Silly Ramblings from a Crazy Momma (and what comes next for Kate)

The last four months have been a whirlwind of activity, celebration, firsts and fun. It all started in late August with Kate’s first trip to the beach for a long weekend with family. We returned home to her having her last IV chemo followed (days later) by port removal surgery. The next week, she started school for the first time and shortly thereafter celebrated her last chemo on treatment. Our families and friends flocked in to celebrate with a big No More Chemo party and we barely had time to catch our breath from that before we shipped off for the week of a lifetime at Disney World for Kate’s Make-A-Wish. We returned home to Halloween, Thanksgiving preparations and celebrations and school festivities surrounding the holidays. December has been nothing short of perfection with weekend vacations, play dates, school parties, Christmas lights, Santa visits and family. The last four months have also brought excellent blood counts, improving vision and increased strength.

I have been truly allowing myself to enjoy these last four months without the “what next” creeping up too much. I know myself too well and KNEW that right after Christmas, though, that would all come to a screeching halt. We’ve been teasing for months “man, 2016 is going to be such a let down compared to the way we’ve ended 2015!” Oh MAN…truer words have never been spoken. It’s only 12/26 and I’m already feeling the blues! It’s not just the thought of taking down the beautiful decorations or finding a place for all this new STUFF. It’s not just the idea that we need to find a way to entertain Kate for another whole week off from school or that she’s SILL coughing & snotty four weeks later.

It’s all of the daunting tasks that lie ahead that I’ve been putting off for these four months. “Let’s just let her enjoy and celebrate…we’ll worry about that in 2016.” She’s stronger but her feet still need work and she’s got to get back to see her Physical Therapist which may very well result in foot braces. I’ve got to get her to the dentist – what with her having lost 2 teeth this month, her head is going to be full of permanent teeth before she’s ever sat in a dentist chair. (To say I’m dreading this visit is about as under of an understatement as you can make.) More patching and follow up with eye doctors to try to avoid eye surgery are on the map. She needs work on strengthening her hands and things like holding a pencil correctly and holding scissors so she can cut. She can’t quite yet make it through the night without a diaper – but we need to start to train her to do just that. And the biggest and baddest of all…her eating habits and lack of variety, nutrition and willingness to try new things.

During treatment, we did ANYthing to get her to eat. Milkshakes for breakfast, lunch and dinner? Sure. Gooey, cheesy macaroni & cheese after every chemo? Absolutely. We named the consolidation phase the “I can’t believe she didn’t need a feeding tube” phase and meant that with all sincerity. After treatment ended, we just waited…waited to see if her damaged taste buds would return…waited to see how much of her diet was circumstantial and how much was learned behavior. I knew it was going to be hard to explain (after nearly 2 years) why milkshakes were a sometimes food and not an every day food to a very strong-willed 4.5 year old, but I honestly (and dumbly) believed things would just naturally improve. They have not. If she tries a new food, it’s something like a marshmallow or Milky Way. Dinner rolls and hot chocolate. I KNOW this starts with me and needs to be 1,000% reinforced by me each and every day. I’m SO worried about her going hungry – so concerned she will develop some nasty relationship with food – that I have buried my head in the sand for far, far too long. She likes fruit…some fruit. She likes yogurt and smoothies. That’s about where the healthy list ends. If it’s junk, she loves it (duh.) She hasn’t eaten chicken since July and hasn’t EVER eaten any other type of meat. She will randomly eat a green bean or a bite of sweet potatoes…once every 4 or 5 months. I’m not certain if she needs intervention by a feeding specialist or not, but I’m starting to believe so because there is no way I posses the patience required to get her through this hump. Yet, it was never my idea in life to cook a separate dinner for my kid every night that consisted of 20 things. So…there’s that.

I have no idea how to start and even though I am the queen of a project; this is a project I just don’t want to tackle. Among about 10 others that have little to nothing to do with Kate.

So, say some prayers for us in 2016…I have big goals for the winter months and need all the encouragement I can get. Happy New Year – to health, happiness and living a full life!

Leave a Reply

Your email address will not be published. Required fields are marked *