Got milk?

Me and Runa have now come to the end of our breastfeeding journey! Anyone who knows me well knows that breastfeeding is important to me and it has been an experience that I have cherished with both of my children. As much as it is emotional that we’ve now finished, I also feel like celebrating the accomplishment.

I’ve recently been in touch with a researcher from Ulster University who is collecting stories from mums who have experience breastfeeding a child with a complex medical condition and when speaking to her I was able to reflect on all of the challenges that came my way with Ru.

(Now before I harp on, I want to say I support any mother’s choice with how they feed their children. I am passionate about breastfeeding, but that is not to say I judge anyone who has made a different choice. If I come across a bit sanctimonious or pushy with my views it is accidental. This is about my family, no one else’s.)

So, whilst reflecting on mine and Runa’s breastfeeding journey (I recognise that that is a cringe worthy expression, but I’ll keep using it anyway) I realised that I am indeed incredibly proud of myself! There were various obstacles that we had to overcome and by sheer will and determination I pushed past them and I feel fairly smug at this achievement…

Obstacle 1: Undiagnosed Developmental Disability

Aicardi syndrome causes significant developmental delays and is linked to many problems with feeding. When Runa was born we were blissfully unaware of her rare genetic condition. To start with, Runa was very tired and reluctant to latch onto my breast. Runa was given a few mouthfuls of formula by a midwife then quickly slapped onto my breast once she’d started sucking. We’d finally got started, but it was a good couple of months before we were completely set.
Runa also wouldn’t keep her airways clear and I regularly had to push my breast away from her nose so that she could breathe. At the time this did seem weird… And with the benefit of hindsight I now realise this was indeed weird.

Obstacle 2: Mental Health (or lack there of)

When Runa started having seizures and was diagnosed with Aicardi syndrome I was very low. (you can read more about that here if you care to; https://mystrongru.wordpress.com/2018/09/12/five-stages-of-grief/ ). It was recommended that I move Ru onto formula to give myself some respite and take care of my mental health. I was tempted. I was scared, frantic and part of me wanted someone else to take on the responsibility of caring for Runa so that I could get to grips with this overwhelming situation. Luckily there was a rational voice deep inside my mind that knew I’d regret that choice. I knew that if I relinquished that responsibility, no longer feeding my daughter in a way that had always been so important to me, it would have been too easy to push Runa away and build up barriers. I feel breastfeeding contributed greatly towards saving our bond during a traumatic time.

Obstacle 3: ‘Roid rage

When Ru was put on steroids her hunger was insatiable. I was feeding her constantly, at times more than once an hour, and it was both physically and emotionally exhausting. While we were still in hospital the lovely nurses sourced me a breast pump and my very kind sister in law gave me some of her expressed milk, but other than those three or four bottles it was all me. Once we left hospital it was much the same until she started weaning off of the steroids. Though it was challenging, it felt so worthwhile to be able to give her breast milk. My tiny baby was being pumped full of big, scary drugs and through it all I was able to provide her with the best food possible.

Through the various challenges I persevered and, as I say, I am very proud of myself and my girl for making it past the year mark for nursing. Though it has been challenging, the majority of our breastfeeding journey has been truly lovely. It has supported our bond through the tough times and it is certainly a period of our lives I will look back on fondly.

So Yay me! And Yay for breastfeeding!

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Rare Disease Day

Today is rare disease day. I warn you now this post has a lot of information stolen from other pages (all links at the end, naturally). So… “A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2000. A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time.”

My beautiful little rare person is of course Runa who has aicardi syndrome. To put her rare disorder in perspective; “Aicardi syndrome is a very rare disorder. It occurs in about 1 in 105,000 to 167,000 newborns in the United States. Researchers estimate that there are approximately 4,000 affected individuals worldwide.”

The goal of Rare Disease Day is to raise awareness of rare diseases and disorders in public. Awareness is vitally important as it leads to research which in turn leads to more advanced treatments and better quality of life for those affected. On a personal level, raising awareness is empowering for individuals and for families. I am my daughter’s advocate and I am open and honest about her condition, talking about it to anyone who is interested. I am not ashamed or embarrassed by any aspect of my beautiful girls life, if I can reduce any stigma or taboo around disabilities I will put my whole heart into doing so.

So in the interest of raising awareness, here is a summary of Aicardi syndrome from the national organisation for rare disorders (and if you are interested to know how it impacts our day to day life, please read any of my previous blog posts!).

“Aicardi syndrome is an extremely rare genetic disorder. Almost all people with Aicardi syndrome are females. Individuals with Aicardi syndrome have agenesis of the corpus callosum, chorioretinal lacunae and seizures. Agenesis of the corpus callosum means that the structure that connects the right half of the brain with the left half of the brain (corpus callosum) does not develop normally. Chorioretinal lacunae are small holes in the retina (back part of the eye). These are only visible to a doctor using a device to look into the back of the eye. It is very unusual (maybe impossible) to have Aicardi syndrome without having chorioretinal lacunae. The seizures can be of different types. Infants with Aicardi syndrome usually have a type of seizures known as “infantile spasms”. These are single jerks of the whole body. They may happen many times a day. Infants are usually awake during infantile spasms. These look different from the more common type of seizures known as “generalized tonic-clonic” seizures. Generalized tonic-clonic seizures are rhythmic jerking of arms and legs. People often black out during this type of seizure. Children with Aicardi syndrome usually grow out of infantile spasms and then have generalized tonic-clonic or other types of seizures. Other parts of the brain also do not develop normally. These brain malformations cause frequent seizures and intellectual disability.”

Please feel free to share this post to raise awareness about Aicardi syndrome

https://ghr.nlm.nih.gov/condition/aicardi-syndrome
https://rarediseases.org/rare-diseases/aicardi-syndrome/
https://www.rarediseaseday.org/

Take a Seat

Runa had her seating assessment last week and got all fitted for a supportive piece of kit that will be arriving some time in the next 10 weeks. Runa’s wonderful physio had warned me I might find it difficult because it’s not the cuddliest looking thing and she was right. It really highlighted the fact that Runa has disabilities. But Ru’s physio supported me to see how beneficial the seat will be; how it supports her, how she doesn’t need to focus so much on holding herself up so that she can use her hands, practice her fine motor skills and play.

I’m on board, and I’m looking forward to it arriving, even if it’ll take a bit of getting used to.

In the mean time, my incredibly generous grandparents bought Runa a GoTo seat. Again, when she is sitting in it, it does highlight the fact that she is a child with disabilities. But it’s brilliant! It holds her up, giving her the support she needs, and as the name suggests, it can go everywhere with us!

Being able to use the seat in the house is already making it worth the money. Previously, if I had wanted to do dishes, hang up washing or even go to the toilet the choices for Runa would be to leave her on the floor or on the sofa. Leaving her on the floor doing tummy time would mean she would get fed up, roll on her back and not be able to see anything; making her bored and angry. If I left her sat up on the sofa, she could see everything, which was good… Until she would try to sit up straighter and fall flat on her face, risking falling off of the sofa.

The GoTo seat is safe and secure and holds her up perfectly so that she can see all around her. I can move it to the kitchen so she can watch me doing dishes, shove her in front of the TV if I need to go upstairs, or point her at Nina while she plays. Yes, Runa will get fed up and grumpy because she’s a girl who likes her cuddles. But even if she gets upset for a couple of minutes while I finish what I’m doing, I know she’s safe.

The GoTo seat fits in trolleys which has been a life saver. I had bought Runa a harness for the trolley but it didn’t have the support that she needs. Whether it’s because of her condition or her medication, Runa has regular cat naps, so the old harness wasn’t designed to hold her up in such an event. In the GoTo seat, of course her head will flop forward when she falls asleep, but due to the support it provides, she is held safe and upright, not having to worry about her bumping her head on the front of the trolley.

The GoTo seat also attaches to dining chairs. Until it arrived I’d been using a inflatable seat pillow from IKEA which worked great in some highchairs when we were out and about, but was useless in others. It was particularly useless when I regularly forgot to take it with me…
The GoTo seat will make dining out considerably better, knowing I don’t have to worry if the pillow will fit in whatever highchair might be on offer.

Finally, yet to be tested is the park! The GoTo seat fits in park swings and now that the warmer weather is slowly moving in, we’ll be trying out the park as soon as possible.

Now that Runa is a year old, things will be changing and more equipment will be coming her way. It’s not always going to be easy for me but I know that it is all necessary to support her to live life to the fullest. I’ve already seen the enormous benefits that the GoTo seat can provide (and we’ve had it for less than a week!) So when her chair arrives from the NHS I’m sure I’ll feel the same about that.

 

https://www.fireflyfriends.com/uk/goto-seat

Happy Birthday to Ru!

Runa is now one whole year old!

She has had a fantastic weekend of celebrations, seeing lots of wonderful people and playing with many beautiful gifts.

On Friday (the 1st of Feb, her birthday) her big sister was very excited about given her present and singing to her first thing in the morning. Soon after I took Runa to her hydrotherapy Group. She is such a water baby that she ended up falling asleep in the pool!
Following that, we went home to collect her big sister and headed out for lunch with some close friends. We then headed to a toddler group run by parents of children with additional support needs; a group that has been invaluable to me for moral support.

On Saturday we invited family to the house to have a small gathering to mark Ru’s big first birthday. It was so lovely to see the family who could make it, and the family who couldn’t were missed.

Before we cut the cake I gave a toast, thanking family for their support over the past year. I am particularly grateful to them for their unconditional love and high expectations for Runa. I made a special thank you to Nina for being the best big sister in the world; her inclusive attitude towards Runa will support her to thrive. A special mention was made to my wonderful husband Stewart. Everyone sees me as the strong one who keeps everything moving, but he is stronger than he knows and me and the girls would be lost without him.
The toast finished by being directed to the birthday girl herself. Though her disability has made things difficult at times and triggered some challenging emotions, it is only one part of her. She is strong, bright and beautiful. She is inspiring, loving and, as far as we are concerned, perfect. She makes everything we do completely worth it.

Runa received so many wonderful gifts and a good chunk of them are sensory toys. We are so well equipped with projectors, lights and touchy-feely things, I’m looking forward to integrating a “sensory play” time into her day.

We’ve had a lovely weekend and, though she had no idea it was her birthday (and slept through most of her party), Runa has thoroughly enjoyed herself.

Happy Birthday Runa! We love you so much x

Reality

Runa is getting put forward for a seating assessment, which will provide her with a very large, structured floor seat. She is coming up to her first birthday and her sitting isn’t where the physiotherapist would have hoped it would be, so more support is appropriate.

Me and the physio had a rather frank discussion about what we can expect over the next year for Runa.

A standing frame to support her hip development and avoid potential dislocation and encourage weight bearing.

An adapted, structured buggy to support her to sit properly whist protecting against scoliosis.

Towards the end of the year, a walker to encourage… well, walking.

Over the next few years if Runa is not going to be a walking child we will start looking into wheelchairs etc.

This brought some difficult thoughts and feelings to the forefront of my mind. I knew this was all coming, I knew this was what we could expect, but it has been quite painful… Pulling the thoughts floating about in the back of my mind and forcing them out of my mouth during a conversation… The reality of Runa’s future is rarely easy to take.

Runa can sit briefly and play with toys in front of her, but her back is very rounded and she does not have the core strength or coordination to stop herself falling over.
Runa can weight bear for all of a few seconds before she gives up.

In my personal opinion, over the past year Runa has met the developmental equivalent of a 4 month old. I feel we will be very lucky if she meets the developmental stage of an 8 month old by her second birthday.

It isn’t a nice thought really, but since diagnosis there has been too much uncertainty and now I feel like we have at least a little more clarity over what to expect.

We can expect continued, slow development and we can expect a lot of physio and occupational therapy equipment. We can also likely expect that Runa will not learn how to walk.

None of this means that I will be giving up. Runa is fantastic, unique and a genuine joy to spend time with. I will continue to work her hard with her physio and give her every opportunity available to develop her skills. She has surprised everyone so far, there could be many more surprises up her sleeve.

The reality facing our future brings a lump to my throat, and in the interest of being kind to myself, I am allowing time for some wallowing in self pity.

But the reality of the present is so much more important. Both of my beautiful daughters need me to face the world head on with them and believe they are capable of incredible things.

Normal Mum and Kid Stuff

It has been a fairly typical day in my life. I had an appointment in the morning, then went to pick up Nina from nursery. We ran a couple of errands; off to the shop to buy a couple of essentials (milk and a colouring book). We then came home, had lunch, had coffee, watched cartoons… Normal mum and kid stuff.

I have wanted to do house work throughout the day, but every time I have put Runa down she has screamed her head off. She is of course happy when I’m playing with her, cuddling her and reading to her. But when I put her down she yells so much it makes her throat sound like it’s about to pop.

But the house work still needs done, I said to myself, putting Runa into her jumpy chair so that I could wash the dishes. She screamed and screamed… And screamed some more. Then, just for good measure she started throwing herself back and forth until I was done.

Of course, another cuddle made everything better. Ten minutes of shaking various toys and singing some songs pacified my little cherub. So I put her on the sofa with some toys and encouraged her big sister to keep her company while I attempted to sort out some of the clutter in the living room. It may not surprise you to learn that she started screaming and crying at me again.

Mothers have evolved to not deal well with their children crying. Instinctively all you want to do is pick the baby up and comfort her, and who am I to argue with millions of years of evolution?

I sat down, put Runa on my lap and cuddled her until she stopped crying and fell asleep. Then I started to cry. How am I supposed to do anything, ever, if she can’t be put down?

So in the interest of instilling some sanity into my frantic mind, I’m sitting her turning it all on its head.

My child, who has developmental delays and brain malformations, understands her own desire to be comforted. She responds appropriately to interaction and will let everyone know how she’s feeling.

My child, who may never crawl, walk or sit without the risk of falling has enough strength in her legs and core to express frustration physically. (testament to her desire to get moving, she desperately tries to sit herself up when she’s reclined. This often leads to face-planting. Which her parents, of course, never giggle at…).

My child is here and I am so lucky to have her in my arms, cuddled up on my chest.

Runa is crying when she wants held… This is not a disabled baby thing. This is not an aicardi girl thing. This is a normal baby thing.

The house work can wait. I’ve wiped my tears and I’m enjoying my Cuddles with the most amazing baby I know. This is normal mum and kid stuff. It may drive me crazy but I love it all the same.

Update: Stewart came home and I managed to hoover the living room!

Happy Old Year

It is the last day of 2018 and what a year it has been!
It has been a year of massive changes and adjustments in the Wyllie house hold. It ferried in the lowest period of my life but has left me with more love and strength than I thought was possible.

No parent dreams of having a disabled child, but the vast majority of parents of disabled children wouldn’t have it any other way. Aicardi syndrome is a horrible condition, but my daughter is wonderful. The syndrome is a part of her and I would not change a single thing about her (apart from the seizures, they can get in the sea).

Having said that, Aicardi syndrome has changed our families future. Me and Stewart always envisioned our future being spent supporting our children through school, university and an array of extra curricular activities. I was keen to head back to university and pursue a career in occupational therapy. We saw our retirement spent in a ground floor tenement flat in Glasgow’s west end, spending days walking the elderly rescue dog we’d adopted to live out it’s twilight years in comfort, and spending our nights propping up the bar at Tennent’s.

Now our future is a little different. It will still revolve around supporting our children to reach their potentials in their own ways. But it won’t be adopting scabby dogs and kicking about the west end of Glasgow.

2018 changed our future, but it changed it for the better. The four of us fit so well together and, despite the occasional tears, we are happy, resilient and full of love.

So bring it on, 2019. Let’s see what you have in store for us.