Give Back this Holiday Season…here’s my reason why

 
Thank you for letting me tell our story of how your support can make a difference to families like ours. I’m not only the PTPA Social Media Coordinator, I’m a very proud (and exhausted) wife and mommy to 3 amazing boys…Ty is 7 and Jayden and Zack are 3 years old. Our Zackie was born with a genetic disorder causing many serious health and developmental issues including; a congenital heart defect (TAPVD) and blocked pulmonary vein, seizures, global developmental delay, facial anomalies, hydrocephalus (fluid and a cyst in his brain), low muscle tone, reflux, bilateral moderate to severe hearing loss (requiring hearing aids), feeding issues (including not being able to drink any liquids), and the need for a Gtube (stomach feeding tube) to name a few.

We were told our son would likely not walk. We were told our son might not be able to do what his twin brother could do. We were told our son might not ever eat without tubes. We were told our son might not speak. We were told our son might not survive. We don’t believe everything we hear…but we DO believe in miracles. The night Zack was born; a heart defect was detected at our local hospital and that night, while I lay with our other newborn son, he was rushed down to the SickKids Cardiac Critical Care Unit where the doctors resuscitated him twice while my husband held his hand and the nurses held my husband. The nurses and doctors in the UNIT became family, friends and Zack’s biggest cheerleaders. We asked a thousand questions a day…and they still asked if we had any more. We hadn’t held our son since birth, so the nurses removed some tubes and brought us a rocking chair so we could share in a normal moment with our little fighter. They wrapped him in his own blankets from home, taped up photos of his brothers and turned on music for him to listen to. The desk clerks watched Jayden sleeping in his car seat, so my husband and I could visit with doctors during rounds and had time together with Zack. The nurses took our calls at all hours of the night to check on Zack’s progress and to see if he opened his eyes for them. From social workers to desk assistants to parking lot attendants- we were cared for during the toughest time in our lives. We became members of a new club- the red badge holders- parents whose children are lucky enough to be cared for at Sick Kids. When Zack was two weeks old, he was too sick to wait for heart surgery and our prayers were answered when the world renowned surgeon Dr. Glen Van Ardell was chosen to perform his life-threatening procedure. We shared a few last moments with Zack and then we trusted him into the arms of the SickKids nurse and into the hands of the brilliant surgeons. Your donations have allowed those surgeons the resources that they needed to create innovative and cutting edge procedures that save lives. Your donations helped to save our son. The following days were scary and full of the ups and downs that any parents feels when they have a child fighting for their life. Zack’s heart was too swollen to be sutured closed in his chest, so his newly repaired beating heart was exposed for us to actually see the miracle that happened within the walls of SickKids.

Zack got stronger and stronger each day and he finally graduated to the Labatt Heart Centre on the 4th floor. We had a private room, a phone for family and friends to call and check on us, access to a fridge to keep us eating so we could keep up our strength and a bed where we could sleep in the room with our littlest boy. The best part of this graduation was that Zack could have visitors! His oldest brother got to meet him for the first time in our room and when we closed the door, we forgot about the tubes, wires and beeping machines- instead, we picked a movie that was donated to the floor, ordered a pizza and had our first family movie night with all of our sons together. That was a magical moment made possible by the Hospital for Sick Children. They understand the importance of family time and provide what is needed for families to allow us a little bit of normalcy in an otherwise crazy situation.

Our son was not safe eating formula from a bottle. Our son’s fingers were so bent, we weren’t sure how he would ever function with them. Our son started to have seizures. Our son had no muscle tone and we considered a future of wheelchairs and walkers. Our son still had no diagnosis. We are so lucky to have all of the resources available to us at SickKids. We have been to most clinics in the hospital to get help for Zack. Imagine having to go from hospital to hospital or to several different clinics to get the help your child desperately needs? With the help of donors like you, SickKids can provide all the services that a medically fragile child would need…under one amazingly caring roof! Occupational Therapists visited Zack and assessed his fingers giving us much needed stretching exercises so that Zack can now colour with his brothers. The sibling Play Park is a great distraction for our other sons, who love to come and be part of a day spent with Zack at the hospital. Physiotherapists assessed Zack for rolling over, practised with him for an hour….the next day, he rolled on his own! The Cardiac Clinic and their nurses know how sensitive Zack is to being touched…their gentle nature puts him at ease. Feeding specialists have determined that Zack is not safe swallowing liquids. Their video xray has shown that Zack needs to eat purees and thickened liquids only. Zack loves to play with the toys in the Eye clinic, where they check behind his eyes for fluid pressure in his brain. Bloodwork is not fun, but his brothers love the stickers that they get when Zack comes home. We visited Plastics to remove the large skin tags that were right beside Zack’s ears and now he looks even more adorable than ever! The MRI, IGT and Cardiac Cath Lab allow Elmo DVDs to be shown in the recovery room, when Zack wakes up from any general anaesthetic. Zack had tubes placed in his ears by the team in the Ear Nose and Throat clinic and they follow him to make sure his hearing aids let him hear the world around him.

The Gastro intestinal clinic has followed Zack’s weight since birth and have taken him from “failure to thrive” to a healthy little boy in the 10th percentile for weight with a new fabulous Gtube!

Dentistry is helping to teach Zack and me how to care for his teeth, when it’s challenging because he hates anyone touching his mouth. Neurosurgery has diagnosed a new concern, but are watching our precious son and being cautious before they intervene surgically. Genetics used a brand new microarray test, previously only available in the U.S., to discover that Zack had a deletion on Chromosome 12- This is the only explanation for why Zack has his health issues. It is also the first deletion of its kind ever reported and will now be documented so that other parents might learn more from this genetic discovery at SickKids. We still don’t have many answers about Zack….in fact we have more questions…but

We do have a son whose smile lights up any room! We have heard our little boy say “mama” and “dada” We do see him fight for toys and wrestle with his brothers We do see him feed himself his favourite vanilla pudding with a spoon We do hear him hum the Elmo song to watch his favourite character on tv.

And this past weekend….after lots of work, dedication and a lot of love, we even got to see Zack walk for the first time…and now we truly know that the sky’s the limit for our amazingly brave son!

WE DEFINITELY BELIEVE IN MIRACLES

SICKKIDS BELIEVES IN MIRACLES

Thank you for helping to make more miracles happen!

 

Click here to find creative ways to give gifts that give back.

 

Comment with your plans for holiday giving and it will be included in my next post!

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