As many of you know, Camilo is one of our two miracle babies. He was born at only 25.6 weeks and weighed 1 lb, 6 oz. We spent a total of 167 days in the NICU with many ups and downs before finally getting to come home as a family of four. Just so you get an idea of some of the things we went through, I would like to share the discharge comment that was included in his discharge paperwork: “25 week Twin A delivered s/p PPROM. Steroid complete and delivered secondary to decels. Baby A with multiple vertebral anomalies. Intubated and received curosurf after birth. PDA ligated DOL 3 after pulmonary hemorrhage. Infant also with imperforate anus/blind pouch and colostomy created DOL 7. Infant developed E. Coli Sepsis and renal failure s/p surgery. Requiring pressors, diuretics and 21 days of antibiotics. Proximal fistula detected on 1/3 and surgical revision of ostomy scheduled for 2/21. Staph bacteremia diagnosed and treated 2/8. Abdominal CT and Renal US at 3 months of age demonstrated absent right kidney. Camilo may best be described as having VACTERL association, but no clear genetic etiology at this time. No genetics follow up needed per Dr. Surgical revision of proximal ostomy fistula by Dr. on 2/21/24. Infant with normal length of small intestine post operatively. Feeds resumed and advanced to 28 cal EBM/Neosure/MCT oil. ACTH stim test done prior to discharge with insufficient response. Reviewed with endocrine and decision made to dc home on physiologic hydrocortisone with plans to outgrow dose and if sick stress dose hydrocortisone instructions given to parents.”

Since then, we’ve been spending most of our time in and out of hospitals for surgeries and doctor appointments. Camilo works VERY hard every single day to be able to do what other kids his age are doing. Since he has PVL (a type of brain injury), things that may seem “easy” to other kids are a little bit harder for him. As of now (he’s 18 months) he is able to crawl, and is working hard on learning to walk. He just got fitted for AFOs and a gait trainer, which we are hoping to get in the next three months. He has OT 3 times a week, PT 3 times a week, and ST twice a week. We also just signed him up for swimming lessons and have been doing everything in our power to make sure that Camilo reaches his maximum potential. After doing our research and weighing our options, we have decided to do an intensive one-week therapy program in September to try to give him an extra “push”. We are really excited since we truly believe that this is going to help him advance more than he has done so already! Unfortunately, this isn’t something that insurance will cover. The program costs a total of almost $10,000. On top of that, we will be having to stay in a hotel or Airbnb since the clinic is in Austin, TX. Driving back home every day is not an option since he will be having morning and evening therapies starting September 15th through September 19th.

Camilo is the happiest little boy I have ever met. He is living proof that miracles exist. Every doctor that we’ve visited always says that when you read his medical history, you expect to see a completely different baby. He has been proving people wrong since the day he was born, and we truly believe that he will be able to do everything and anything that he sets his mind to. Our job as parents is just to do everything in our power to be able to help and support him in reaching these goals. He is SO ready to move, and we want to do everything that we can to make him be able to do as much as possible. Lucián (his twin brother and number one therapy instructor ) is also ready to be able to run around with his bro. Any little help is greatly appreciated!

I will do my best to bring you all along on this experience and will try to post as many updates as possible.

Thank you for taking your time to read our story.