My little HAIR raisers!!!

Can we just spend a little time here talking about something important. I’ve already touched on it in my previous posts but it’s important for me to just get it off my chest.

Okay, here goes. MychildrenhavebothgotCRAZYhair!!! Did you hear me? Phew. Much better.

And I feel guilty that it’s my fault. The bad hair gene. And it seems to get worse with every child.

Let me take you back to my first born Maisy. She welcomed the world with a beautiful full head of dark hair. That started falling out. Changed colours every month. And eventually settled on a strawberry blonde mullet. A beautiful head of mullet. I would trim the back in the hope the front would catch up. It just never did.

The mullet!

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Dixie was also born with a beautiful full head of dark hair. That once dried out from the birth yuck, had a strange crinkle in it. And within a day or two I noticed her fringe not only had a flash of blonde, but went in a completely different direction to the rest of her hair. And it was so long. Her body wasn’t growing inside my womb but there was no doubt her hair was. Thankfully there are baby hats. And very cute ones.

See…cute baby hats

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Dixie does not want the world to see her hatless!!

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The first time I saw my hairdresser I literally handed her Dixie, pointed to her fringe and asked if there’s anything to be done? Her response was get some lovely headbands and clips – ‘she ain’t ever gonna have a fringe’!!

Even Daddy L got in on the act and mentioned us starting a fundraiser for her. ‘For what?’ I asked.
‘To get Toni & Guy in’!!

Everyone’s a comedian.

I will never forget the report we received from Dr diagnosis following his examination of Dixie. It wasn’t a particularly nice thing to read as it picked out her ‘unusual’ features in details. Then I came across ‘coarse, slightly wiry hair’. My initial reaction was to laugh. That turned to a bit peeved. Mama bear was out. Yes her hair was crazy. Yes it was wild. No it was not coarse OR wiry. I was planning my choice words for when I saw him again!

Not coarse or wiry 😉

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Fourteen months old now and my girl still has the crazy hair, the unruly fringe and even some curls. But I wouldn’t change one single hair on her head. She is perfect to me.

And Maisy. Well her hair outgrew that mullet a couple of years back, though the colour still changes every season.

So there we have it. Whether they be crazy haired or not. My girls are my world and I bloody love them. Lots and lots like jelly tots 💕 And no. Lucky for him I never did see Dr diagnosis again!!

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Another corner turned.

My first taste of having a non typical baby was being invited to attend a baby massage course at our local hospital. Dixie was just 3 months old and was poles apart to any other 3 month old I’d met. I was so nervous to go. I didn’t want to explain why Dixie wouldn’t look directly at me, or in fact why she didn’t interact with me at all. But I knew this would benefit her, and with the carrot-dangling information that a different professional would be there at each of the four sessions, off we went.

It was fine. More than fine actually. As it turned out the other parents had all experienced difficult times. Tricky labours resulting in poorly babies, chromosomal disorders and other conditions. Nobody commented on Dixie and her obvious (to me) differences. Everybody was there to get the best out of the massage and the expertise of the professionals present. Not even a double take of Dixie’s crazy hair! Seriously!!

The course was run each week by a developmental play therapist (never heard of one of them before either). She was really great, made us feel at ease and had a wealth of knowledge. She has since become an incredibly important part of our journey.

I felt I was slowly starting to find ‘my’ people. One fabulous mummy in particular I felt I could chat to easily & honestly. It was quite liberating considering at this point I was keeping Dixie’s diagnosis quiet like a dirty secret.

Week three had a Speech & Language therapist present. Their role with babies is to monitor feeding. Dixie had always been a difficult feeder. From being unable to breast feed due to her small mouth and high palate, to only taking tiny amounts of milk from a special latex teat. Feeding sessions were very long and drawn out. It was only once I finally introduced milk thickeners a week or so previous for suspected reflux that things had improved. But there was still something not right. And this therapist agreed and arranged to see us the following week. Finally I felt like help was on its way!

As for the massage part – of course Dixie screamed through every session! She would lure me in with a false sense of security with her calm nature. The onsie would come off. Still calm. The oil would be rubbed over my hands. Yup still calm. Then I would smear the oil on her and waaaahhhhh waaaahhhh!! Cue oily cuddle 😆.

Nevertheless, we left that little four week course with a few positives. An appointment with the Speech therapist, a date for our first community paediatrician (the team that would be taking over Dixie’s care), a lovely new friend and a new found confidence that things were moving along!

My little moo cow – 3 months old.

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My first rays of sunshine

Those early few days following ‘diagnosis day’, after we left the hospital with an internet printed booklet on all there was to know T9M related, I was going through so many different emotions. In fact I remember being strangely upbeat and positive, as long as I didn’t talk about it. I was firmly in denial and almost too scared to do my own research. After all Dixie was still a newborn baby like any other at this point.

I searched T9M on Facebook and came across a closed group. So many times I went to click join then changed my mind at the last minute. It was three weeks of feeling positive one moment and crying in the shower the next, when I finally clicked on that button. I was desperate for Dixie’s diagnosis to be kept quiet but I needed somebody to listen to me. Someone who understood…and there was my first ray of sunshine.

This Facebook group absolutely changed my perception of Dixie and my ability to be the best mummy for her. They were there for me in the times I didn’t even realise I was broken. I would post statuses or questions completely honestly for the first time, and would have tears rolling down my cheeks as I read the replies. It wouldn’t matter if it was day or night, there was always somebody there. People, total strangers, taking time out of their busy days/evenings/nights to say something to lift me up. To tell me they’d been there, and my feelings were normal and the future could be bright.

And it didn’t end there. A mummy at a massage group at the hospital, Dixie’s bedmates mummy when she was in the hospital, the mummy who replied to my netmums plea and my Tuesday girls. I just kept meeting these inspirational and wonderful people who have all become important to me in one way or another.

These amazing parents helped me gain confidence. Confidence in becoming the best mummy I could be for my girls, being Dixie’s biggest advocate and finally talking about her openly. I started joining more groups online, coming across blogs following the smallest people with superhuman strength, and meeting more inspirational parents. I finally realised there was a whole other world out there and that we’re not alone. And we never will be.

And to my T9M parents, you have done this for me. I don’t know where I’d be if I hadn’t clicked that join button. Thank you!

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Let’s start at the very beginning, it’s a very good place to start..!

I thought I would kick off with a little Q&A session so I will pop on my serious hat for a moment..

What in the world is Trisomy 9 Mosaic?

In very basic terms, trisomy (three) 9 (chromosome number) mosaic (some) = three copies of chromosome 9 in some cells. 

In your typical person each cell is made up of 22 pairs of chromosomes numbered largest (1) to smallest (22) plus sex chromosomes X & Y. Each pair is inherited one from the mother and one from the father and totals to 46 chromosomes.

Our Dixie however has 47 in some of her cells and 46 in others.

So what does that mean for Dixie?

We really have no idea what the future holds (does anyone??). The disorder is so incredibly rare that very little research has been done on it. What we know is she has delayed development and some associated health problems. We also know she’s a rare little gem and predicting possible outcomes for her have no baring on what she may become. So we try to be more in the here and now. Yes it’s tough!!

How is she affected currently?

Her heart. She has a VSD (hole) and pulmonary stenosis (tightened heart valve). At present her heart is enlarged on the left side due to the hole, so it’s possible in the future she may need surgery to close it.

She has feeding/swallowing difficulties and is an aspiration risk (when fluid penetrates or goes onto the lungs when swallowing) Her swallow is uncoordinated, all fluids must be thickened and more recently we discovered she is unable to use a cup due to the risks. We are awaiting a review from her paediatrician but it looks like her fluids will need to be tube fed directly to her stomach in the future.

She had an emergency operation to fix an undiagnosed diaphragmatic hernia at almost 9 months old. At the time of surgery they performed a gastrostomy (a mic-key button that sits on the outside of her stomach – usually used for feeding direct to the stomach). This was originally placed to anchor the stomach down but due to her feeding difficulties it’s unlikely to be removed as previously hoped.

She has delayed visual maturation (doesn’t see what she should for her age) and left microphthalmic hyperpigmented fundus (small eye)

She doesn’t sit unassisted but we are working tirelessly on this. She also bears no weight on her legs so we are waiting for a hip X-ray.

Did you know when you were pregnant?

I didn’t. She was 5 weeks old when she was officially diagnosed but I think I always knew there was something different. She was classed as IUGR (Intrauterine growth restriction) at 36 weeks and she was born at just over 37 weeks at a teeny 4lb 10oz. At a day old they found a heart murmur we knew nothing of, and noticed some dysmorphic features. Bloods were taken and the rest is history!

Here’s my 1 day old little lady 💗💗

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Hello world! Meet Us :)

Gahhh…it’s my first blog post and I don’t know where to begin. I guess I will start with introducing the main little lady and the reason I’ve decided to start this blog…

Meet Dixie. She is amazing, grumpy, beautiful, stubborn, willfull and has THE most crazy hair. She loves balloons, noisy toys, crinkly sounds & FOOD. She also has a cheeky little extra chromosome 9 in some of her cells AKA Trisomy 9 Mosaic (T9M). She is 14 months old. 

Meet Maisy, Dixie’s big sissy and idol. She doesn’t have any cheeky little extra chromosomes but she is most definitely cheeky. 4.5 years old going on 25, she is the ruler of our house. She loves dress up, baby dolls, princesses and being the centre of attention. She is also the BEST big sister ever and has slightly less crazy hair!!  

Meet daddy L. The girls daddy who we shall call the silent partner at this point. I haven’t got around to telling him about starting this blog yet..!!

And finally meet me. The girls mummy and the reason for the crazy hair (sorry sweet girls) I’m here because I have a story to tell, our story and I want to tell it. Nice to meet you 😉