My Toddlers Changing Bag – Updated

Last year I wrote a post all about what was inside my little boys changing bag, but given that hes now almost 3 and on the spectrum, I thought I’d update you all with the contents we consider imperative when leaving the house.

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Matthew isn’t toilet trained, nor does he have any understanding whatsoever of the concept, therefore we are still very much reliant on nappies at the minute until such times as he is ready to come off them. I don’t imagine this will be any time soon however.

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Matthew has Chronic Lung Disease and Asthma, therefore we can not and will not leave the house without ensuring we have all of his breathing equipment with us. We have been lucky enough so far (touch wood) that he’s yet to have an asthma attack outside the house, but it’s better to be safe than sorry.

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Because of Matthews condition, he is often overwhelmed by the world around him and so we use Ear Defenders. These block out all overbearingly loud noises when we are out shopping or in a restaurant etc, and are a life saver for many children on the spectrum.

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Like most children, they can become a bit frustrated and bored when out in public places, and Matthew is no exception to the rule. Therefore we always make sure we have some kind of snack with us that suits Matthews dietary needs, as well as water because my boy has a thirst like no other.

Again, like most other children Matthew often needs some sort of stimulation when we’re out the house. However, unlike most other children, he doesn’t really play with toys in a conventional manner and so we tend to stick to sensory stimulating toys that bring him a lot of joy… Enter the Bubble Gun!!!

As well as watching bubbles fly around, he enjoys toys that make sounds. This Maraca in particular is very stimulating for him.

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But his absolute favourite thing in the whole world is a ball… and this one in particular. It is filled with glitter, it lights up, it’s heavy in his hands… to Matthew, this is the absolute perfect toy, and for that reason it comes everywhere with us.

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Much like most other children with sensory issues, Matthew “mouths” most items. This can range from his own fingers to the tv remote. So we went on a bit of a mission trying to find sensory items that would give him the feedback he so desires from biting and chewing, but to no avail. Until we found this in boots. It’s from Nuby and it’s great. Matthew has chewed this until he’s blue in the face and it’s still on one piece. Would highly recommend this to mums/ dads looking for something to help their little ones.

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Finally his Kindle. This has been a life saver to us in so many situations. It has prevented tantrums and meltdowns alike and we could not live without it. We NEVER leave the house without it and it is the best money we have ever spent.

So there you have it lovelies. A little insight into the contents of my toddlers changing bag. All of these items are necessary and invaluable to Matthew as well as us. It makes his and our lives that little bit easier when we go out, and we are so grateful to have discovered all of these wonderful items that make our boy so much happier about leaving the house.

D x

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It’s been 2 years…

Happy New Year lovelies!!!

Today is the 2nd Anniversary of the day we brought our boy home from hospital.

He spent his first 138 days within the confines of Wishaw General and believe me when I say that it felt more like years than days.

Today marks his 869th day on this planet and I honestly mean it when I say it feels like only yesterday that we brought him home. All snuggly in his (far too big) Emile et Rose outfit, carefully placed in his (even bigger) car seat.

After fighting so hard to bring him home, it really did take Michael and I a good few days to get over the shock of figuring out what the hell we were supposed to do with this medically fragile little “newborn”!

He has since filled our lives with more joy and love than we ever knew was possible and my heart swells more and more every single day I wake up to his beautiful face.

We had our first appointment of the year yesterday with his new consultant. Despite being discharged from Chronic Lung & Neuro, Matthews doctors are fully aware that he is in no way out of the woods with his health and so his care has simply been passed on to another service… this time it’s the Asthma & Gastroenterology Clinic.

Our care plan going forward for the year will include the following NHS/ Local Council services:

Paediatric Physiotherapy

Paediatric Occupational Therapy

Speech & Language Therapy

Educational Psychology

Community Paediatrics

Paediatric Audiology

Paediatric Ophthalmology

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So as ever, it’ll be a full year for my boy and us.

I am also going to start documenting Matthews behaviours and development in written and video format. It’s amazing how many things I forget about when we are at appointments because of the unending list of concerns we have. But by doing this, it means when it comes to “official diagnosis”, we will have all of the information to hand and on video.

I will sign off on this post with a bit of symmetry (which I love 🤪)… Matthew starting 2017 and Matthew ending 2017! ⬇️⬇️⬇️

P.s. Yes this is the same snowsuit & hat… this is the silver lining of having a small baby… their clothes fit for longer! 💚


Speech & Language Therapy – Frustration

In my last update I told you all how Matthew had responded so well to his song bag that we were set another challenge of getting him to engage without the use of songs/ singing.

It definitely was a challenge but we knew what we had only one thing to work with, Matthews love of playing with balls. Other than his songs, this is the only thing that really grabs his attention, and in all honesty the only toy he has the time of day for.

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So his dad set out to make a game out of Matthew giving dad his ball, dad saying “Ready, one, two three”… all the while Matthew has to maintain eye contact and wait patiently for his dad to spin the ball.

As reported in my last post about this, it was a success, and I’m happy to say we have been able to maintain this with lots of hard-work and concentration from my boy.

So I should be happy shouldn’t I?

But I am so far from it.

All I feel right now is frustration. Total and utter frustration.

It all seems to be moving at such a slow pace, and even though I am fully aware that there are no overnight miracles, I just feel like we are hardly any further than we were away at the beginning of this journey.

 And the worst part is that I feel so selfish for feeling this way.

I’m not stupid.. I know how hard this has been for my son… And I know how hard he works at the tasks and challenges we give him.

I just wish it wasn’t so complicated and so drawn out.

I was out with my family today and we took Matthew and his big cousin to our local Soft-play, a place Matthew generally hasn’t been a fan of in the past, but I thought we’d give it another try.

Fortunately, my boy handled the environment so much better than he had before, opting to play in a corner by himself of course, but unfazed by the noise and hoards of sweating, screaming children around him.

I find that as long as he has a little corner in any room hes in, he can contain his anxiety and generally doesn’t notice anything going on around about him.

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I was so proud. This was such a big deal, and I know these milestones are very worthy of that pride.

But that lovely, warm feeling in my tummy dispersed quickly when I saw (and heard) a little toddler chatting to his mum. He was younger than Matthew and he was asking his mum for “a drink”… and then if he could “get a snack”… and finally the killer blow… he gripped onto her and said “love you mummy”.

It was like taking a bullet to the heart.

And of course this was followed with unwanted irrational thoughts and questions that started whirling around in my head.

“Is he just much more intelligent than Matthew!?”

“Are we doing something to hinder his development!?”

“Will he ever speak!?”

“What if he never speaks!?”

I was so disappointed with myself for thinking it, and for dismissing the amazingly prideful moment my boy had given me.

But, being honest with myself, I am so scared that we won’t ever reach those bigger milestones. That I won’t ever hear him tell me he loves me. It hurts my heart to even type those words.

How do I get over this… What do I do???

 


Toddler Bedroom Decor Inspiration

Hi lovelies,

Today’s post is a little different. I’ve been scouring the internet trying to find some inspiration for my boys bedroom.

We haven’t changed his room since he was born and so it still very much a baby’s nursery.

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Don’t get me wrong, I love it! It’s still my favourite room in the house, but I feel like it doesn’t really reflect Matthews personality and so I want to be able to create a space for him where not only does he feel comfortable, but excited by his surroundings.

So i’ve come up with a few ideas of my own as well as some inspiration via Pinterest (the best website in the friggin world – and the cause of my losing endless hours of my life online), and I thought I’d share them with you.

They are all very varied and therefore I’m finding it hard to pinpoint one in particular that I absolutely LOVE!

In our previous house, the spare bedroom was home to my hubbys ManCave! It was a great room filled with leather sofas, a bar, 50inch tv, entertainment unit and even a dartboard. However, having a baby means less space for mum and dad to use up for themselves and so the ManCave had to go, and Matthew slowly took over every empty nook we had with toys, clothes and furniture.

Now, 2 years into this game called parenthood, we have discovered that we don’t infact need all of the “baby stuff” we once felt were necessary, and that there actually is some space to do what we want with.

My idea is therefore to move Matthew into the spare bedroom, where he will have an abundance more space, and we (meaning the hubby) will have the use of his room for whatever we choose.

So here are my ideas:

A Little Man Cave

All things wood and earthy combined! 

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This would be quite rustic, lots of wood and natural materials. Quite earthy colours and just a general feel of the outdoors. 

Matthew loves being outdoors and exploring and so I thought that this might appeal to his sense of adventure and whimsy. 

I also love how simple and unpolished the look is. Myself and my hubby aren’t the best at executing our creativity and so it’s nice to know that this particular look could be rustic not only intentionally but ironically in our case. 

A wooden or wood-looking vinyl floor, a little chalk paint, some sandpaper, wooden crates and we’re good to go!

Big thumbs up to this look. 

Fit For A Superhero

My boy is already very much the Superhero, but having a bedroom dedicated entirely to a crime fighting squad of caped crusaders is surely every child’s dream?!?

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This room would be filled with colour, therefore I would stick with a simple bright white for the walls and preferably some sort of black laminate or vinyl for the floor. The colour from the wall hangings, furniture and accessories would be more than enough to make the room vibrant and exciting.

Matthew is still young and doesn’t fully appreciate comic books and the like just yet, so in keeping with his age and understanding of it I would alter the theme slightly to Toddler Superheroes… Tiny avengers and such, small in stature but mighty in strength and determination… Much like my boy! 

Simple But Colourful

No theme for this one, just colour… Lots and lots of it!

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With Matthew being ‘Sensory Challenged’ this was one of my first ideas. A haven of colour for him to get lost amongst. No theme in particular, except that of colour… I suppose. 

This would be simple in terms of not having to be strict with that I buy and how I decorate, but I think I would again opt for white walls and perhaps a lighter floor. Laminate or vinyl is always sensible when it comes to kids. Easier to clean up and in Matthews case, a much more satisfying surface to play on than carpet. 

This little rainbow room would entertain and delight any child, regardless of their sensory preferences. I’m just not convinced it would be as exciting as my previous ideas. 

So there it is… 3 very different but equally appealing room ideas. Any input would be greatly appreciated… And feel free to share your own bedroom ideas and images on my twitter feed tagging @Preemie_Mummy so I see them all.


Having a Toddler with Sensory Issues!

Today was Matthews first day at his new Toddler Group.

This is a group for babies and toddlers with special needs. There were only 6 kids there, including Matthew, so already a much more intimate group for him than his previous Toddler Group (where there were 16-20 kids there).

The class is led by a Speech & Language Therapist, an Occupational Therapist and an Early Childhood Development Assistant, so instantly I felt like Matthew was in good hands.

The kids and their parents/ carers were all lovely and were full of kind words and advice, and it was nice to not have that feeling of guilt whenever Matthew acted up because they all understood.

Amongst the 5 other kids were a mixture of disabilities (I hate that word) ranging from Cerebral Palsy, Dysphagia (problems with swallowing food/ drink), Autism to Hypotonia (a muscular disease).

Matthew was born 4 months premature and so has certain developmental delays. However, as well as the delays he also has certain other sensory problems and “disabilities”:

✦He is affected by certain noises.
✦He doesn’t like be be touched or held (unless it’s his choice).
✦He is frightened and overwhelmed by large groups/ crowds.
✦He has a very high pain tolerance (will hit himself in the head and doesn’t react).
✦He’s very frantic when playing and doesn’t play with his toys in a constructive way.
✦He doesn’t speak any words (except dada) and grunts to communicate.
✦He puts everything he can pick up in his mouth.

I often convince myself that these issues aren’t important or that they don’t exist and this isn’t helpful to anyone. Let me just say though, it’s not because I’m in denial about it, it’s just that he’s such a gifted little boy in so many other ways that it’s easy to forget he has so many other struggles.

Anyway, the class went well. He had a mid-level meltdown for a good 20 minutes because the class all cheered after their first song (this is a big trigger for Matthew as my family will all attest to). He enjoyed the actual songs, but was anticipating a “Yayyy” after every song (which they deliberately didn’t do because it upset him) and had a great big outburst after each one.

He really enjoyed the second part of the class which was more of an independent play session, but again he didn’t play with the toys in a constructive manner, despite the therapists and development assistant encouraging him.

They assured me that he handled the first class very well and that they will work on helping him overcome and improve on some of the issues he has and hopefully he will be participating and at least enjoying the interactive part of the class in the next few weeks.

It’s the most hopeful I’ve felt in such a long time.


How we deal with baby/ infant Eczema!

As I’ve previously shared, my son was born prematurely and with this comes several potential problems. Due to being subjected to several rounds of antibiotics as a baby, as well as having mine and his dads allergy-ridden genes, he has become a sufferer a few different allergies, including Eczema.

When it first appeared, it was very minimal. Just dry flakes of skin on the tops of his arms. It seemed to be kept at bay with daily moisturising. However about 8 months ago it started to spread and became more severe.

At this time I began to google information and images of it in the hope that I would find some miracle cure, which I didn’t. In fact some of the images I found were so severe that they made me think my boy had gotten off easy.

However with the rapid growth of the condition, came another issue.

Scratching!

This was so much worse than just looking at dry, flaky patches of skin ruining my baby boys otherwise perfect complexion. He was scratching so hard that it was becoming inflamed and at certain points the skin would break and bleed.

Now, the thing with Matthew in particular is that he doesn’t really experience pain in the same way we do. He has sensory issues and because of this he will scratch until his skin is completely raw.

My husband and I had to take action.

We spoke with my Health Visitor who referred Matthew to a Dermatologist.  This would be a few weeks waiting, so in the meantime our GP prescribed Matthew an anti-fungal & steroid ointment as well as cream for moisturising.

For the first few days this combination seemed to help keep the itching at bay, but it soon returned and with vengeance. Our appointment with the Dermatologist was brought forward because of this and Matthew was prescribed a stronger Steroid cream.

This worked wonders for a good few weeks, until once again it just stopped being effective. His condition worsened considerably, to the extent that it was all over his body, from head to toes.

I felt completely desperate. My beautiful boy was in pain all the time, scratching his lovely face and body for some sort of relief, which was only making the patches of skin even more inflamed and painful for him.

It was then, as if by fate, that I came across a post on Facebook of a mum who had experienced the same problem with her little girl. She had discovered a brand called Child’s Farm, who specialise in dermatologically tested skincare products for children. They make Bubble Bath’s, Body Oils, Moisturisers and all manner of products related to children’s skincare. So I bought some of their products and tried them out. Within an hour of use, I noticed a difference.

Matthews skin was less red and angry. He was scratching less and just seemed much more comfortable. We were elated!

Of course, it didn’t solve all the problems, but it did give us a better understanding of the type of skin regiment that seems to work for Matthew. I know it won’t work for every child, but I thought it would at least be helpful sharing our process in case you are a mum or dad at your wits end and you haven’t yet tried this.

So here goes:

  • Every morning we apply one of three steroid creams/ ointments to the patches of skin effected. (We have found this to be the most effective way to ensure the best results. Using the same one over and over again eventually becomes less effective at lessening his symptoms). We use Eumovate Ointment, Daktacort Hydrocortisone and Betamethasone Valerate. (All of these were prescribed by our GP)
  • We follow this with either Child’s Farm Coconut Body Oil, Child’s Farm Moisturiser or Oilatum.  (Child’s Farm products were bought online at their website, but are available in Boots – Oilatum was prescribed by our GP)
  • We bathe on alternate nights so as to prevent Matthews skin getting too dry. On bath nights we use Child’s Farm Baby Bubble Bath in warm water (37 degrees Celsius). Matthew is washed with Child’s Farm Baby Wash, which we use to wash his hair as well as his body.
  • After his bath we pat dry his skin and apply Eumovate Ointment to the effected patches of skin, once again followed by Child’s Farm Coconut Body Oil, Child’s Farm Moisturiser or Oilatum.
  • We also use Epaderm Ointment on a regular basis throughout the day to Matthews elbows, backs of legs and any other folds and creases in his skin. This is a very gentle ointment not unlike Vaseline in its properties. It’s definitely not a necessary part of his skincare routine, but we have used it since he was born and so it’s more of a habit, but certainly doesn’t hurt. (This was prescribed by our GP)

We apply his prescribed creams/ ointments twice a day, in the morning and at night before bed. His Moisturisers are always applied after these treatments, however I often apply them sporadically throughout the day if I feel his skin is needing it.

The most important thing we’ve learned about this process is that we need to keep his skin as moisturised as possible. Missing just one opportunity to do this can result in a breakout and it takes far longer to rectify the issue than just to stick with this skincare regiment.

It has taken 8 months to find what works for us and it has been the most soul destroying time of our lives, helplessly watching our little boy suffer. Hopefully anybody going through the same thing with their wee one finds this useful and if you would like anymore information please get in touch with me. 33852315732_b7a1a777d8_o33968583176_ca6977498e_o33624308340_b55bf55f4e_o33166396944_e65127f39f_o


Still Trying To Figure This Out!

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So I had a blog a few years ago which I really enjoyed writing.

It was a mixture of beauty and lifestyle posts, and I posted most days. This time around I’m not quite so sure of the content I want to focus on.

I have many interests and therefore many things I could quite happily write about. However recently I’ve realised there is only one thing in particular that I feel passionately about.

My son.

Now I’m not in any way, shape or form declaring myself an expert in the field of paediatrics (I am very much NOT) but I am an expert on my son, and with him comes an abundance of information related to Premature Births, Child Illnesses, Disability and the more recently the Autism and Sensory Spectrum.

When my son was born 16 weeks prematurely I documented his journey throughout the NICU, coming home and everything that followed that, and after hearing it from friends and family so often, I have decided to put all of my words on paper and turn his story into a book.

Now please don’t be kidded, I do not think for a minute that I am an author, or that my careless and often blatantly incorrect grammar is worthy of anybody ever laying eyes on it. But I do believe that it is important to be able to physically hold this story in my hands, as opposed to scrolling through it on a social media site.

So on that basis I am going to incorporate Matthews Preemie Story into this, my daily musings. I hope those of you perhaps reading it, find it helpful or in some way valuable. It is personal of course, and in no way indicative of the journey anyone else may be going through, but i’m sure it will at least be a comfort to know that you are not alone. That someone else has faced the same difficult decisions you have. That someone else has suffered the same heartache that you have.

So from tomorrow I will post an excerpt of Matthews Preemie Story for you all to read. This in addition to, most likely, the many uninteresting and exceedingly uneventful moments of my life.

Enjoy! 😀22017911706_510a97d093_o