Home sweet home: a year on!

So a year today mummy and daddy walked out of Barnsley SCBU without so much as a shiny eye or a backward glance, they drove home feeling like they had the crown jewels in the back seats and then snook us in through the back gate to begin enjoying the family life they dreamed of during those 99 heart-wrenching rollercoaster days in hospital, many of them wondering if we ever actually would make it home at all! Mummy still can’t believe we did it. It really is a miracle.

Our house is completely different and as much as mummy tried to keep it free of baby clutter, we have seen a large amount of toys creep in and we are slowly taking over….because as we get bigger, so do the toys! However the living room is generally adult only and mummy likes to keep it that way. For now!

So a year on, what challenges have we overcome? What mountains do we still have to climb? Who are we? Mummy really wanted to blog so that we can look back and see what we have achieved. It is quite amazing really.

From bringing us home….

 

to now……

 

Austin.

When I left hospital I still had a number of major health challenges. Here are some of them…

  • ROP Disease (NOW DISCHARGED)
  • Chronic Lung Disease (NOW DISCHARGED but still an ongoing issue due to lung scar tissue)
  • Apnoea (NO LONGER MONITORED)
  • Heart PDA / PH (DISCHARGED)
  • Hernia (OPERATION SUCCESSFUL AND NOW DISCHARGED)
  • Neutropenic / Immuno-Compromised (NOW WITHIN NORMAL RANGE)

I am no longer under a paediatrician or specialist. I am just like every other baby, aside from having chronic lung disease and slightly under developed lung capactiy which shows when colds are around or the air quality is compromised (heavy traffic / smoking / bonfires, pollen count etc) and i begin to wheeze and struggle.

I have done such an amazing job of growing big and strong. I make everybody really proud. Mummy and Daddy say I am a tank. They know I can handle things much better than Rory when it comes to health and sometimes that means they forget that I am still a little fragile with my breathing and often need my inhaler when the air is rubbish.

Mummy and Daddy say that I am the ‘do-er’ of the pair of us. I like to bish bash bosh everything. I am definitely a proper boy who finds muck and gets into mischief. Mummy says that sometimes I am like a bulldozer ploughing through life with no fear. I do get sad much easier than Rory though, he seems to be super brave.

Mummy asked people who know us really well what they had noticed about our personalities, they said that I was a Go-getter, I like to copy what grown ups do and I am very impatient. I don’t like to wait my turn. I can be very loving and enjoy cuddles but I am also very inquisitive and don’t stay still for long. I am a fast learner and don’t miss much, Nannie says I am nosey. I love to eat, in fact I am never full, Mummy has to trick me with breadsticks when the yogurt or dinner runs out because I cry as though I am starving. I always make a lot of mess though compared to Rory and I am very stubborn if I don;t want something, I lock my lips very tightly and can whack the spoon and send the food across the room quite easily.

I am really sociable and will go to anyone for a cuddle or to play and I am generally a happy chappy, we both are. It isn’t very often we cry.

Developmentally we are doing really well. All of the professionals expected us to be delayed, even when taking the age correction into consideration, don’t get me wrong, i’m not ‘forward’ but we are certainly not behind. Mummy has been tracking us on ages and stages and we are within the acceptable range for our age. Mummy is helping us to reach the ones that we haven’t quite managed yet.

My fine motor skills are 100% on point, I am very good with my hands. My gross motor skills are also very good, I love to run and jump with my daddy holding my hands, but I haven’t yet mastered walking. Mummy says that we will manage this in the holidays when Daddy is home to help but because there are two of us she cannot give us both enough attention to get better at this by holding our hands whilst we walk and supporting us to stand on our own. I am very good at problem solving too, although I really need to master mark-making. When Mummy makes scribbles with a crayon on paper, I need to copy and do it too, but instead I just eat the crayons and I don’t know why because they don’t taste very nice. My personal-social skills are good, but in order to tick all of the boxes I need to play with dolls and stuffed animals and hug them. I don’t like dolls and teddy bears very much. We have a doll called Frank that lives in the tipi in our play room and when he plays with us, I just bash him over the head with the nearest toy. I don’t really like cuddly toys either, only puppets when Mummy makes them kiss and tickle me. I’m not very good at lifting my feet up to help Mummy either when we are getting dressed, but I have only had shoes for a few days so maybe I will get better at that. My communication skills are okay but not as good as other areas. Mummy thinks that this is because I spend all of my time with Rory and he can’t make noise and so maybe I copy him and don’t make as much noise as other children my age. I am still working within the acceptable range, but my score is lower in this area. I need to be able to follow 3 commands, say 3 words and identify objects by their name. We are working on this every day though and i’m sure with my determined personality, I will get there soon enough.

Mummy last assessed us on the 25th June and I had 10 targets to tick 100% of boxes on the 12 month ages and stages chart. Since then (24 days) I  have achieved 3 out of the 10 targets and I have part-achieved 4 others but Mummy needs to see me do it consistently before she will make it green.

I am very good at sleeping, I go to bed at 6:15pm and I wake between 5 & 6am. I occasionally wake but usually on hot nights or when I have wind. It isn’t very often.

I drink a pint of milk a day and I like to eat fruit, yoghurt, breadsticks, mini cheddars, porridge, cereal, toast with a range of toppings. I have started to become a little picky. In the beginning I would eat anything, but I have just found what  like best and so I am stubborn and refused everything else until Mummy gives in and feeds me the stuff I like.

I like to go on the swings at the park and I love to have staring competitions with Beau jangles. I don’t really like it when I am close to farm animals because they moo and baa really loud and it makes me jump.

I love bath time and splash water EVERYWHERE.

I am generally a smiley, happy, cheeky little boy who loves life and although I like to steal toys from Rory and ocassionally bash him, I love him very much and when he is sad, I always go to see if he is ok and we always like to play close, we haven’t quite managed to master ‘personal space’ yet.

Rory

When I left hospital I still had a number of major health challenges. Here are some of them…

  • ROP Disease (NOW DISCHARGED)
  • Chronic Lung Disease (NOW DISCHARGED but still an ongoing issue due to lung scar tissue)
  • Apnoea (MONITORED BUT NO RECENT ISSUES)
  • Heart PDA / PH (12 MONTHLY MONITORING)
  • Neutropenic / Immuno-Compromised (NOW WITHIN NORMAL RANGE)

Since being home, a number of serious health issues have been discovered;

  • Subglottic Stenosis (narrowed airway)
  • Laryngomalacia (floppy airway)
  • Collapsed Lung (DISCHARGED)
  • One missing kidney (12 monthly monitoring)
  • Recurrent respiratory infections (ONGOING)

As a result of this, I spent a short time in the intensive care unit where the doctors kept me asleep on a ventilator machine so that they could keep me safe whilst they monitored and tried to fix my windpipe. I had a number of operations and in the end I gained a tracheostomy. This means that my life changed completely. I could no longer make sound. I was no longer allowed to roll around in the bath. I couldn’t go swimming or share a bed with my brother. I had to be super careful and Mummy and Daddys life changed dramatically too because they became carers and had to give me 24 hour care around the clock, which saw Mummy and Daddy each going to bed for 4 hours each so that they could stay awake with me through the night. Mummys life changed too because it meant that she couldn’t go back to work and so she gave up her work, her career, everything she had worked towards…..so that she could give me and Austin the best chance in life, despite all of the challenges we had ahead. I will have to learn Makaton as a form of communication although hopefully at some point I can try a speaking valve.

The Doctors aim to have my tracheostomy tube out by the time I am 7, but there are lots of variables to make this even possible and my stenosis is a grade 3, which is the worst kind. I have lots of hospital stays and operations ahead.

I am seen often by the respiratory team, the ENT team and the Urology team at Sheffield Childrens Hospital. I am also under the Paediatric team and the community nursing team at barnsley. I have to have tests to monitor my kidney function, and further scans to monitor my heart, lungs, kidney and windpipe. We have great faith in the ENT and Respiratory team at Sheffield. Mummy & Daddy have a wonderful working relationship with all of the staff there, especially the respiratory team who Mummy can just call whenever there is a problem and they ALWAYS sort it super quick for us, no matter how busy they are. Mummy trusts them completely. We are lucky to have them.

I make everyone super proud because regardless of everything that I face on a daily basis, I am the smiliest little man with the most positive attitude. Everyone says that I am super clever because I am always watching and thinking things through, Austin does things and thinks after whereas I plan ahead. I always work things out, regardless of the obstacle, everyone says that I am a ‘try-er’ and i don’t give up.

I am super brave and quite resilient. I take everything that is thrown at me and although it is very rare that I lose my cool, when I do, I can be very fierce. People say that I am angelic, although Mummy says that I am actually the one to watch because I am quite clever and know how to get up to mischief without getting caught. I am a thinker and a problem solver. Austin can be really self-assure of himself and often arrogant and smug, whereas I need reassurance alot. I am very bashful and cute.

I am not really sociable and unlike Austin I won’t go to just anyone for a cuddle or to play. I tend to make a judgement as soon as I meet someone and my behaviour reflects how I feel towards them. Some people, those I know well, will see the real me, the playful, bashful, cheeky chappy who loves to blow kisses and stick my tongue out, tip my head back and beam out a smile but those who I don’t like or who are completely new will see a quiet, shy, stern little boy who can be quite stubborn. It isn’t very often I cry but when I want attention, because I don’t have a voice, I will sometimes bang but also I cry because I can force out a squeak and mum knows my breathing changes when I cry and so she comes running. I learnt that very quickly so I sometimes do a fake cry to capture the adults attention.

Developmentally I am doing really well.  All of the professionals expected us to be delayed, even when taking the age correction into consideration, especially as I spent such a long time in hospital and my efforts just to breathe and get by are so large that its amazing I have the energy to do much else. Don’t get me wrong, i’m not ‘forward’ but we are certainly not behind. Mummy has been tracking us on ages and stages and we are within the acceptable range for our age. Mummy is helping us to reach the ones that we haven’t quite managed yet.

My fine motor skills are 100% on point, I am very good with my hands. My gross motor skills however, aren’t great. Whilst they are within the acceptable range, they need work.This is probably because of how much time I spent asleep in hospital, or just lay in a hospital bed hooked up to machines. I need to build up strength in my legs and balance. Mummy says that we will manage this in the holidays when Daddy is home to help. I am very good at problem solving too, although I really need to master mark-making. I have done it once but Mummy needs to see it a few times before she can accept it. My  personal-social skills are good, but in order to tick all of the boxes I need to play with dolls and stuffed animals and hug them, just like Austin. I don’t really like cuddly toys either, only puppets when Mummy makes them kiss and tickle us. I’m not very good at lifting my feet up to help Mummy either when we are getting dressed, but I have only had shoes for a few days so maybe I will get better at that. I like mummy to smell my stinky feet so maybe I am half way there. My communication skills are okay. Mummy has adapted to ages and stages assessment because I can’t physically say 3 words, but I can sign them and so this is my target and we are now working on makaton so that I can communicate. I can however make sound using my mouth, clicking with my tongue or smacking my lips, amazing really that I learned myself this skill. I can follow a rhythm and copy an adult which is a great skill for communication.

Mummy last assessed us on the 25th June and I had 10 targets to tick 100% of boxes on the 12 month ages and stages chart. Since then (24 days) I  have achieved 1 out of the 10 targets and I have part-achieved 5 others but Mummy needs to see me do it consistently before she will make it green.

I am very good at sleeping, I go to bed at 6:15pm and I wake between 5 & 6am. I occasionally wake but usually on hot nights or when I have wind. It isn’t very often. Mummy and Daddy still have to monitor me through the night and ocassionally suction me to ensure that my tube doesn’t get blocked and that I am breathing ok and because I like to sleep with my bottom in the air, Mummy and Daddy have to roll me over to do my trachy cares and that means that I stir and sometimes wake.

I drink a pint of milk a day and I like to eat fruit, yoghurt, breadsticks, mini cheddars, porridge, cereal, toast with a range of toppings. I will try most things and recently ate cottage pie, chicken tikka Masala, Naan Bread, chicken dinner and pizza.

I like to go on the swings at the park and I love to stroke Beau jangles, I like to show her who is boss. I think it is funny when grown ups do silly things and I like to be cheeky and flirt and play games with certain grown ups that I like.

I love bath time and splash with my feet although I have started to dislike my trachy cares, most likely because I like to be off exploring now that I am mobile.

I am an adorable, cute and bashful little boy who loves life and can handle anything that is thrown my way. I look up to my Big Brother and I love him very much. I really like Beau Jangles too. I often cuddle her and stroke her fur. Sometimes I look at Austin with an expression that can only mean ‘what a muppet / oh my days Austin, what are you doing’ and i’m sure that as we get older i’ll be digging him out of trouble. He makes me laugh when I watch him do silly things from afar. We like to play close, which often ends in tears because we haven’t quite managed to master personal space yet and Austin bashs me, I take it and take it and then I get fed up and bash him back and then he cries. I always look up as if to tell Mummy i’m not sorry and i’m secretly smug that I got my own back. I don’t need pity, i’m a strong little boy and I can stand up for myself. Mummy says i’m the one to watch!

So here is where we are at, a year on from coming home. Mummy and Daddy are ridiculously proud of us and stunned at our adventures every single day. We are absolutely adored by so many special  people and we are lucky to have such a wonderful life…..and lots more amazing things to look forward to.

 

 

 

 

 

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