Planting that seed of doubt…

100,000 Genome Project…

The views and opinions expressed in this post are my understanding of this project and not necessarily 100% accurate. The process in which we went through may differ from others.

As you will understand from my initial post, Edith has no formal diagnosis. We know that the issue lies within the white and grey matter of her brain, but we still don’t know what caused the brain to develop in such a way. Since Edith was born we have seen a number of different doctors at the hospital specialising in neurological, genetic and metabolic disorders and no one can seem to find an answer. Edith has had various tests for various disorders, all of which have come back negative. At the end of 2015 she had a skin and muscle biopsy to try and determine if the problem was within the muscle structure, obviously this was also negative and we now know Edith’s difficulties are due to her brain malformation. The doctors believe there are issues with the way Edith’s brain communicates with her muscles and that’s why she is hypotonic (floppy) and slow to process and learn. We always said that Edith was a really strong child at times and considering how weak she was this didn’t make any sense, we now know it is due to the breakdown in communication between the brain and the muscles.

At the beginning of 2016 we were made aware, by Edith’s Geneticist and Neurologist, that Genomics England, a company wholly owned and funded by the Department of Health, were sequencing 100,000 genomes of NHS patients (and their immediate families) in the hope to provide a diagnosis for some patients with rare diseases. The project will also focus on gathering information to help understand the genome of rarer cancer tumours and adapt cancer treatment accordingly, develop a genomic medicine service for the NHS and support clinicians, researchers and companies (any size) to develop new diagnostic tests and medicines. For those of you that don’t know, the genome is all of the genetic information stored in the body’s instruction manual and recent developments in science now mean as well as sequencing panels of genes, they can now sequence an entire genome (Wow, I know!). Edith was an ideal candidate for the project as it is likely that the way her brain developed was because of a genetic problem.

To try and find an answer, they would look at the entire genome of Edith, myself and Dan. In August last year we were invited to a meeting with Amy, one of the medical professionals involved with Genomics England to discuss the process, what was involved and what was necessary.  We were told that they would take a blood sample from each of us and through process of elimination, they would try and find an answer as to what makes Edith, Edith. They have advised us that they may not be able to find an answer for us but the blood we have given will be used to provide information for invaluable research and even help future families. If we don’t get an answer in the near future, this doesn’t mean we never will as the project is working to develop new tests all the time.

As part of the project we were offered to have raised, any additional findings. This meant that if the project were to find anything that is relevant to the future health of Edith, Dan or I we could be informed. The additional findings process is a difficult one to explain or delve into as it’s so extensive. The further the project develops and the more patients they recruit the further their knowledge of sequencing and understanding the genome will expand. This means that the additional findings they are looking for initially may be added too as the project grows.

This project is colossal and we are so fortunate to be part of such a major breakthrough in understanding the genome. Although we may never get an answer, we will be safe in the knowledge that another family out there facing the same as we do, may well get theirs!

Advance and Rotate…

Our PEG Journey 13.06.17

We arrived at BCH (Bristol children’s hospital), ward 31, just after 12 noon with all our paraphernalia. We were met by the lovely Andrea, who just happens to be the mum of an old school friend, and she showed us to Edith’s bed. We had our own room, which with a child like Edith is an absolute god send! Edith is easily disturbed when sleeping so our own room meant it would be easier for her to rest after the operation and it also meant we could spread out and have room for her specialist chair. We settled in and waited for the anaesthetist and surgeon to visit. The surgeon explained the procedure to us again. They would feed a small camera with a bright light on, down Edith’s throat into her stomach. When they could see the light shining through in the right position they would use this as a marker to make a hole for the tube. The whole procedure would only take between 10-20 minutes. They made us aware of the potential complications, as with any surgery, but they were all very low risk. After she had left the nurse arrived to do some observations and check Edith’s glucose levels (Edith had a previous issue when she was starved for to long and her glucose levels dropped very low), these were all satisfactory. She explained that there were three children on the list and Edith would be the third to go down as the others were only babies and that she would keep a very close eye on her levels. Edith was quite sleepy now as she hadn’t eaten since 6:30 am and was feeling quite weak. A few hours later a nurse appeared with a hospital gown and asked us to get Edith ready to go down.


Shortly after we got her ready, it was time. As I followed her bed down to theatre it dawned on me that this was not the lengthiest procedure she had ever had, but it was the biggest. It would change her life; our lives, for the foreseeable future. I held her hand and reassured her as she was put to sleep, she struggled which was absolutely heartbreaking but all I could do was tell her that everything was gonna be alright; I left that room and fell apart. I had held Edith’s hand through a few anaesthetics before this one, yet this one seemed so much harder and so different. When I had cancer I had three general anaesthetics in total and even though I had never had one before, the first two seemed pretty underwhelming. The third was my hysterectomy, the life changer and I literally sobbed to a perfect stranger as they put me to sleep. This is all I can relate the overwhelming feeling too, my precious baby would be different somehow. The nurse threw her arms round me as I was crying so hard, I actually snorted (I know right!!). We made our way back to the ward. The nurse said that Edith would be a couple of hours so Dan and I went to get a coffee and some food.

We arrived back to the room and had only been there 10 minutes when the nurse came in to say that Edith was ready to be collected from recovery. She said the operation had all gone well and was very straight forward. As I approached the recovery bed Edith looked at me and gave a little smile. I stroked her hair and kissed her forehead, it was so good to see her little face; all of it (no nasty tube). She made a few groans as we made our way back to the ward but mostly after that she just slept. Before the operation the surgeon had said that Edith wouldn’t be able to have any milk until the next morning which at the time we felt as though it would be a nightmare, but looking at her now it was clear she would be mostly asleep anyway.

It was a long night. As Edith was asleep for most of the afternoon she woke up at 1am and decided that was wake up time, although as she was still weak from the anaesthetic she was happy just looking at her toys and wasn’t upset or in any discomfort at all which was great. The nurses had hooked her up to a drip so she was able to have a slow intake of vital fluids, painkillers and her vital medication overnight, and I think this was keeping her hunger at bay.

The next morning the doctors did their rounds and instructed us to start to feed Edith again, but just to build up her volume of feed gradually. We did as we were instructed and it was all going really well. Dan insisted I went home for a few hours as I hadn’t really slept and Edith seemed fine so I decided this was a good idea. Whilst at home I had a phone call from Dan to say that she had been quite sick with her afternoon feed, he assured me she was ok and that the nurse had said it was quite common in these circumstances. I made my way back to the hospital in time for the next visit from the doctors. We had naively hoped that we would be able to take Edith home that evening but as her surgery was so late on the Tuesday, they said that they felt it was best Edith stay in another night. Her feed that evening went well and we both got a good nights sleep. Edith was much brighter the next day and even managed a little giggle.

Over the course of our stay we took it in turns to feed Edith and gradually built up her feed volume. Feeding through the PEG was much the same as the NG tube except we didn’t have to check the PH level as we knew the tube was directly into the stomach. By the Thursday morning we felt totally comfortable with the procedure and had been signed off by the nurse. All our community support and milk was already in place because of the NG tube, so it was going to be a much more straight forward discharge this time.

The surgeon visited us first thing Thursday morning and was more than happy with Edith’s progress. Edith was sat up in her chair when she arrived and after a quick check of the site we were free!!

We had so much left to do in preparation for our holiday on Saturday and obviously getting Edith strong was my main priority. She was still very weak and slept lots at home on Thursday and Friday….

She wouldn’t normally fall asleep on the sofa, only when she is poorly. This is the only time I can steal a cheeky snuggle. Bless her, she was exhausted.

The nurse came to see us on the Friday at home and advised that the PEG would need to be advanced (into the stomach) and rotated after 4 weeks and then weekly from then on. She explained that although we must wait 4 weeks for advance and rotate we must still move it on the surface daily and obviously keep the site clean. This was (still is) a bit of an issue for me seeing as I can’t look directly at it!! Every time I have to clean it, I have to take a deep breath. I know I will get used to it, I just can’t get my head around the fact that its just a hole..


The 4 week marker came and the nurse came out to show us (mostly Dan) how to advance and rotate the PEG. This involved opening the white clip you can see in the picture above and pushing the tube 2-3 cm into the stomach, rotating it all the way round and pulling it back against the stomach wall and fastening the clip back down. The reason you have to do this is because the stomach wall would naturally grow over the anchor holding the PEG in, and eventually block the tube. This is to be done on a weekly basis. Edith is absolutely fascinated by it and we have had a few hairy moments were she has managed to tug it quite hard. Apparently it’s quite difficult to pull out, but it does happen. If it does happen, obviously it would just be a hole in the stomach!! The hole can close in as little as 20 minutes so we have to make our way to A&E straight away. If this happens, I hope i’m not alone!!!

Edith is doing brilliantly since the PEG and we are all slowly getting used to this new way of life. Most of Edith’s friends are fed the same way and it’s a click we are proud to be part of 🙂

Las Isla Bonita…

(The Beautiful Island)

As I crept into Edith’s room at the ungodly hour of 2:30am I really began to wonder what the hell we were doing. Here we were 3 (and a half) days post-op about to get on a flight to a foreign country, we were only 2 hours from the UK but I knew it was going to feel alien none the less. Since the operation lifting Edith was very awkward and I knew the next day or so wasn’t going to be easy.

We arrived at the airport with ALL of our luggage; 3 suitcases, 1 medical trunk, 1 huge buggy, 3 hand luggage plus a feeding pump. We made our way to the check in desk where we checked in our cases and then were advised to take our trunk to the special baggage desk. We had arranged with the airline in advance to be able to take Edith’s buggy as far as the gate so that we didn’t have to carry her at all. After this we made our way to security. I was worried about this bit as I was having to carry 2 days worth of feeds and all of Edith’s medicines in our hand luggage, I knew legally this couldn’t be refused and thankfully it was a lot smoother than I had imagined. It took about 30 minutes to get all of the liquid checked but I was glad they were being thorough with the state of things at the moment. By the time we had done this we had to go to the gate and board straight away. We had requested special assistance at the airport so we had a separate bus to take us to the aircraft steps which was brilliant. When we reached the aircraft my friend, cabin crew with Thomas Cook and a fellow Springboard mum, Hannah was waiting for us. She helped us on board and when we arrived at our seats the specialist harness we had ordered to be on the flight was in the seat waiting for Edith. We made ourselves comfortable and prepared for take off.

During the flight we were very well looked after. Once the seat belt sign had gone off we led Edith down across the middle seat so that she was comfortable and able to sleep if she wanted too. Hannah, who also has a child with a additional needs, had told the rest of the crew all about Edith and everyone made us feel really special. We were given complimentary drinks and snacks and Edith even got a shout out from the pilot mid-flight. At the end of the flight she was given a special certificate signed by the pilot and all the crew, a Thomas Cook teddy bear and model aeroplane, it was lovely. The crew had tried to communicate to staff on the ground that Edith needed her adapted buggy to be available as soon as we got off the flight and not be taken to the carousel, unfortunately this didn’t happen. As we disembarked the flight and carried Edith into the terminal building we were met with a row of wheelchairs, none of which were suitable for Edith. We tried to explain to the staff but there was a bit of a language barrier. There was no way that we were able to carry Edith all the way to the baggage reclaim! The only way around our predicament was for Dan to sit in the wheelchair with Edith on his lap!! We got a few funny looks but we didn’t care.

We eventually made it to our beautiful villa at around lunchtime. We couldn’t officially get into the villa until a bit later so we dumped our suitcases and went for a wander. We were familiar with the resort as we had been to the same place a couple of years back. Still in our travel clothes, we headed for anywhere with air-con and at the risk of sounding like a Brit abroad we ended up in Burger King of all places!! Fast forward a couple of hours later, we were in and earlier than anticipated which was a bonus. The villa was beautiful and mostly all on one level which was perfect for wheeling Edith around in her buggy

We chose June as we thought it would be cooler, but it just so happened that Majorca were in the midst of a heatwave and it stayed between 34-38 degrees all week. Unfortunately this weather was too hot for Edith and combined with her recovery and the fact she wasn’t really allowed to go in the water, it wasn’t a great recipe for relaxing. I found myself feeling constantly on edge and worrying about the PEG site becoming infected because Edith was so sweaty all the time. She was probably coping better than me but it’s hard to tell as she can’t tell us how she is feeling. She was so quiet and exhausted for the first few days and not like Edith at all. A few days into the holiday the reality kicked in and we began to realise that this would probably be our last holiday abroad with Edith. The last time we had gone to Majorca, Edith was much younger and not to mention much lighter and as the week went on it became more and more apparent how much I rely on her equipment to help me move her around and also to keep her entertained and safe. This holiday was also the first time Edith had slept in a standard single bed, I had pre-ordered two bed guards so she couldn’t roll out but the thought of it still made me nervous.

All in all we had a pleasant holiday. The company of the other family we went with was fantastic and as they were family they fully understood Edith and her needs, better still they understood how anxious I was. We had a few smiles and giggles out of Edith which made the experience worth while and that’s what this journey is all about, experiences. Things like this are one of the reasons I started the blog, to share or experiences and hope that it will help other families, like ours in making decisions.

As Edith grows and changes so will what we are capable of as a family, this is the reality of having a child with additional needs; the want and the need for them to experience all these wonderful things is always there, it just isn’t always possible.

A few snaps from our holiday…

If you would like more details on the villa that we stayed at please visit:

I cannot praise the couple who own this enough! They were so accommodating.



Thank you for the music…

Being born with physical difficulties means that there is very little Edith is able to enjoy. She has a short attention span and will only tolerate a small amount of T.V in one sitting and is very limited to what she can play with independently. Unlike most children Edith is not able to run around in the park, go on the swings; climbing frame; slide, explore new areas, jump in puddles, ride a trike or approach and interact with children of her own age. As her mum this is heartbreaking to watch at times but as time has gone by I have learnt to see everything she can do and this makes our world so much brighter.

One of Edith’s absolute favourite things is music, not nursery rhymes, no no no, music you can dance too. Her favourite thing to watch on TV is music videos – favourites include Justin Timberlake, Clean Bandit, Ed Sheeran, Bruno Mars and many more. We recently acquired a walker for Edith, this bit of kit was a fair few quid but it was worth every single penny…IMG_2110

Primarily the walker is used/meant for walking (obviously) and the first time Edith used one the results were breathtaking. We had never really thought about what might happen if Edith had the opportunity to try and take steps instead of being in a stationary standing position. I learnt that there was an opportunity to try this marvellous piece of kit out and naturally I grabbed it with both hands…

This was the moment I knew that Edith just had to have one of these.

After a couple of weeks of trying out the walker I decided to put Edith in whilst we were listening to some music, I wanted to hold her hands and show her what it meant to dance. I loved dancing when I was a child and when I was pregnant I dreamed of taking my little one to dance lessons and having them make up routines and put on shows with their cousins, as I did. By this time Edith had developed a love for “Can’t stop the feeling” by JT so this was the song of choice. As the song began, a truly wonderful thing happened that at first sight reduced me to tears. Unfortunately I was unprepared to capture the first instance on video but this is one of the subsequent recordings. When you see the video you will see Edith bouncing up and down like a loon; I see that too but I also see a child that has no strength in her arms or legs, use them in a way I hadn’t seen before. I see her moving to a beat; not in time to it but because of it, for Edith’s brain to make the connection that music is for moving and dancing too was truly remarkable. It gave me hope and an overwhelming feeling of total happiness.

I make a point of doing this with her as many times a week as possible. She can only tolerate it for short periods as it uses every fibre of her being to move in this way in an upright position. We take for granted how much effort it actually takes for a child to just hold their head up let alone dance. It’s not right that any child should be robbed of this simple yet pleasurable ability and we are so lucky to be in an age where things like this, for children like Edith, are possible.

Another thing that Edith loves to do is smile and laugh. I can be having the worst day but I look at her and she smiles or laughs and literally all of the crap disappears. For all the things that Edith can’t do, I will be forever grateful that she can do these simple things. The dictionary describes a smile as ‘a pleased, kind, or amused facial expression’ which is pretty key with Edith as facial expressions are a major part of her way of communicating. When she smiles and laughs it means that the part of her brain that tells her body to do this is functioning, so it’s so much more than what we can see, it’s hope.

We have so many videos of Edith laughing, too many to post but I have made a short video with a small glimpse at some of her giggles!!

I hope you enjoyed those as much as I do.

I can’t describe the infectious joy and laughter this little girl brings to so many lives. After every thing she has been through she still manages to keep smiling and laughing. She is my inspiration to get up, pick up and keep smiling 🙂

Tomorrow is D-day and she faces her life changing operation, although I really do believe it will be a change for the better.



Come fly with me…

So next month we are jetting off to the warm shores of Alcudia in Majorca. To say we need a holiday is a massive under statement and the excitement is now beginning to set in! We booked this holiday last August so it has been a long time coming as our last holiday was January 2016. We are going with my cousin, Laura her husband, Matt and their two young boys, Rupert and Archie who adore Edith.

After Edith’s last hospital admission we were ready to cancel or sell the holiday to another member of the family as the prospect of Edith falling ill in a foreign country seemed beyond comprehensive. Instead, after much deliberation and advice, we have decided to bite the bullet and make our last holiday abroad for a while, a good one.

The amount of organisation involved in taking Edith abroad is immense, it was before all her hospital admissions, now even more so. The first thing on my list of ‘things to do’ was finding a company that would insure Edith to travel. I feel I must just drop in here that Edith has had the date through for her PEG operation – 5 days before we fly (cue jaw drop) but according to her surgeon and several other health care professionals this is perfectly safe, although she won’t be able to go swimming 😦 This obviously needed to be declared along with her other various medical conditions and the fact that she doesn’t have a formal diagnosis. After an hour on the phone to a very helpful broker named Connor, he gave me the best quote from a selection of insurers…..£526 (cue second jaw drop) but for the safety and reassurance of a £10,000,000 medical cover this was worth every penny. This is the only quote I have so far but intend on getting a comparison just in case the nice guy wasn’t as nice as he seemed!!

Next was to speak with our community nurse about Edith’s milk supply whilst we were abroad. She informed me that Edith’s milk is classed as medical supplies (to be checked in at no extra cost) and that the company that supply our milk can either deliver the milk abroad or supply us, free of charge, with a travel trunk. We have opted for the trunk and it arrives tomorrow. This will be filled with various bits, all essential to Edith’s medical needs.

Next up was to call our airline and inform them of our needs at the airport. I contacted them via their ‘special assistance’ number and talked through our needs. I explained that Edith is completely immobile and we would need to take her adapted buggy right up to the aircraft steps and it would also need to be available for us as soon as we get off of the plane. Edith is far too heavy to carry for long periods of time. Next we discussed the need for a special harness to be used in her seat. We already own one but the airline have said that it’s not approved by them and therefore they will have to supply us with one. Due to the nature of the harness we need to sit on the back row of a section of the plane as the harness will hook around the back of the seat in order to support Edith properly. I also needed to declare her need for a feeding pump on board as this contains a lithium battery. All I have to do now is call them to declare the size of her travel trunk when it arrives. I am extremely excited that one of the Springboard mummies whom I am friends with is an air hostess and is going to be on our flight. Hannah, who has a gorgeous little boy that attends Springboard with Edith, has assured me that she has lined up a few special surprises for Edith and is going to make our journey as smooth as possible. What better than to have a person who understands your needs more than most, attending to them!

After all this organising I will definitely need this holiday. We went to Majorca back in 2015 and loved it so much. This time we have our own villa with a private pool. I cannot wait to see Edith’s little face as we explore this beautiful island again as she was so much younger last time. Since being on this milk diet she is so much more lively and alert, I think she will notice things a lot more. Due to the villa only supplying travel cots we think that Edith will have to sleep in a proper bed! We have bought a couple of travel bed guards so she can’t roll out! We have been assured by the couple that rent the villa out, that the private medical care is very good in Majorca and that they have used it several times. Lets just hope it doesn’t come to that. Edith seems much stronger since being discharged. She has had a cold since and coped really well. She is on an antibiotic cover which hopefully means this will stop any viruses turning into nasty infections. When she became unwell before she would stop eating and drinking as it was too much effort for her, where as now we can continue to fill her with all she needs and she can get the rest she needs. I have every confidence this will be a fantastic holiday, I just hope i’m right 😉

Life goes on…

Sorry, it’s been a while since my last post. Edith was discharged from hospital on 18th April after 9 days. Life since our discharge has been somewhat different and to be completely honest, a massive struggle.

When you are mum to a new born and you are first discharged from hospital there are a lot of changes to get used too, this is something you expect and spend months preparing for, I was not prepared for the changes that lay ahead for us. I was not at all prepared for the emotional reality of it either. We arrived at the hospital with a child that ate 3 meals a day (one of them including, without fail, a MAN SIZE bowl of porridge) and left with a child that couldn’t eat anything orally at all. We spent time in hospital learning how to feed Edith a nutritional milk through her NG tube, this was by no means a difficult task but was quite daunting.

Mastering the gravity feeds…


The nature of the NG tube means that every time you want to put something in, you have to draw something out. By checking the PH level of the content drawn out you can ascertain that the tube is still sitting in the stomach and has not moved out into the lungs, if you didn’t do this then there is a chance you could be filling the lungs up with fluid and not the stomach (OH SHIT!!!). We slowly increased the amount of milk that Edith was having and she seemed to be tolerating it well. We were using the ‘gravity’ method of feeding which meant that after doing the necessary checks we would fill a large 60ml syringe (minus the plunger) up with the milk and let it slowly drain in to Edith’s stomach. The whole process took about 25 minutes, which was a bearable amount of time to be holding a syringe in the air for. We felt confident in our ability to feed her and left the hospital feeling positive. The first few days went well apart from a minor evening feed hiccup, in which we put Edith to bed too quickly after her final feed and she vomited it all over her bed!! On the Friday after discharge Edith was visited by the community nurse (a nurse that looks after tube fed children following discharge). The tape holding the tube had become loose and she offered to change it for me. On lifting of the tape we could see that Edith had a very bad rash under it, suspected from not drying her face enough before re-sticking after her bath the night previous. We decided to remove the tube and swap it to the other nostril so to let the rash calm down and give it a chance to heal. The nurse explained that she encourages parents to learn to put their children’s NG tubes back down in the event they are pulled out by accident, this makes life much easier and avoids any out of hours or weekend trips to A&E. I took a deep breath as I looked at Edith’s little face knowing what I was about to do to her, I felt awful. It felt fairly strange and took all my will power not to stop when Edith became distressed (this is quite normal as it aggravates the gag reflex), I pushed the tube in to the right length and breathed a huge sigh of relief. I then had to test the tube to check it was in the stomach; I couldn’t get the syringe to pull back. We tried and tried but it appeared the tube had not gone into the stomach, it wasn’t in the lung or Edith would still be really coughing and spluttering. We couldn’t work out where it had gone so the nurse made the decision to remove it and place another one herself – Poor Edith 😦

The days following were the worst! The NG tubes are sized according to age (as far as I can gather) and Edith was noted as wearing a size 8, however, all the feeds following the change of tube were taking an hour to go through. I couldn’t understand this, we had just found our feet and then all of a sudden we were on our backsides! At 4 feeds a day this was taking up half of my day just feeding Edith and due to how I was feeding her this meant staying in exactly the same spot for an hour every time. This meant no time for play or trips out and if we did make it out it meant wherever we were if I had to feed Edith we would be hanging around for an hour at least. It also meant an hour of her 3 hour sessions at Springboard was taken up just for a feed 😦 As the days went by I became more and more frustrated, as did Edith. The milk was now draining in so slowly that it was taking ages for her to feel any satisfaction, therefore she would become really angry every time she was fed. I wasn’t surprised, this was a massive change for her as it was and now another change had pushed her over the edge. I thought we had this and now it was a complete disaster. One morning I just actually stood in the shower and cried, so much had changed. My thoughts turned to my happy little girl who loved her food, I thought tube feeding would make life easier and so far it just seemed so much worse. I longed for the life we knew before, every time I saw a food she liked, her bowls and cups in the cupboard, my heart would break for her. I felt incredibly low at this point and like I was drowning. I didn’t understand what had gone so wrong.

I called Edith’s community nurse on the Monday to see if there was anything I was doing wrong, she assured me that this was quite a normal amount of time for the milk to go through. I explained mine and Edith’s frustrations and she suggested a solution, a pump. We had been shown a pump in the hospital but as the feeds were going so well and so quick, we didn’t think it was necessary. The pumps are generally for children who need their feeds to be slower due to reflux but in this instance Edith’s feed would be delivered quicker than by the gravity method. The pump was ordered and arrived on Wednesday afternoon. Since getting the pump life has changed again but for the better. It’s such a wonderful piece of kit that needs minimal set up and delivers exactly the right amount of milk. Once you have started the feed you can go on and do whatever it is you need to do, it even has a little portable back pack that it sits in so you can use it whilst you are walking around the supermarket, the zoo, anywhere!!

Edith and I having a quick selfie; she was on her pump in the kitchen whilst I cooked the dinner!


We are now settling in to a proper routine and feeling much happier. It will take a while to get used to not seeing Edith enjoy her massive bowl of porridge in the morning, but I keep telling myself it must be even weirder for her and hopefully this won’t be forever. Although Edith will need a PEG (permanent tube directly into her tummy) it doesn’t mean that she will never have any food orally again, she just needs time for her swallow to get stronger and we don’t know how long that will take to happen but I have every hope it will one day. I can’t wait to get the tube and tape off  her so I can see all of her beautiful face again.

We are so incredibly lucky to have loving family and friends around to support us, without them I would be lost.

Turning on a penny continued…

So after my last post things progressed very quickly in the wrong direction. As Monday began instead of starting to breathe slower, Edith began to breath much faster and looked beyond exhausted. That morning the doctors came to us on their ward rounds and it just so happened that the doctor on that day was Edith’s regular paediatrician. They examined Edith and they were very concerned. Edith was working extremely hard to breathe even with the assistance of the opti-flow, which was up to its maximum output. Her temperature was soaring and this was also adding to her breathing so quickly. They told us that as Edith was working so hard just to breathe they were worried, because of her condition, that she would become exhausted. They quickly decided that the PICU (paediatric intensive care) doctors needed to look her over and a decision would then be made whether Edith needed to be transferred from HDU (high dependnacy unit) to intensive care. Initially though they wanted to give Edith a chance to respond to the antibiotics and for her temperature to settle. The doctor explained to us that Edith may need a flow that involved a lot more pressure than the units in HDU were capable of. As the conversation continued it soon turned in a direction that every parent dreads. The doctor continued to say that if the high flow didn’t work then the next step would be to intubate Edith and have a machine breathe for her. This shocked us beyond belief that Edith was this poorly, until this point no-one had really indicated the seriousness of the situation. The doctor asked if we had ever discussed with anyone what our wishes would be if this had to happen. We didn’t really understand what she was asking, either that or our heads wouldn’t let us believe it!! If what happened? Surely she couldn’t mean that? No one had ever said anything like this to us before and we were floored by these questions. After a short while of talking with the doctor and trying to get our heads around the situation, she left. I immediately fell apart. The critical care nurse noticed my sobs and returned. We told her that it was a lot to take on board and we were totally shocked that Edith had got to this stage so quickly. I couldn’t breathe. She re-assured us that we still had options but we have to be realistic, we couldn’t quite believe what we were hearing and writing it down actually makes me feel sick.

Thankfully, our little super trooper was having absolutely none of it!! As the day progressed, Edith began to make very small improvements. When the PICU doctor arrived later that day he said that Edith could avoid intensive care for the time being, but if her breathing got worse again then we would need to re-assess. This was sweet music to our ears, although Edith had a long road to recovery ahead, it was nevertheless a road out the door, home, with us.

Monday night was long, Edith’s  temperature continued to be out of control and at its highest was 39.8. She was very restless because of it and this was making her still breathe fast. The room we were in was fairly small and hot and I was convinced this wasn’t helping, still, we were glad we had a room. Tuesday morning came and Edith began to cool down, slowly but surely the antibiotics began to take hold and this was reflected in Edith’s breathing and temperature. By mid morning Edith was maintaining good oxygen levels, temperature and breathing but there was a question mark over Edith’s heart rate, it was slower than the doctors would have liked and they decided an ECG was necessary to take a look at what was going on. This took us from an avoiding intensive care high, to another low over Edith’s ability to get over this illness. Thankfully this was done fairly quickly and there were no issues.

It was decided that Edith would benefit from some physio on her chest, we had some experience of this from a previous admission but Edith hadn’t benefitted much last time and it wasn’t continued to much extent. The physio explained that she would carry out what they call chest percussion (a kind of cupped hand hard pat around the chest area) to move the mucus sitting in Edith’s lungs, then they would suction it out with a small thin tube. She felt Edith would benefit and although it wouldn’t be pleasant it was important. The amount (if you are eating don’t read on) of mucus she got off of Edith’s chest was immense, it was thick  and yellow which meant it was nasty. She also removed a massive brown plug which had been clogging up Edith’s poor lung. I couldn’t believe my eyes! Poor Edith was so distressed during this but the benefit of it far outweighed anything else. This happened each day and the results were speaking for themselves in Edith’s oxygen levels and nasty sounding cough.

Up until this point Edith had been nil by mouth and receiving nescessary fluids through IV but it was clear that she was beginning to get a bit of an appetite back. At this point our thoughts turned to the right lung which had shown the first signs that Edith was aspirating food into her lungs. It was felt by the doctors that Edith would benefit from moving from oral foods to an NG tube for feeding. We agreed and the tube was placed. It took a while but I think Edith is now used to her feeds. It must be very strange for her to go from having just having food orally one day to having no food and just milk the next! But as she is a superstar she has adjusted amazingly so far. We have been told that Edith will come home with the NG tube and it will continue that way until Edith reaches the top of the waiting list for a PEG. We were visited by the speech and language therapist who felt Edith should avoid any solids as well with the NG feeds until she is better and this will be reviewed before we come home. We had a visit from the surgeon yesterday and she has pushed Edith up her list as a more urgent case and said that we can hopefully expect Edith to be called for her PEG op in the early summer.

Edith has become stronger and cheekier by the day and today has been the best day yet. She is doing really well whilst having her opti-flow weaned slowly and doctors are very pleased with her progress.

Edith with a get well picture from cousin Olive ❤️


This is what I mean when I say she can turn on a penny, up to down but equally down to up! The doctors say that Edith’s blood tests showed that she had two common cold viruses that would test any 3 year old but for Edith they were much more serious. This has made us take a major step back when considering Edith’s future and we have a lot to think about. We are definitely here for the duration of the Easter weekend and Edith is embracing her inner bunny…


We are hoping we can come home early next week and although life will be quite different in lots of ways, it will be lovely to bring our little pigeon back to the nest. Edith may need several additions to her health care plan, including oxygen for bedtime and suction but this will all be reviewed and confirmed before we go.

All in all a pretty shit week!!!

Here’s hoping my next post is a little more sunshine.

Thanks for reading x

Turning on a penny…

Edith’s ability to fight a common virus can turn on a penny. So far this year we have managed to avoid any bugs but yesterday after a bit of a miserable Saturday, Edith went downhill very quickly.

We went from miserable toddler with a bit of sniffle on Saturday to Sunday evening breathing erratically and a trip to the on call doctor at Clevedon Cottage Hospital. The Dr did all the usual checks including Edith’s levels of oxygen in her blood, unfortunately the level wasn’t satisfactory and by this point Edith also had a bit of a temperature. He told us he couldn’t let us go home and that we would have to make a trip to children’s A&E. He called ahead to make sure they knew we were coming and they insisted on collecting Edith by ambulance from Clevedon.

The ambulance crew arrived around 15 minutes later and upon seeing Edith they decided we needed some blue lights and sirens on the way. Upon arrival at A&E we were in a bay and with a Dr within 20 minutes. The Dr very quickly decided that Edith would need Opti-Flow (humidified oxygen) to help steady her breathing and oxygen levels. We were taken away from the busy A&E ward to the resuss bays where there was connectivity for an Opti-Flow.

So after various levels of oxygen, bloods, antibiotics, x-ray and a cannula, here we are on the high dependency ward. We have been up all night and Edith is especially exhausted…


We have been told that the x-ray showed that Edith’s lower lobe in her left lung has collapsed which explains how unwell she is but they are still testing for why. Our nurse has taken a throat swab and has sent it to the lab to be tested for viruses and infections. This collapse may also be down to the aspiration that Edith has been suffering with. Thankfully we have so far avoided the dreaded NG tube and they are giving her fluids through a drip.

I reckon Edith saw my post about the Easter egg donations and decided she didn’t want to miss out 😉

All in all we are feeling sorry for ourselves, not to mention it’s a thousand degrees in our room and the window is nailed shut! But thank small mercys we have our own room so we can actually relax when the doctors and nurses aren’t in here. It looks like we are in for a few days at least! Edith is catching up on some much needed sleep, so I’d thought I’d post a little update on the rollercoaster ride 😊 I will try and update as we go providing she is stable.



What Springboard means to us…

Springboard is a charity based in North Somerset. It supports children with additional needs and their families from birth to 5 years old.

I knew when I started writing this blog that I wanted to write about Springboard, I just wasn’t sure how to put into words how truly magnificent they are.

I first found out about Springboard through a friend of my Aunty. At the time, Edith was very young and I pushed the thought of her needing specialist care or groups to the back of my mind. Fast forward a few months and it started to become apparent that I did’t feel comfortable taking Edith to ‘normal’ baby groups. I think this was mostly because I wasn’t emotionally prepared to answer all the questions that come with a child that has additional needs. I had no idea why Edith didn’t respond and behave like other children and the thought of crying in front of a group of strangers was a little too daunting.

In December 2014 we moved from Bristol to Pill to be closer to family. After we had settled in our new home, I can’t remember how, but I found out that Springboard hold a monthly gathering called Springboard for Families. I thought this was a good opportunity for me to go and speak with someone about what Springboard could offer. I walked into a room of a few strangers and was immediately met by smiles. I was offered a cup of tea and started to talk to one of the Family Support Workers, Becky. She was so lovely and it transpired that she used to work with another Aunty of mine so this was an excellent talking point. She told me of a stay and play session that Springboard hold on a Thursday at their Clevedon Centre; Stay and play, now this was something I recognised and the term seemed so normal. I decided there and then it was something that I wanted Edith and I to try.

At the time I worked on a Wednesday and a Thursday but after a bit of swapping around, a few months later I was able to attend my first stay and play with Edith. It was really nerve racking but I figured it would be much like the family group I had attended, it wasn’t….it was much better.

Stay and play lasted 2 hours. The last 15 minutes of the session was a chance to have a cup of tea and a chat with the other parents whilst the staff gave the children a snack. This was the first time I had ever spoken to other parents who had children with additional needs, it was finally a language I could understand. This was my favourite part of stay and play and I looked forward to it every week. Week by week I began to talk and interact more with the other parents. I found my niche within a small group of parents whose children had similar abilities to Edith and it was here that I finally began to feel less and less isolated.

As the weeks went by I discovered that Springboard offered sessions similar to that of a mainstream nursery. The sessions are morning or afternoon and the days offered are grouped by ability. I found that a Friday morning would be most suitable for Edith and learned that there would be an opportunity for Edith to start these in March (2016). At the time I was working a Monday and a Tuesday and I felt enormously guilty about more time away from Edith. This would be 3 hours on a Friday morning for me, just me. Somehow this didn’t seem fair or right. I met with the playroom leader, Becca, before her first session. Becca was lovely and so reassuring. I had previously filled out some registration forms covering a range of questions and we went through these in detail, focusing on Edith’s needs, likes and dislikes etc.

March came and so did Edith’s first session…alone.

Edith was assigned a key worker; someone I could liase with about Edith’s progress. Tracy was lovely and we gelled instantly. After a brief chat it was time to leave. I have to be honest and say that I have no idea what I did that morning but I don’t think I strayed far from Clevedon. When I collected Edith later that morning I could tell that she had enjoyed her time there and I looked forward to the following week.

After a few weeks we faced some unexpected news (to be detailed in another post), this was coupled with some other contributing factors and I made the very difficult decision to give up my job and become a full time carer for Edith. I loved my job but the change in our situation meant that Edith needed my undivided attention. I turned to Springboard in the hope of getting Edith in for another session after I had finished my job. As much as I loved her, I knew I would need some more time of my own. Edith began Tuesday afternoons in May (2016).

Edith now attends 3 sessions a week. I cannot tell you how much progress she has made since starting Springboard. They have bought out of her things I never imagined possible. At Springboard Edith has the opportunity to interact with the other children and make friends. They have hello and goodbye songs, a wonderful sensory area, a chance to get messy with paints and a trampoline for bouncing! Edith knows when she is going to Springboard and recognises our routine. As soon as we get into the car park she begins to get excited. She loves and has a good relationship with all of the staff.

Springboard were my lifeline. They offer an opportunity to parents like no other and through them I have made friends for life. Edith’s sessions give me the opportunity for a much needed break and time to be me, knowing that she is in the best and most experienced hands. The work they do is so important to so many families. They can offer advice about all manner of issues that come hand in hand with a child with additional needs, anything from the 75 page disability living allowance form to simply being a friendly ear when things just get too much.

Springboard would love to offer more but unfortunately due to lack of funding, they can’t. If anyone reading my post today would like to learn more about Springboard or make a donation, regular or one-off, please visit Springboard Opportunity Group

Thank you.





Nil by Mouth…

After a series of visits to hospital for chest infections throughout 2016, it came to the doctors attention that Edith had consistent changes on the middle lobe of her right lung. Edith had 4 x-rays in total last year, 3 when she was unwell and 1 when she was well, these all showed the same shadow in the same place. It was thought, initially that this was part of the infection but it soon became apparent that there was something a bit more complicated happening.

During this period (over the year) our community speech and language therapist (SALT) suggested that there may be an issue with Edith’s swallow. She asked if Edith had ever shown any signs of difficulty when eating and drinking i.e. coughing, gagging, spluttering, which she never has and also asked if she had ever suffered with re-flux, which she also hadn’t. She suggested a referral to SALT at the BCH for a Videofluoroscopy (a type of moving x-ray that allows the doctors to see what happens after food and drink is swallowed) to see if Edith was experiencing what they call, aspiration. If she was this would mean that when she swallows, tiny particles of food or drink are going into her lungs – yes this is as dangerous as it sounds!

This referral was made and we received the appointment date very quickly. I asked my wonderful cousin, Carrie to keep us company on the day for a bit of moral support and even though she had a very newborn baby, she wilfully agreed. I wasn’t sure what was going to be found and I wasn’t taking the chance of ending up crying alone in a hospital corridor. Edith was an absolute superstar during the procedure, it wasn’t anything horrific; all she had to do was eat like she normally would. I took along a variety of foods including her favourite yogurt. As I sat and fed her the doctors watched as the food was swallowed. I looked at her innocent little face displaying the joy at being fed a pudding before lunch and wondered what this brave little pigeon would have to face next. My worst fears were confirmed as the SALT told me that Edith had an moderate to severely unsafe swallow. I was told an appointment would be made to speak with our paediatrician to discuss what this meant and what happens next.

Edith enjoying her food…

Upon speaking to the paediatrician I learnt that the aspiration had probably played a major part in all of her hospital admissions. She advised that there was no immediate need to intervene but that Edith would need to be put on the waiting list for a PEG (a Percutaneous Endoscopic Gastrostomy Tube). Edith would be able to continue to eat orally untiime but if things were to turn in the other direction she would need to have a NG (Nasal Gastric Tube) to sustain feeding until surgery for the PEG.

At this current moment in time Edith is still being orally fed, which seems to be going ok. The waiting list for the PEG is roughly 8 months long; we should expect the surgery in the autumn. Edith is due to meet with the paediatric surgeon on 14th June to discuss the procedure.

Edith enjoying her favourite food…porridge!!

Initially this was a huge shock. The doctors are always saying “as long as her progress keeps going forward and she doesn’t lose any skills, we are hopeful”. Was this a loss of skill? Had Edith taken a step backwards? Does this mean her condition is getting worse? Thankfully, no. I have been assured by two separate SALT’s and our paediatrician that this is not a step backwards, merely a blip in the ocean. Even after the PEG is fitted directly into her stomach, Edith will still be allowed some ‘safe foods’ orally (custard, yogurt) and hopefully will one day, in the not to distant future, be able to have the PEG removed completely.

When we are babies our swallow is protected to a certain extent and because Edith is so slow developing it’s suspected that her anatomy is just catching up. So as the swallow would be protected in a typically developing child and then become less protected as they grow; this is the same with Edith except everything has happened much slower therefore she is much older before there was any issue. I think that makes sense, sorry if it doesn’t. Edith absolutely loves her food and we hope this is only temporary, but for now it is what is best and safest for our little bear.

Edith enjoying a mini milk…