Changing perspectives

One day my gorgeous Floyd-Henry will be an adult, he will never be able to get away from the stares and the looks of curiosity but I do hope he will be able to move through his life in a world where curiosity doesn’t turn into rudeness. This is why we are here. To help people see life through Floyd-Henry’s eyes and spread awareness. To normalise it. This young man, has made a short 3 minute video with a hidden camera attached to his chest highlighting what his life is like everyday.. He has the same condition as Floydy. I ask you please to like and share this so our Floydy may have a better world to live in as it’s a wonderful insight into the world of a person with dwarfism. Love the Morley’s 

Emotional Day.

Today was a very emotional day for me (Floydy’s mum) and a big day for his milestones.

Today we went to a 2nd birthday of a little boy named Huddy who has Achondroplasia (dwarfism) just like Floydy. It was also a day hanging out with a group of beautiful little people. It was pretty surreal and I was a little teary. It was our first time being involved with this mothers group.

We did get a chance to take a picture with this cutie. Meet Marisela (or Zels) and you all know Floyd-Henry. Zels is almost 2 and Floydy is almost 11 months. Her mum described it perfectly by saying. “Two little buddies bound by something very special”.

And if you didn’t read our post a few days ago about how hard it is for our little ones to meet milestones then I suggest you do because afterwards you will realise how massive it is for Floydy to be sitting here in this picture.. What a little champ he is. This pic was taken with me right next to him ready to catch him but he still managed to use his muscles to hold himself up for the 10 seconds it took to take this pic..

A-MA-ZING!!! I honestly thought this day would be many, many, many months away, when he was closer to the age of 1 ½ years old. I’m continually awed by his determination and strength. We love him so very much.floydy9 floydy6 floydy4 floydy 3 floyd2

Some questions you may have

Question 1- Will you and Ross have another child with Dwarfism? Floyd-Henry’s type of Dwarfism is a spontaneous mutation of his genes at conception. There was nothing Ross and I could have done to prevent it. It was not a recessive gene in our DNA and therefore the chances of it happening again are just as likely as it would be to happen to anyone. So the answer is No, extremely unlikely.

 

Question 2- What are the chances of Floydy having a child with Achondroplasia-the most common type of dwarfism? Posted from the lovely Jennifer Schafer.

If Floyd-Henry has a child with an “average height” (average height meaning a person without the condition) partner then they have a 50% chance of inheriting Achondroplasia. However, if he finds love with someone who has the same condition as he does, the child’s chances of being affected are still 50% and a 25% chance of a child with average stature, and 25% chance of a lethal double dominance in which a child usually doesn’t reach full term or unfortunately passes soon after birth.

Question 3- Will Floydy meet all the milestones at a similar time frame as “average height” children. From Amber Henson

Children with Achondroplasia (the most common form of Dwarfism) are likely to have a delay in gross motor skill (gross motor skills are large movements like crawling, walking & sitting) acquisition compared to other children. Balancing a large head on a small hypermobile neck requires extra back and neck extensor strength, often resulting in a delay in obtaining head control.

neck extensor strength, often resulting in a delay in obtaining head control.

Most babies with achondroplasia are also hypotonic (low muscle tone), so it takes even longer to gain strength and control.

http://www.schn.health.nsw.gov.au/_policies/pdf/2010-8047.pdf

For Floyd to meet his milestones, he has to work really hard. He is one determined little soul. He will stand up on his own and be panting with exhaustion but will still try and hold himself up. He will roll and roll to get what he wants, and when he arrives at his destination, he’ll make sure he glances your way to lock into your gaze and give you a confident, proud little smile.

So Floydy is now 11 months and is rolling, he is getting better at tummy time.He is standing and bearing weight on his legs but cannot get to this position without us giving him a little assistance.

 

What this means for us.

Floydy loves to be busy so we spend a lot of time carrying him around to see the world. When we place him on the floor we get about 5-10 minutes of independent play however, he loves to stand, so he will kick his legs and yell at us regularly to put him in a standing position. Unfortunately he cannot get himself up and down from a standing position so we need to stay behind him to keep him safe. We are unable to put him in a walker or any chairs so it can become tiresome as a parent.

We have a milestone chart for children with Achondroplasia to help us know when each milestone is expected but the development curve is different for each child. He is not expected to crawl because of his shorter legs but will commando crawl and will be expected to do this at around 12-15 months. He is not expected to sit independently until around 18-24 months and the same is for walking.

 

So far Floydy has exceeded all expectations with his gross motor development and we are so proud of him and his shear determination to keep up with his friends.IMG_5666 IMG_5680 IMG_5756 IMG_5759 IMG_5812 IMG_5818 IMG_5819

We made it through

This weekend Ross and I (Floydy’s mum) went away for our very first night, without our little man.
We have gone through a pretty massive journey together as a family and as a couple. I remember when Ross and I first found out about Floydy’s condition I had thoughts of “Well we may as well break up” we were so devastated by his diagnosis that I just thought we wouldn’t get through it. That it would be easier if we were not together. We both silently blamed each other for what had happened. We thought that if we were not together then this wouldn’t have happened and maybe we weren’t meant to be together. How wrong we were and how your mind sends you to the strangest places when you’re going through a tough situation.
Today we are the happiest and strongest we have ever been and have had such a beautiful weekend away. We now can’t wait to get back to our little man. Xx

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Easter time and our Interview with 60 Minutes

We had a beautiful Easter with Floyd’s cousins and his Aunties and Uncles. Ross’ sister has returned with her family from England to make Australia their home. This was an enjoyable time, it was time well spent.

Floyd-Henry has really progressed over the last month with his gross motor skills. Due to his condition he has low muscle tone, so it is harder for him to become strong enough to sit, crawl, push up, sit up and walk. Typically a child with Achondroplasia will be much further behind with developing these skills.

We were told Floydy probably won’t ever crawl but instead, will commando crawl. Apparently Achon kids will not walk until 2 or 3. So naturally whenever he progresses further and becomes stronger, it’s a really big deal to us. Last week Floydy started pulling himself up in his high chair and started grabbingtings off his high chair table. He is still some time away from sitting independently but we are excited by his progress. He is also now finally holding his own weight when standing. For a very long time his muscles just didn’t have enough strength to do this but finally, he can. A large smile spreads across his face, his chest comes up and he looks oh so proud of himself. Its like he is grasping at his independency and can feel himself bursting to explore the possibilities these new movements and this progressing strength can present.

This month we were also approached by a very well respected and reputable Australian television show, 60 Minutes. They cover all mediums with their interviews. They wanted to interview our little family, basically to find out how we coped whn finding out about Floyd-Henry’s diagnosis and why we created our video. We were extremely humbled by the experience.

Following on from each opportunity we get tell our story, we are usually inundated with support and love from the community. Local and from afar. People write to us with all sorts of heartfelt stories and include us in their warm messages of love. We feel so grateful to receive this support, however it does feel a little overwhelming at times.

It is sometimes difficult to respond to everyone in a timely manner, this includes the people I really want to help (other parents with children who have had a recent diagnosis’).

By allowing our story to be covered on this media platform, we were hoping to raise further awareness about Achondroplasia on an even larger scale. I was not sure if I was emotionally ready for this yet, however with all the love and support we have received from everyone and being privileged to be given this opportunity, we decided to share our moments with you all.

We had a brilliant time filming (2 full days and many afternoons and mornings) but were exhausted at the end. Floydy was the star, even though he was teething during the filming. The story airs roughly around the end of May, maybe the start of June.

We are really excited to see how it comes together.

I will be writing a Blog post after it goes to air and this will explain in further detail my experiences.

Love to you all.

Jade, Ross and Floyd-Henry.

 

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Telling our family and friends

Our Video – Our Story
One of the reasons We wanted to create this video was to share our news with all of our friends, family and the local community. We wanted to do this in a positive way.

By presenting it in the form of a short film, we could replace the initial response of shock and the barrage of questions with the story of love that we have for Floyd-Henry and at the same time, educate the audience.

We didn’t want to tell the story a thousand times.

Using this medium allowed our story to be heartfelt, it was really well received and went on to impact a much wider audience than we could and did ever expect.

We hope you enjoy our story and little treasure as much as we do.
Jade, Ross and Floyd-Henry Morley

To watch our video please go to our home page or click on this link ->  Floyd-Henry Morley Video

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