My Boy, Oliver

Our little guy has had a difficult few weeks full of many changes. He started fifth grade a few weeks ago. He attends the same school with the same teacher, but his classroom is now on the first floor. I like this so much better. He is closer to all of his specials and we don't have to worry about the elevator anymore. Plus I think the new space is good for him. He likes his routine, but he needed a change.

We also started sending him to school with his wheelchair. He was crying by the end of the day and I think a lot of it had to do with being fatigued. It warms my heart to see him happily sitting in his chair chewing his tube each afternoon. His teachers are great about not keeping him in his chair, but using it when he needs it. This means Matt and I had to switch vans...again. Since Oliver's chair is being used daily, the ramp of our wheelchair van is much more convenient and easier on my back.

This leads to Ollie's next big change which he now sits in the front seat. Our wheelchair van has the most uncomfortable back seats and they simply do not offer him the positioning support he needs. We aren't ready to have him ride in his wheelchair, so we gave the front seat a go. He is well supported and seems to enjoy the new view. Plus I love being able to hold his hand more easily.

His final change involves food. The thing that brings him his greatest joy. After months of dietary changes and seeing the signs, our SLP who specializes in feeding issues, gave us the news that it was time to switch him to enteral nutrition. Our goal is to keep his lungs healthy and currently he is silently aspirating as he eats. His swallow has deteriorated to the point of it being unsafe to feed him orally. So I frantically got the supplies together, filled out all of the necessary forms for the school and we started a new chapter.

Oliver is tolerating the change fairly well. We are able to offer him pleasure feeds still, so after I hook up the g-tube pump, I can give him small bites of yogurt or smoothie or fruit. I went to the baby aisle and picked up some meltable treats, so he can pick up a few puffs to eat. His body is handling the change well. He still wanders to the table confused as to why things have changed. We have yet to take him to a restaurant or eat in front of him, for fear he it will upset him.

We have been through this before. We are comfortable with the process. I can change a g-tube without looking now. Prepping the pump is second nature. I have been taken back to my time caring for Waverly. The beep of the feeding pump is associated with her. It is more painful this go around. I know what lies ahead. I know that over time his rate will decrease. We will lessen the volume of food he requires because he isn't as active as he once was. In time those pleasure feeds will be too risky and he won't want to share a bite of ice cream.

It's too soon. I'm not ready.




Comments

Sharon Hicks said…
Handsome, beautiful boy. ❤️
Debi said…
Peace please be with your family as you go through these changes. XOXO
Anonymous said…
I love the picture of Oliver in the front seat, with his legs crossed. So big and handsome. NM
Elise said…
Big transitions are hard, and stopping something that is such a huge source of pleasure is heartbreaking. Glad you can continue to provide him treats. A question that I hope you won't mind answering. I've noticed that both your kids often have their legs crossed in pictures. I'm curious if this is a natural inclination to sit this way, or if you have positioned them that way.
Shannon said…
Elise, they are both naturally disposed to sitting this way. We believe it is a way to remove some pressure/pain from their hips. We use lateral supports and straps at times to keep them in a straight position, but often we allow the kids to just sit comfortably.
Elise said…
That makes a lot of sense, thanks for sharing.
Anonymous said…
I'm still here following along and saying prayers for all of you. Your boy is blessed to have amazing parents in his life who love and care for him deeply.

JoEllen from Ohio

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