Losing A Part Of Caelen

C made huge progress in his verbal skills. Picking up words at incredulous speed, often by listening and repeating after us, expanding his already impressive list of vocabulary. Surprisingly, his pronunciation is much better than Cayla's. At 19 month old, C is already speaking three/four-word sentences. Each time we turned on the kids' channel or opened up a book, he would get overly excited, rattle non-stop, naming every objects he sees.

 

That, as I always put it, is God's gift. Something which makes him a uniquely special child.

 

8 incisors and 2 molars

Early this month, C was teething again. His first molars were cutting through and he had a great time chomping on his foods (fingers! his and mine). Unfortunately, the fun was short lived.

 

On the 17th, C went for his second video-fluoroscopy and was found to have difficulties swallowing foods of various consistency. He was coughing after every mouthful of food/water he took. Despite my desperate attempts to explain this onset of coughs, doctor's advice was to stop oral feeding immediately as it increases the risk of pulmonary aspiration.

 

This news came to me not as a surprise but the sudden deterioration of his swallowing did. Fully aware of the conditions of SMA, I was mentally prepared for such a day to come. It's just that C had been eating and drinking well. The coughs were triggered the very same day at the hospital. There were little tell-tale signs that he was slowly choking to death.

As I sat outside the lab with the therapists, I fought hard to keep my pain and tears within. Though nodding in acceptance the results of the test, I was in denial. Even when C was supposed to stop oral feed, I remembered urging C to eat up his baby biscuits as he demanded for more. They had offered to intubate him but I rejected it outright and had to sign an indemnity as an SOP. Could not have felt more angry and upset, I just wanted to get out of there.

As I left the hospital and made my way home, I couldn't help but sobbed uncontrollably. The thought of denying C food and water FOREVER was too much to bear especially when he loves his food THAT much. How would a 1.5-year-old understand? It kills me that it pained him.

Caelen enjoying his 'last' decent meal

 

Upon home, I fed C his porridge and went about tubing him the same night. It wasn't easy for him and for me. The next few days that followed were heart wrenching, with C crying, mouth wide opened for food and milk. The best possible way to go about was to slowly wean him off. Giving him a taste of his milk or even water sent him smiling contentedly.

Sometimes a treat to biscuits (in tiny pieces) willed him to work extra hard for it. That is to wear his AFO while snacking. It has been hard but he is adapting. Still pains me losing a part of him to SMA. Torn, but I have to pick myself up each time something gets taken away from C. I would need to survive countless heartbreaks. This is just the first.

Nurse Alice came for home visit the other day. Said something which brought comfort and brought me back to my earlier thoughts. "Do you know that Caelen is a very special boy? Look at him move, how adorable. Enjoy your time with him."

Indeed! He is uniquely special. He is living by God's grace.
He has spent the last 19 months enjoying foods, talking, breathing, moving, growing up relatively healthy and experiencing life where few actually came this far. We should be thankful. I am.

P.S. Lastly, thank you all who occasionally dropped a message when I'm missing in action, who 'liked' and responded to my Facebook updates when I tried to stay connected. I appreciate that.