Planning A Birthday Party (For A Sensory Challenged Child)

So Matthews 2nd birthday is fast approaching and while having a house party again like we had for his 1st sounds like a good plan, we’ve decided to opt for hiring a venue, thus removing the apocalyptic party aftermath that takes days to clean!

We’ve hired a small hall in one of our local leisure centres, which comes equipped with a soft play area as well as a separate room for eating. It’s the perfect size for our family and has been used by my sister in the past for her little ones parties.

The difficulty in organising a party this time around is that we know a lot more about Matthews condition and with him being older, he is a lot more symptomatic. Therefore there are a few things we are adjusting and adding to make this party as much fun for him as it will be for all of the other children in attendance.

  • We will be turning a small part of the eating area into a Quiet Zone. This will be a little tent that has pillows & blankets and an iPad set up to play Peppa Pig. This will be for when Matthew (and any other children) gets too overwhelmed in the play area. 

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  • All of the children in attendance will be encouraged not to scream. This will definitely be tough to enforce, and we want all the kids to enjoy themselves, but this is Matthews party and so it’s only fair that his needs are catered to primarily. 

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  • The ‘Happy Birthday’ song will only be sung if Matthews mood and temperament allows it. One of Matthews biggest triggers is group singing. If he’s tired and too overwhelmed then this upsets him, so we will make a decision on the day if it is safe to do so. 

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There will be a ball pool which Matthew loves, so I’m guessing that he will spend most of his time in there ignoring everybody around about him. In the instance that he is unhappy though, these little adjustments will act as fail safes for us and hopefully ensure that he still enjoys himself.

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The Dummy Debate?!?!

My opinion on this matter has been varied.

Being the oldest of 5, I have watched my mum raising all different types of children.

My sister was a demon child (i’m not offending her by saying this as she is well aware). She misbehaved and cried pretty much from the minute she was born. Just the most difficult baby/ toddler you can imagine. I always thought it was fussy babies who needed dummies, but I don’t remember her ever having one. If she did, I definitely have no recollection of her ever being attached enough that I noticed it.

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My brother on the other hand was an angel. The most pleasant baby you could meet. Always happy, always smiling but he needed one. It was a comfort to him when he was tired, and if I remember rightly my mum never had any issues weaning him off them.

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My niece however, really struggled. She used dummies from an early age right up until she was about 4. It was a comfort thing for her too, along with a cuddle blanket she would carry around with her (much the same as her cousin, and my boy Matthew). Her mum tried weaning her on several occasions and seemed to succeed, until her baby brother was born. This was when my sister discovered that she was stealing her little brothers dummies and hiding them in her room.

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Now… I have read a lot on the issue of dummies, mainly when I was pregnant.

I wanted to do everything right and convinced myself that I was going to do it all by the book and avoid the use of dummies at all costs. How naive I was!

Any control I had over my pregnancy was taken away when my son was born 16 weeks premature. He was very sick, and spent a long time in hospital where his dad and I eventually began to help with his cares.

One day, when I was going through the drawers in the NICU I came across a collection of the smallest dummies I had ever seen. Now these were tiny, but my boy was so small that even they looked too big to use on him.

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I asked the nurses about them and they told me that because Preemie babies are ventilated or need some help breathing, they can’t breast/ bottle feed and so they are fed through Nasogastric tubes. This means that they don’t develop the sucking reflex that a normal term baby does. So the NICU team, when putting together a plan to start breast/ bottle feeding a baby, include the use of a dummy throughout the day so as to encourage the baby to start sucking.

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Matthews consultants told us how invaluable these tiny dummies are and that these little tools are fundamental in helping babies learn how to suck. They told us that all of the nonsensical arguments people have about the use of dummies in children are without evidence, and in actual fact that the use of dummies in babies can reduce the risk of cot death.

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They told us the only issues with them are wear and tear and they therefore have to be cleaned and changed regularly, as well as that if they are used in excess by children who are teething, they can cause a rash on their chin, due to the over stimulated saliva.

These are the educated facts and findings of children’s doctors, and in particular, doctors who specialise in saving the lives of the most vulnerable and sickest of children.

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Matthew is almost 2 and still uses his dummy, but selectively. If he’s tired and wanting to cuddle he needs one along with his cuddle blanket. However, he will go to bed and be able to sleep all night without one. So much so that we have never had to get up through the night to give him his dummy.

My opinion on the matter is simply this… If he wants one, he can have one.

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I don’t care about the dirty looks and judgement from strangers, that means nothing. I think instead of reading through angry and “I know best” mum forums , I’ll just stick to the findings and advice of some of the most intelligent people I know, and  wean him off them at his own pace.


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


Trying Trying Trying… Pt 3

Apologies for this follow up post taking so long. It’s been a crazy few weeks and time has quite literally gotten away from me. We have all been struck down with every sick and flu virus going and even now, I still feel like i’m at deaths door.

Anyway…

Michael and I were just going through the pregnancy motions. Picking up bits and pieces every time we were out shopping, and excitedly imagining  the amazing potential few months ahead of us.

I started showing at the start of August.

The tiniest little bump started to emerge and my clothes began to feel so uncomfortable that I resorted to wearing leggings with every outfit (one of the best parts of being pregnant)!

On the 14th of August I was attending my cousins Hen Party. I felt quite run down, but nothing out of the ordinary. Just tired.

It was later on that night, after going to the bathroom that I felt a bit strange. TMI moment coming here, but I had a funny discharge on my underwear and something just felt wrong.

I put it down to just feeling tired and thought I might have been coming down with the flu. My bones were aching and I just wanted to lie down. So I went home.

I awoke the next day feeling even worse, and I was still having a strange discharge.

It wasn’t until dinner time that night that I noticed something completely out of the ordinary.

I was having a tightening in my stomach, that kept coming and going. So after about 20 minutes I decided to pay attention and time it. They were coming every 10 minutes and were lasting around about 30-40 seconds. No pain as such, just a weird cramping sensation.

After speaking to Michael, I decided to call Midwifery Triage to get their opinion on the matter. The lady I spoke to was lovely. She said it sounded like i might have a urine infection but advised me to head up just for a quick check.

We casually made our way to the hospital, thinking at the very worst, I would be sent home with an antibiotic.

We were shown into an examination room and a midwife, along with a junior doctor came in and asked me to lay on the bed and prepare for an internal examination just to check everything was ok.

This is already an extremely uncomfortable thing to do, not necessarily in terms of pain but with regards to your dignity…

It is quite simply left at the door.

So i reluctantly got myself ready for examination and lay back counting the seconds till it was over… when I was frightened within an inch of my life by the shriek that came from the midwife.

“Stop stop stop”! She instructed the junior doctor.

“Do not go any further… Slowly and carefully remove the speculum”!

She then ever so calmly made her way to the top of the bed where Michael and I were waiting to find out what was going on. She gently pushed past Michael and pressed a red button on the wall behind him and an alarm sounded off in the corridor.

That’s when she bent down next to me and said, “Danielle don’t be alarmed, but we can see your waters and it would appear you are in pre-term labour. The room is about to fill with a number of medical staff, but they are all here to help so just try to stay calm”.

Calm???

Not possible!

The next few minutes, hours and days were a blur. I was medicated to the max with steroids, antibiotics and all other sorts of drugs to try and slow down the labour. I managed a further 4 days holding onto Matthew before he was born, breech and weighing a mere 1 pound 9 ounces.

My angel was laid onto my hip for a full minute before being whisked away from me, for what would turn out to be the most difficult 4 and a half months of our lives…

But that’s a whole other chapter…


Trying Trying Trying… Pt 2

In April of 2015 I had a minor meltdown. 

I was home by myself and felt an overwhelming rush of emotions that resulted in a good 8 hours of self-loathing and depression. 

It was a culmination of years of failed attempts and getting pregnant and crazy hormones. 

My husband came home from work and spent his entire evening trying to console me. It did eventually work, but it was definitely a dark day for me, and was a stark realisation of how I was really feeling on the inside. 

I should also mention that I had been suffering from Gallstones as a result of my weight loss and my attacks were becoming more and more frequent. 

On the 2nd of May 2015 I was blue lighted to Wishaw General Hospital with a sever Gallstones attack. I was admitted to the Surgical Receiving Ward and was being prepped for emergency surgery. 

The nurse Lynn came and took some bloods from me and I had to provide a urine sample, just to make sure that everything was all in order before they started the procedure. I was told it would be an hour before I would get my results back, so I sent my hubby away to get himself some food. 

Minutes after he left, my nurse and the registrar came over and pulled the curtains around my bed. I remember feeling incredibly nervous after seeing the serious look on their faces. 

“Danielle we have the results of your urine sample and it would appear you are pregnant”

Well…  Of all the things I expected to hear, I can honestly say that was not even on the list. It was so surreal and so unexpected. But when I began to think about it, I had been having some pregnancy symptoms, including nausea in the morning and sore boobs, something that I hadn’t experienced any of the other times. 

However, my nurse advised me that the urine sample isn’t always 100% so they would have to wait on my bloods coming back to make sure. She advised that this would show my HCG levels (pregnancy hormone), and we would be looking, based on my last period, for them to be around 500-600 mlU/ml.

So while waiting I called my hubby and told him he had to come back,  I didn’t want to blurt it out over the phone.

When he returned I told him our news, as all of the surgical nursing staff hovered nearby to watch his reaction. It wasn’t the fairy-tale setting by any means, but it was a moment in our lives that I will never forget.

While we sat and chatted excitedly about the potential pregnancy, Lynn came over with the results of my blood test. My HCG levels were 32,000 mlU/ml. Significantly higher than the minimum levels Lynn told me was required to confirm the pregnancy. I still have the paperwork with the results on it in our memory box.

So no surgery… And home to celebrate we went!

The next few months were pretty normal. I had my 12 week scan and saw my little button on the screen for the first time. It was wonderful watching our baby grow throughout each different scan. We found out on our 20 weeks scan that we were having a boy, a feeling I had felt since we found out we were expecting.

We were over the moon. We would soon have a son… In fact it would be sooner than any of us would ever have anticipated.


Trying, Trying, Trying…

My husband and I have been together (off and on) for 16 years. We were High School Sweethearts. He is the best person I have ever known. Kind, considerate and everything else in between.

I knew, despite the many fall-outs, that he was my person. By that I mean, even on the occasions where we had called it quits, I still wanted to tell him everything I was going through, even if that were about another (I say it loosely) “love interest”.

It was then that I realised, there is nobody better than this man. He’s as good as it gets!

We were married in 2011 and immediately began trying to get pregnant (something that we would have happily accepted even before marriage).

It was the most frustrating period of our lives, and despite doing everything right (buying ovulation kits and working out all of the nonsensical mathematics of it), it just didn’t happen.

In fact, we just struck out, time and time again.

On one occasion I woke up in dreadful pain. Bleeding heavily and doubled over with cramp in my stomach. Michael being the angel he is, took me to A&E and there I was advised that I may be having a Miscarriage.

This happened again.

And again.

It was heartbreaking.

My doctor advised me that we were to keep trying. It can take time. He didn’t want to even consider IVF until I was 30.

By this time however, we had given up. We spoke at length about whether or not we would be enough for each other. Just us two.

I felt strongly that Michael and I could have a wonderful life on our own. He did too, but he clung on to hope that one day it would happen for us. He’s like that. It’s one of the things I love most about him, but also one of his most annoying qualities. I just wanted to put an end to it and enjoy our lives as they were. For at least a short period of time we did this.

However, in my head I needed a distraction from it all.

I joined my local Weight Watchers and began a healthy eating/ exercise regime. It was a great focus for me and I found that I simply forgot all about our baby making woes.

I lost a great deal of weight within a very short period of time, and backed up this weight loss with a pretty rigorous exercise regime.

I felt the best I had in years. I was happy and I was content.

It’s amazing how looking back you realise how much you were in fact kidding yourself.


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