Saturday 29 December 2007

HAPPY NEW YEAR!
















Hello Everyone!

We have had a fantastic Christmas! Thank you everyone for all of our presents; we did so well this year and were completely spoilt. Santa brought Marcus a Little Tykes "Quadbike" - It's battery operated and has a real accelerator. He brought Joely a "Baby Chou-Chou", a baby seat and a double buggy for her dollies.

On Christmas Eve, Nanna and Granddad; Grandma and Pe-pe and Great-Granny all came to Richmond. We went to St Mary's together for the crib service then back to our house for tea. (Mummy made a "Jamie Oliver Chicken" which was yummy.) Grandma and Pe-pe stayed over on Christmas Eve and opened our presents with us on Christmas morning before driving over to Sheffield to join Auntie Fiona and her family for lunch. Then we travelled to Ripon for Christmas lunch with Nanna, Granddad and Uncle Alex. We all recieved even more presents ("Thanks Uncle Alex for all the dolls clothes," says Joely.

Joely got Chicken Pox a week before Christmas so she was covered with spots for Christmas day! She had around 30 of them around her mouth which had all formed scabs in time for Christamas. Marcus had it too a couple of weeks before so we don't need to worry about the Chicken Pox anymore.

On Friday, we went to David LLoyd's with Auntie Bridget, Uncle Joe, Holly and Maisy. we went swimming, played in the soft play and had tea together. It was such a great day; we swapped presents and Auntie Bridge looks great - her bump's getting quite big now!

Marcus is doing so well at the moment. He's put on about 1.5 kg since his birthday and is gradually becoming stronger. He really enjoyed Christmas this year and opened all of his own presents.

We're now looking forward to spending New Year in Cumbria with the NCT families; at Sarah and David's house - we all met at ante-natal classes when I was pregnant with Joely. We have 9 kids (with another on the way) between us now!

Hope you all had a lovely Christmas too and wishing you all a Happy New Year xxxxxxxxxxxx









Friday 23 November 2007

hello Everyone!














































Hi all, I hope everyone is as well as we are! Mummy has been so busy lately and hasn't had a free moment to update you all. Last month was a whirlwind of social engagements - firstly, it was my 3rd birthday. I celebrated in style with a party (unfortunately I slept through most of the proceedings) and all of our friends came a bought me LOADS of great presents, thanks very much to you all. The following day, we went to nanna and Granddad's house; Granny and Auntie Judy were also there to see me.


As it was half term, we then went to Manchester to stay with Grandma and Pee-pee. We had a great time there and went to the farm to see the animals. Joely and I had a great time.

Developmentally, I'm doing really well. I'm rolling and shuffling around much more and still communicating very well. Mummy thinks I'm really funny now and great company.

Hope you enjoy the pictures above.
Love Marcus xxxxxxxx

Saturday 22 September 2007

Hello Everyone x






















Hi All,










My big sister, Joely, started school at the beginning of the month. Don't you think she looks grown up in her school uniform? She's doing really well.

I'm doing brilliantly at the moment. Dr Bunn put me back onto Paediasure which is working a treat! I've been drinking loads and even put some weight on this month which has made everyone smile. I tried eating a little bit a couple of weeks ago but lost interest - it's too much like hard work. I still like licking crisps though. I like choosing my own crisps in the corner shop.

I hadn't had Portage over the Summer holidays and Michelle was pleased with the progress I had made since she last saw me. My upper body is getting stronger and I can take my weight on my legs for quite a while now. She said my communication was the area where she could see the most improvement. I'm starting to talk now, I can say dog, light, baby, dadda, mamma, Mar-Mar, Baa Baa and Moo Moo. I can do about 30 Makaton signs now too.

The other big news is that I now wear glasses - I'm actually really rather short-sighted. What a difference my spectacles make. I can see now. I didn't realise Tesco was filled with toys - I can now point, grunt and sign to mummy and she's so thrilled that she buys me a toy; how fantastic!

Hope you enjoy my photos. Catch ya later. love Marcus xxxx

Wednesday 15 August 2007

CFC Newsletter - Marcus' Story

This is a copy of our story which I have sent to CFC for the next newsletter!

Isn’t it funny, the most complicated of puzzles always seems so obvious…once you’ve discovered the solution? This was definitely the case with Marcus.
On the 17th October 2004, my friends and their children had come round to our house to play. I had finished work just three days before and was already feeling quite strong twinges but I still had almost four weeks to go before the baby was due. I was huge! That afternoon, my friends joked that I seemed preoccupied; and I was … I was wondering whether the baby was coming! My bump was so big, there was no way it would stay in there for another 4 weeks; there wasn’t any room left!
Three days later, I was in bed cuddling my husband and my newborn baby boy. We were ecstatic. He was huge: 7lb 15oz and three weeks early. The midwife commented that he appeared more mature and we noticed his face was pretty puffy and bruised. He also looked as though he hadn’t quite grown into his skin. We put this down to the fact he was early and was stuck in my pelvis for three days. That first night, I noticed he didn’t feed well, but thought little of it. The next day, Marcus was checked over by the Paediatrician who noted his droopy eyelid before allowing us to take our new bundle home.
After just three days at home, we had to take Marcus back to the hospital. He had quite a nasty eye infection and his droopy eyelid was really swollen. We were pretty concerned about his eyes; they looked really sore, very swollen and a bit wonky. Over the following two weeks, his eyes improved but his feeding was becoming problematic. I was breast feeding but knew he was not feeding for long enough or often enough. He was also vomiting pretty regularly. However, I wasn’t overly concerned until he was 2 weeks old and had still not regained his birth-weight.
At three weeks old, Marcus contracted RSV virus and refused to feed altogether and lost another 8oz - he was now four weeks old and only 6lb 15 oz, a whole pound lighter than when he was born and he looked terrible. We were desperately worried about Marcus, he’d been prescribed reflux medicine to control the vomiting. It didn’t make any difference and I began bottle feeding so I could be sure about how much milk he was receiving. Life was becoming increasingly difficult by this stage. We had to take towels with us if we went out because he was vomiting so much. I was also spending almost all day feeding Marcus, drip by drip. He would arch his back and scream every time the milk touched his tongue. It was as if he knew it would cause him pain later down the line. He started to scream when you brought the bottle near him. Despite spending every waking minute trying to feed him, he still wasn’t taking enough to grow. Marcus also slept through at night, I’d have set the alarm clock to wake me up so I could force feed Marcus - it was such a dreadful time. I’d sit in bed sobbing, why won’t my baby eat?
At this stage, Marcus was admitted to hospital where they discovered his heart problems - which are quite mild fortunately. The doctors also changed his milk, added some more reflux drugs and started naso-gastric feeding. We went home for another couple of weeks but Marcus still didn’t gain weight. The vomiting worsened as he couldn’t cope with the increased volumes we were forcing on him with the NG feeds. Going out was impossible with the vomiting and every time someone asked about his NG tube, I cried. I didn’t know why he had it, why he wasn’t growing or what was wrong with my baby.
Around this time, our GP commented that Marcus’ ears were rather low-set. I was furious, what did his ears have to do with anything? I was more concerned about his feeding, that’s why I went to see him. He said, “You can’t make a baby eat if they’re not hungry.” Great! Really helpful….NOT! I got straight on-line and Googled “Low-set ears.” I was gob-smacked by what came up on screen. Noonan Syndrome. This was the first time I’d really considered that there may be something serious and long-term wrong with Marcus. I read the symptoms: low set ears, wide-spaced eyes, loose skin, pigeon chest, heart-defects, and developmental delay. Marcus was lying across my knee. I looked at him and then at the screen…and back to him. I knew in my stomach, this was it, The GP was right.
Eventually, Marcus was readmitted and remained in hospital for another 7 weeks while the doctors tried bolus feeds, continuous feeds, experimented with milk and reflux drugs. He had all sorts of scans and x-rays to try and determine his problems but to no avail. I asked the doctors there about Noonan Syndrome - they didn’t think so, his feeding problems were too severe, they didn’t fit.
At 15 weeks old, we said goodbye to the brilliant staff at Northallerton and Marcus was admitted to the Royal Victoria Infirmary in Newcastle, 50 miles away from home. He had just regained his birth weight and the doctors there decided to perform biopsies of his gut and insert a central line so they could get some nutrition into him. His gut biopsies were normal, as was the barium study, MRI scan, chromosome studies and abdominal scans. Marcus was fed via parenteral nutrition and NG tube for the following few weeks.
Meanwhile, Joely was almost 2 and her life had been turned upside down with Marcus’ arrival. We were all missing each other but there was no easy way to manage the situation. When Marcus was transferred to Newcastle, family life became easier in some ways as we were all able to stay in Crawford House, accommodation provided for the families of poorly children by The Sick Children’s Trust. We ended up living there for 3 months.
At first, Marcus seemed to make little progress and the doctors were no nearer to determining why he couldn’t feed. We were visited by the genetics team who felt there might be a genetic reason for his problems. Again, I asked about Noonan syndrome, and they said they didn’t think his problems fitted that pattern.
After 4 weeks at the RVI, Dr Bunn struck gold. She thought it might be worth feeding Marcus into the top of the bowel, into his jejunum. It worked, Marcus gained weight, the vomiting improved and he slowly came off the parenteral nutrition. We decided it would be best for Marcus if he had a surgical jejunostomy inserted so we could take him home and feed him that way. We were so excited, we had a solution.
Our excitement was very short lived. At 5 months old, he went to have the surgery to insert the feeding tube. It all appeared to go well but later that evening; it became clear that Marcus was very unwell. His heart was racing, blood pressure was high and his breathing was much more rapid than usual. He was writhing in pain. The surgeon sat with us all night, then Marcus’ nappy filled with blood; rich, dark and red. He had a couple of blood transfusions before being taken back to theatre in the morning.
Then we waited…and waited… After about four hours, the surgeon came and explained that Marcus had malrotation and because he’d inserted the J-tube using key hole methods, the gut had knotted in two places and caused a volvulus. He felt the surgery had gone well; he’d re-situated the j-tube on the other side of the abdomen and performed a Ladds procedure to correct the Malrotation. He said we’d be able to see him soon…
4 hours later, they still wouldn’t let us see him and no-one could tell us anything. Gary and I were going out of our minds. Eventually, it all got too much and I threatened to go and find Marcus myself. The Sister took us to PICU and sat with us in an office, the surgeon, who told us the surgery had gone well, entered. I knew it was bad. I was terrified. Why had he brought us into his office? Had Marcus died? I waited for him to speak; I didn’t trust my own voice. His words are a blur to me now but he explained that Marcus had taken a turn for the worse while in recovery. He had sepsis and he was on a ventilator. “Can we see him?” I heard myself ask. I held Gary’s hand very tightly as he led me into a cubicle. There was a baby on the bed, intubated, sedated, swollen and very bruised. He didn’t look at all like he did this morning. I had to look closely at his face just to make sure they hadn’t made a mistake. “Is he going to die?” I asked suddenly.
The doctor replied in a soft Scottish accent, “I suppose the honest answer is yes, he could … but I don’t think he will.” That was enough for me; I focused on the surgeon’s faith or belief in Marcus. I didn’t think he would die either.
My Dad drove up to Newcastle that night and the three of us sat in vigil around Marcus’ bed all night. We stared at the monitors; praying, willing the numbers to reverse - willing his temperature and heart rate down. Marcus little body lay still on the bed for most of the evening, only moving when the sedation wore off. We sat watching the rise and fall of his little chest, inflated with every compression of the concertina within the ventilator chamber. His tiny body was covered in wires, tubes, canulas, blood and adhesive plaster. By morning, the worst was over, his temperature was down, his heart rate had stabilised. Our prayers had been answered.
After a week, Marcus made his way back to ward 7 and we were able to start using the jejunostomy to feed him. We did have a few teething problems but by the time Marcus was six months old, we were all back at home in Richmond.
This marked a new phase in our lives. It was very frightening at first, having a small baby fed permanently, twenty hours a day via a pump. He was attached to a drip stand at home and we had a little ruck-sack to put the pump in when we went out. Gradually we got used to it and all the people coming to our house to attend to Marcus’ needs - we now fondly refer to them all as ‘his entourage’. They’ve become friends, the faces change sometimes but their presence is ever felt. They come in the shape of the community nurse, health visitor, dietician, physiotherapist, speech therapist …
Marcus still didn’t grow too well, and the next year was a struggle. We tried many different types of milks and regimes. Eventually, we found that Paediasure worked and his weight improved dramatically but his vomiting gradually got worse again. Sometimes he’d vomit green bile up to 10 times a day, writhing and screaming in agony. We went back and forth to see the doctors but they couldn’t find a reason why he was so sick.
Meanwhile, we were trying desperately to get him to feed orally. I managed to get him to drink water and eventually, after one particularly sicky weekend, I stopped his feeds and waited. I offered him water which he took readily and then I tried offering some milk - he took it!
He has been taking his milk orally for a year now. At first he lost a lot of weight but he seems to have found his own line at the bottom of the centile chart now. I believe Marcus cannot cope with huge volumes of feed, he like little and often. He vomits very rarely now, only when he’s drank too much or is poorly. He doesn’t eat solids yet but we’re working very hard on that at the moment.
Marcus was diagnosed with CFC last November, just after his 2nd birthday. It came as a shock at first but within a few days we realised how lucky we were to know for definite, what was wrong. Knowing is far, far better than not knowing. And all the pieces of the puzzle fit together and seem so obvious now. Marcus has always itched and sweated. He has sparse curly hair, low muscle tone, ptosis… you know all the rest …
Marcus is doing really well. He’s still fairly delayed but that’s to be expected given that he spent the first year of his life completely malnourished. He will be three in October and he can bottom shuffle, stand supported, sit, roll and converse very effectively using a combination of Makaton, words and sounds. He’s a complete joy to us and we appreciate each and every milestone all the more because we know how much effort and determination it’s taken him to reach it.
At the conference, in July this year, we met our CFC family. We all share different versions of the same story. Thanks to the doctors who figured out the puzzle, we now know why and how Marcus struggled so much at the beginning and why he has so many complex problems, and it all seems so obvious now!

Conference Pictures at last!!!







Marcus from England with Marcus from Denmark!!



Me with the clever doctors




Jacob and Me - aren't we similar!!




The CFC Conference was just amazing. We met so many amazing families and doctors and mummy and daddy learnt so much about my condition and how they might be able to help me in the future. The workshop led by the Speech and Language therapist was very relevant so much to us at the moment and we learnt lots of new ideas to help me to eat. I've actually been licking sandwiches this week. The clinic session was great and the doctors thought I was doing prety well.




The best thing was meeting all my CFC friends from around the world. Mummy and Daddy really enjoyed talking to all the other families. Hope you like my pictures - sorry there's not more pictures but it takes a long time to upload them on here. Mummy will try to put an e-mail address up so you can see more.




















Tuesday 3 July 2007

Where's Summer????





























Hi All,


I've had a great six weeks since I last posted. Mummy's been too tired to post on here because she's been training me to sleep - hard work, I can tell ya! She's stopped feeding me all night and trying not to feed me everytime I wake up. The first two nights, I didn't really understand why she didn't come when I cried and I cried for 3 hours non stop! Eventually though, I got the hint and I've been sleeping well between 11pm and 5 am - A huge improvement and we all feel a lot better. I think I've even grown a bit since I've been sleeping better.


We've had lots of days out, even though the weather's been yucky. We went to the Army open Day in Catterick last week. It was really muddy and we had a look in a tank, a helicopter and had our faces painted! I especially liked the band - I clapped along.


We go to Orlando to the CFC Conference in 2 days! We're all so excited about meeting our CFC family. Mummy and Daddy have packed everything and we're all set to go. We're driving to Manchester and staying at Grandma's house tomorrow.


Physically, I'm progresing well. I've been rolling, shuffling, standing and enjoying rough play. I've got around 15 signs and 5 spoken words now.



The next time you hear from us will be after the CFC conference so wish us luck and I'll post all my pictures to share with you on our return.

Love you all



from Marcus Weston xxx


PS Hi Granny - did you manage to log on????

Monday 21 May 2007




Hi All!




I'm doing so well at the moment. I'm shuffling everywhere on my bottom now - into everything! I love pulling books off the shelves, you know, just to wind mummy up. I've also mastered a couple of new signs; I can sign 'eat' and 'piano' now. I can also take my weight on my legs , this is a huge break-through. I love it when Mummy sings 'ring o roses' while I stand up - then I bump on my bum.




It was Mummy's day off today and we went shopping in Darlington. Joely got some new nighties and we had lunch in Binns. I had a packet of crisps which I licked and threw on the floor. I love eating out because I like to wave to people on the other tables. I drank my milk sitting up in the high chair like a big boy too (mummy had to help me hold it though!).




Tomorrow, we're going to music group and I've got a portage session afterwards with Michelle.




6 weeks til America!!




See ya




love Marcus xxx

Friday 11 May 2007

A Lovely Weekend!












We had a great time last weekend. Nanna and Granddad brought their friends from Warwick, up to Richmond for the day. We showed them Richmond Castle, the water falls and Easby Abbey. Then we all had a delicious lunch in the Turf. Hope you enjoy our pictures.
The other big news is Daddy's new job. He starts his new job in Durham prison in a couple of weeks.
We are counting down the weeks until we go to Orlando! We're almost organised now - thanks to daddy; he's so organised. Bless him!



Thursday 5 April 2007

EASTER 2007

Hi All! I've had a fabulous couple of weeks. Joely and I went on holiday to Nanna and Grandad's house in Ripon last weekend. We stayed overnight by ourselves and had a great time. I was a good boy for Nanna and didn't keep her awake at night! Mummy forgot to pack Froggy though so Grandad had to buy me another one! Mummy and Daddy went out with some friends of theirs who they met when I was in hospital when I was a baby.

I have some big news for you all - I can now shuffle on my bottom! The world is my oyster now! I'm not that fast yet but boy am I determined when I want something. Mummy now has to watch me all the time because I can shuffle towards tables and shelves an pull things down on myself. I have also started to bear some weight on my legs. I tire easily but I enjoy being held up to interesting places and bumping onto my bottom when I've had enough. I like praise - a lot - and everyone's got sore hands from clapping everytime I do something interesting

On Tuesday we went to see our friends' new baby - the beautiful Jennifer. Congratulations to the Jinks family. XXX

Today, I've been to see my opthalmologist in Northallerton and the Gastro doc in Newcastle. I've put on 1/2 a kilogramme which makes me 9.3kg (20lb 7oz!) I was 8.8kg 6 weeks ago so Dr Bunn was really pleased with me.

Tomorrow, we're going to Warwick to spend the Easter weekend with Nanna and Grandad. We're also going to Stratford on Saturday to meet 2 other families who have kids with CFC like me! We can't wait. Esther is 4 , has CFC and she's the same age as Joely. I'll tell you all about it next week and hopefully post some pictures.

Have a great Easter everyone
Love Marcus xxx

Saturday 17 March 2007

Joely's 4!


Auntie Tracy in the ball pool

Rosie and Woody


Joely and her new bike


Auntie Sarah (Yummy Mummy to Rosie and Woody), Holly and Joely



We've had a great week. Joely celebated her 4th birthday on 9th March. As usual, Mummy didn't take nearly enough photos but here's some of me, my sister and my friends. Joely had 2 parties then Sofia and Saul came to stay with their Mummy and Daddy. Joely got loads and loads of presents from everyone and she sends a big thank you to you all.
Anyway, after all that partying, I've put on a few ounces. I've been drinking like a fish and it shows. I've been up all night hitting the bottle but strangely enough, Mummy and Daddy don't seem too pleased and aren't keen on joining me for a drink....can't think why!
Hope you all enjoy the pictures
Love Marcus xxx

Saturday 24 February 2007

Sleeping Through!

A mixed week, all in all. Mummy and Daddy are really pleased with me because I'm managing to sleep through from about midnight until the morning, which is a HUGE improvement. My sleep patterns are still a bit mixed up though. I've been sleeping in late in the morning and falling asleep in the day so I don't want to go to bed at 7pm. Mummy's trying really hard to keep me awake through the day... without much success! I'm exhausted after nursery. It's wierd, it seems the more I sleep, the more I want.

Mummy and Daddy are also worrying a lot about my weight, I still haven't put any on since I came off the tube back in August... I had a really good few days at the start of the week and drank about 900mls/day and then I went back to my usual amount.

The nursery ladies have been working hard with me, I've been getting involved at meal-times, licking sandwiches, crisps and biscuits.

Mummy's been e-mailing lots of families around the country and the WORLD from cfc international and learning lots about my condition. We can't wait to meet them all in Orlando in July at the conference.

Have a good week everyone xxx

Wednesday 14 February 2007

Happy Valentine's Day!

My tube is out! Mummy and Daddy took it out on Monday! They just needed to take it out and put a dressing on and it's healing up nicely - no going back now. It doesn't even hurt.

Day 5 of the weaning experiment - Mummy and Daddy have decided to put me back on the high calorie stuff. I haven't been drinking or eating enough and I feel really tired. We'll try again in a couple of weeks but meanwhile Mummy's going to keep trying to give me solids.

Joely and I went to nursery today. We gave Mummy a plant and a card for Valentines day which we made at nursery. Daddy bought Mummy an beautiful orchid and we bought
Daddy a 'love muffin' for his packed lunch.

Yesterday we went to Ruff and Tumble with Auntie Bridge, Holly and Maisy. While Mummy was getting ready, Joely made herself a picnic to take. She got the chocolate spread out of the top cupboard by standing on a chair, the butter out of the fridge and a plastic knife out of the drawer. She made a beautiful sandwich, cut it into squares and put it neatly into a sandwich bag with 2 yoghurts and a drink! She didn't make hardly any mess either. Mummy started to tell her off then decided Joely was probably rather clever and had saved her a job! Mummy did tell Joely though that she must never touch the toaster, kettle, knives or the cooker on her own and Joely said, "I really know they're dangerous Mummy."

Sorry no pictures - Mummy has lost the digi camera - hopefully a temporary loss only!

Seeya soon xx

Monday 12 February 2007

Feeding issues...

Mummy is trying to help me eat solids by making me hungry at the right times. I've not been having any milk between midnight and breakfast - it's not making me eat though. I'm really cross Mummy won't feed me in the night and I won't drink in the day, I don't like to. Mummy has also been giving me normal, blue top cow's milk which makes me even crosser. I'm not having as many calories with normal milk and aswell as not being fed at night, I'm STARVING and CROSS. However, I still don't want to drink in the day or eat solids - If I hang in there long enough mummy will give in and I can go back to my usual routine of drinking all night HA HA HA...

On the positive side, we now know I don't have an allergy to cow's milk and I've been licking lots of crisps and banana. I even had a lick of baby rice today and didn't cry! Maybe I will give mummy a break, I'll think about it. Seeya x

Thursday 8 February 2007

Newcastle!


We went to the Royal Victoria Infirmary today for a check up. I went to see Tracey on ward 7 first - she said I was a really big boy! I don't like nurses though, I know she's not a nurse but she looks like one with her uniform on. I thought she might stab me with a needle or something; she didn't though. Joely remembered Tracey because she looked after her a lot when we stayed on the ward. It was weird for mummy to see all the poorly babies on the ward, it reminded her of how poorly I was.


We had lunch in town, then we went to our appointment ith Dr Bunn and Helen, the dietician. They were quite pleased with me but the fact I haven't grown in ages is starting to worry everyone again. We've got a plan to try me with cows milk through the day to tickle my taste buds. The doctor also said that I won't need an operation to take the j-tube out, we can just take it out and it will heal up - Mummy's tempted to just whip it out but will probably wait until I'm growing well.

Tuesday 30 January 2007

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.

Tuesday 23 January 2007

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

Thursday 18 January 2007

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

Wednesday 10 January 2007

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!

Tuesday 9 January 2007

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!

Sunday 7 January 2007

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.

Saturday 6 January 2007

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!