : )
http://www.facebook.com/video/video.php?v=10150214423678835
Use the link above to see Marcus' progress in eating and speaking.
Tuesday 8 March 2011
Happy Birthday Joely!!
Well, it's been a while since my last post because we went away for half term and Romilly has been poorly since we got back. She had her MMR vaccinations so she had a mild reaction to that, followed by a cold, followed by an ear infection, followed by a bad reaction to the antibiotics she was prescribed. It's such hard work looking after a poorly and demanding toddler - she has wanted to sit on my knee or be carried ALL week, day and night and she cried non-stop for three whole days. Give me thirty hormonal adolescents any day!
Marcus' eating is progressing really well. He is very enthusiastic about joining us at mealtimes. On Saturday, Marcus and I went shopping Joely's
presents and we stopped for re-fuelling at Starbucks. Marcus chose his favourite, carrot cake and whipped cream. He began by helping himself to my tea-loaf and licked all the butter off (cheers son!) then he licked all the icing off his cake, licked the cream off the plate and ate some small pieces of cake. I am so thrilled with the progress he's making. I'm tempted to begin diluting his high calorie milk again to see if he will eat more solid food. I've tried this before with little success but I think his eating skills are really improving now so it's probably worth another try.
Marcus has helped me choose Joely's birthday cake so I'm hoping he'll have a big lick of that tomorrow. We're also planning to go to Macdonald's for tea - Joely's choice. Marcus loves going to Macdonald's and he has recently started to dip the fries into ketchup before chewing them! He also like to chew nuggets but he usually spits those out.
On Saturday, I'm taking Joely and a couple of her friends to the theatre to see The Horrible Histories and on Sunday, I'm looking forward to a going on a picnic with the NCT crowd to celebrate our "babies'" eighth birthdays!!
My lovely godson, Saul and Romilly
Marcus' eating is progressing really well. He is very enthusiastic about joining us at mealtimes. On Saturday, Marcus and I went shopping Joely's
presents and we stopped for re-fuelling at Starbucks. Marcus chose his favourite, carrot cake and whipped cream. He began by helping himself to my tea-loaf and licked all the butter off (cheers son!) then he licked all the icing off his cake, licked the cream off the plate and ate some small pieces of cake. I am so thrilled with the progress he's making. I'm tempted to begin diluting his high calorie milk again to see if he will eat more solid food. I've tried this before with little success but I think his eating skills are really improving now so it's probably worth another try.
Marcus has helped me choose Joely's birthday cake so I'm hoping he'll have a big lick of that tomorrow. We're also planning to go to Macdonald's for tea - Joely's choice. Marcus loves going to Macdonald's and he has recently started to dip the fries into ketchup before chewing them! He also like to chew nuggets but he usually spits those out.
On Saturday, I'm taking Joely and a couple of her friends to the theatre to see The Horrible Histories and on Sunday, I'm looking forward to a going on a picnic with the NCT crowd to celebrate our "babies'" eighth birthdays!!
Saturday 19 February 2011
And finally ...
... half term. I must say, I have rather limped on through the last week and I am shattered but there is still lots of to report on all fronts.
Firstly, let me explain why I am so tired: it's been a very, very busy half term at school, for those that don't know, I teach English part-time (0.75 timetable) and I teach every year group (Year 7 through to 11). Year 10s will be sitting their English Language exams in May and so we have been desperately trying to complete the syllabus in time - it's a really tough call to complete a GCSE in one year (especially when April is all but wiped out with Easter holidays, bank holidays a the Royal wedding). I've just started preparations for the final piece of coursework; Sherlock Holmes and we've really enjoyed reading "The Red Headed League" and analysing various portrayals of Holmes and Watson on the silver screen (Jude Law is definitely my favourite Dr Watson!).
Year 11 are currently preparing for the Literature exam in the Summer and are studying a selection of poetry by Simon Armitage, Carol Ann Duffy and some Pre-1900 poems. My students have to analyse and compare 4 poems in one hour and next term I really need to hone their essay writing technique as well as revising the set texts. I also have a group of year 11s re-sitting the English Language exam so some lunchtimes are swallowed up with extra sessions for them.
On top of all this, AQA felt the GCSE English Language and Literature needed a complete and radical overhaul so we have a totally new syllabus to understand and plan for, commencing next September. There are also lots of other work related jobs to complete over the holidays: GCSE coursework to mark; Year 7,8,9 assessments; year 9 reports to write and next terms lessons to plan. Those of you who think teachers have an easy time are very wrong!!
I am also Vice-chair of Governors at Joely and Marcus' primary school and I have probably spent around four hours this week carrying out those duties. All this is on top of the usual round up of fetching and carrying to hospital appointments, swimming lessons, gymnastics, parties and school runs. When I write it down, it's little wonder I'm tired and dazed by the half-term holidays!!
Last Wednesday, Marcus had a endocrine review at the RVI, Newcastle which went really well! His growth is beginning to slow down slightly so his growth hormone dose was increased. However, he had put on weight again and he is now 19.4KG and almost on the 25th percentile - extraordinary considering he spent the first year of his life OFF THE GRAPH completely and at one point his weight dipped off the page!!! Marcus has also grown in height too and at 106.2cm he's currently skimming the bottom of the percentile chart. It's been a long hard fight and some very difficult decisions have had to be made to get Marcus where he is today but I am so thrilled when I watch him now; participating in a mainstream gymnastics class and engaging with his peers in both school settings. We had another FIRST this week - Marcus walked downstairs, obviously with some help but he's finally realised that he actually needs to bend his knees to climb down stairs.
We've also had some disappointing news this week: the Short Breaks Services who had been funding one to one TA support for Marcus to attend gym club and his individual swimming lessons called to say that this funding runs out on 25th March and we may not get any more. This is a real pity as Marcus has benefited greatly from these activities - we will continue the swimming lessons and pay for them ourselves but it does seem a little unfair that we have to pay £16 for a half -hour lesson. Marcus would be unable to access a mainstream class which costs considerably less at around £40 - 50 per term so once again, children with additional needs are potentially excluded from enjoying activities which others take for granted.
My ongoing mission to get an adapted bike for Marcus so we can enjoy a cycle ride together, as a family, is progressing well. I have received so many kind offers, suggestions and gestures from our friends. Firstly, a friend has put our case forward to the Rotary Club who may offer some money towards a cycle and the same friend has spoken to a local councillor who may be able to help. Another friend, who planning to swim the channel has offered his sponsorship money to the cause and yet another friend who works at a local hospital has made enquiries within the NHS on our behalf. Thank you to everyone for caring enough to offer help, I am so grateful to you all. I have a dream to set up a local resource where children and adults with disabilities and additional needs could hire or borrow a bike to explore our beautiful countryside. The economic climate might be my biggest obstacle at present but one day, who knows?
We have an exciting half-term break planned beginning with a couple of days R&R!! Marcus is at a birthday party at the moment with his daddy and the girls are playing together quietly with the dolls. Joely's going to her friend's house for a sleepover tonight and tomorrow Gary's going to repair the boiler ( he's man of MANY talents!!). I have a dental appointment in Newcastle in Monday, still trying to get my horrible teeth sorted out, and afterwards, we're planning to take the kids to The Centre for Life or The Discovery Museum. Then on Wednesday, we're packing up to spend a few days with Grandma and PePe in Stockport.
I can't wait to see our everyone, including our lovely friends - especially Ozzie who's currently undergoing some grueling radio-therapy treatment. We love you Ozzie; you're so courageous and positive - a total inspiration. And a special cuddle from your little God-daughter Romilly.
I'll post some pictures of our week off on our return and give you all an update on Marcus' eating which I'm going to focus on this week.
Have a great week everyone
xxx
Firstly, let me explain why I am so tired: it's been a very, very busy half term at school, for those that don't know, I teach English part-time (0.75 timetable) and I teach every year group (Year 7 through to 11). Year 10s will be sitting their English Language exams in May and so we have been desperately trying to complete the syllabus in time - it's a really tough call to complete a GCSE in one year (especially when April is all but wiped out with Easter holidays, bank holidays a the Royal wedding). I've just started preparations for the final piece of coursework; Sherlock Holmes and we've really enjoyed reading "The Red Headed League" and analysing various portrayals of Holmes and Watson on the silver screen (Jude Law is definitely my favourite Dr Watson!).
Year 11 are currently preparing for the Literature exam in the Summer and are studying a selection of poetry by Simon Armitage, Carol Ann Duffy and some Pre-1900 poems. My students have to analyse and compare 4 poems in one hour and next term I really need to hone their essay writing technique as well as revising the set texts. I also have a group of year 11s re-sitting the English Language exam so some lunchtimes are swallowed up with extra sessions for them.
On top of all this, AQA felt the GCSE English Language and Literature needed a complete and radical overhaul so we have a totally new syllabus to understand and plan for, commencing next September. There are also lots of other work related jobs to complete over the holidays: GCSE coursework to mark; Year 7,8,9 assessments; year 9 reports to write and next terms lessons to plan. Those of you who think teachers have an easy time are very wrong!!
I am also Vice-chair of Governors at Joely and Marcus' primary school and I have probably spent around four hours this week carrying out those duties. All this is on top of the usual round up of fetching and carrying to hospital appointments, swimming lessons, gymnastics, parties and school runs. When I write it down, it's little wonder I'm tired and dazed by the half-term holidays!!
Last Wednesday, Marcus had a endocrine review at the RVI, Newcastle which went really well! His growth is beginning to slow down slightly so his growth hormone dose was increased. However, he had put on weight again and he is now 19.4KG and almost on the 25th percentile - extraordinary considering he spent the first year of his life OFF THE GRAPH completely and at one point his weight dipped off the page!!! Marcus has also grown in height too and at 106.2cm he's currently skimming the bottom of the percentile chart. It's been a long hard fight and some very difficult decisions have had to be made to get Marcus where he is today but I am so thrilled when I watch him now; participating in a mainstream gymnastics class and engaging with his peers in both school settings. We had another FIRST this week - Marcus walked downstairs, obviously with some help but he's finally realised that he actually needs to bend his knees to climb down stairs.
We've also had some disappointing news this week: the Short Breaks Services who had been funding one to one TA support for Marcus to attend gym club and his individual swimming lessons called to say that this funding runs out on 25th March and we may not get any more. This is a real pity as Marcus has benefited greatly from these activities - we will continue the swimming lessons and pay for them ourselves but it does seem a little unfair that we have to pay £16 for a half -hour lesson. Marcus would be unable to access a mainstream class which costs considerably less at around £40 - 50 per term so once again, children with additional needs are potentially excluded from enjoying activities which others take for granted.
My ongoing mission to get an adapted bike for Marcus so we can enjoy a cycle ride together, as a family, is progressing well. I have received so many kind offers, suggestions and gestures from our friends. Firstly, a friend has put our case forward to the Rotary Club who may offer some money towards a cycle and the same friend has spoken to a local councillor who may be able to help. Another friend, who planning to swim the channel has offered his sponsorship money to the cause and yet another friend who works at a local hospital has made enquiries within the NHS on our behalf. Thank you to everyone for caring enough to offer help, I am so grateful to you all. I have a dream to set up a local resource where children and adults with disabilities and additional needs could hire or borrow a bike to explore our beautiful countryside. The economic climate might be my biggest obstacle at present but one day, who knows?
We have an exciting half-term break planned beginning with a couple of days R&R!! Marcus is at a birthday party at the moment with his daddy and the girls are playing together quietly with the dolls. Joely's going to her friend's house for a sleepover tonight and tomorrow Gary's going to repair the boiler ( he's man of MANY talents!!). I have a dental appointment in Newcastle in Monday, still trying to get my horrible teeth sorted out, and afterwards, we're planning to take the kids to The Centre for Life or The Discovery Museum. Then on Wednesday, we're packing up to spend a few days with Grandma and PePe in Stockport.
I can't wait to see our everyone, including our lovely friends - especially Ozzie who's currently undergoing some grueling radio-therapy treatment. We love you Ozzie; you're so courageous and positive - a total inspiration. And a special cuddle from your little God-daughter Romilly.
I'll post some pictures of our week off on our return and give you all an update on Marcus' eating which I'm going to focus on this week.
Have a great week everyone
xxx
Sunday 6 February 2011
Another week flies by...
I can't believe we're already well into February. We've had a really busy week - Gary had tonsillitis last weekend and has not been feeling great all week and the rest of us have all had colds too. However, we have soldiered on with the usual rounds of school runs, swimming lessons, gymnastics, work, housework, cooking, getting up in the night, getting up early ...
Marcus and Joely go to gym club together after school on Thursdays; it's gives me so much pleasure to see Marcus actively involved in a mainstream activity. He has one-one support and the activities really help build his strength and co-ordination.
Marcus has also started swimming lessons at the local baths. He has a private lesson and as I have to get him undressed and take him down to the pool, I decided I may as well take Joely and Romilly swimming too. This Friday, Gary was working until five so I decided to take them all in and Gary came straight to the baths after work to help get everyone showered and dressed. After working all day, I must admit maybe I was a little over-ambitious, the whole escapade was pretty exhausting. It took twenty minutes to get us all dressed and trying to cram all our belongings into a locker assisted by two little people who are pretty unsteady on their feet, sliding around on the wet tiles, was not fun! I swore under my breath, oh why did I think it would be a good idea to take three children swimming!! Thankfully, I had Joely to help and once in the water, Joely needs very little supervision; she swims like a little fish and Marcus went straight into his lesson and I was able to give Romilly some attention; she is a real little water baby and we taught her how to put her face into the pool and blow bubbles.
Marcus' eating skills are progressing well and he's experienced a range of sensory experiences this week - as well as all the new foods he tries at school. He requested a Happy Meal at Macdonald's last weekend and he bit and chewed chips and nuggets, he's developed a taste for cake and he has sampled the delights of most of the cafes and bakeries in the area.
I am looking into getting an adapted cycle for Marcus from somewhere and I have received lots of great suggestions from friends and family and I have a couple of irons in the fire. However, Gary pointed out yesterday, assuming we manage to get a bike, where will we keep it? I have no idea, we'll cross that bridge when we come to it and I'm sure my lovely husband will think of a solution to that problem. I am just too preoccupied by the prospect of the five of us, on our bikes, enjoying the fresh air and beautiful Richmondshire countryside. We'll have to plan our routes carefully though, Richmond is full of hills and I wouldn't fancy cycling up-hill with Marcus is tow now!
We're looking forward to another busy week ahead, Marcus has an appointment with the Endocrine team at the RVI in Newcastle in Wednesday to review his growth hormone dose. That's my 'day off' accounted for - maybe I'll be able to sneak in Monsoon in Eldon Garden before we set off home. On Thursday night, the NCT girls are coming to Richmond and we're heading to The Station for a meal which should be lovely. We have eleven children between us now; it's crazy to think back that when we met, almost exactly eight years ago, we were all expecting our first babies.
Oh how our lives have changed since those ante-natal classes and the coffee mornings!
Until next time xxx
Marcus and Joely go to gym club together after school on Thursdays; it's gives me so much pleasure to see Marcus actively involved in a mainstream activity. He has one-one support and the activities really help build his strength and co-ordination.
Marcus has also started swimming lessons at the local baths. He has a private lesson and as I have to get him undressed and take him down to the pool, I decided I may as well take Joely and Romilly swimming too. This Friday, Gary was working until five so I decided to take them all in and Gary came straight to the baths after work to help get everyone showered and dressed. After working all day, I must admit maybe I was a little over-ambitious, the whole escapade was pretty exhausting. It took twenty minutes to get us all dressed and trying to cram all our belongings into a locker assisted by two little people who are pretty unsteady on their feet, sliding around on the wet tiles, was not fun! I swore under my breath, oh why did I think it would be a good idea to take three children swimming!! Thankfully, I had Joely to help and once in the water, Joely needs very little supervision; she swims like a little fish and Marcus went straight into his lesson and I was able to give Romilly some attention; she is a real little water baby and we taught her how to put her face into the pool and blow bubbles.
Marcus' eating skills are progressing well and he's experienced a range of sensory experiences this week - as well as all the new foods he tries at school. He requested a Happy Meal at Macdonald's last weekend and he bit and chewed chips and nuggets, he's developed a taste for cake and he has sampled the delights of most of the cafes and bakeries in the area.
I am looking into getting an adapted cycle for Marcus from somewhere and I have received lots of great suggestions from friends and family and I have a couple of irons in the fire. However, Gary pointed out yesterday, assuming we manage to get a bike, where will we keep it? I have no idea, we'll cross that bridge when we come to it and I'm sure my lovely husband will think of a solution to that problem. I am just too preoccupied by the prospect of the five of us, on our bikes, enjoying the fresh air and beautiful Richmondshire countryside. We'll have to plan our routes carefully though, Richmond is full of hills and I wouldn't fancy cycling up-hill with Marcus is tow now!
We're looking forward to another busy week ahead, Marcus has an appointment with the Endocrine team at the RVI in Newcastle in Wednesday to review his growth hormone dose. That's my 'day off' accounted for - maybe I'll be able to sneak in Monsoon in Eldon Garden before we set off home. On Thursday night, the NCT girls are coming to Richmond and we're heading to The Station for a meal which should be lovely. We have eleven children between us now; it's crazy to think back that when we met, almost exactly eight years ago, we were all expecting our first babies.
Oh how our lives have changed since those ante-natal classes and the coffee mornings!
Until next time xxx
Monday 24 January 2011
A Hectic Week.
Goodness! It's only Monday and the Weston household is exhausted! I'd forgotten how demanding toddlers can be; Romilly is very clingy and wingey at the moment, especially at tea-time when I am tying to cook. Romilly always wants food and wants it NOW! She's also still waking in the night for milk which is REALLY frustrating. If we stand firm and try to settle her without, she'll scream for hours and we just can't do it and go out to work the next day so I'm probably defying every baby manual ever written and just going with the flow. I'm guessing she'll give up wanting milk at 3 am at some point (I'm just hoping it's sooner rather than later)!
On a positive note, Marcus' sleep has dramatically improved. After 4 years of waking numerous times in the night he's even managing to sleep right through the night WITHOUT his sleeping drug, which is a huge step. Marcus slept the first 2 years of his life away, I just don't think he had the energy to stay awake for long. However, when we weaned him off his 20hour jejunal tube feeds, he would only take milk when he was relaxed and sleepy and this lead in turn to nocturnal feeding habits which persisted for about four years.
Marcus has been very enthusiastic about his eating this week. He's sat with us at every meal and I'm certain that slightly larger morsels of food are passing his lips. I am especially impressed by his love of carrot cake. He loves to lick the icing off (then I finish the cake off).
We finally took Joely to get her ears pierced yesterday. Our eldest daughter is such a good girl and such a help to me and this is a small reward for her. She often gets Marcus dressed for me in the morning and she is always willing to fetch and carry when required. We almost always have to place Marcus at the heart of any decisions we make for the family: holidays, days out and other activities. Joely always seems to accept these with understanding and without question. Growing up with a disabled sibling certainly has made Joely a very mature and sensitive young girl and I am so proud of her. Romilly seems to be following her big sister's lead and she has begun to 'help' me change Marcus' nappies and likes to wash her big brother's face and smother him with kisses. However, when Marcus reciprocates with a big heart-warming bear-hug, she moves like lightning to avoid his clutches.
Life is always hectic but never boring in the Weston household. At the moment, the children are all tucked up in bed; my favourite time of day when Gary and I can finally enjoy a hot cup of tea and chat about our day without interuption : )
On a positive note, Marcus' sleep has dramatically improved. After 4 years of waking numerous times in the night he's even managing to sleep right through the night WITHOUT his sleeping drug, which is a huge step. Marcus slept the first 2 years of his life away, I just don't think he had the energy to stay awake for long. However, when we weaned him off his 20hour jejunal tube feeds, he would only take milk when he was relaxed and sleepy and this lead in turn to nocturnal feeding habits which persisted for about four years.
Marcus has been very enthusiastic about his eating this week. He's sat with us at every meal and I'm certain that slightly larger morsels of food are passing his lips. I am especially impressed by his love of carrot cake. He loves to lick the icing off (then I finish the cake off).
We finally took Joely to get her ears pierced yesterday. Our eldest daughter is such a good girl and such a help to me and this is a small reward for her. She often gets Marcus dressed for me in the morning and she is always willing to fetch and carry when required. We almost always have to place Marcus at the heart of any decisions we make for the family: holidays, days out and other activities. Joely always seems to accept these with understanding and without question. Growing up with a disabled sibling certainly has made Joely a very mature and sensitive young girl and I am so proud of her. Romilly seems to be following her big sister's lead and she has begun to 'help' me change Marcus' nappies and likes to wash her big brother's face and smother him with kisses. However, when Marcus reciprocates with a big heart-warming bear-hug, she moves like lightning to avoid his clutches.
Life is always hectic but never boring in the Weston household. At the moment, the children are all tucked up in bed; my favourite time of day when Gary and I can finally enjoy a hot cup of tea and chat about our day without interuption : )
Monday 17 January 2011
One bite leads to another ...
Hello all,
Marcus recovered well from his operation on Friday, thank you for all the good wishes and messages. It rained in Richmond for most of the weekend and with Gary working, we had a pretty quiet one.
On Sunday, I took the kids to Wackadayz (indoor soft play area) to burn off some energy. We met some friends there and everyone had a lovely time. We ordered some lunch and Marcus made it very clear that he did not want to be excluded from the meal, "Box" he asked me very clearly. "Box????" I hear you ask. This means Happy Meal or one of those cardboard sandwich boxes which come filled with goodies. Marcus generally loves the colourful box more than the food but at least I can get away with buying a box and feeding Romilly with its contents!!
So, I bought Marcus a children's lunch box and guess what? He opened his sandwiches with great enthusiasm and chewed small pieces of bread before spitting them out. He then moved on to the apple and took a small bite of that too.
Video link - (you'll need to copy and paste this into the status as I can't work out how to do it properly)
http://www.youtube.com/watch?v=POZbFh_sIT
I have also been persevering with the powder but I'm struggling to get Marcus to put the food on his tongue - I have to be very firm with him. He prefers to purse his lips and wipe the powder onto his lips. On Sunday morning he gagged and vomited after I put some banana Nesquik powder on his tongue. This is such a frustrating journey. How can it be so hard to eat??????
Marcus recovered well from his operation on Friday, thank you for all the good wishes and messages. It rained in Richmond for most of the weekend and with Gary working, we had a pretty quiet one.
On Sunday, I took the kids to Wackadayz (indoor soft play area) to burn off some energy. We met some friends there and everyone had a lovely time. We ordered some lunch and Marcus made it very clear that he did not want to be excluded from the meal, "Box" he asked me very clearly. "Box????" I hear you ask. This means Happy Meal or one of those cardboard sandwich boxes which come filled with goodies. Marcus generally loves the colourful box more than the food but at least I can get away with buying a box and feeding Romilly with its contents!!
So, I bought Marcus a children's lunch box and guess what? He opened his sandwiches with great enthusiasm and chewed small pieces of bread before spitting them out. He then moved on to the apple and took a small bite of that too.
Video link - (you'll need to copy and paste this into the status as I can't work out how to do it properly)
http://www.youtube.com/watch?v=POZbFh_sIT
I have also been persevering with the powder but I'm struggling to get Marcus to put the food on his tongue - I have to be very firm with him. He prefers to purse his lips and wipe the powder onto his lips. On Sunday morning he gagged and vomited after I put some banana Nesquik powder on his tongue. This is such a frustrating journey. How can it be so hard to eat??????
Friday 14 January 2011
A Minor Operation!
It was an early start for the Weston household today and thankfully all the children decided to sleep all night, for a change! We had to take Marcus to the Freeman Hospital in Newcastle to have his remaining grommit removed from his right ear because he's been suffering from repeated infections. The alarm sounded at 6.10am, a full hour earlier than normal for me and it was a rare treat, only having to dress one child as Granddad stayed last night to help by looking after the girls today.
We arrived at the admissions desk just after 8am and were directed to ward 11, to our usual spot! We've been to ward 11 on more than one occasion. Within a short space of time, we'd had a chat with the anaesthetist, the surgeon and the sister; Marcus was weighed and measured and on with the robe. Miss Inglis, Marcus' teacher from St Mary's, had kindly lent Marcus a little bag of toys and books based on a hospital theme so after a little play and a fiddle with the TV, it was soon time to take Marcus to theatre.
The walk to theatre always seems to take an age and it doesn't ever really get much easier. We had another wait in the waiting room outside the theatre and another two rounds of the same questions: Name? Age? Date of birth? Do you understand why Marcus is here? Any allergies?
Marcus Weston?
It was his turn, only one of us could go in with him while the anaesthetic was administered - I decided it would be me. Marcus gave Gary a kiss and a hug and I took him through. Marcus was so brave while a canula was inserted into the back of his hand and after a little cry he was soon asleep. I didn't linger long enough to look at his lifeless body, the anaesthetist promised to look after my little man and I hot-footed it back to the waiting room where Gary was sitting with another little boy and his mother. I swallowed my tears and we headed for the hospital restaurant to wait.
About forty minutes later, we were called back to theatre and as we headed through the door, I could hear my little man wailing. He has a fine pair of lungs on him when he's cross - luckily, it doesn't happen so often these days. Marcus was very upset for about forty-five minutes while he recovered from the anaesthetic and thankfully, the doctors gave him some anti-sickness drugs so we didn't have a repeat performance of last time. The grommit had been removed and his ears received a good clean.
Shortly, the nurse finally arrived from ward 11 to take him back on the trolley, he perked up and seemed to enjoy the ride back. Back on the ward, he improved dramatically once we'd switched the Patient-line TV on for him and he was soon back to his normal cheery self.
After a lunch of mushy peas and Paediasure, armed with a course of antibiotic ear-drops, we were set free around one-thirty. We made it home in time to go to St Mary's weekly celebration assembly; after which, Marcus went to see Miss Inglis to tell her all about his exciting day.
We arrived at the admissions desk just after 8am and were directed to ward 11, to our usual spot! We've been to ward 11 on more than one occasion. Within a short space of time, we'd had a chat with the anaesthetist, the surgeon and the sister; Marcus was weighed and measured and on with the robe. Miss Inglis, Marcus' teacher from St Mary's, had kindly lent Marcus a little bag of toys and books based on a hospital theme so after a little play and a fiddle with the TV, it was soon time to take Marcus to theatre.
The walk to theatre always seems to take an age and it doesn't ever really get much easier. We had another wait in the waiting room outside the theatre and another two rounds of the same questions: Name? Age? Date of birth? Do you understand why Marcus is here? Any allergies?
Marcus Weston?
It was his turn, only one of us could go in with him while the anaesthetic was administered - I decided it would be me. Marcus gave Gary a kiss and a hug and I took him through. Marcus was so brave while a canula was inserted into the back of his hand and after a little cry he was soon asleep. I didn't linger long enough to look at his lifeless body, the anaesthetist promised to look after my little man and I hot-footed it back to the waiting room where Gary was sitting with another little boy and his mother. I swallowed my tears and we headed for the hospital restaurant to wait.
About forty minutes later, we were called back to theatre and as we headed through the door, I could hear my little man wailing. He has a fine pair of lungs on him when he's cross - luckily, it doesn't happen so often these days. Marcus was very upset for about forty-five minutes while he recovered from the anaesthetic and thankfully, the doctors gave him some anti-sickness drugs so we didn't have a repeat performance of last time. The grommit had been removed and his ears received a good clean.
Shortly, the nurse finally arrived from ward 11 to take him back on the trolley, he perked up and seemed to enjoy the ride back. Back on the ward, he improved dramatically once we'd switched the Patient-line TV on for him and he was soon back to his normal cheery self.
After a lunch of mushy peas and Paediasure, armed with a course of antibiotic ear-drops, we were set free around one-thirty. We made it home in time to go to St Mary's weekly celebration assembly; after which, Marcus went to see Miss Inglis to tell her all about his exciting day.
Wednesday 12 January 2011
One small step forward ...
http://www.facebook.com/video/video.php?v=10150161791363835¬if_t=video_processed
Oh! My! God!
Marcus got off to a roaring start!!
When I finished this morning's post, I went straight to the Co-op in search of powdered food-stuffs and I bought cinnamon, garlic salt, Nesqik milkshake powders, icing-sugar and ground almonds. We had a busy evening planned but I couldn't wait to get started. Have a look at the video to see what happened.
http://www.youtube.com/watch?v=lbuSe0XKP8M
For along time now, I've been certain that Marcus WANTED to eat but wasn't ABLE. We've spent a long time encouraging Marcus to eat puree because that's how you wean babies. However, small amounts of fine powder though seem safer, they offer strong tastes without needing too many oral skills to swallow them. It's so simple!!
I am one VERY happy and optimistic mummy tonight!
Oh! My! God!
Marcus got off to a roaring start!!
When I finished this morning's post, I went straight to the Co-op in search of powdered food-stuffs and I bought cinnamon, garlic salt, Nesqik milkshake powders, icing-sugar and ground almonds. We had a busy evening planned but I couldn't wait to get started. Have a look at the video to see what happened.
http://www.youtube.com/watch?v=lbuSe0XKP8M
For along time now, I've been certain that Marcus WANTED to eat but wasn't ABLE. We've spent a long time encouraging Marcus to eat puree because that's how you wean babies. However, small amounts of fine powder though seem safer, they offer strong tastes without needing too many oral skills to swallow them. It's so simple!!
I am one VERY happy and optimistic mummy tonight!
We're BACK!!
Hello Everyone!!
After a very busy couple of years expanding our family, I've decided to start up my Blog again. The Westons have been VERY busy over the last couple of years and the blogging has had to take a back seat. The reason I have been inspired to pick it back up again is because I have been inspired by one of my CFC parents/friends from 'across the pond' to make a radical attempt to help Marcus eat solid food.
Marcus making terrific progress in lots of ways; he's walking now and making great leaps in his communication skills. Eating solid food is still a great challenge that Marcus needs to overcome and there seem to be very few specialists in this field. The Speech and Language therapists at school are working hard and Marcus is keen to sample a wide variety of flavours but he has not progressed much beyond licking very tiny amounts. His sole source of nutrition continues to be Paediasure Plus with Fibre though he will now drink strawberry, vanilla and banana flavours! Frustratingly for me, Marcus will only drink his milk from certain beakers and he will only drink lying down which attracts some disapproving looks now, in public places. (I guess people who don't know Marcus see a six year old boy,lying on the ground, drinking milk from a bottle - I see a miracle : )
Anyway, my fellow cfc mummy from the USA, Becky, has a son called Jack who is about to undergo an eating programme called 'Food-Chaining'. I was very jealous because I am not aware of any programme like this in the UK but I have done some research and the premise of this process seems very logical and straight forward so I have put a plan in place and I am going to use this blog to record and share his progress. If you have any suggestions to offer; then please, please write a comment. This is a very lonely problem to have with your child because it's so uncommon.
Check out the link if you want to read about the programme.
http://cheriandlaura.blogspot.com/
Week 1
Learning Objective:
Introducing fine powders
cinnamon powder
mustard powder ( Marcus loves strong tastes)
icing sugar
hot chocolate powder
Nesquik milkshake powder
...and any other powders I can find in the supermarket
My plan is to present Marcus with very tiny amounts with some finger food that he could lick and dip into the powder. I'm going to also try to find a plate with dividers and sections. I'm also going to get some liquorice to dip in the various powders. Sounds so simple. Wish us luck!!
NB Marcus is having an operation on his ears on Friday and Granddad's coming to help us out - thanks dad!!!
I'll be back as soon as there's something to report.
Sam xxx
After a very busy couple of years expanding our family, I've decided to start up my Blog again. The Westons have been VERY busy over the last couple of years and the blogging has had to take a back seat. The reason I have been inspired to pick it back up again is because I have been inspired by one of my CFC parents/friends from 'across the pond' to make a radical attempt to help Marcus eat solid food.
Marcus making terrific progress in lots of ways; he's walking now and making great leaps in his communication skills. Eating solid food is still a great challenge that Marcus needs to overcome and there seem to be very few specialists in this field. The Speech and Language therapists at school are working hard and Marcus is keen to sample a wide variety of flavours but he has not progressed much beyond licking very tiny amounts. His sole source of nutrition continues to be Paediasure Plus with Fibre though he will now drink strawberry, vanilla and banana flavours! Frustratingly for me, Marcus will only drink his milk from certain beakers and he will only drink lying down which attracts some disapproving looks now, in public places. (I guess people who don't know Marcus see a six year old boy,lying on the ground, drinking milk from a bottle - I see a miracle : )
Anyway, my fellow cfc mummy from the USA, Becky, has a son called Jack who is about to undergo an eating programme called 'Food-Chaining'. I was very jealous because I am not aware of any programme like this in the UK but I have done some research and the premise of this process seems very logical and straight forward so I have put a plan in place and I am going to use this blog to record and share his progress. If you have any suggestions to offer; then please, please write a comment. This is a very lonely problem to have with your child because it's so uncommon.
Check out the link if you want to read about the programme.
http://cheriandlaura.blogspot.com/
Week 1
Learning Objective:
Introducing fine powders
cinnamon powder
mustard powder ( Marcus loves strong tastes)
icing sugar
hot chocolate powder
Nesquik milkshake powder
...and any other powders I can find in the supermarket
My plan is to present Marcus with very tiny amounts with some finger food that he could lick and dip into the powder. I'm going to also try to find a plate with dividers and sections. I'm also going to get some liquorice to dip in the various powders. Sounds so simple. Wish us luck!!
NB Marcus is having an operation on his ears on Friday and Granddad's coming to help us out - thanks dad!!!
I'll be back as soon as there's something to report.
Sam xxx
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