feel good felt creations

 

badges

Try to relax they said.

Try to sleep. They said.

One thing which has been great for my mental health while all this is happening has been my love of craft. I love to make fudge; bunting for the boys birthdays. Oh Yeah, And badges.

Lots of them. It wasn’t until I gifted one to a dear friend that she suggested that I make them to help me to relax. And get some much needed money too. Sooo here they are, In all their glory.

And they are now selling at ‘inthedoghouse’ café along sandgate high street as we speak.

Some things are just meant to be. Right?

Wheelchair services

So a i little bird told me that Atticus would get a bigger buggy if we asked at wheelchair services. We went through the process and within a week we had an appointment.

Oh my goodness. Talk about bury myself in a hole. The hypermobility and the asd and the lack of physical development and his ‘w’ sitting.

Half way through the appointments she put him in a wheelchair sitting in the corner of the room.

Why? I asked.

For size was her reply.

I explained I didn’t want a wheelchair. She said it was that or nothing so I had to accept it.

So here it is it in all its glory. Pimped yo with skins which I had designed to make it look a little less like a wheelchair if that’s at all possible.

It’s been out twice. First comment asked me if Atticus was an invalid. Second asked me what was wrong with Atticus. I wanted to cry. What’s wrong is your attitude I should have said. Why do you have to ask?

He’s Just a Noisy Breather

2

So we thought we were out of the woods. Four weeks later Atticus seemed to be struggling for breath. He was panting and grunting and his chest was pulling right in under his rib cage.
As a complete novice with this kind of thing I took him to the Doctor. He is just a noisy breather. I took him home and carried on, but deep down I had a knot in my stomach that something wasn’t right. He was genuinely struggling for air and he was panting like a man who had run a marathon. And all he did was sleep. Day and night. He was exhausted and pale, and didn’t feed well at all. And he lost weight quickly.
So battle number one began. I called the surgery, they called us in for an emergency appointment, with a Locum. It was the best thing that ever happened. The Locum had seen this before with another infant. And he used the term LARYNGOMALACIA.
Straight up to A and E we went again. This time to a different one. This time we were taken in immediately and more tests. Chest Xrays to see if he had an infection and to see if that was the cause of why he couldn’t catch his breath.
Within two hours of being there the Consultant had written an urgent letter and faxed it off to the London Hospital which eventually went on to save my Son’s life.
two weeks later Atticus was in hospital having an emergency scope to diagnosis the condition. A little numbed nose, and a long camera scope down it. An low and behold. Laryngomalacia and an emergency appointment with our now very kind and wonderful ENT consultant.
This is the photo I took just before the procedure. He was so so tiny, and so brave. I wasn’t. I tried to hold him while they scoped but I shook uncontrollably and cried and panicked. The kind doctors and nurses then held him for me. His ENT consultant still remembers that day like it was yesterday. And so do I, but for very different reasons x
a few weeks later we had our second appointment to see her. She explained and confirmed the diagnosis and it was decided that we would see how he progressed and if his airways would get stronger as he got older.
It was now time to play the waiting game.
Coping with Laryngomalacia

So six months went by and his breathing was continuing to be strained and he wasn’t gaining the weight he should have. He dropped down the growth centiles and then something pivotal happened.
It was January 2016 and I had a call from Grandma. She told me not to panic but to meet her as Atticus needed to go to hospital. We went together, shared the journey and talked. Atticus had gone blue and she had had to resuscitate him.
At hospital he was given a steroid in his throat and observed, but by the time the Doctors had seen him he was back to his normal chirpy (but breathless) self.
We went home and I contacted ENT at the London Hospital and we had an emergency appointment booked within days. Due to the recent events, we were told that it was important that surgery took place, and that we were to wait until the cough and cold season was over for them to book him in and admit him.
Atticus was prone to coughs and colds and picked up upper respiratory tract infections like we would a bar of chocolate.
Cold season came and went, and we were booked in for surgery on the 30th June 2016.

And the list continued to grow…

IMG_3431

So, the path seemed to be getting longer, my mindset had changed from that of optimism that Atticus would be fixed, and each appointment instead of expecting to get discharged, we had an uncanny luck to then be referred to yet more amazing Drs and consultants.

At the beginning of March 2017 we had a VF ( a video fluoroscopy in fact), Atticus went to our old haunt of the local hospital ( it was quite refreshing to have such a short journey for a change), and he sat in what looked like a car seat, stuffed his face with lots of barium laden food of different consistencies, and I watched in awe at the xray video which was being taken.

That came back ok. A little bit of pocketing but not too much to worry about, not at this point in time anyway.

At the end of March we were back in London to see the respiratory team. Straight away he was diagnosed with reactive airways disease ( asthma) and chronic eczema. Oh joy, more medicines to add to the repeat prescription list – this time in the form of inhalers and creams. Both of which Atticus hate with a passion.

We were then referred to the Allergy department to see why he had the asthma and the eczema. Another London trip to look forward to.

I must say that at this point we were travelling to London by train. As Atticus got older it was harder to restrain him in a seat for a whole journey  and as it was the cough and cold season, I was worried he would pick up more bugs and colds. He was so prone to it. So I made the decision to start driving up. It crippled me financially, but I had no choice.

congestion charge x2

car parking for £3.50 an hour

and the fuel.

But I always treated myself to a white chocolate hot chocolate at AMT each time, it was worth it just for that ( especially when I had cream added to the top of it)

We had multiple meetings with multiple consultants and the list of diagnosis continued to grow.

We now had our fears confirmed by the local team. Atticus had developmental delays and was being referred to Speech and Language once more. this time for his speech.

Merry Bloody Christmas Everyone!

So the journey continued. We awaited our appointment to see the ENT once more, for our six month check. His energy levels were amazing, but he continued to wheeze and get breathless easily. He was admitted countless times for Upper Respiratory Tract Infections, and anti biotics never touched the sides. Each time he was admitted Nanny came down and picked up the pieces and we went back up to our local Hospital for treatment.

Even though he had had his surgery things were still not right.

Xmas Day 2016. A call to the NHS 111 service started our day at about 7am. Atticus was a little breathless as he woke but began deteriorating rapidly. I have never called an Ambulance before, so I got the NHS 111 service to make that decision for me. Within 20 mins a blue light ambulance and two angels in disguise came and tried to make the little one stable, while we waited for Nanny to appear ( she was due down anyway to celebrate Xmas, but this time left a little earlier)

Strangely enough, the hospital was very quiet! We were visited in majors by Father Xmas while Atticus was on a nebuliser. It was a stressful and emotional time. Seeing Santa wheeled into Majors by two elves set me off. Those NHS heroes are absolutely that. Heroes and Angels. We were admitted. Then discharged three days later.

My two older boys put Xmas on hold. They waited until we were home before they opened all their presents ( but they did open some)

 

To have the boys back together under one roof was fantastic.

So Christmas happened a few days late. I held onto the strength that I was given through the prayers and amazingly positive messages which were sent to me. I felt blessed.

And within two weeks we had the first available appointment to see ENT in London. The day after we were admitted again.

And it was this cycle of cat and mouse with his health and appointments, which led us to meet the respiratory team a couple of months later. At this point we had the input from the local Speech and Language team for his swallowing also.

D Day

So there we have it, so far we have had multiple appointments to find a preliminary diagnosis and then we played the waiting game.

IMG_0635
30th June 2016 could not come soon enough. But then I also never wanted it to come. I never wanted my son to be struggling like he was and I didn’t want him to have to have surgery but fate sealed our hand. We had no choice. It was surgery as there was no alternative and his frail little body wasn’t managing with the stress of the breathlessness.
Atticus didn’t meet his milestones. He couldn’t sit up on his own, he couldn’t roll over. He literally just laid down and slept. He wouldn’t tolerate tummy time at all. It made him scream. (That was the chronic reflux for you. ) But he smiled. Smiled lots. The kind of smile which warms you up and lets you know that in his own little way he gets it. He knows what you are trying to do, and that you are doing it because you have no choice.

We travelled up really early on that warm summers morning. It made no difference to me what time we caught the train. I hadn’t slept for weeks. I was living on my nerves and I was determined I would be strong for Atticus and also for his two older brothers, who were so tuned in to how I felt I almost had to downplay how serious this surgery was for their little brother, highlighting instead, that once his surgery was done and he was back home, he would be giving them a run for their money and they had better watch out.
It was the only way I could cope to make light of the situation at home, but also to make it very clear that there were no other options and their little brother was very sick.
The Doctors and nurses were beyond amazing. Atticus was the first to go down to theatre and I held him tight while they sedated him. I kept it together, I didn’t cry. I didn’t want Atticus seeing me upset. I gave him a kiss and I left him with his ENT consultant and all the theatre staff and I let them work their magic.
And boy, they didn’t disappoint.

8

This Warrior, this amazing and strong little boy, transformed.

 

 


This is the before and after pictures of his larynx. His ENT Consultant said it was a very significant case of Laryngomalacia and diagnosed the chronic reflux and tracheomalacia as well. She said there may be a chance that he would need further exploratory procedures but we thank God we haven’t had to go down that path. Instead we have had other paths to travel.
The first few days after surgery were touch and go; his SATS dipped very low when he slept so we ended up staying in hospital for five days. On the last evening they said they would do a sleep study – they were not sure if these dips in his oxygen levels actually were a common occurrence and we just weren’t aware of them when he slept, or whether it was due to swelling in his larynx after the MLB took place.

 

We were lucky to have visits from close family including Nanny and his brothers. We also were given permission to leave the hospital for an afternoon as there was a fundraiser for the hospital at the Archbishops Palace.
We came home on his first birthday. The most amazing and incredible gift someone could give a mother and a child. A chance to come home.

 


In the months ahead Atticus became a transformed little boy. The energy he had was beyond my wildest dreams and I felt like my little fighter had been mended.
We returned to see the ENT consultant, and she was still worried about his breathing and his wheeze, so he was referred to the Respiratory Team. It was at this point I felt quite numb, I had no idea his journey wasn’t going to end there. And it took months to realise that we were going to head down multiple paths and routes and what felt like darker and darker places for us all

He’s Just A Noisy Breather

2

So we thought we were out of the woods. Four weeks later Atticus seemed to be struggling for breath. He was panting and grunting and his chest was pulling right in under his rib cage.
As a complete novice with this kind of thing I took him to the Doctor. He is just a noisy breather. I took him home and carried on, but deep down I had a knot in my stomach that something wasn’t right. He was genuinely struggling for air and he was panting like a man who had run a marathon. And all he did was sleep. Day and night. He was exhausted and pale, and didn’t feed well at all. And he lost weight quickly.
So battle number one began. I called the surgery, they called us in for an emergency appointment, with a Locum. It was the best thing that ever happened. The Locum had seen this before with another infant. And he used the term LARYNGOMALACIA.
Straight up to A and E we went again. This time to a different one. This time we were taken in immediately and more tests. Chest Xrays to see if he had an infection and to see if that was the cause of why he couldn’t catch his breath.
Within two hours of being there the Consultant had written an urgent letter and faxed it off to the London Hospital which eventually went on to save my Son’s life.
two weeks later Atticus was in hospital having an emergency scope to diagnosis the condition. A little numbed nose, and a long camera scope down it. An low and behold. Laryngomalacia and an emergency appointment with our now very kind and wonderful ENT consultant.

This is the photo I took just before the procedure. He was so so tiny, and so brave. I wasn’t. I tried to hold him while they scoped but I shook uncontrollably and cried and panicked. The kind doctors and nurses then held him for me. His ENT consultant still remembers that day like it was yesterday. And so do I, but for very different reasons x

a few weeks later we had our second appointment to see her. She explained and confirmed the diagnosis and it was decided that we would see how he progressed and if his airways would get stronger as he got older.
It was now time to play the waiting game.

Coping with Laryngomalacia

coping with lm

So six months went by and his breathing was continuing to be strained and he wasn’t gaining the weight he should have. He dropped down the growth centiles and then something pivotal happened.
It was January 2016 and I had a call from Grandma. She told me not to panic but to meet her as Atticus needed to go to hospital. We went together, shared the journey and talked. Atticus had gone blue and she had had to resuscitate him.
At hospital he was given a steroid in his throat and observed, but by the time the Doctors had seen him he was back to his normal chirpy (but breathless) self.
We went home and I contacted ENT at the London Hospital and we had an emergency appointment booked within days. Due to the recent events, we were told that it was important that surgery took place, and that we were to wait until the cough and cold season was over for them to book him in and admit him.
Atticus was prone to coughs and colds and picked up upper respiratory tract infections like we would a bar of chocolate.
Cold season came and went, and we were booked in for surgery on the 30th June 2016.

 

So What has he got to cope with at the moment?

 

11Throughout this site you will see how the young fighter has added to his list of conditions and diagnosis’ whether it be from a developmental point of view or a medical one. And as I write this, a few days after his third birthday, we still await tests and test results and answers to questions which are beyond my realms
Laryngomalacia
Mild Distal Tracheomalacia
Chronic Gastro-oesphagul Reflux Disease
Macrocephaly
eczema
asthma
Global Development Delays
Social and Communications Disorder
suspected Autism
Severe Expressive Communication Delays

When it all began…

atticus 1

This is my Warrior. He is My Hero, My Swan. My Amazing Fighter. He is My Atticus.

Where do I begin? Do I start with the journey he has been on so far? Do I write about the continued assessments and appointments and referrals and waiting lists?

I will start at the beginning.

Atticus was born just past what they call the ‘premmy’ stage at the local Hospital. They were expecting complications with his health when he was born as I had a condition called POLYHYDRAMNIOS during pregnancy. I was told to ensure that If I went into labour, to call 999 immediately. As there was a risk to his life if I went into labour. I was admitted at almost 38 weeks for a planned caesarean. I had steroid injections beforehand to develop his lungs. I had been prepared for him to be whisked into SCBU to have his lungs drained and to be monitored in the first few days of life.

Alas that didn’t happen. Well, the caesarean did. no sooner was his born his was in my arms and feeding as any new born would.

The first night was unsettled. As you would expect. And due to the fact that he was my third child, I was safe in the knowledge I was being discharged the following day. Or so we thought.

3

As we were due to leave, something really frightening happened. I was lifting Atticus up and all of a sudden he arched his back, went stiff and his eyes looked like they were about to pop out of his head. He stayed like this for what seemed like an eternity. I am sure it must have been only 10 seconds. Then he went floppy. And then he screamed. And screamed. And screamed.

We rushed for help. The fear in his eyes was indescribable. And as help was sent for, and I was shouting at the top of my voice for help to come to the ward, the whole process repeated again.

The Doctor was brilliant. She took my baby into resusc and performed all the checks which needed to be done. We were told not to expect to return home that day, they wanted to monitor him for another 24 hours, which was totally fine for me.

So we spent the next 24 hours having tests every hour. They attributed it to low blood sugar although they were stretched to prove to me that was the reason.

So on the Wednesday; two days after he was born, he was finally allowed to go home. That was the end of it in our eyes. A lucky escape. We thought. How wrong were we.

The day after we saw the Community Midwife. Atticus lay on her lap while she spoke to us; reassured us; and then he started jittering. And he didn’t stop. The midwife shared her concerns and called the hospital straight away. We were rushed in and admitted straight away for tests. Straight up to the Children’s Ward.

I will never forget the feeling of helplessness I felt with the Doctors swarming around my tiny little boy, trying to hold him still as he screamed and screamed, trying to put a canular in this perfectly formed little fighter. It destroyed me.

10

We stayed in hospital overnight, in a private room opposite the nurses station. He had all his bloods done; traces tested, heart monitors. I was taken care of too. I was only day three out of major abdominal surgery. And funnily enough, that didn’t matter to me. I couldn’t sleep. I just sat there looking, staring at my little boy, who was enduring something I knew nothing about.

All the tests came back clear. Thank God. We were discharged the following day. Told he was just a ‘jittery’ baby. And we fell for it. And that was the beginning.