Hello to all you blog followers who haven’t heard from me in well over a week. I have several posts brewing, but none of them speak to the deeper things of my heart. Busyness is drowning them out. So please allow me to just spew out the circumstances of the last week. I want to update you on everything. Hopefully later I’ll be able to discern what’s really going on in my heart.
We traveled to Chicago for Thanksgiving week. Let me rephrase that, we drove to Chicago for Thanksgiving. Although that was really the best option for us to get there and back, it also proved to be the most tiring. It was a good time of reconnecting with family and friends and I’m so glad we made the trip.
Then we came home to brand new hard wood floors throughout the whole house, except for the bedrooms. They look great and if it weren’t for Nathan and his gait trainer we will still be walking around on builder grade carpet. I’m so thankful for that upside. However, there was dust everywhere. Everywhere. I’ve been cleaning and coughing. Coughing and re-cleaning all week long. I’ve been reorganizing and trying to find the checkbook and Nathan’s immunization card and all of the things I thought I wouldn’t need for a while. Picture dirt and chaos like you have never seen before…at least at your house.
On Wednesday Nathan’s brand new shiny blue gait trainer arrived at the rehab center. He has new wheels complete with all sort of contraptions that I have yet to figure out. Like how to make him go rabbit fast or turtle slow. How to let him turn. How to force him to go straight. How to pull him. How to push him. I need more training on the trainer because right now it is more of a toy for Mac than it is a tool for Nathan. He just cries when I put him in it, lifts up his feet, and doesn’t go anywhere. We’ve got major work to do people. Major.
Aside from feeling overwhelmed about learning how to use this new contraption, it’s like my husband described when he first saw it in our home. First, I thought “Cool we have a brand new shiny walker for him.” Then, I thought “Wait there’s a brand new shiny walker in my house for my kid.” So we’re still processing this piece of equipment and the handicap placard that comes along with it.
On Thursday Nathan had a highly anticipated swallow study. He hasn’t had one since he was in the NICU and I was so anxious to see how he was swallowing. In my great hubris, I thought that he was going to pass with flying colors. I really did expect amazing things. The vital stim device that he uses during therapy allows him to take big bites from the spoon and also swallow some honey thick liquids. It has helped him tremendously. Of course we couldn’t use the vital stim device in the swallow study because it needs to be a real life picture of how well he is doing.
Aside from not having the device, It felt like the perfect set-up. my husband and I were both in the room for the procedure. Nathan was so hungry and eager to eat. His familiar and beloved feeding therapist Jessica was the one conducting the study. She was even able to schedule the fluoroscopist she wanted to do the x-rays.
In spite of our perfect arrangements, there is something so odd and unusual and imperfect about watching your child swallow a metal substance on an x-ray screen. To see his little skeleton of his head. To follow the bolus of barium and watch which way it goes down. It’s an intimate picture into what previously only God knew what was going on inside there. A subtle wave of PTSD came over me.
The last time we did this study he was a brand new month old baby just six pounds. I remember watching him struggling to suck the nipple of a bottle. Everything went down the trachea instead. He didn’t cry but I cried.
Yesterday the first bite went well. He swallowed his first spoonful of barium and it all went down his esophagus. We got all excited. The second one didn’t go so well. Some went down the right way and some went down his airway and I cried again. On the next bite some of the bolus lingered on top of his vallecular area. He can’t feel that part of his body well and therefore that is where food often gets caught, sometimes going down the esophagus and sometime the airway. We saw that repeatedly yesterday. Jessica also tried some honey thick liquid but he aspirated on that the worst.
The good news from the study is that he did well enough with the puree type of thickness that we can begin doing not just tastes, but volume at home one time per day. This is especially fun news for Nathan because the boy really desperately wants to be able to eat. He recognizes the word and sign for “eat” and starts waving his hands and vocalizing. It’s fun for us too because we like having him at our chaotic dinner table.
I don’t know how I feel about it? Disappointed of course because my expectations weren’t met. But after the study I cuddled him close and couldn’t stop telling him, “You did such a good job buddy.” It’s possible to still feel proud of him even though it was so far from what I wanted and hoped for him. I guess it’s a step towards even greater acceptance of who he is and not who I want him to be. I also know that there are upsides of the G-tube that we are not ready to let go of because it makes our lifestyle easier.
Apparently we weren’t out of the woods come Friday though. Nathan has been having breakthrough pain episodes again all weekend long. They’ve been not only agonizing for him but also for us to witness and try to help him through. Nothing seems to comfort him. We can’t figure out if it’s just his sensitivity to digesting the barium or if something else is going on. my husband is with him at the ER as I type this. Hopefully to rule out anything more serious.
It’s been some week folks. I don’t want to come home from vacation like this again. Now that I’ve spent the week preparing my home to be livable again, I need to begin preparing my heart for Christmas.
And yes, we did just get the tree up yesterday thanks to Mac’s Christmas spirit!
For to us a child is born, to us a son is given, and the government will be on his shoulders. And he will be called Wonderful Counselor, Mighty God, Everlasting Father, Prince of Peace.” – Isaiah 9:6
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!