Cody's Journey with CVID

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Cody's Journey with CVID Cody is our little superhero who has been battling since the day he was born. Follow his journey with an incurable Primary Immune Disease.

Cody was born 4 weeks preterm in Oct 2009 with Congenital Pneumonia & Respiratory Distress. He spent 1 week in the neonatal intensive care unit at King Edward Memorial Hospital, Perth. Following this stay he was frequently admitted to hospital with reoccurring viral & bacterial infections, with a repeat of pneumonia at 6 months of age and 1 year. At the age of 2 he was seen by Respiratory at Princess Margaret Hospital who did investigative testing, as it's not common for children to have such severe and frequent infections. After years and years of testing & hospital admissions & procedures, he was officially diagnosed in March 2014. Common Variable Immune Deficiency was the official diagnosis. It affects approx 1:66,000 australians and there is no cure. Having a primary immune deficiency basically means the immune system doesn't work, it doesn't produce antibodies to fight off infections. Cody began a treatment called Immunoglobulin replacement therapy, this is a blood product made from healthy donated plasma. This gives Cody an immune system that his body can't produce on it's own. Every 4 weeks, we are in hospital receiving this via IV. Cody also suffers from many other conditions
Bronchiectasis: Permanent lung damage from repeated infections
Mannose Binding Lectin Deficiency
Vitamin D Deficiency
Asthma

He sees multiple specialists: Psychology, Immunologist, Respiratory specialist, ENT, Speech Therapy & Occupational Therapy.

13/04/2019

It has been a long time since I've updated this page.
Our life has gone on a little journey since September 2016.

Cody is now in Year 4 and will be turning 10 this year. He has been off treatment just over 2 years now.
His last hospital admission was years ago.

His own immune system finally kicked in and he is producing immunoglobulins on its own.
Something we prayed and hoped would happen for him.

We still see respiratory for his asthma and he is on allergy desensitization injections. All is well.

His younger brother will be 3 in august and thankfully has no immune disease.

I hope all our followers are well and health is in abudance 💖

28/10/2016

Today we pushed Cody's infusion out to 6 weeks.
Along with his team we have decided to stop treatment.
The past year has seen huge improvements with almost no hospital admissions, the highest immunoglobulin levels since birth and symptomatically he has been really well.

This decision never comes lightly as in the past each time we have stopped it has lead to multiple admissions with severe infections.
We are positive this won't be the case.

If all goes well he will have bloods done in January which should show accurately what his own immune system is doing.

We pray each day that Cody will grow out of this and hopefully we are coming to that stage in his life.
We would give anything to have a future with no immune deficiency ⭐️

07/09/2016

We have been super busy! Since codys last infusion we have been in to see immunology and respiratory for appointments
Lots to update on so I will do this over the coming days!
Life with a new baby and Cody has been very busy!

Cody is off for his infusion today! Daddy is taking one for the team today as codys little brother needs mummy and is to...
18/08/2016

Cody is off for his infusion today!
Daddy is taking one for the team today as codys little brother needs mummy and is too little to go to the hospital

Hoping all goes well for him today!

21/07/2016

Tomorrow is infusion day! Officially Cody's last infusion before his baby brother enters the world (unless he decides to make his appearance tonight)

We are hoping dr matt is back and able to do his cannulation. Fingers crossed

28/06/2016

Unfortunately Cody has come down with a virus :( He must have caught it just before his infusion. We are hoping with the top up he can fight it before it turns into an infection.
Fingers and toes crossed we can get away with no admission for this one.

Infusion day
24/06/2016

Infusion day

Infusion day
We had a new dr as dr matt is away on holiday 😪
Unfortunately it didn't go as smoothly as other times
3 cannulation attempts and occlusions
Lately we have been getting out just before lunch but today we will be here well into the afternoon

Infusion day We had a new dr as dr matt is away on holiday 😪Unfortunately it didn't go as smoothly as other times 3 cann...
24/06/2016

Infusion day
We had a new dr as dr matt is away on holiday 😪
Unfortunately it didn't go as smoothly as other times
3 cannulation attempts and occlusions
Lately we have been getting out just before lunch but today we will be here well into the afternoon

Thanks to dr matt again for saving the day 👍🏼First cannula wasn't successful in the hand and Cody was in a lot of painOn...
27/05/2016

Thanks to dr matt again for saving the day 👍🏼
First cannula wasn't successful in the hand and Cody was in a lot of pain
On dr matts advice we decided to try a vein in the wrist, apparently this is very painful.
It wasn't nice to watch 😪
But it went in and the infusion is now running

Cody is so brave 💪🏼

12/05/2016

Things are pretty quiet on our end! Cody's daddy flew back to work today and cody has been enjoying swimming, spending time with his daddy and going to school.

We received the results of his bronchoscopy and everything looks good, no active infection. So, we are to continue as normal.

Next IVIG is booked in for the 27th May!

We have escaped! Quickest infusion ever We have pushed it at a quicker rate with no side effects as of yet Looking forwa...
29/04/2016

We have escaped!
Quickest infusion ever
We have pushed it at a quicker rate with no side effects as of yet
Looking forward to a relaxing afternoon at home

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