the amazing adventures of carson and kellen: Appetite

Tuesday, October 8, 2019

Appetite

Okay, so several people have asked Mom or I how Carson’s new ‘nurse’ is working out. First off, it is so incredibly thoughtful and meaningful to us that so many of you still follow along with Carson. Thank you, thank you, thank you!

Good news, we (Carson & Kellen and I) are very pleased with Ms. Reeda! The little info I’ve gotten from the boys is “that she is fun!” And they seem happy to talk with her and she is so very compassionate and seems to really enjoy being around, not only Carson, but the kids in general. So thank you for the prayers! And so far, we are off to a good start with no emergencies or hiccups at school, in regards to trach related stuff.

While I’m at it…I’m going to throw out another HUGE prayer request. Something that has always been the little elephant in the corner. Probably the single biggest stressor and frustration in our daily life. Every. Single. Day. Another one of those seemingly normal activities for most kids, that just isn’t for Carson.

EATING.

It’s hard to put into words what our meals are like and why (without experiencing it firsthand daily & being there from the beginning). There is nothing ‘NORMAL’ about Carson’s exposure to or journey with food. He started out being tube fed, every single meal. And looking back…we overfed him. My kids just aren’t big kids…not even at the 50^th percentile for weight. So he was getting overfed (although we were only doing what we thought was best at the time)… and from there we had to slowly introduce food while combating excessive vomiting, secretions, etcetera. And let me tell you, Carson has come a LONG way. But to get a kid to eat food, even take bites, that doesn’t really get what hunger/fullness is, and didn’t for the first 2 years+ of his life…is hard. It requires a lot of work, a lot of external rewards, a lot of creativity & a lot of patience. Thank you to all those that have walked the walk with us!

With all this said, Carson has now gone about 1.5 years without a tube feeding at all…that’s progress! However, with that, I have fallen into the habit of still determining how much he needs to eat, making sure he gets enough calories each day and slowly mealtimes have turned into super long productions, occasionally with Carson sitting at the table for an hour or more (eating or not eating but us waiting for him to eat.) Guys, I take full responsibility for that poor decision. That is definitely not ‘normal.’ But it is [was] me trying to make sure my kiddo gets adequate nutrition to grow & heal, etc. But, it is almost always a stressor, it cuts down on the time he should have to play and for us to spend time as a family. It is not healthy, it is not allowing Carson to take ownership of his body, it is not helpful for him to learn any hunger/fullness cues, and it is still causing me a lot of stress. I prayed a lot and felt I needed to do something different. Guys, I know I’ve tried this over and over again and have resorted to my old ways over and over again. I have just as many things to overcome as Carson. We have seen periodically that Carson really can chew/swallow fairly well and occasionally actually seems hungry (I’m talking like after a surgery day when he hasn’t had anything to eat.) Along with that, it is very obvious that Carson has a very small [limited] appetite.

It is just SO HARD for me to relinquish control, to not feel like my ability to get Carson to eat is my life purpose or where I get my worth/my daily ‘grade.’ To watch my kid [who is already very thin] NOT eat without letting my fears & emotions get the best of me, knowing that he can’t just woof down a ton of food at one time because of some actual physical limitations in chewing & swallowing large bites is HARD! Like REALLY hard!

But we can do HARD. We can do it. We need to do it.

I’m not sure what the next steps are but for now, I’m really trying to remove all my emotion from it. To let meals return to what they are meant for…to fulfill a hunger, to be family time, to be enjoyable. To encourage Carson, to let him know I’m on his side, to praise the good & allow him to have meals where he doesn’t feel like eating much. To kick up my game on healthy, calorie packed snacks and foods. To stress less and smile more. And pray that God nourishes Carson even when he isn't eating much.

Thank you all for the many, many prayers along the way! And just in case anyone is wondering, we already do a couple ‘shakes’ a day with extra calories and vitamins in them. And the reason we’ve worked so hard to get rid of the supplemental tube feedings is because in a case like Carson’s the longer he uses a tube feeding the more dependent he becomes on it. For appetite purposes, we have to let him feel hunger and since he does have some physical limitations…it is important we keep working on chewing/swallowing, etc. But with that said, we DO still have the G-button so we can always fall back on it (but oh man, that would feel like a huge failure).

We CAN do all things through Christ who gives us strength. Phillipians 4:13