Coleby’s Journey

So how our journey began…

In September 2007, I found out I was pregnant with my first child. I was 21 years old.

I had a ‘normal pregnancy’, morning sickness like no tomorrow, swollen feet and ankles, cravings of mainly cheese and I went 13 days overdue.

On the 9th of May 2008, after 27 hours of excruciating hell, I gave birth to a 8 pound 5 ounce bouncing baby boy. I named him Coleby.

PERFECT baby! I know that everyone says their child is perfect, but he was. He was good at feeding and even better at sleeping. Geez this motherhood business is easy! What does everyone go on about?

So the 6 week check up! You know the one where its probably your first time out in

public trying to act like you know what your doing and your just praying to god that your baby just doesn’t spew or poop everywhere or start screaming! Well anyway, I took Coleby to my local GP. He hasn’t put on much weight or grown much. They also notice his eyes were slightly turning in. Awesome, you think your doing 

 

a great job and then instantly 2 people make you feel like your starving your child and something is wrong. We got referred to the local community health nurse and an optometrist for his eyes.

So the Optometrist Appointment was the beginning of everything. The Optometrist was concerned but didn’t want to worry me until another Doctor could examine Coleby. We are now referred to an Pediatric Ophthalmologist in Sydney.

 

3 months has now passed and Coleby is now about 5 months. My dad was the first to pick up on a few things. Coleby wasn’t grabbing for toys and would get scared easily. The day had finally come for the Ophthalmologist. My mum came with me on this 3 hour drive for the appointment. After being examined, the Ophthalmologist bluntly told me that it is highly possible Coleby can’t see! I was devastated! My baby will never know the world around him! What have I done wrong? The Ophthalmologist organised a MRI to confirm his suspicions.

In March 2009, Coleby is now 10 months and noticeably not meeting milestones. He can sit with something behind him, he is not crawling, not attempting to pull him self up and without assistance can not roll from belly to back. For the MRI Coleby had to be sedated. Handing over my babies lifeless body to strangers to perform tests is heartbreaking!

RESULTS ARE IN! 

3 days before Coleby’s 1st birthday, we had an appointment with a Pediatrician for the first time. The Pediatrician got the Ophthalmologist on the phone for a phone conference. The Ophthalmologist begins… He tells me that Coleby has underdeveloped Optic Nerves. This means that little or no light can get through. Coleby can’t see!

The Pediatrician then added, Coleby has a small pituitary gland, further testing is required to determine hormone levels.

In July 2009, Coleby was admitted to the John Hunter Hospital for Hormone Testing. These tests came back saying that Coleby’s thyroid isn’t functioning and that his growth hormone level is also low.

WHAT DOES THIS MEAN?

In Sepetmber 2009, I started giving my 16 month old baby tablets crushed up in his food and a nightly injection to assist with growth.

Further MRI scans in early 2010, diagnosed Coleby with Cerebral Palsy mainly affecting the left side of the body. At this stage Coleby still wasn’t walking. I was told that if he wasn’t walking by 2 years of age then there wasn’t going to be much hope.

With perseverance, I tried everything possible to get him walking. Excercises daily, physio, water therapy, slight weights etc. Coleby’s 2nd birthday came and still not walking…

A month after turning 2, Coleby took his first steps. A few steps here, a few steps there and soon enough he was walking!

COLEBY TODAY

So today Coleby is in year 3 and is 9 years old. He loves school. He goes horse riding with his school through Riding for the Disabled. This is a great program for these kids and I am so proud of Coleby getting up on that horse.

He wears a Orthotic on his left foot to strengthen his muscles and help stop his knee from popping backwards. Coleby is able to run, walk and jump. Not as far as most kids but he can do it.

Coleby is still taking Thyroxine everyday and still has growth hormone injections every night.

Coleby has been day time toilet trained for about 6 months. We are still working on the night time toileting.

Coleby is on a puree diet and is very fussy with food. Again, we are working on changing this. Coleby also still has a bottle, we are in early stages of transitioning to a sippy cup. Coleby is able to feed himself although he makes a mess, I am happy that he can do it and is trying the best he can.

Coleby’s language is still developing. He is talking but in simple sentences.

 

 

8 Comments

  1. Your story is so inspiration and I love hearing of these stories of triumph from the parent. Its so funny but children just have a way of having the inner strength to keep living their lives and showing very little self-pity for themselves. I’m happy to hear that he is gradually progressing in his developments and even though he is taking a little longer than other kids, I know for you it is wonderful to see him progressing. I also think its cool that your son has the same name as my husband lol (Spelled the same too lol.) I would to hear more about his milestones and your encouragement to other mothers as well! Thank you for sharing!

    • Thank u so much for visiting my page!

      Your words are very kind!

      I plan to use my site as a means of encouragement and support to other mothers who are just starting out! I know what it is like and it feels like there is absolutely know one else out there.

      Coleby isn’t a very common name. Your husband would be the first I have heard of lol

      Thanks again for your visit!

      Regards Hailey

  2. I’m not sure what it’s like to be scared for your child. I’m very inspired by your journey and the courage it can take to go through wondering. I have nephew who had to have surgery done because of a heart condition.

    I’m sure this was a very scary thing for my sister. But again I don’t know the journey and could never understand it like a m other does. All the best as you continue raising your child and bringing him up.

    • Hi there

      Thanks for visiting my site!

      The hardest part of having a child with special needs is not having anyone to talk to. My site is dedicated to sharing our journey and to help and support others going through a similar journey!

      It would of been very scary for your sister and her child. Heart surgery is very serious. I hope all is well now!

      Again thanks for your comment

      Regards

      Hailey

  3. I really cannot imagine how difficult it must have been for you as a mother to hear that your son could possibly never see or walk. The news in itself is so devastating and you are a really brave person to handle it. I surely would not have been able to handle this the way you did.
    After coming to the end of the article I think Coleby was doing great and everything seemed fine and pretty normal which made me feel happy. I know it may not be as perfect as you imagine but it is still great to see him do everything on his own!

    • Thanks so much for your kind words!

      At the time it wasn’t easy to handle. I think I just got better at taking things really. And working hard to make sure I can build up his skills so he could be the boy he is today. 

      Still have a lot to work through with him but we set goals and work towards each one!

      Thanks again for visiting my site!

      Regards

      Hailey

  4. Wow! What a great story and what dedication and bravery! As a mother myself I can imagine the worry and fears you must have gone through! You are a very strong woman Hailey and indeed a Queen! Wishing you to have the continued perseverance throughout and Good luck!
    Warm hugs,
    Orion

    • Thanks so much Orion

      As a mother you would know just how important our kids are and the amount of love that you can have for a tiny person we just met is magical!

      Thanks so much for your kind words!

      Wishing you all luck and best wishes in the world too

      Regards
      Hailey

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