No Control and losing her soul!

It has been a difficult month for many reasons. In the most part because Mummy fights with all she has every single day to give us the best chance she can, and finds herself met with brick wall after brick wall and this month it has just been a little bit too much to handle.

This time of year has always been difficult for us since we became a fabulous five. Our first two winters were spent inside between September and March and so by the time November comes and everyone is beginning to look a lot like Christmas, we are generally run down from the realities of managing winter, tired, fed up of being stuck in for the past 3 months, miserable about being stuck in for another 3 months and unable to join in any of the christmas festivities. No playgroup Christmas parties, no queues for the santa’s grotto, no Christmas markets in the cold damp weather, and so the grown ups have struggled to get into the Christmas spirit and every thing is a bit of a tokenistic effort because, well, its Christmas and that’s what you are supposed to do.

This year we will be celebrating the wins, but in honesty they are much smaller than we hoped because, well, yes, it is the first winter we are able to go out and about and do all of the things we have not been able to do in the past, but because we are out and about we are catching everything and so are spending just as much time stuck inside poorly. Which also means that we have missed lots of nursery, because we don’t have nurse cover every day and more often than not our poorly days have fell on the days we have had a nurse and so our attendance, Rory especially, has been poor.

So here is our November in a snapshot. Don’t forget the first weekend of November is blogged in Nostalgic November!

Austin’s love of books has grown.

Rory had a kidney appointment at The Sheffield Children’s hospital, it was a challenging afternoon, despite a gallon of water and a fruit shoot at Costa, it still took him almost two hours to provide a urine sample. He didn’t mind the blood test or the blood pressure or anything else, but he was slightly dramatic about the plaster on his thumb. Good news is that his one remaining kidney has grown, so it is still in the game for now!

We had a nice little local walk together in the fresh air..

Austin made it back to nursery, I find it just as hard as the first time, every time I put one in uniform and not the other. It just feels so unfair that Rory always seems to miss out. So we have adventures instead and Rory got a balance bike treat that Austin was kept in the dark about.

We went to visit the new Barnsley Neonatal Unit. You can read my Mums the Word article in Barnsley Today Magazine all about it, here!

We had a comical bedtime with Austin. We have a stash of pants and two potties ready for when the time is right and Austin found them in the wardrobe whilst Daddy was running the bath. He caused a bit of drama because he wanted to put them on. We put them on and he paraded around in them, with strict instructions NOT TO WEE! He was sat on his bed for ages and managed to keep dry, then went and sat on Rory’s bed and did a huge wee! So Dads in the bath with Rory, and I’m trying to catch an Austin who has wet pants on, running round our bedroom singing ‘cheeky monkeys’ whilst jumping on the bed, and im trying to change Rory’s sheets and well…..I suppose we can laugh about it now. But it is safe to say he isn’t ready just yet!

We had a lovely little walk at Wentworth. Our boys don’t take a lot to please. They are so grateful just to be out and about, they thoroughly enjoyed a little walk up the church path and back. It was enough.

We called to see Grandma and show her our balance bike skills on her path so that she could watch out of the window – made her day!

We wore our poppies with pride…

We had a walk around Owd Martha’s Yard to see their preparations for their big Poppy Event. It looked great, the Beacon is so special. We spent ages looking around.

Austin chose a pound puppy out of the toy box for the first time. Uncle Craig bought them, original ones, of the same puppies that me and him had as children. He is so thoughtful like that!

When Austin started nursery (& Rory too albeit 6 months later) one of his targets was to sit and participate at group time. He was always too interested in everything else and exploring. So we bought them both a special cushion, Austin a Thomas one and Rory a Gaston from Ben & Holly and have been working hard at home too to teach good sitting and listening. Safe to say Austin can now sit for the whole of group time at nursery and even at home will get his cushion and song bag and sit patiently waiting for me to join him. Rory is getting better and better but has 6 months less practice….

We have learned all about selfies, Austin can even say ‘cheese’…

Rory and I had another adventure whilst Austin was at nursery. We had a cheeky mcds, visited the library, fed the ducks and did some shopping. He loved walking around like a grown up boy, it is so much easier with just one. Rory found some custard creams in the shop and carried them all the way around.

We bought a crumb pet. I am a stickler for crumbs, I like things to be clean and clutter free and I have always hoovered the boys (literally) when they have eaten, and then made them stand and do a crumb dance to shake off the crumbs and then put them back in their playroom and returned to hoover and clean the table and the kitchen floor. The Crumb pet hoovers up crumbs…..the boys love him!

15th November was the first day that both boys went to nursery in nearly 5 weeks. It has been a difficult 5 weeks where I have really exhausted every option to try and give my boy the opportunity to an early education to try and help him to rebuild those missed milestones due to his health stealing his first few years. There have been many tears, many meltdowns, many conversations with professionals, ex-colleagues, friends. The nursery staff, in particular the manager has been on hand day and night to discuss options and together we made a plan but luckily, we didn’t need it, because the day came when we finally both made it to nursery, most importantly, Rory made it to nursery.

I have found this so so so hard because we managed to secure funding for Rory’s nursery place, secure funding for Rory’s 1:1 nurse, train up nursery staff, put risk assessments etc in place and still, my boy was spending days, weeks, months at home whilst his brother goes every day and is flying! It was just so unfair, so difficult. Our hands were tied, there wasn’t really anywhere to go, I felt like a rabbit in headlights but with no options. it was a tough time!

We looked into other settings that were less risky, we looked into going down the social care route to hire our own staff, we looked into changing the care agency, we looked into people we know who would be willing to train up and help, we looked into further referrals to other speicalist teams to support their development, we looked into alternative therapies, brain food supplements, buying in private child development coaches or Speech and Language therapists….the list was endless. We did take up some of these options but it is early days and so we will save those for another blog!

The boys had their first children in need day at nursery….

Austin made his first creation for Diwali, which we lit, but also lit for all of our prem baby friends who we have met and lost along the way. With thanks to all 6 of them, we will never take our precious lives for granted. We know how lucky we are!

We celebrated World Prematurity day, Mummy wrote a special blog called #prematurityis you can read it here!

We wore our new Identical Individual Jumpers from An Ordinary Mummy, a percentage of the sale goes to support #motherhoodforchange # BLISS and #TAMBA who are all projects close to our heart!

Austin was caught teaching Thomas to read….

The boys fell poorly again, just 3 days after their return to nursery – typical and a stark reminder of their health! Austin fell asleep in the Tipi!

We had a rubbish 5 days of unsettled nights, suctions, coughing fits, sick….

Grandad came to visit when we were set to return to nursery, we were just at the door putting on our shoes and Rory started coughing. Often when he has a cold or has just cleared a cold, he will get thick secretions, just like we do on our chest, except he is trying to clear phlegm through a small tube line and he coughed and coughed and eventually was sick, like ridiculously sick. Up the wall, the window, the cupboard, all over the floor, the rug, the shoes……Grandad helped but sick isn’t his fortay, I managed to clean the sick up, change both boys and get them strapped in the car before Grandad left. I ran back in after waving him off, properly cleaned up whilst the front door was open and I could see the boys, stripped off in front of the washer, grabbed some clothes from the drying rack and ran up the drive, feet half in my shoes, shirt half unbuttoned and just made it in time for the nursery run. Happy days! The 48 hour rule doesn’t apply to Rory when he has trachy sick as obviously it isn’t a bug, it is as a result of coughing. So off to nursery he went!

They had a great time, and enjoyed chilling after nursery…

Austin continued his obsession with Thomas, even making Mummy kiss him….

We had visits from Uncle Craig and Uncle peter…

Austin has had a word explosion with an easy 30+ words that he has said now. The nursery manager says she can’t believe how much Austin has come on. He has flown, a completely different child to April, she says he ‘amazes her every day’…

Sunday morning chills, Austin reading his mag and Rory doing his favourite thing, jigsaw puzzles. The difficulty of the puzzles that boy can do is unreal.

We had a little walk to Nannies and back, resulting in a meltdown because Austin wanted to stop and talk to the ducks but we didn’t have anything to feed them and he doesn’t like to disappoint.

The boys have started to play together more and more often, interacting with eachother which is great to see, especially for Rory as Communication and Interaction is difficult for him and he is usually in Rory’s world. Having purchased every toy on every list of ‘toys to encourage speech and language development’…..the boys were playing with Mr Potato Heads.

Me & Rory had a secret meadowhall adventure but remembered how much we hated the place so after enjoying our lunch date in the Oasis, we attempted a handful of shops before making for the exit and playing on the adventure playground. It was fun!

Rory eventually returned to nursery, managing 3 days this week. A grand total of 8 afternoons in nursery this month. Better than the 5 in October. We knew it was going to be difficult sending the boys to a nursery full of bugs during their first winter and knew they would be having time off poorly, I could cope with that but having time off because someone somewhere isn’t fulfilling the contract to allow us 5 days nurse care – thats hard to stomach. Someone somewhere is letting my boy down!

The past two nights have been unsettled. We had a rubbish night with suction machine waking the boys up and they were awake and downstairs at 4am! because of this, their nap time was a long one (2 hours) and then the following night (last night) they were unsettled again and tag teamed us. Rory ended up in bed with us from 11:30 because he was unsettled and we didn’t want him to wake Austin, we finally got him back to sleep and Austin woke up in hysterics. He only settled by choosing a Thomas book (at 3:10 am we were reading thomas books) and eventually he went downstairs because he had decided it was morning. So….we are going into December slightly tired, and yes, I could have used the past 2 days whilst the boys were at nursery to nap, but Thursday is washing day, and I helped the Mates of Milton prepare for the light switch on by putting up decorations, and today I cleaned the house from top to bottom and changed the bedding. Clean sheets….i’ll look forward to resting my head once I have blogged all about November and shelved it to make way for a better December!

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