Thursday, 6 November 2014

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I'm getting stronger!

Hi everyone!

During the past couple of weeks or so I have been continuing to make some progress, although the past week has been difficult because I have been struggling because my nausea has got worse again. I have been continuing to work on building some strength and 10 days ago I walked for the first time in months (since before my last stay in intensive care)!! I know that all of the bed exercises and then the seat-to-stand exercises that I’ve been doing have helped me to build up to this, but I also know that my nutrition improving has also played a big part. I can actually see some quadriceps (front of my thighs) muscle building! It felt so amazing to walk after so long! 

Mum and Dad helping me walk!

A few days ago, I started doing a bit more specific upper body exercise, with shoulder raises, gripping exercises and throwing and catching. It was good, and I feel stronger there than I have for a long time, too.

I last weighed myself a week ago, and I’d put more weight on again! Here’s how my weight gain has gone:-

03/10                     32.3kg
13/10                     34.7kg
18/10                     35.3kg
24/10                     35.9kg

30/10                     36.25kg

My albumin level has gradually come up, too, and was 28 earlier this week :-) That’s the highest it’s been for nearly six months!

Some of my blood results...

Two weeks ago they cultured Stenotrophamonas maltaphilia from one of my samples in the lab. This is the only bacterial pathogen that I have grown this year, and it is a bug that is multi-resistant, and they don’t know if it causes significant lung issues. They haven’t been able to test for antibiotic sensitivities, so I am on another two week course of ciprofloxacillin. Apart from the steno, I am still growing Exophiala dermititidis (the fungal pathogen).

10 days ago, we were told that the lab-tested sensitivities showed that the Exophiala is now “not as sensitive to the Itraconazole (anti-fungal drug)" that I have been on for a long time, and that a newer drug, Posaconazole would be more effective. So, I gave the Posaconazole a go for 24 hours, with a double dosing for loading. Unfortunately it made me so nauseous that I basically couldn’t do anything, including eat or do physio. Because of this I switched back to Itraconazole tablets, but I have had to change to IV Itraconazole, because although I was having 800 mg a day, they still were not reaching therapeutic levels in my blood. I've also gone back onto Caspofungin as I have been having temperatures.

I have started getting red patches and itching all over every evening when my daily dose of intravenous Caspofungin is going through. It has been driving me mad. So, I have started having Piriton to try to keep this under control. The lab tests suggest that the Exophiala isn't sensitive to Caspofungen, but I have been on Caspofungen a couple of times during my time in Bristol, and my chest symptoms have improved, so it seems to be an important drug for me. The difficulty is that this seems to be another drug that adds to a degree to feelings of nausea.

I started weaning down on my Vapotherm settings, and I swapped over from the Vapotherm machine to an Optiflow machine. So far, so good, and the Optiflow is generally more comfortable. I want to keep weaning to get off the Optiflow as soon as possible, so that I can start walking further, and start getting out and about again. I haven’t been out of my hospital room for more than a month.

Some nice things have happened over the past few weeks, too. I watched the repeat of the X Factor the week before last (it was dreadful!), had a cheese ploughman’s at 2am (to add to the X Factor cheese), did some Facebooking, and went back to sleep at 4am (3am, because the clocks went back). My bodyclock is something else, these days! The Halloween X Factor was much more entertaining by the way!

Also, I had some really exciting news. My first choice wish with the Rays of Sunshine charity, which I was previously told would not be possible, is now going to be arranged…I’m going to meet One Direction!!!! I'm so excited! I started up a kind of 'campaign' on Facebook, Twitter and Instagram, to try to get to meet them! Lots of people posted a picture I put together for my  #HarrietToMeet1D campaign, and the mum of a girl with CF who was meant to be meeting 1D through Rays of Sunshine, but had decided she didn't want to anymore, contacted me and said it may be worth contacting them to see if I could take her place (as only one person with CF can go to these meet ups due to cross-infection risks), so I got my dad to ring them up straight away and they said they were already going to offer it to me! I was over the moon!!! I can't wait!

I have started using Twitter again a bit more in the last week. I've had a lot of tweets and follows from celebrities! Here is some of the tweets I got...

I also got this weird tweet from James May...

What's his problem?!

Today we had a meeting with the doctors about transferring me to Manchester. They suggested that I could transfer on Monday, however it would be a transfer to High Dependency, as they are not yet trained on the Optiflow on the Respiratory ward. They can't tell us how long it will be until they are trained to use Optiflow on the ward yet, so I'm not sure whether I want to go until they're trained because I don't want to be stuck in HDU for a long time when I don't really need to be! It is very much a Critical Care environment, similar to Intensive Care, and my parents wouldn't be able to stop at night either! :-( So, I'm going to try weaning off the Optiflow, starting with having 30 minutes off to start with and gradually building it up.

A card from my friend Lily :-)!

Thank you for reading!

Harriet xox

Monday, 20 October 2014

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An eventful six months!

Hello everyone!

Sorry that I haven't updated this blog in ages! A lot has happened in the past 6 months...there has been a lot of ups and downs and I've been very busy! At the moment, I am in Bristol Children's Hospital again - I have been here since the 29th of June, the day after my birthday! So, I'm going to update you on what has been happening since I last updated my blog!

In May, I went into my local hospital for an admission, to start NG tube feeding again as my weight had gone down. The admission turned out to be longer than planned, as my CRPs - infection markers - had risen (but only to 16). Because of this, I could not go to the McBusted concert in Birmingham! I was gutted. But the kind nurses and doctors all put some money together (100 pounds in total!) for me to treat myself with! I had a horrible stay in hospital because I was forced to have some really unfair conversations. 

After the admission, I was looking forward to going to see One Direction in concert in Sunderland, however the consultant in Exeter would not give us a 'Fit to Fly' letter, so I unfortunately had to miss out on that concert too...:-(! I did get the chance to see One Direction in Wembley Stadium though! I loved the concert, the boys were amazing! I was still feeling very nauseous though, and near the end of the concert, I was sick and we had to leave early. We broke up the journey to London by stopping by at Cardiff on the way there. I was meant to go to a Little Mix concert there, but I was very tired, and had to give the tickets away. On the way back from Wembley, we stopped over at Bristol.

A few days after getting back home, I had to go back into hospital because my CRPs were up yet again. The day after being admitted I got a very bad gastric bug, which turned out to be the rotavirus. My albumin (blood protein) level, which had previously been normal, dropped into the low twenties (normal is between 35 and 50). 
Because of this, the worry was that fluid might begin to accumulate around my lungs (pulmonary odema). My albumin reached as low as 20, and the doctors said that if dropped any lower they would use a human albumin infusion to bring the levels up for the short term. I was put on Optiflow (like Vapotherm) to ease my breathlessness and in an attempt to "wash out" some of the excess carbon dioxide in my bloodstream. During the following two weeks, I had agonising pain in my abdomen and back. I was put on stronger and stronger pain killers to help my pain. Eventually, I was on lidocaine patches, paracetamol, oral morphine and tramadol, but nothing seemed to even touch the pain I was in. I spent my birthday in hospital and the pain was worse than ever. I didn't have a very good birthday, but I got some lovely presents - my parents and sister got me an iPhone 5s! The nurses got me two big cakes - a strawberry cheesecake and a chocolate cake - but I felt too sick to even try any of it!

Throughout this time my local consultant was trying every day to get an urgent inpatient transfer to the regional tertiary centre where the specialist gastric team are based. While I was waiting I had x-rays ultrasound scans and an MRI scan, and had daily visits from the pain nurse and anaesthetists in an attempt to find something that would reduce the pain. I also saw the Orthopaedic consultant, who confirmed that pain was "nothing to do with muscle or bone" and was therefore likely to be solely a gut issue. It had previously been asserted by both local respiratory consultants and a transplant consultant from London that my abdominal and back pain was largely contributed to by postural issues, which I always felt was wrong, so it was good to get this opinion from a specialist orthopaedic consultant.

On Sunday 29th of June I finally got a bed at, and transfer to, the tertiary hospital in Bristol. The two hour ambulance transfer was horrible, and I didn't have the best of starts on the ward, but one thing that gave me some instant relief from some of the pain was that they switched the tramadol from oral to intravenous. I was suddenly needing more oxygen and my breathlessness was worse. The following evening we found out that my potassium level was 2.7 and my albumin level had dropped suddenly and drastically to 15. I continued to feel worse with my chest over the next few days, and on the 3rd of July, in the evening, I started coughing up substantial amounts of fresh blood. The respiratory consultant on call came to see me and outreach nurses from HDU and ITU also visited. The ITU consultant in charge was also alerted. Thank God, after a couple of hours the blood had reduced a lot and eventually stopped coming up completely.

The following day, Mom and Dad suggested using a few different antibiotics that Mom had been reading some research papers on, and that they thought were worth trying. One of the antibiotics is an antifungal, which has been shown in research studies to work synergistically with an oral antifungal that I've been on long term. Mom and Dad had been asking our local respiratory consultants for some time to try this combination, to try to eradicate the Exophiala. Thankfully, the consultant at the tertiary centre went for it, because I felt some big improvements. My breathlessness got much better, and my oxygen requirement went back down. The results from my blood tests started showing some good trends too. The most exciting one was the Beta D-Glucan, which is a marker of the presence of fungal pathogens in the body. In me this had been extremely high, at over 500 for more than a year. At it’s lowest in mid July it was 66. This was amazing news for me because anything below 80 is considered normal levels! My CRPs had also come right down to 4. 

Back to my gut issues...during the first two weeks in Bristol I had loads more tests and scans, including a capsule endoscopy. I had to swallow a capsule containing a camera, which then transmitted images to a recorder which was attached to a belt around my waist. This gave detailed visual information on every part of my digestive tract...nice! ;-) I could see inside my body with an iPad app! It was very weird!

I was put on on an "exclusive" diet on July 12th, which basically meant that I had to exclude all food other than the broken down liquid feed which goes through my NG tube...I couldn't even drink orange juice, and I've drunk tonnes of orange juice every day for longer than I can remember! This diet wasn't fun, but I started to see some small steady improvements each day; my potassium levels seemed to be stabilising and my albumin and total protein levels were slowly rising (with albumin reaching 20 at one point), some of my other nutritional markers started creeping up too.
The really frustrating and worrying thing was that I was still losing weight each day, though. I continued to have some pain, although it was better than it had been, and nausea and vomiting continued to be a major issue. I had to have new NG tubes passed down every few days, due to vomiting them up.

I got to the point where I was able to get out of the hospital for a few hours some days; I managed to go to the shops, cinema and to the hair dressers to get my hair dyed pink! One of the gastric consultants suggested that I could start eating a few of my favourite sweets again, which I tried over the course of a couple of days. But then, my pain and nausea started getting worse again. The anaesthetists and pain team had to become more and more involved. One night, I was put on a morphine pump - it took until after 4 am for me to be able to sleep! The pain team prescribed a new anti-sickness drug which wiped me out completely. For pain relief, they added in buprenorphine patches and fentanyl lozenges. The pain, nausea, albumin levels and weight continued to get worse for weeks, but my chest remained in a relatively good condition compared to how it had been during the previous year. I was in more and more pain everyday, and the nausea and vomiting got worse and worse until eventually it was continual throughout the whole day. On Saturday August 16th, I suddenly started finding it really difficult to breathe, and was put on a Vapotherm machine to help. My albumin level had dropped to 13, and I was retaining lots of fluid, so they decided to give me an albumin infusion. After this my breathing got worse and the following day my nausea and vomiting, which it seemed couldn't get any worse, some how did get worse. I was exhausted, and my vapotherm settings were being pushed up and up in an attempt to support my breathing. I started feeling worse every time I had something pushed through my PICC line, and it was suspected that I had a line infection. In the early hours of Monday August 18th, my oxygen saturation kept dipping,  despite my vapotherm settings progressively being pushed up. The intensive care team came up to the ward and checked my blood gases. My carbon dioxide was over 11. I was given a number of bronchodilators in nebuliser form, which brought the CO2 level down a bit, but not enough. I was rushed down to intensive care with respiratory failure, where they put me on a bipap machine to help me ventilate, and they took my PICC line out in case it was infected.

I can't even remember being taken to intensive care. and don't remember anything about my first couple of days there. When I did start to become more aware, I started asking how I ended up there. I was confused because my chest had been in a better state than it had been for a long time, and there were none of the usual clinical signs of infection. It all seemed so sudden, too. 

Being in intensive was really hard again. It is so different from the ward in many ways, the environment and atmosphere is very different. They don't provide anywhere for someone to stop with you, either, but my dad stopped next to me for the whole two weeks, just sleeping on chairs next to my bed. My chest continued to be very clear throughout my time in PICU, and for some reason, from the day I was rushed there, the symptoms of my gut issues were greatly improved.

On the first day that I was in intensive care, my mom and dad had a meeting with my named consultant about the dangerous position that I was in. She proposed that they needed to just concentrate on stabilising my respiration and said that because of the risk of the bipap inducing vomiting, they shouldn't feed me via my NG tube, and said that my gut had "failed". Mom and Dad argued that my gut, although badly compromised, had not failed, and that if they did not feed me I would have no chance of getting out of intensive care. They agreed to start on a very low amount of continuous feed (10mls per hour), and to build it up slowly. I continued on bipap, with the settings slowly being weaned, for two weeks, 

After two weeks in intensive care on bipap, I had been getting some pain in the right side of my neck for a few days, when my physio noticed that there seemed to be something that might be air in my neck. I had an x-ray, and it was confirmed that the bipap had caused air to build up and collect in my neck. I was put on Optiflow, and then Vapotherm, at a 100% oxygen concentration, to help disperse the air. The following day, because vapotherm can be used on the ward, I was allowed out of intensive care and back up onto the adolescent ward. It was the 2nd of September. It's not exactly home, but it's so much better than being in ITU.

On the day that I came out of intesive care, my CRPs were 9, but two days later they were way up, at 160. And so started a roller coaster of bad days and better days, and lots of antibiotic changes. One new antibiotic, which I'd never been on before (Fosfomycin), made me feel really ill, and had to be stopped after two days. My vapotherm settings have been weaned down, and have then been put back up again a number of times. 

After my intesive care stay, because I lost even more weight and muscle, and was stuck in a lying position in bed for two weeks, I was left unable to walk, or even take my own weight enough to allow me to stand.

My gut issues have cotinued to improve slowly, and about a month ago, I was told to start trying some easily digestible foods orally. I first started trying the type of crisps that melt in your mouth, Quavers, Skips, and Monster Munch (Pickled Onion flavour, of course). Then I started trying some simple, low fibre cereals like Frosties and Sugar Puffs. As the weeks have gone by I have been able to eat more and more varied foods on top of my 2,500 mls of NG feed. The day after I stopped one of my antibiotics, Tigecycline, my nausea improved massively and I ate 4 meals, plus snacks. It's still been tough. because, as my digestive system is getting used to eating more solid and varied foods again, I have had  lots oif discomfort, but I am working through it all as best I can. It is working, because I have suddenly started putting a good amount of weight on. I was weighed on the 13th of October, and was found to have put on 2.5kg (5.5lbs) in 10 days, and then on the 18th I had put on another 600g (so thats's nearly half a stone in two weeks). My albumin level which has been really up and down, but very low for months, is now at 22, which is the highest it's been since being admitted to hospital nearly four and a half months ago. I am so pleased, and just want it to keep going up with my weight, and getting stronger.

The doctors here have been in contact with Newcastle hospital about the possibility of transplant. At the moment, my weight and albumin level is a problem, and I can't be listed at this point in time. It upsets me that transplant isn't an option, should I need one. However, I am now gaining weight, and my albumin levels are rising!

I try to keep myself occupied in hospital, but it can get very boring sometimes! I like talking to people on Facebook - I have made lots of lovely friends with CF on there - and I also like reading, drawing, watching films and chatting to my family. I've been sent lots of sweets from America from some of my new CF friends (yum!).

A few weeks back, we had a week organised by Readwell, a charity which gives books to children in hospital to keep them occupied, where some authors came to visit the ward. I met Henry Winkler (the Fonz) and Alex T. Smith (author of the Claude series). I also got free signed books from them and from David Almond, the author of Skellig. It was a fun week, and I found it fun talking to the authors as I would like to be a writer myself!

I would really like to be able to get well enough to get out to the ward for short periods of time. I would love to get to the shops and the museum/art gallery! I'm having a wish granted by Rays of Sunshine - a shopping spree! So I want to get well enough to do that.

In the last few days, I've been having abdominal pain and felt a little more nauseous. I hope this is just a short term thing, that will go away soon. The doctors are not too concerned, though, so that's reassuring.

Ooh! I almost forgot to tell you this! My family and I have a new house - in the Lake District! I'm so excited to move there. I will miss Devon a bit, but I'm looking forward to a new start in the new house! This means that I will also be under the care of a different hospital - the Royal Manchester Children's Hospital. A date hasn't yet been set for my transfer to the new hospital, but hopefully it will be soon.

Thank you for reading! I hope you're all well :-)! I will try very hard to update more often! You can follow me through my Facebook page and friend request me if you'd like! I love talking to new people, so just message me if you want! I hope you like the new look of my blog too!


Harriet x x x

Me on the Bipap

I had a visit from Louis the chihuahua!

My crazy mother! ;-) 
Before going out to the cinema to watch The Fault in our Stars

Me and Imi, my weirdo sister (but I love her!)
Some crafty bits I bought

Cinema tickets

Aww, my cute little Daddy ;-)! I think he was tired!

Sweeties from America!

My lovely birthday cakes - I didn't get to eat any!

Mmm, cheesy chips!

Outside the hospital

Getting my hair done

My swollen hand, after a cannula went wrong!

I wasn't allowed milk when I tried this - so I had to pour my feed over Sugar Puffs! It was surprisingly nice!

My sister and some children from the hospital school with Henry Winkler
My pink hair!

Wednesday, 23 April 2014

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Hi everyone!

Hope you all had a good Easter. I got lots of yummy eggs ;-)

I've been using my bike a lot in the past week! The first time I went on my bike, I did 1 kilometer, and I am now up to doing 2.5 kilometers! It's hard work, but every time I try to push myself a bit more. I have been going faster and further each time. I feel I am getting a lot fitter, and I really enjoy using my bike.

I haven't had such a good week in terms of eating, however, as I've been sick a lot! This won't be helping my potassium levels, which have been really low for a couple of weeks (2.6). A lot of the time when I eat, I feel nauseous and full, and my stomach hurts. When I cough after eating, I'm sometimes sick. I really hate feeling like this! 

Some more exciting news, though...I have started spending some time completely off my cylinder oxygen, for the first time in 8 months. The day before yesterday was the first time, when I spent 20 mins off, and today I spent 1 hour and 10 minutes off. I will keep pushing this, like when I was weening off the ventilator in intensive care, and hopefully I can get off the oxygen therapy completely. My lung function is generally stable, but my peak flow has improved. If I can start putting some weight on, hopefully my lung function will come up some more.

Yesterday, I went to my main CF centre, which is always really tiring at the moment, because it takes nearly 2 hours to get there, and then we spend 2 to 3 hours there before travelling back. I was really sick all night when I got back. I also came away with a CGM (continuous glucose monitor) fitted again, which is really uncomfortable. I'm feeling better today, though...trying to get plenty of potassium in, from supplements and coconut water (yuk). Dad's got me drinking peppermint tea at the moment too, to try to help my stomach...what a weird diet I have these days.

On Thursday, I went for a meal with my friends, Phoebe, Mollie, Beth, Laura, Kya and Millie at Pizza Express. I had a lovely time. It was the first time I'd seen most of my friends in about 10 months! It was really nice catching up with everyone. Here are some pictures of my outfit and from the night:

Next month, I'm going to Birmingham, to see McBusted play at the LG Arena with Phoebe! We're going to stop in a Premier Inn. I'm really excited! In June, I'm seeing One Direction and Little Mix! I'm addicted to concerts ;-)!

Thank you for reading!

Harriet xxx




Tuesday, 8 April 2014

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Exercise Bike

So, it's been another busy week! I had a physio from hospital come out to visit me at home for the the first time, and did some rehab physio on 3/4 of a litre of oxygen, which is half of the normal flow that I have been exercising on for a while. I have been on 3/4 at rest for the past two weeks, so I was very tired after exercising, and was quite exhausted the next day, so I had to sleep a lot. 

The Community Children's Nurse came out to visit us twice, too. She seems really caring, and very efficient. We think that she might be a big help to us, and it will be really good to have someone like that in contact regularly...she is going to visit us every week. 

I got a new piece of physio equipment to help with my rehab work, it is a recumbent bike. I used a recumbent bike when I was still in hospital in Bristol, and it really helped me, so I am hoping that I can get back into progressing with my cardio fitness, by using this. These things are always much bigger than they look when you order them from the internet, is a bit of a beast!

We are still waiting to get an appointment at Great Ormond Street Hospital. Mom and Dad had an appointment arranged for today, just for them to go to speak to a consultant about transplant assessment, but it would have meant us all travelling to London, because they have to do all of my treatments, and it was decided that it probably wasn't worth the risks of disrupting our routine, and tiring me out. So, Mom and Dad spoke to the consultant on the phone, a bit like a conference call sort of thing! Initially, the consultant had been speaking to a lot of other transplant doctors around the country to ask them their opinions about the viability of transplant for me, in light of the bug that I seem to have colonising my lungs, which is called Exophiala dermititidis. The general consensus seems to be that while this bug is still there, transplant wouldn't be an option. So, we need to just keep working on eradicating it, whilst keeping our other major goals of my rehab at the forefront. Mom has been researching a lot (as usual) and looking into all of the transplant issues.
The consultant said to expect a letter soon, inviting us to go there for CF assessment as opposed to transplant-focussed assessment, which is what we initially asked for.

Another thing that we are still working hard on trying to improve is my weight. I have put on a tiny amount of weight on, but I still feel very full a lot of the time, and if I try to push past this, I get very nauseous. Coughing often makes me feel sick too. We are still trying to shuffle things around and try new things to help me get more calories on board. Dad has got me having more coconut oil, which has all kinds of health benefits, including antimicrobial properties. We've also been trying to get some prebiotics and probiotics in my diet. 

Thanks for reading, and please keep following and sharing.

Monday, 31 March 2014

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Hospital Tests


Since my last update I've been very busy!

Last week I stayed in my local hospital for 2 nights to have some tests done, as I am going up to Great Ormand Street Hospital for a lung transplant assessment. This doesn't mean that I'm having a lung transplant for sure, but it's good to get GOSH's opinion. We're hoping that I won't need a transplant though. The tests I had done were; a CT scan (I didn't like this as they had to put a contrast dye in through my cannula and it really stung, and gave me a burning feeling all over my body!), chest x-ray, overnight capnography (to test for carbon dioxide, relating to oxygen levels), lung function (my lung function is up to 28 percent, which is 4 percent more than last time) and blood tests. We also had a meeting which a lot of different people attended, to put together my care package and set up things that I need at home to make me more comfortable. I think overall it was very positive! I did a walk test with my physio too, where I had to walk as far as I could in 6 minutes. I walked 155 metres in 5 minutes, with a 1 minute break in the middle. I was quite pleased with myself and the physio was surprised at how well I did! When I was on the ward, my friend Molly was also staying on the ward, so it was nice to see her and catch up with her!

A couple of weeks ago we also went to Exeter for clinic, and to meet with the diabetic consultant. I have started a new type of long-acting insulin called Insulatard, which I have in the morning, ,and if my blood sugar goes above 10, I have to take an injection of Novorapid insulin, too. 

As it was Mother's Day yesterday, my Mum, Dad, sister and I went for a walk on Marine Drive. It was really sunny! I took lots of photos with the camara that I got for Christmas, and had a really nice time! Afterwards we went for an ice cream in the village. When we got back home I had a sleep and then we watched a bit of the Woman in Black =O! Happy Mother's Day to my lovely Mummy for yesterday, I love her so much and she is always there for me! She is the best Mum in the world.

You can like my Facebook page here, friend request me on Facebook here or follow me on Instagram and Twitter! I will accept everyone's friend requests and follow you back if you ask!

Thank you for reading my blog!

Harriet x x x

Saturday, 1 March 2014

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Drawing Boards and Twitter...

Hello everyone!

Just a quick blog post to tell you what I've been up to for the last few days!

For the last 3 days, my friend I met through Twitter, Chris, has been helping me get lots of celebrities to tweet me! Chris had a heart and lung transplant 6 years ago. I'm really grateful for all his hard work and time helping me! He's very brave and amazing person! Here are some of the tweets that I've recieved:

You can follow Chris here and you can follow me here.

In my last blog post I mentioned that I'd love to get back into drawing, as I love art, but I found it very hard as I've been very shaky! But yesterday, Dad and I tried drawing and I wasn't too bad! Here is a picture of our drawing of an elephant:

Thank you for reading! Remember you can follow me on Twitter and Instagram or add me on Facebook.

Harriet x x x
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