Review

I had my 6 month review today at the Child Development Centre. Mum took me and brought Sarah from nursery. Pam the health visitor, Liz from portage and music group, Claire the speech and language therapist and a doctor were also there. They all said how how much I'd come on over the last few months. My communication skills have blossomed apparently but I knew that anyway! I just get so frustrated, especially when I'm stuck in a room with so many adults - it was so boring. After about half an hour I signed 'car' to mummy and pointed to the door but she said, 'No!' and I screamed and screamed. Everyone laughed because apparently I showed them all that I could make myself undestood AND showed I understood the word NO. Everyone decided these are the 'terrible twos' that make me grumpy sometimes!

I had a session with Claire beforehand and she said I was making lots more different sounds and trying to say quite a few words. Liz said she thought I was learning as fast as possible at the moment and she could see improvements every time she saw me. All in all, it was a long morning for me but I heard mummy say to Sarah in the car, on the way home, that that was the best review I'd had because it was all so positive.

However, over the next few months I need to grow and get mobile. These are big challenges for me and we'll have to see what happens.

Update

Had a chaotic start to the week. Mummy forgot Michelle was coming on Monday and I had an appointment at The Friarage Hospital, Northallerton, to get my ears checked again so I only saw Michelle for 15mins before we had to leave - silly mummy. Anyway, I keep failing my hearing tests. I needed to go to sleep for the test to be done because the audiologist needs to put electrodes on my head to measure my brain response. Anyway, here's the funny thing - I didn't go to sleep, Ha ha. Mummy and the audiologist waited for 2 hurs for the sedation to take effect and I refused. I didn't like having the sticky things stuck on my head and I didn't know what they were going to do to me when I shut my eyes - so I didn't! Joely had a nice time though, she stayed at Auntie Bridget's and played with Holly and Maisy while I lead everyone a merry dance!!

On Tuesday, we all went to Northallerton again to Musical Bridges which is run by the Education Services. We love going there. The sign for the week was 'cold' and we played with ice cubes before we did our singing. I didn't like the ice - it was far too cold for me but Joely loved it. I have lots of friends there and I really enjoy joining in the songs and actions.

We went to nursery on Wednesday and Thursday while Mummy went to work. I even went to school with her one day - all the kids come to see me and say how cute I am and I just love it! Mummy's been so busy marking this week. I hate it when mummy marks or works on the laptop - I grunt really loudly and stretch my arm out towards her until she stops! I enjoy nursery though. I've settled in well and I've been joining in meal times too. I don't eat though, I just lick, suck and chuck - ha ha. It's great fun!

I can also say a few words now. I can say Mama, Dada and Nanna. Joely is but upset because I can't say her name but it's too hard.

Mummy, Joely and I have all got colds now. I don't feel like drinking much milk and mummy thinks I look even thinner than usual but I can't help it can I?

Anyway, must go

lots of love from Marcus

PS hi to any new cfc friends who might have logged on - please leave me a message x

A Quiet Week!

We haven't done too much this week. Michelle, my portage worker, came on Monday and we played with mashed potato! I'm not too thrilled about getting my hands dirty but I touched it quite a bit. I also saw that she was ticking lots of boxes on my assessment sheet. I've been trying to move around a bit when mummy puts me on my front but I still don't like it a lot.

I've been quite constipated this week and I'm not at all hungry when that happens. I'm hoping I'll start to feel a little better soon.

Mummy went out in Harrogate on Saturday for Auntie Becca's birthday - I think she had a great time 'cos she was a bit tipsy when she came home ha ha! I made her pay by getting up every hour through the night for a drink!!!

Have a good weekend everyone xx

Progress!

I went to see Dr James who looked after me when I was a baby at our local hospital today. I think he was rather impressed with my progress! Mummy told him all about the things I could do now. I was a bit grumpy though because I'd been at nursery all day and I wanted to go home.

On the feeding front - I drank 200mls of milk at nursery today! I never usually drink much when I'm there but Mummy has been giving me water at night like Dr Thomas said and I've been hungry through the day. I've still been drinking as much as I do normally so Mummy is really proud of me. I have also fancied licking lots of different foods. Sarah and Clare have been really encouraging me to eat and sit me with the other children at lunch time. I prefer to lick Mummy's food though!

MARCUS: FEEDING CLINIC, RVI

We had our first visit to the feeding clinic at The Royal Victoria Infirmary, Newcastle. It was brilliant. We were just expecting to see a speech therapist but we also saw Dr Thomas who looked after me when I was a baby, a dietician and a couple of other doctors. I hadn't seen Dr Thomas for such a long time and was keen to show him how much I'd changed and developed - I think he was pleasantly surprised and impressed with me! We talked about everything I can do now and they came up with a plan to persuade me to eat solids and drink my milk though the day. We'll see about that! I think I like waking everyone up in the night. Mummy has got to give me water through the night for several nights to make me hungry through the day. Dr Thomas said it may take a couple of attempts but I should get the hang of it eventually. I like Dr Thomas though so maybe I'll give it a go. I'm going to see Dr Bunn next month let's hope we have some good news for her. (I Like Dr Bunn too!)

We met Auntie Bridge, Holly and Maisy afterwards and went for lunch and shopping. It was such fun! Joely and I were so tired and slept all the way home in the car.

MARCUS' STORY: August 06 - January 07

At the end of August 2006, something amazing happened! I had been drinking water for a while but I started drinking my own milk. Mummy watched a programme about a feeding clinic in Austria where they weaned tube fed children onto eating orally by doing controlled starvation. She tried stopping my feed for a little longer in the day but without much success. I just didn't understand hunger and Mummy was too frightened that I'd dehydrate or lose too much weight. Anyway, In August we went to Worcester to see Nanny and stayed with Auntie Judy for the weekend. I was really sick all weekend and Mummy left my feed off for 2 days and just let me drink water. When we came home, Mummy tried giving me some of my milk (I was back on the milk free stuff at this point to try to stop the vomiting) and I drank 2oz! Mummy kept giving me the milk from a beaker and I kept drinking it! I lost A LOT of weight. I weighed about 22lb at that point and my weight dropped to 19lbs. I looked thin again. Mummy phoned Dr Bunn and she guided me through the process. Mummy also e-mailed the professor in Austria a few times who told her what happened when she weaned children in her clinic. this gave mummy the confidence to continue even when I lost the weight.

It was such a stressful time for the family but I had never felt better. I stopped being sick all the time and I knew at last what it felt like to be hungry and full up. I got the hang of drinking milk very quickly though I'd forgotten how to eat solids. I panicked whenever I had solid food in my mouth and screamed. I still do. I like licking food like bananas, bread, rucks and crisps but I get really cross if I get a lump in my mouth.

Since I came off my tube feed, I've started making lots of noise, I've learnt how to communicate using sounds and Makaton - a kind of sign language. I can sit on my own for a long time and I can ride in my little car. I sign car when I want to play on it and someone gets it for me. I don't like Joely taking my toys off me and I shout at her. I like lights and I sign light when I want someone to turn them on and off for me. I enjoy music very much and I go to a music group with Mummy and Joely every other Tuesday. I like drinking my milk at night time and waking everyone up with a loud cry when I'm hungry! I love nursery and my portage worker, Michelle. Daddy really makes me smile and I have just learnt to say Dada. I love Mummy and hate it when she's busy and can't pick me up. Life is good at the moment and I've never been so well.

MARCUS' STORY: November 05 - August 06

The next few months were amazing! I grew at an extraordinary rate and by the new year I had reached the bottom line on the centile charts! For the first time in my life I looked a little bit chubby. Mummy worked really hard to get as much milk in me a possible. I was connected to my pump nearly all day. However, there was a down-side, I had started to be sick a lot more and I stopped eating puree. My body certainly needed the extra calories but my body couldn't cope with too much. I went back to the RVI several times and my medicines were changed but nothing seemed to work really well. When I was well, I was happy and I got a litle bit stronger. I learnt to hold my head up and very soon I was sitting up on my own!

MARCUS' STORY: May - October 2005

We all loved being at home again together but life was far from easy. I was having about 800mls of milk a day through my j-tube but I still wasn't growing. I had to be medicated 4 times a day with my reflux drugs: domperidone and ranitidine; and a rotation of three different antibiotics. I ate and drank nothing orally and my development was so delayed. I spent most of the day lying on my playmat, looking at my toys, connected to my drip stand and milk pump for 22 hours per day. We had a lovely summer together as a family, enjoying days out at the coast and visiting family but Mummy and Daddy were still so worried about my slowgrowth and development delay. I was still so thin and weak and slept so much.

By September, I was still only 11lb but I started to eat solids! This was such an exciting time. I didn't like drinking but I ate small amounts of pureed vegetables and enjoyed it. I prefered savoury flavours and didn't like yoghurt.

In October we were readmitted to the RVI for PN because I was still so skinny. However, my dietician, Shirley, had an idea. She took me off the milk free formula and tried me on Paediasure. It was brilliant!! I grew!!

MARCUS' STORY: January - April 05

This is the most dramatic part of my story so far! We arrived at ward 7 in the RVI quite late in the evening of 13th Jan. A very nice student nurse booked us in. It was pretty scary for so many reasons but mainly because we'd left the quiet comfort of the Friarage Hospital where we knew all the doctors and nurses and entered a huge regional centre in the middle of Newcastle. I'd never been to a city before but I got to know Newcastle really well! Joely was staying with Nanna and Granddad and mummy and Daddy stayed with me in my side room for the first night.

The following morning we met Dr Thomas who was very serious and explained how seriously poorly I was. He told us I would have to have a special sort of feed that went in via a drip, into a big vein in my neck - the feed was called PN or parenteral nutrition. He told us I would need surgery to put the line into my neck and they also wanted to put a camera down my throat and take some biopsies. I didn't have much say in the matter but mummy and daddy agreed. He hoped the tests would show why I couldn't eat without being sick. So that was my first general anaesthetic. I came back with a tube attatched to my thin chest which tunnelled under my skin to my neck. Dr Thomas said my oesaphagus looked normal, as did the biopsies which was good but told the doctors nothing about my condition. The PN started and I grew a little but my liver was enlarged and fatty so the doctors had to be careful because PN could hurt my liver badly.

Soon after I arrived, we met Dr Bunn, my consultant, and Dr Hodges who is the other member of the team along with Dr Thomas. They took it in turns to look after me during my long stay and my subsequent visits to the RVI. Anyway, the consultants arranged a barrage of tests: blood tests, MRI scan, abdominal scan, x-rays, barium swallow etc. but with no success. I could feel everyone's frustration as every test came back normal. If I was normal, why was I so skinny and sick?? The doctors decided I had some reflux and some upper gut dysmotility. I continued to grow a little but at 4 months, I still looked like a newborn and had only just regained my birth weight! Then, the doctors decided to try putting my ng tube further down through my stomach, into the top of my bowel. This was a SUCCESS even though I kept pulling the tube out! The doctors had to take me to x-ray to put it back in as it was a bit tricky to get it in the correct place. However, I was sick far less and the doctors gradually increased my milk intake and decreased the PN.

Mummy and Daddy decided along with the doctors advice to go ahead with a "surgical jejunostomy" which is a kind of feeding tube that takes my food straight into the top of my bowel through a hole in my tummy. We knew we could all go home if this worked.

During all this time in hospital, Mummy, Daddy and Joely stayed in Crawford House with all the other families of poorly children. I was so glad they could all be so near. Joely was only 2 but she got used to being in hospital and there was an amazing nursey nurse called Tracy on the ward who helped Mummy a lot. I got to know all the nurses so well and I loved them all, especially Ann - Marie, Jackie, Nicky, Chris and Karen.

I had the surgery on 17th March 2005 and it all went horribly wrong. When I came round from the anaesthetic, I was in great pain but I couldn't tell anyone so I just twisted and screamed a lot. It got worse and worse and mummy and Daddy were so scared and worried. The doctors stayed with me all night because my breathing and blood pressure were bad. I had a couple of blood transfusions and the doctors really weren't sure what was going on. I just felt so bad and in so much pain.

The following morning, my nappy was full of blood so I was rushed to theatre again. The doctors did an emergency laparotomy, which means they cut my tummy open to have look to see what had gone wrong.

The next time I saw Mummy and Daddy was when i woke up in PICU. I tried to move but I couldn't because it hurt so much. My body was covered in tubes; I had a tube down my throat connected to a machine to breathe for me; my body was swollen to double its size due to all the fluids I'd had and my stomach really hurt when the morphine wore off. the doctors told Mummy and Daddy that my gut had twisted in two places after the surgery and I had a congenital condition called malrotation of the gut - THAT what was causing some of my gut problems - my gut was back to front! Mr Jaffray had to untangle my intestines and put them back where they should be before putting my jejunostomy on the other side. I also got an infection called sepsis and I had a really high temperature and I was tachycardic. Mummy, Daddy and Granddad spent the night watching me and willing the numbers on the monitor to go down...

They did and by the next morning I had improved but mummy was still sad as she couldn't give me a hug. Mummy went back to Crawford House for a sleep but while she was gone my ventilator got blocked with some mucous and all the alarms went off and I went blue. Daddy was terrified and got pushed out of the room while the doctors and nurses rescucitated me. He phoned Mummy and she raced back over to the ward. I was fine but everyone was so scared. I didn't really know what was going on because I was still on a lot of drugs including morphine at that point. One by one, the drips and wires came off and after 4 days i was well enough to leave PICU. I now have a huge but neat scar which runs above my belly button, from one side of my tummy to the other. It took a while to heal but now the scar is part of me, part of my story.

I remained in hospital for a further month, we had to wait for my gut to begin functioning 'normally' again after the surgery and Mummy and Daddy had to learn how to look after me at home. They had to learn how to prepare my special milk, administer my medicines, use my pump and look after my new J-tube. I suffered a couple of hiccoughs during my recovery but finally, when I was six months old, I was allowed home!!

I should add, at six months old, I still only weighed around 10lb. My body was very skinny and weak. I couldn't even hold my head up yet. However, I was delighted to be home and was wasn't really sick all that much. When I was, it was stomach acid and/bile that came up. It made me scream when I was sick because it hurt quite a lot but generally, I was much better now. i even started smiling and playing with my toys!

Joely:

Hi everyone. Hope you had a good weekend - we have! We went bowling yesterday with Uncle Alex and his girlfriend. Uncle Alex won but only just! Granddad and Auntie Lindsay came later and we had a pub lunch. Marcus sat in the high-chair, licked his crisps and rusks and threw them all on the floor. He made such a mess, it was so funny.

We had a quiet day today. Mummy was marking exams and Daddy has been sorting out our holiday to Disney Land! It's so exciting. We're going because there's a CFC conference in July. Mummy and Daddy want to meet all the experts and some other families who have children who have the same condition.

This afternoon we all went to Katie's swimming party! Katie is my friend from nursery. I had a great time and swam with all my friends from nursery. Marcus and Mummy came into the pool too. Marcus LOVES swimming. Afterwards, we went into the party room and had our tea. I sat with Mary and Matthew. Mummy and Daddy met some of my other friends and their parents which was nice.

Mummy's going help Marcus to finish writing his story and put it on the site this week, so look out for that!

We're going to Newcastle tomorrow. Marcus is going to see a Speech and Language therapist at the Child Development Centre. Hopefully she'll be able to help him eat solids - SALTs know all about eating as well as talking, you know. Marcus will tell you all about that tomorrow. Hope you all had a good weekend. Bye.

Marcus' Story: November 2004 - January 2005

MARCUS' STORY: November 2004 - January 2005
After several visits to Dr James and no improvement, we were finally admitted to the Friarage Children's Unit for investigation and observation. Dr James was brilliant and tried so many different medicines for reflux, changed my milk and tested for everything he could think of but I still didn't get better. Mummy and Daddy were really worried and sad and I tried to get better but I couldn't. I couldn't even smile - what did I have to smile about? I just felt so sick. To make matters worse, Dr James put a tube up my nose called an NG tube and I was fed that way. It was easier for Mummy and Daddy to make me eat but I still puked all day and night. I spent 7 weeks altogether in the Friarage Hospital with Mummy. We didn't see much of Daddy and Joely at that time which was really hard for us all and we spent my first Christmas on the Ward. However, I was allowed out to Nanna and Granddad's for a little while on Christmas day. In the end, Dr James admitted defeat. On 13th January 2005, we said goodbye to the lovely doctors and nurses at the Friarage and set off for the RVI in Newcastle.

MARCUS' STORY: October 2004

MARCUS' STORY: October 2004
I never really liked eating. From the moment I was born, I was never really a hungry baby. Mummy breast fed me and I liked it but got full up really quickly, after about 5 mins, and was often sick straight after. Joely was so good at feeding and mummy just thought I was different. However, the midwife came when I was a week old and I had lost weight. She came again when I was 2 weeks old and I still hadn't put any weight on. After 3 weeks of no weight gain, I had to see Dr Pearson who noticed that my ears were a bit funny and he thought I ought to see Dr James at the Friarage Hospital.

Meanwhile, Mummy was getting really upset with me about my feeding. She was watching the clock while she fed me and waking me up in the night to feed me but I often wouldn't wake up and feed. When I did feed for a long time - I threw it all back up again. Poor mummy and daddy had to get used to the smell of sick and all the washing I created!

I went to see Dr James who noticed I had a heart murmer too called pulmonary stenosis. Dr Wylie was at Friarage that day and I met him and he did an echo and ECG. He then told mummy that I had 2 congenital heart defects and drew a picture of a heart to show her where the problems were. I had a little hole called a VSD but thankfully, that's gone now. Co-incidentally I had started with a little cold and Dr James said I had bronchiolitis as well as reflux.
Mummy went home laden with medicine, hoping I would get better...

I didn't! I lost another pound in weight that week. The bronchiolitis made me really poorly and I didn't want to eat at all. I looked and felt terrible. I had a really bad cough and I was sick even more than usual. Mummy started giving me Gaviscon but it didn't stop me from being sick at all. She stopped breast feeding me too so she could see how much I was drinking - she was on my case all the time!! She didn't understand how poorly I was feeling at all. She soon realised that I really wasn't drinking enough. I dreaded feed times. Mummy spent an hour dripping milk into my mouth which just made me feel really sick. She kept swapping bottles and trying different kinds of milk but i hated them all. I hated everything....I just wanted to sleep and to be left alone.

MARCUS' STORY: 20th October 2004

MARCUS' STORY: 20 October 2004
Hi, my name is Marcus James and I was born on 20th October 2004. Mummy had a normal pregnancy and I was born 3 weeks early weighing 7lb 15oz - so quite big for an early baby! My big sister was only 6lb 10oz and she was born on time. We know NOW that kids like me, with cfc, are often born early and a little on the big side! At the time, the midwife said mummy had probably got her dates mixed up. After 3 days in labour, I was born under water, in the birthing pool at the Friarage Hospital in Northallerton. The midwife invited a junior doctor in to watch because, she said, they never get to see a straight-forward delivery. Well, ironically, my delivery was just about the only thing that was straight-forward in my first year of life! When I came out, I looked a bit funny. my eyes were quite bruised and my skin seemed a bit big for me. Otherwise though, I seemed fit and well and was allowed home the next day.

HAPPY NEW YEAR!

Hello everyone and Happy New Year! I finally got around to starting to put together our blog. So many of you want to know how our little family is getting on - especially Marcus - so I thought I'd do a blog so you can read and see for yourself. I went back to school yesterday and Joely and Marcus returned to nursery on Tuesday. We're getting back into the swing of things after the Christmas holidays which, incidentally, were brilliant! Joely and Marcus were spoilt rotten and we spent lots of lovely time with our families.


Joely:
Nanna looks after us on a Friday while Mummy goes to work. Mummy came home at lunchtime and we all went swimming this afternoon; that's me, Mar-mar, Nanna and Mummy. Mummy played with Mar-mar in the baby pool and he really liked it and he kicked his legs a lot. Mummy thinks this will help make his legs stronger so he can play with me. Guess what Everyone!! Nanna took me into the big pool and I swam on my back with no arm-bands. I also swam 2 widths of the baby pool but I kept my armbands on. Nanna says in the swimming pool she's a swimming teacher and I have to do as I am told. When we get out the pool she hugs me and says, "Well done, I can be your Nanna again now!"

hello everyone!