Walker is ONE

One year. 12 months. 52 weeks. 365 days. It’s a bit of a mystery how this amount of time can fly by in the blink of an eye and simultaneously feel like an eternity; how you can wish for time to pass, and then all of a sudden wish it hadn’t passed so quickly; how you can want the whole year back, but also never want to go through anything like that again.

But here we are. Our sweet Walker James Kooy turns one year old tomorrow. What a year it has been. A year filled with some moments I wish I didn’t remember so well, and many moments I wish I could remember better. A year filled with a lot of hardship, but also a lot of overcoming. A year filled with grief and joy. A year of immeasurable growth.

It is simply amazing to look back on this year and see how much Walker has grown and how far he has come. It’s also emotional and hard. This boy has been through a lot. This boy is a fighter. He has overcome huge obstacles and has somehow managed to smile through it all. What a gift he has been this last year. He has been sunshine on many rainy days. He has changed my perspective on life. He has taught me gratitude and perseverance and resiliency. He has challenged me to choose joy every single day. I will never stop thanking God for giving him to us, for protecting his life, and for continuing to do miracles in his body.

In the last month or so, Walker has made some huge leaps. He has six little teeth and puts everything he can find in his mouth. While this might seem insignificant, it feels really big to us. With everything Walker has been through medically-- his inability to swallow when he was born, a replogle tube down his throat for three months, scopes, intubation-- he developed an oral aversion. It has taken a long time for him to be able to have anything in his mouth without gagging, and now he chooses to put everything in his own mouth. It feels like a big victory.

Also in the last month, Walker’s reflux has greatly improved. We have prayed every single day for this to happen, and then all of a sudden, we saw a huge change. Walker was really struggling to gain weight-- he had been right around 15lbs since before his open-heart surgery in June. Since his reflux was so severe and his esophagus and chest were so fragile, we needed to leave the clamp on his G-tube open almost all the time. This allowed his reflux to drain out of his tube instead of it going up his esophagus and out. The problem with this however, was that he was experiencing a lot of fluid loss every day and this was likely a big factor in why he wasn’t gaining weight. After an appointment in late August with his Complex Care team, we really focused on trying to clamp his tube more and more each day to decrease his fluid losses. We were worried this would cause his reflux to get worse and hurt his esophagus. It felt like it wouldn’t be possible, to be honest. Within about a week or two though, we were able to have him clamped 24 hours a day and somehow his reflux actually seemed to get better. Now he is clamped all the time and his reflux only bothers him occasionally. I am so deeply thankful for God’s work in Walker’s body, and we continue to pray that his reflux will go away completely and not cause him any discomfort.

Walker is still fed through his J-tube for 18 hours everyday. He still gets breastmilk, which is another huge answer to prayer. Being able to pump and provide Walker with breastmilk gave me a sense of purpose over this last year-- as difficult as it was, it felt like one of the only things I could do for him. I stopped pumping in August, after 10 months of pumping multiple times every day, and have enough frozen milk stored up to last him at least a couple more months. I am so grateful for this gift. Since Walker was struggling to gain weight, we started fortifying my breastmilk with formula in the last couple of months. Between having his G-tube clamped and having his milk fortified, I am happy to report that Walker seems to be gaining weight. I don’t actually know his exact weight because we don’t have a good scale at home, but I can tell when I pick him up that he feels heavier-- the arms of a mom just know, I guess.

In addition to being fed by his J-tube, Walker has been doing a really good job learning to eat foods orally. Last week, Walker had a feeding assessment done where an occupational therapist and dietician watched him eat and listened to his swallow. The goal was to assess whether he was swallowing safely and to gain some strategies to help him continue to progress with his feeding. I am so beyond thrilled to report that the OT said Walker has a good swallow! She was very impressed with how much work we have done with his feeding and how well he is doing. Before this assessment, we had been advised to only allow Walker to try eating purees. After the assessment, we got the green light to help Walker practice taking little sips of water and to let him try tiny pieces of soft foods like fruit or cooked vegetables. In the last few days, he has tried yogurt, peanut butter, baby puffs, and mango. His favourite thing is drinking water and he gets really excited when I bring the cup to him. I am tearing up just writing this because just a few months ago this would have felt impossible. It is such a gift to watch him drink and put food his mouth. These simple things don't feel so simple to us.

As exciting as this all is, Walker still has a very long way to go before he might be able to get his nutrition by mouth rather than by his feeding tube. We are very anxious to keep him progressing because as his parents, it would bring us so much joy for him to be able to eat “normally.” It’s something we want so badly for him. But it is a long, slow process, and to be honest we just don’t know if Walker will ever be able to grow and thrive without his feeding tube. We simply have to wait and see. Right now, Walker does still gag often while trying to eat and has a lot of practicing to do before he can swallow real foods successfully. He plays around with food and goes through phases where he actually eats pretty well (a couple teaspoons of a puree), but often he doesn’t have much of an appetite for food because he simply isn’t ever hungry-- he is fed milk 18 hours a day. On top of all that, we know that Walker can handle tiny amounts of “solid” food into his tummy, but it is very possible that larger amounts of food or any liquids would cause him to struggle with his reflux again. So, for now, we will take it one step at a time. We will continue to expose him to as many tastes and textures as we can and make eating a fun and positive experience for him, with no pressure to actually consume calories. And we will keep praying that our boy will get all his food by mouth one day.

Walker has also made some huge physical leaps in the last little while. He is now able to sit confidently on his own and stand up on his legs with help. He rolls all over the house, and he is trying to learn how to crawl in his own special way. It is a joy to watch him achieve all of these milestones in his own way and in his own time. Let me tell you though, the more mobile he gets, the harder it is to have him attached to his feeding pump 18 hours a day. He constantly wraps himself all up in his tubing and pulls over his pump stand, so I spend most of my day chasing him around the house and untangling him, making sure he doesn’t pull out his tube. He’s got a little mischievous streak in him though I think, because he finds this all quite funny. Walker is still seen by his occupational and physical therapists-- who are amazing!-- a few times a month, and is working really hard to improve the strength in his core and arms, and the flexibility in his hips, legs, and ankles.

Some of you may have been wondering why Walker has been sporting a cute blue helmet these days. Since Walker spent so much time laying in a hospital bed during his first year, he developed something called plagiocephaly and brachycephaly. Quite simply, plagiocephaly is when the shape of the head is asymmetrical and brachycephaly is when the back of the head is flat. Walker’s helmet is meant to try to fix this. We are not sure exactly how long he will need it on as it depends on his growth, but likely somewhere around 6 months. He wears his helmet 23 hours a day-- we only take it off in the evening for one hour to clean it and to give him a bath. The helmet doesn’t seem to bother him at all, and I’m not going to lie, it kind of came in handy in protecting his head while he learned to sit.

In terms of daily life here at home, we have definitely settled into a routine. The days are very busy and there are always medications to give, feeds to start, supplies to wash, and littles ones to love on, but it finally feels like home is our safe place again. We recently got a nurse for Walker, and she comes once or twice a week for a few hours to take care of him. She is so great with Walker and I fee like God sent the perfect person into our life at just the right time. When Walker's occupational and physical therapists found out who his new nurse was, they were both absolutely thrilled, telling me that she does amazing work with her kids and often gets them feeding, crawling, walking-- you name it. I know these people don't walk into our lives by accident. So, during the hours that she comes, I am able to spend some quality time with the other kids, run errands, or get some things done around the house. It’s only been a short time, but it has already been a blessing and I hope it continues to be.

Walker has a bunch of appointments coming up. Next month he will go back to SickKids to see the ophthalmologist, who is keeping a close eye on his vision (see what I did there?). So far his vision is fine, but because he has a droopy right eyelid they are monitoring him to make sure that this does not change. He will also see the general surgery team at SickKids as a follow-up to his esophagus surgeries and to talk about his feeding. Since July, Walker has not needed any dilations on his esophagus and we are praying that he won’t need anymore. He has another hearing test coming up, as they continue to monitor the hearing loss in his right ear. At our last appointment there had actually been a little bit of improvement in his hearing, so we are still hopeful that the loss he has is conductive (which would mean it may not be permanent) and will continue to improve with time. In February, Walker will see his cardiologist at SickKids for a check-up. He will have another ECG and echocardiogram, and hopefully everything will continue to look good. There are always lots of appointments and phone calls, but we are thankful that as of right now there are no procedures or surgeries planned.

When I look back on this year, I feel so many things that I struggle to put into words. This year is behind us, but there is still a lot to process. I live in this place of looking at my beautiful son and feeling overwhelmed with a deep gratitude that he is here with us and has come so far, and grieving all that we missed with him and all that we’ve been through. Just yesterday I cried tears of joy as I held him in my lap and he giggled at the story I was reading, and then those tears turned sad as I wished it could have been this way from the very beginning. I have learned this year that it is okay to feel both of these things.

So here we are. The end of one year with Walker and the beginning of a new one. I thank God for the year He gave us with Walker, and pray that in the year ahead we will continue to see His goodness in Walker’s life. God was faithful yesterday, He is faithful today, and He will be faithful tomorrow. And tomorrow, we celebrate.