Rylee's Heroes

Our great-niece Rylee has had a tough start of her precious little life, but she is definitely a strong little one.  Emily and Robert are doing a great job handling everything thrown their way, but I'm sure they can use your help with mounting expenses.  Please reach out if you can.  Here is some background on the sweet little one:

Welllllll our long awaited GI appointment did not go as expected  we were told that Rylee’s case is too complex and some scary ideas were thrown around like the possibility of a feeding tube and more surgery  We have now been referred to the Aerodigestive team of doctors at Lurie Children’s downtown and thankfully they are able to see us next week. 

We are doing our best to keep our hope and heads up high, that there is an easier alternative to help keep our sweet girl healthy and that this team of doctors will have the answers and solutions to all of our problems. 

We also met with her pulmonologist this week to discuss Rylee’s severe sleep apnea diagnosis and figure out our next steps. (Big thank you to grandpa for all of the help) She has prescribed Rylee an inhaler and steroids to see if it touches Rylee’s chronic cough and wheezing, or if they are due to constant airway irritation due to her severe reflux. She said results of her sleep study would typically indicate Rylee would need another Supraglottoplasty surgery to open her airway more, but she is hopefully that we will outgrow her sleep apnea on her own in the next two months without anymore surgical intervention

We will also have to start physical therapy in the next few weeks after a Torticollis diagnosis from her pediatrician, but that is nothing after everything else we have been through 

Nobody is ever prepared to have a sick, high medical needs child, and nobody warns you how hard, exhausting, heartbreaking, anxiety filled, and lonely everyday could be, but just when I think my cup is empty and I’m feeling so helpless and defeated I look down and see my happy, smiley, giggly little girl and she fills my cup right back up and all is good in the world, this girl is truly my strength and I can’t wait to see all the mountains she will move.
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