We have now been home for almost four weeks. Our monthaversary is this Friday, and we will celebrate Gavin’s many achievements since our return home.
He now has full-blown sooty eyelashes, pretty bushy brows, and has started to grow a sprinkling of hair on his head. (And oddly, on his forehead, but I’m willing to accept a little fuzz-face for the time being.) He now walks completely unaided and can easily stoop to pick things up and stand up again. We have been on two weekend trips to the family cottage and have (somehow) survived four three-hour car rides. He speaks more clearly and with more expression every day, packing new words into his vocabulary hourly. At weigh-in last week he topped the 14 kg mark for the first time. He is doing well with the oxygen he is on and has remained healthy. (Knocking furiously on wood) He has started toilet training! (That’s a whole other post.) He has started making his own platelets. We finally felt comfortable enough to take the side-rail off of his crib and converted it into a “big-boy bed.”
The one area in which he is struggling is EATING. Food, glorious food is not interesting to him at all, not in the slightest. I know, conceptually, that most of the kids who’ve gone through high-dose chemo simply have their appetite stripped from them and cannot, physically cannot force themselves to put something in their mouths. I know teens who will say I just can’t. Knowing this does not help me in that I want my child to eat. I want to feed and nourish my son, but instead have to smile through my frustration when he says no, and no and no. When we first arrived home, he still had an accelerated appetite due to the higher doses of steroids that he was on. He ate oatmeal, english muffins and cheese. He ate yoghurt and soups and bits of apple. He ate mac and cheese and carrots. Now, weeks later and on a much lower dose, he simply has no appetite and eats nothing. You must understand that when I say nothing, I do mean nothing. So far today I have not been able to convince him to put anything in his mouth.
I have been told by my AT/RT mentor, Gabriel’s Mum, that it will take a very, very long time for the appetite to return and that I must simply be patient and not overreact. I mean, we are lucky that because of Gavin’s NG tube, he gets the requisite calories and vitamins through formula, not to mention fluids. This has enabled him to not only maintain his weight, but also gain some. It is a double-edged sword though, in that he may not feel hungry because he is already full. It is hard to know, and we cannot begin the exit from the NG tube until he is off his current medication and showing proper count recovery.
So for now, when I say What would you like for breakfast? and he says sweetly, Nothing! I have to just grit my teeth and try to get a spoonful of something into him. He used to be quite solicitous of me, as far as my food consumption went, and always wanted to “help” me eat my food, but has now decided that mum eating means a halt in play-time. So I am no longer permitted to eat. Obviously, he can’t have his way on this one, so we’ve had some stern words on the topic. It is very difficult to try to enjoy your food when you have a child in your face going No mama, no eating. Mama’s food stinky. I empathize with parents whose children struggle with anorexia/bulimia. Although the root is not the same, the outcome somewhat is.
Yet another area where I must learn and practice great patience.
postscript: Gavin decided this evening to hand-feed me pistachios, just to be extra sweet.
5 responses to “Bon Appetit”
So happy to hear about your triumphant return home. Glad to hear your little guy is doing so well. Can’t begin to imagine how hard it must be that he is not eating you are simply amazing and can get through this too. Stephan and I send our love and positive energy your way. Thank you for keeping us updated!
I’m a pediatric OT and have worked with many kids on feeding. I know that Gavin’s feeding dfficulties are due to his chemo, and likely it’s just a waiting game. However, on the chance that an OT may be able to hlp you it may be worth a discussion. We also do development, play, etc, so someone might be helpful with Gavin’s amazing progress. I’ve been reading your blog, and you are all amazing couragous people. I’m glad the little guy is doing well.
It’s all good Erica – Patience of Job and all that! Whew! – You are home, life is good – he will return to his own normalcy I’m sure, soon enough. In the meantime, I’m glad that he is doing so well otherwise, – I laughed at the Stinky Food Reference. I can just imagine him saying that!
Take care – Love you!!
Maybe the food does smell “stinky” to him. Where’s that magic wand ? I’m so happy that he’s making good progress in other areas. What a journey he (and you) have been though. love and hugs.
Food is love where I’ve come from (my Lebanese Grandma made sure we all ate at least two helpings before leaving the table, wondering if we were ill if we didn’t!!!) and I’m sorry to say I’ve continued this ‘let me feed you because I love you’ vibe into my own family. I’d find this part of the process so hard. On the other hand, that Gavin is home and verbalising sounds like fantastic progress!!!!