These Days

It’s been a long time since I have given an update on how Walker is doing. I still get asked often about him, and I am so thankful that people are still thinking about and praying for him and our family.

Walker had a great summer. It was really fun seeing him play in the sand at the beach, go for boat rides, play at the park, and just be a kid. He absolutely loved any time spent outside camping and cottaging, and we were so blessed to get to experience so much of that with our family this summer. I purposely tried to avoid any appointments during July and August, pushing them all until after the summer was over, so we could make the most out of our summer days.

Appointments and specialist visits have picked up again since September, and so have viral bugs. Walker has been sick a few times since September, but I am so thrilled to say that his little body dealt quite well with everything he has had and we have been able to avoid any unplanned trips to the hospital. Illnesses are still harder on him than they are on most, but I am hopeful that his immune system will be stronger this winter than last, and that he will be able to fight off more illnesses from home.

Walker is still followed by many different departments at SickKids. He has appointments at the cardiac, GI, ophthalmology, audiology, dermatology, allergy, orthopedic, and neonatal development clinics there. So, we still make frequent trips there for scheduled appointments.

Since his last cardiac tests, Walker’s heart is doing well. He will be seen again in early March to do imaging and meet with his cardiologist to ensure everything is still looking good. We are always on the look out for any signs of issues with his circulation and oxygen levels, but so far he has been great.

Walker still depends on his GJ feeding tube, which is definitely our biggest daily medical challenge with him. Now that he is walking and climbing and rolling all over the place, it’s tricky to keep a close eye on his tube. His feeding tube has broken twice in the past few months, which requires an unplanned trip to SickKids for him to have it replaced. This is never a fun appointment for Walker, because they do this with him completely awake on a table. As he has grown, he has learned what to expect when we go to certain clinics, and he gets very upset. One of the hardest things as his mom is definitely having to hold him and force him to go through these medical procedures when he is so scared and upset.

Overall, though, Walker has been making great gains in his oral feeding. Slowly but surely, we have been able to wean down the amount of calories he is receiving through his feeding tube. Walker has always been fed through his J-tube, which means he has been fed past his stomach and directly into his small intestines. This was for a number of reasons, including the fact that he wasn’t able to eat orally or swallow for almost the first five months of his life, and because he has very bad reflux and slow gut motility. He has had to work very hard since his esophageal repair surgery to learn how to swallow food and for his gut to learn how to digest it. He still requires two different medications multiple times a day in order to help with these issues.

But he has been doing great, and as a result we have been able to very slowly wean down his J-tube feeds and start trying G-tube feeds. This means that the formula we put in through his tube actually goes to his stomach (G), rather than his small intestines (J). If Walker continues to do well, we should be able to eliminate his J-tube feeds in the next few weeks, and only do G-tube feeds in addition to his oral eating.

Walker’s weight is watched very closely by a dietician that comes to our house multiple times a month to weigh him. If he is able to maintain his weight and his slow but steady growth, then we can continue without his J-tube feeds. Our feeding schedule for him without J-tube feeds would consist of offering him three regular meals a day and snacks (just like his siblings!), and then supplementing his meals with formula feeds through his G-tube.

Right now, we give Walker formula four times a day through his G-tube, using a large syringe to slowly push it in. He also still gets a small amount of formula through his J-tube overnight while he is sleeping. We are hopeful his overnight J-tube feeds will be done in the next couple of weeks, and that he will be able to maintain his weight without them. This would be a huge step for him, and would make things a lot easier and safer. A J-tube is a foreign object sitting in the small intestines. Over time it can cause scar tissue and damage, and last winter it resulted in two hospital admissions for Walker to deal with complications from it. Also, any time his J-tube breaks or pulls out, it needs to be replaced by surgeons at SickKids. The sooner the J-portion of his feeding tube can be removed, the better for him (and us)! G-tubes are much less invasive, and can be replaced at home by a caregiver when they break or pull out. We would feel so much less stress on a daily basis if he no longer had to have his J-tube in. We are hopeful this will be soon!

As some of you might remember, Walker has had hearing loss in his right ear since having his hearing test done as an infant. This is something that has been closely monitored by an audiologist since he was born, with tests done every 3 months. When Walker had an MRI done this past June (which was actually for his brain and spine), they happened to notice that he has quite a lot of fluid in his right ear canal. We were referred to an ENT (Ear, Nose, Throat) specialist at SickKids to look into this. The ENT doctor we saw believes that Walker’s hearing loss may be (at least partially) caused by the fluid that is in his ear. As a result, Walker will actually be going tomorrow-- Monday, December 4-- for a small surgery to have a tube placed in his ear to drain the fluid. While he is under the anesthesia, they will also do a thorough hearing test, as this is something they have had a very hard time doing because of Walker’s resistance to the testing while he is awake. This ear tube will remain in for anywhere from six months to a couple of years, depending on when it comes out naturally. The hope is that once the fluid drains, Walker’s hearing loss will improve. If it does not, we can look further into what might be causing the loss. We are really hopeful, though, that draining the fluid from his ear will help improve the hearing in his right ear.

In addition to the specialists Walker sees at SickKids, he is also still followed by the Complex Care Team at our local hospital. This has been such a gift to us, as there are a paediatrician and nurse practitioner who know Walker well and are able to help us with day-to-day issues that arise as we care for him.

Walker also still wears his AFO’s (leg braces), so he sees an orthotist, too. As a result of spending his first six months in the hospital, Walker has stiffness and low muscle tone in his legs and feet, and therefore he struggles to stand fully upright and his feet are flat and fall inwards as he stands and walks. These issues are things his physical therapist has worked on with him for the past year and a half. His AFO’s are meant to help fix these problems. The hope is that the AFO’s correct his stance and hold everything in proper placement as his bones and muscles grow. Walker just saw his orthotist this past week, and he was impressed with the improvement he sees in Walker’s stability already. He was hopeful that in six months time, Walker will be able to move down to shorter braces (called SMO’s), and then eventually hopefully not need the braces anymore at all.

Walker also has an occupational therapist, a physical therapist, and a speech language pathologist who all come to our house to work with him a couple of times per month. We are also still very blessed to have a home nurse that cares for Walker two days a week, for eight hours each day. This nurse loves him so dearly, and has been such a blessing to him and our whole family. Walker has developed in so many ways as a result of the special care she gives to him. She plays with him, takes him outside and to the park, completes his physical and occupational therapy exercises with him, feeds him, bathes him, and administers all of his medications and G-tube feeds on the days that she is with him. It is such a gift to me, as it gives me a little break from caregiving and allows me to spend one-on-one time with Easton (while Jordynn is at school), or get things accomplished that I would normally not have the time for.

Overall, Walker has been making gains in so many areas of his development, and we are so thankful for the amazing care he continues to receive from many doctors, nurses, and therapists. It has been a joy to watch him accomplish so many milestones in his own time and way. Every little step forward is a victory for him and us! We thank and praise God every day for the amazing things he has done in Walker's life, and for the faithfulness he continues to show our family.

If you would like to continue to pray for Walker, we would appreciate that so much. Please pray…

That his appetite will increase and he will take more and more calories by mouth.

That he will continue to take steps forward towards eating fully by mouth and not needing his feeding tube anymore.

That he will be able to maintain his weight once we stop his J-tube feeds in a couple of weeks, and that from there we will slowly be able to wean down his G-tube feeds as well.

That he will slowly grow out of his issues with reflux and slow motility, so that he won’t require daily medications for these things anymore.

That his heart continues to be strong and work well.

That he is protected from any severe illnesses this winter and is able to stay out of the hospital.

That his ear tube surgery will go smoothly tomorrow and he will recover quickly with no complications, and that his hearing will improve as a result of this surgery. His surgery is scheduled for 11:00am.

Thank you! <3