Kaitlyn Diane was born on August 25, 2011 at 31 weeks Gestation. She was immediately taken to the NICU where she was doing AMAZING and expected to need just a few weeks to learn to eat and grow a bit. The next day our world turned upside down.
Kaity needed a nutritional supplement until she learned to eat. This supplement, called TPN, is supplied through an IV. When she was 30 hours old her nurse was changing her TPN bag. These bags are set up to run through an IV machine over a 24 hour period. Kaity's nurse set the machine up incorrectly. Her full bag of supplements ran into her tiny body in 40 minutes. It sent her body into full organ failure. It shut down everything. It caused a full cardiac arrest and she had to be resussitated. It caused a massive bleed in her brain. She had to be placed on life support.
This 'mistake' has had detrimental effects on Kaity. We were told she would not live. When she was 3 days old the EEG showed she had no brain activity. She was clinically dead. They asked us to remove life support. We refused. 3 days later another EEG started to show brain activity.... not great, but it was there!
She spent 63 days in the NICU before she was miraculously able to come home. Her discharge brain scans were not good. We were told she would have cognitive issues, behavioural issues, no speech, and likely very limited use of her limbs. She also has 'diffuse brain volume loss' and pockets/holes throughout what parts of her brain are there.
Kaity had to have a shunt placed in her brain at 6 months old. 10 days later it failed and she had to have it removed, an external drain placed, and then 5 days later a 3rd brain operation to place another shunt. We spent another month in the hospital.
As of 31 months old Kaity has made much more progress than expected, but everyday is a struggle.
She has been offically diagnosed with Spastic Quadriplegic Cerebral Palsy Level 4, Periventricular Leukomalacia, Diffuse Brain Volume Loss, VP Shunt dependent, Speech Delay, Globally developmentally delayed. She will likely never sit on her own. She will likely never walk independently and will be wheelchair dependent.
Kaity is the happiest little girl you will ever meet. She smiles even through all her therapies, and she has a LOT of them.
She loves watching her big sisters (3.5 yr old Madison and 10 yr old Sierra) playing and trying to reach for her with her left hand (her limb with the most function).
Daddy lost his job during the stay in the hospital for her brain operations, and then stayed home with her for a little while to help her recover. He has had difficulty finding a job to return to.
Mommy had to return to work when Kaity was 9 months old. Financially this was the only option :(
The family is currently struggling. Kaity's disability papers were approved at the same time as the government decided to reassess tax papers because Mommy and Daddy got married a couple months ago. Her disability payments took a long time to come in. The family is still playing catch up financially for everyday living, and trying to provide for all the equipment to enhance Kaity's development.
Donations would be used for many reasons. So far we have used funds to help Kaity with a safer carseat for her muscle tone and most recently for her Upsee Walking Device. We are now collecting for the cost of her First Pediatric Wheelchair. We will also be adapting the 'Potty' for her use, and making adaptations needed to the home.
We do not like to ask for help, so instead will say that if GOD inclines you to help financially then we would appreciate and use every penny in a way that helps Kaity. And if you are unable to help financially, Prayers (and page shares) are also graciously accepted.