Friday, 8 November 2013

Lexie's Story...

Hi Everyone
 
My Name is Lexie Kruger. Sadly, I am dying a slow, painful death as I have Krabbes Disease. 


Unfortunately there is no cure for it.


I was born I month premature on 09 June 2013, but I was a healthy and happy baby. 

3 months later my mom had to start working and I went to day care. I was doing so well -  lifting my head and grabbing my toys, cooing/talking to my dog and cat. Most of all - laughing with Mom and Dad!













Then one day it all stopped.  My body started arching and aching, I could no longer lift my head and I began to cry all the time from the pain.
My parents then took me to hospital and after lots of tests they initially diagnosed me with Chronic Acid Reflux. After the MRI, I was diagnosed with Krabbe Disease.

All can I do now is lie there and try to sleep and allow the disease to take its course.













I can see the pain in my mom and dad’s eyes when they cannot hold, console or lift me because I am in so much pain...
Please can you help my Mom and Dad?







                                          video


Below are a few of the symptoms Lexie has and symptoms still to come:
  • Feeding difficulties
  • Difficulty in breathing
  • Fevers
  • Vomiting
  • Extreme irritability
  • Changes in muscle tone (limb and muscle stiffness, poor coordination of movements)
  • Seizures
  • Progressive loss of hearing and sight
  • Spasticity (presence of spasms or consistently contracted muscles)
  • Loss of developmental milestones
  • Unexplained crying
  • Loss of head control
Lexie is already forced to experience the symptoms highlighted in red. 
Lexie is deteriorating fast and in most cases babies with Lexie’s condition do not see their 2nd Birthday.
She will eventually need to be fed via a tube, will need a machine to help her breathe and her organs will start failing and will begin to require 24/7 care.
Thank you so much for taking the time in reading about this Precious Baby Girl of ours.

For more information on this devastating illness please go to: Krabbes Disease.


Donations towards Lexie's medical costs can be made via:


Lexie Kruger
ABSA Bank
Mega U Savings Account
Acc no:9289054524
Branch code : 632005




Update on Lexie  and how she is doing.




22 October 2013
Baby booked into hospital and tests done.
Over all she is healthy wait 5.5kg.

23 October 2013
Baby was diagnosed with severe acid reflux, started treatment immediately and was responding very good to new milk and reflux medicine.

25 October 2013
Baby diagnosed with Krabbe`s disease by means of M R I scan , when we got to the hospital baby was discharged
with case full of medicine.

29 October 2013
Went for a scheduled follow up at pediatrician where he increased the pain meds , yet baby still
picking up wight and doing fine.

05 November 2013
Went to hospital  to have blood drawn from Lexie to be sent to the U K For tests to confirm all doctors
findings, more or less give us a time frame and let us know how far she is at this stage.
The tests take 3 weeks to get the results.
I drove it through to the Red Cross and handed it over.

15 November 2013
We went to appointment with neurologist and pediatrician to have a look at Lexie and how she is doing,
the symptoms of the disease are clearly taking effect as she has no longer arms and leg control, no control in the neck and movement in the head and she is blind.

But on the plus side she weighs 5.9 KG she started eating solids and she is teething (my baby girl is getting teeth).

19 November 2013
Till date we await the test results and have bought a new pram for Lexie with some of the Contributions we received the pram is awesome and she can lay flat and look at us and it is very comfortable so we can take her and take a strole .



Also a thank you very much to a Shane and Richard who gave us a head,neck and back brace we strap on to Lexie to make travel possible with out having to worry her head and neck might get hurt .








25 November 2013
Lexie was admitted to hospital again.
Trouble feeding when she drinks milk she chokes and stops breathing.
We took her to see the pediatrician and after admitting her suggested an operation to install a plug in the side of her tummy to feed her with a syringe via this little plug.
The risk of infection is high so we very afraid for this until I went and red through the little journal the dear friend, Laetitia Flawn keeps for us when looking after Lexie making notes of all her feeding, temp, what is in the nappy to how long she sleeps and how much she eats. I gave this to the doctors to read and they were impressed as we already started Lexie on solids so they changed her diet still the milk but with added thickener so all her food and medicines we feed her with a spoon witch is better than having a plug to inject the food ( this unfortunately will have to happen at a later stage ).

27 November 2013
We got the test results back from the UK and the test can not tell us how far Lexie is with the Krabbe disease and give us a time frame but have definitely confirmed that it is Krabbe or White brain matter disease.

17 December 2013

Lexie doing ok on new diet , she still has her off days some good and relaxed and other again not so good , but we keeping her comfortable and happy as best we can.

23 December 2013

Lexie had her first sit on Christmas father`s lap and made a lot of wishes and told him a story or two


And then came the gifts


4 January 2014

Lexie was rushed to the hospital , she had a seizure and started to breathe very difficult.
She was given same meds as they would people with epilepsy , a shock treatment to have the meds work faster and then she stopped breathing, they put her on oxygen and not long she stopped again.
she was taken to the high care unit at the hospital and a nurse is by her bedside 24/7 .
with the help of oxygen and pressured air she was breathing ok but not 100% by her self.

Over the next couple of days blood tests was done to determine the  medicine levels in her blood to make shore the correct dosage is given and that it is working, on top of the seizure med she still needs meds for pain , muscle relaxers and the severe acid reflux.

She is fed via a tube through the nose into her stomach but her reflux is still a problem.
The doctors since  replaced the tube with a new one deeper to go through the stomach into the intestine and that way stop the reflux.




Baby has good days and bad days and we learned by the speech therapist baby will not be able to be fed by a spoon orally any more as her nurturance and protein intake will not be enough, so on Wednesday the 22 January 2014 baby will be taken via a ambulance to a different hospital for an operation where they will put in a little peg to have a machine slowly feed her.

 22 January 2014

Baby went in for the operation to install the peg tube and to have the stomach turned to stop the reflux, the professor who did the operation was very happy and baby is making a good recovery .
3days later we were moved back to our hospital where Lexie can stay till she strong enough to go home.

1 February 2014

Baby was released from hospital and now we can go home again and start settling down again. The feeding was done by mixing the milk and then poured into the biggest syringe there is and then held up in the air so the milk can run in by itself. Baby is now still on strong pain meds, mussel relaxers ,seizure meds and vitamins .

8 February 2014

Baby was rushed back to the hospital again as she started choking badly and then her breathing was also impaired. The doctors tested her twice with EEG scan to determine ho far the seizures has progressed but still in such short time so much went wrong . baby is no given 2 types of seizure meds and was sent home with a list of machines we need to get to help with baby.

25 February 2014

Baby is at home and I can tell you it is the best feeling ever. She has to be monitored 24/7
he has a suction machine to get rid of the saliva build up in her mouth as she does not swallow any more, Sat's monitor  to monitor her pulse and oxygen intake, she is permanently on 1/2 L oxygen witch a machine makes, she has a pump attached to a pole next to her bed witch the milk is pumped into her stomach, apnea machine to make sure she is breathing .
  



7 March 2014

Baby at home she doing great and one thing Bronwen is the best mom any child can ask for , she has not left baby`s bedside once she is there in the day and night is a monitor go`s of she is up and working .we have authorization for nurse to help us at home during the day but it is difficult to find qualified nurse to do home based care and on infants , but we will find some one and in the process of sorting it out it just takes a long time.

11 March 2014
 
Baby rushed back into the hospital due to the fact that she stops breathing and turns blue in the face.
it was a terrifying site for my wife and I to experience this but baby came back to us breathing and looking as stunning as always, the next couple days was just as difficult and again with the stopping of the breathing and doctors and nurses taking up to 35min to get Lexie to breathe again.
But she comes back fighting not giving up and making shore everyone knows who Lexie is.
 
20 March 2014 
  
Lexie fought and gave her best, but she was weak and tired and at 11:00 Thursday morning  she went to sleep.
 
 
Born 09 June 2013 -- 20 March 2014
She will forever be loved and remembered
Lexie  
 
 


There are people we would like to send out special thanks to for donations, friends, family and colleagues:


Natalie, Mike Brauer and family
Servochem
Kobus Kruger and Angel Hearts
Hein Visagie en Familie
Bill en Cathey Gultig
Donald Cammould
Rod Lowe Advanced Polymers
Pick 'n Pay - Kenilworth
Irma en Giel Botha
Raymond Stebbing and the Defence Force Freshwater Fishing Club
Pieter Smith (Boerie) and Family
Shelly and Johan Van Eck
Investec
Antonella Werth
Kaiser Lee
Blessings from Above
Rosy and Espin Larsen
L Uys
Heyns
Tassie
Theo Sauls
Janet Ristic Lowe
Burke family
Nivalda Fernandes
Hospice (Iris House)
Debra Sowter
Sue Van Der Linde
Roger ( Neibourhood watch )
Roslyn Jason Children
Katherine , Lionel Megaw
Colin Grindlay
Sally Ackerman
Nursing staff of Blouberg netcare
Bertie & Sarah ( Yorkshire Grove)
Julie Huckle

This is also a very special thank you to those who made contributions to Lexie but remain anonymous or whose details I do not have.

To Nick who made this blog possible and to all the friends and family who are helping to manage all this in this very difficult time.