Your donations will go to supporting our family as Celia is experiencing a lengthy hospitalization and eventual surgery. Celia has been in the hospital since February 23, and it’s looking like we may be here some time longer. Beginning with Celia coming down with a respiratory virus, to now overcoming that virus, she has developed difficulties with eating and drinking, and we are now waiting inpatient for a surgery that will help her.

Celia is an amazing 3, almost 4 year old, with a bubbly personality that brings so much light to our life. She experienced a brain injury at birth and was diagnosed with Autism at 19 months old. Celia is non-verbal and experiences developmental delays that have impacted her in all facets of her life form the way she communicates and understands us to the way she experiences the world around her. Celia has always had a unique relationship with food and drink that has culminated to her hospitalization today.

From birth, Celia always had difficulty with bottle feeding and when she was old enough to drink other liquids, she only wanted to drink water. We tried everything from diluted juices to even soda, and she refused it all. But luckily, she loved water and had always drunk more than enough. Her relationship with food has always been a little more relaxed. She had always consumed a variety of foods and we never had issues with her nutritional intake. This has all stated to change over the past few months, gradually, and more recently, extremely.

For the past few months, we have noticed Celia becoming slightly more picky with her food choices. Foods she was comfortable eating before, became more difficult for her to eat, but she was still able to exceed her nutritional needs.

On February 23rd, Celia came down with a respiratory infection, parainfluenza, and she started eating significantly less and refusing to drink water, her only safe liquid. We decided to take her to the ER because she was beginning to show signs of dehydration. Because she was refusing all liquids, they decided to admit us until she was able to drink enough water on her own. What we thought would be an easy task for Celia, who always loved her emotional support water bottle, has turned into a weeks long battle with a potential developing eating disorder.

We hoped after her recovery from the virus, she would be back to eating and drinking normally, however she is still requiring medical support, in the form of IV fluids, just to keep her hydrated. Her oral fluid intake has reduced so drastically, we consider ourselves lucky if she drinks more than a couple ounces a day. Her only safe liquid, water, is no longer a safe option in her mind, and we are out of liquids to try.

While in the hospital, we have consulted many specialists, and have come to the conclusion that her refusal of water is not a physical barrier, but a mental one. While this issue can usually be handled outpatient, Celia has shown she cannot handle the outpatient medical device usually used for nutritional difficulties, a nasal feeding tube. We unsuccessfully attempted an NG tube drop twice, and both times she was extremely uncomfortable, to the point of becoming traumatized, and she ripped out the tube herself both times despite wearing low-level restraints.

Our team decided that Celia’s sensory needs cannot handle an NG tube. Our only other option for an outpatient method of delivering hydration to her is to surgically place a g tube into her stomach. This device can be used for however long she needs it and is fully reversible when she no longer requires it.

While this option is perfect for us and ensures she will not need hospitalization for any current or future nutrition or hydration feeding difficulties, we are required to wait at least two more weeks before she is eligible for the surgery. This procedure, while necessary, is considered elective, and will be safer for her at least four weeks after the onset of her last respiratory virus, which will be March 23rd.

Due to this hospitalization, I have had to stop working, and Tara while still working, has missed some days. On the days Tara does work, she has to choose between spending a lot of money on gas traveling to the hospital after, or not seeing Celia as much as she’d like. I ran out of PTO early into the hospitalization, and this month will be receiving a paycheck that is significantly less than usual, and next month I may not receive much of a paycheck at all, depending on how long I continue needing to be off work.

We are asking for donations to help us with our current and future bills. Your support will allow me to keep taking time off work to stay with Celia in the hospital, and will help with the medical bills we have already began receiving. Any support is appreciated no matter how small.

We want to thank you for reading, and we appreciate your continued support of our family during this difficult time.