Summer has been a whirlwind of fun and sun! We’ve enjoyed our warmest summer (ever on record) up here in lovely Washington, with many visits to the beach and forests.
Over the last 6 months River has had her annual pediatric check up, her annual cardiac exam, and another GI and dietician visit. She is now sitting at the 8th percentile, a slippage from recent times. And although it isn’t thrilling to see that happen, her weight is what makes that number drop, what’s a tad more important is that her linear growth is consistent, and it is. As hard as it is to not see her grow by leaps and bounds, seeing that linear bone growth staying hard on it’s chart line at least assures us that she’s staying on Her track, if not going up the other tracks.
As far as her cardiac health is concerned, we are pleased to report we will not be going back to see Dr. P for two more years!! It’s so hard to believe that we’ve been only going once a year for years now, and now down to two years!! Her visit was very uneventful, she was the most cooperative ever, the echo room almost made the parents fall asleep, and that was that! No news is good news at this place! We will see you in two years NWCHC!
Since a run of really bad colds over the winter and spring, finally when May hit and she had another cold, I decided to try adding some serious healthy additives to her blended food. We had to get her immunity stronger! And even though it coincided with the coming of the warmer weather, I can report she has been virus-free since then! I may alter my recipe some more for winter, looking for even more natural supplements to boost her immunity. So far I’m adding in turmeric root, water kefir, apple cider vinegar, ginger root, fresh lemon juice, and always either spinach or kale, black strap molasses, pumpkin seeds, chia seeds, hemp seeds and virgin coconut oil. These on top of a few other necessary foods for an all over picture of nutrition, like some quinoa, an additional protein source, and seasonal veggies. I don’t add fruit, or other foods that we know River will consume on her own. I think I’m going to start including manuka honey, echinacea and garlic as we move towards the cold season.
I had a long conversation with a really amazing mom recently. She told me about a program in Denver, and Portland, that is a feeding program for tubies. Dr. P wanted me to consider looking into this program, and I got to hear firsthand from this mom all about it. They managed to take her 100% tube feeding son to about 50% tube feeding, which is a huge accomplishment! But I was not thrilled to find out that they spent about 6 weeks in this program. I was not onboard when Dr. P was telling me about it, and I was not onboard when the mom was telling me about it. We tried so hard in the beginning, like SO HARD, so very very hard. And although we made a huge difference in her life, I have become a firm believer in River. River is the force that propels her life, and now at five there is just about nothing we can do to convince her to eat and or drink anymore than she already does. And I’m confident that when she is ready, we will all see this and know it. I am not going to any life-ripping-up programs anymore to see if we can get her off her tube a year or two sooner then she’s ready.
We are not ashamed of having a tube-fed daughter. River is not lesser than any other. She is not more. She is her wonderful self, that fought hard as a baby to get where she is now. And where she is now is where most five year olds are. Enjoying her playtime to the fullest every day. Enjoying tackling her brother, smooshing play dough together, making mud pies, running through the woods. She literally doesn’t have time for that extra bite or drink! She’s too busy! One day, when she’s a little older, she will be ready for the next step. We are following her footsteps in the sand to that day.
I have made a new piece recently, in honor of River, here is where you can view and purchase it:
And this piece was finished earlier this year, not sure if I included it before.
Peace, love, joy