The Weston Family Blog: February 2011

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

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

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Marcus' Story

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, sensory processing difficulties, hearing loss, short sighted, feeding difficulties, heart defects ... The list goes on an on ...

Today, Marcus is doing really well. He will be 11 in October and his speech is improving, he can read, he's eating solid food, and he's brilliant with technology. 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.

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!