Give him the chance to thrive against all odds...How?

It’s been a blur since we came home from Holland Bloorview Rehabilitation Centre. After only one and a half weeks of being home, Mateo started to not feel well and began vomiting repeatedly. As Mateo is now dependent on several medications to keep his dystonia under control, we felt it was necessary to call the ambulance to bring him to Guelph General Hospital. It all happened so fast, the fire fighters and paramedics arrived and I had to explain to them why this was an emergency for Mateo. The narrative had always been that Mateo has a heart condition and a tracheostomy, things that everyone understands, but explaining that Mateo had an acquired brain injury and that him vomiting non-stop is an emergency for him is much harder. At first, as I explained that he has a brain injury, they began asking questions like “does he have a fever?”, “is he acting the same?”, “is he responding appropriately?”, and Mateo did not have a fever, and was acting/responding appropriately. So I had to continue explaining that the brain injury affected Mateo’s muscle movement and he now has a condition called dystonia (which they may or may not know about) and that if he misses his medications for more than a couple hours he will go into a dystonic storm (severe dystonia) and suffer withdrawal from the medications. Long story short, the doctors at Guelph General ended up transferring us via ambulance to SickKids when they realized Mateo's complex needs. At SickKids they took us to the ED and then to the Paediatric Intensive Care Unit (PICU) that same night. We had to stay at the hospital for a few days. Mateo eventually stopped vomiting, they were able to administer his medications by IV in the meantime and they ended up telling us that it was probably a stomach virus.

Being home has been hard. Before coming home, I had asked my mom to put all of Mateo’s toys into bins and store them in the garage. Why? Well, I knew that if I walked into the house and saw all of the toys that Mateo was playing with before, but couldn’t play with now, it would be emotionally too much for me to handle. So, having her remove those toys helped. Although, in the backyard is still have his brand-new wooden play-set that he got for his birthday this year, which he had just learned how to use. Also, I still find stickers all over the place - placing stickers anywhere and everywhere was one of his favourite things to do.

To give you a better picture of how he is doing; he is no longer able to walk, sit for more than an hour, stand, move his hands, reliably hold his head, or play in any of the same ways he did before. He is moving his arms and his legs a lot, but most of his movements are caused by his dystonia and are involuntary. But, he can see, hear, cry, laugh, show discomfort, show happiness, and most of all give us sooooo much love <3.

So, where do we go from here? Well, we have been referred to KidsAbility the Centre for children with special needs that offers services that Mateo needs, and to continue with the therapies that we started at Bloorview. However, it takes weeks and sometimes months to be able to access these services, so we have decided to hire a private physiotherapist to come and assess Mateo, and show us the exercises necessary to prevent Mateo from losing his range of motion in his arms, hands, legs and feet. We have also found a local paediatric chiropractor and osteopath that will be seeing Mateo on a weekly basis, to help him with his issues of reflux, constipation, posture, sleep, and overall well-being. Mateo will also be seen by the Orthotics clinic at Bloorview where he will get Ankle Foot Orthosis (AFO’s) this month, which are orthoses that are custom to Mateo’s feet, ankles, and leg to help him with stability of his feet for standing and hopefully for walking one day. We continue working hard for Mateo and we enjoy every moment that we have with him, as each new accomplishment, and each smile is truly a gift.

Kyle took 9 weeks off work, and then had to return. So, my brother Sadak stepped-up to help. Sadak arrived in Canada on October 14th from Colombia and is staying with us until the middle of December to spend time with Mateo (his godson) and help ease the workload a bit for me during the day. He has been amazing, learning all about Mateo’s dozen medications, how to change his tracheostomy, how to give him oxygen, how to feed him through his g-tube, how to load and unload all his equipment. Sadak also brought with him a positive attitude, genuine happiness, his accordion which he plays with joy, and laughter which is something that was much needed in this house. Oh boy, I am really going to miss him.

I am so grateful that he has been here in this transition home after such a difficult and unexpected turn of events. My friend asked me what I am going to do when he leaves, and I said, “I have no idea”. Taking care of Mateo before had its challenges, but now that he needs to be driven to so many appointments, needs medications every hour, and can’t move his body, everything is more challenging. You might wonder if we have nursing? The answer is…we have been allocated the maximum number of hours for nursing which for us would be 7 days a week from 10pm to 7am like it was before any of this happened. But due to the shortages of nurses, we have had maybe one or two nights of nursing per week in the past 4 weeks that we’ve been home.

After many tears, feeling so anxious about my brother leaving, and not knowing how I will manage to provide Mateo with all the he needs, we have thought hard about it and decided that we are going to fundraise for Mateo and hire a helper. This person will help take Mateo to all of his appointments, help load the stroller with his oxygen, vent, emergency equipment, take Mateo for walks, help with feeding and prepping medications, and simple things like holding Mateo and giving him cuddles while I make food, and take zoom calls from one of his many specialists.

So...HOW CAN YOU HELP? 1. We need your help spreading the word to find a helper in Guelph.

2. Share our fundraising page with people who want to give back this holiday season100% percent of the money fundraised will go towards paying for this helper https://www.gofundme.com/f/mateo-thrive-again

WHY? because Mateo deserves to get the opportunity to get the care and the therapy that he needs on a daily basis which will give him the chance to thrive against all odds.

If you know anyone interested in the position you can share my email: anita.diazri@gmail.com and they can get in contact with me for more details about the opportunity. I will keep you guys updated on Mateo’s progress. Always so much love to each of you who love us, support us and are always there for us…you know who you are!