Day 24-29: Camp Nom Nom

So, how you been? We've been... well, MIA, I think sums it up best. I guess I left you guys hanging, huh? This is awkward after nearly a year. Frankly, I would have been fine to just let this blog fade, but I've had (several) requests to post so here we are.

Well, I'll just go ahead and start the posting up again, starting with some drafts I saved from way back when that captures the rest of Camp Nom Nom. Most of you readers probably know how we're doing now, but there's some details and pictures not seen before.

Last week of camp!

The last week of camp was surreal. After the Most Terrible Day, we cautiously went back to focusing on eating, with a slight limp. She didn't eat great during the last week, but her Pediasure drinks were still high so the calories were going up. However, she never gained more weight the last week. She better not have her Daddy's metabolism yet!

We didn't make much progress in the last 7 or so days of the program, eating-wise, but she did get much better in other areas. VitalStim sessions were much better, with the intensity increased and Olivia handled straight water without choking, just a cough or two. That's much improved from watery, red eyes! Also her occupational therapy was getting along well. She was able to roll around, tummy-down, on a yoga ball and grab stuff from the floor. When they first tried it, she didn't even want to be on the ball. She also is much better at touching food to her mouth, sometimes letting other people control it! All this sounds so elementary, but for kids with sensory issues and a weak core, these are good strides in the right direction.

Can't believe we're almost at the end of our journey. Today was a special day because the hospital had a parade for St. Patrick's Day. Since we are all cooped up in this hospital, we might as well make it fun! And the fun was quite funny! The child life specialists knew there were lots of kids who couldn't walk or needed to be pulled along, so they went a little green-happy. Gurneys were decorated to be floats (who says hospital equipment is boring!), streamers and shamrocks decorated wheelchairs, wagons were dressed up with all the bells and whistles.

 

The funniest part was definitely the parade itself. At a normal parade, children are in the crowd, eagerly awaiting candy and goodies thrown from floats, usually by adults. Well, at a place where none of the children have any desire for candy, the kids were in the parade, throwing candy out to the adults (who were all their therapists!) What other place in the world wants the kids to eat candy?

Anyways, the kids had fun and that's all that matters. At night after she sleeps, it was the only time I get to sit down and breathe. Since there was a nurse to watch her, I can also go out for a bit. My cousin and her fiance from Canada came into town for a wedding so we went out to the West End to get tacos. We also met up with my college friend, Ann, who took me to a great place, Oak Restaurant, during my first week here. Since the Canadians were looking for things to do in Dallas, AnnStar is the perfect answer. She knows a ton of places to check out, and one of the reasons we're friends, all the yummiest restaurants in town. I also got a chance to go out with relatives! My cousin Elise was in town for a training and came out to meet us up. And Shane's family came to Dallas to hang out with us! The thing is, I don't think it's really ever just been the three us of going out before and it happened. While in Dallas. We got nails done and went to eat at a delicious taco place (unfortunately, not a location in Houston). We mommies got our night out!

Our last day was both sad and thrilling. On one hand, we were ready to go home! Free from the hospital was all I could think about from Day 1. On the other hand, it's been an incredible experience, filled with amazing discoveries and new friends. Not to mention the fact that my darling baby is EATING! Who knew that in one month, she'd go from eating nothing by mouth to getting 80% of her daily required calories? She's intrigued by food and has learned ever so much, socially, physically and psychologically. On the other, we're leaving our friends, nurses and therapists who have come to really love Olivia.

For me, I was more than eager to get home. I was missing the comforts of home and starting to tire of the starkness and inconveniences of a hospital. I wanted my bed, a place to sit and chill without strangers passing by and a HOT SHOWER! However, what I have learned here is something I would never, ever have traded. I am my daughters' strongest advocate and I know that they deserve a healthy, happy childhood. In order to get that, I have to fight over other people's opposing voices, whether it's therapists, doctors, insurance companies, or even well-meaning friends and family.

One of the reasons I have stayed sane is because there are a lot of women here that are in my situation. There's a few moms that have really connected and we've made friends fast. We talk about our frustrations and our triumphs. I'm so glad for their presence and their fighting spirit. They inspire me to do better and help my flagging strength. And they are the only ones who truly understand what I go through and don't give weird looks when we carry around a backpack and tube attached to O.

Back to "real life" can be kind of scary. We no longer have therapists helping with feeding or doing OT everyday. We don't have doctors or nutritionists helping us count calories and adjusting in real time. I'm going to be responsible for keeping this protocol up and if it fails, it's on me, not my child. Well, I hope I can keep it up, but I think I'll need a lot of prayers for patience and tenacity to fight the urge for relapse. We're on the path of getting rid of the tube! Let's stay on it and never look back!