Tuesday, December 13, 2016

Feeding Update


No. That can't be right. She's looking at me. She knows this is too low. 

-Let's do it over again.
-We just had it calibrated.
-Well, that can't be right. We were just at GI and he weighs 37 pounds. Bud, step back on the scale; real quick.


I felt the tears. Here they come and once they start they don't stop. 

She offers to try a different scale, so Isaac puts on his shoes slowly, and deliberately because his socks have to be just right (double checked and rechecked) before he puts the shoe on and then the strap has to cross the velcro in just the right way. After a couple minutes of watching the shoe donning process I say cheerily, "Good job, Bud!" We've worked hard for this independence. Then we march down the hall to another scale. 


She gives me the, "I told you so" look. I ignore her. 

"Okay, Bud. Time to put those shoes back on!" And we walk around the corner to meet with the rest of the team. By this point tears are dripping down my face. I tell them I'm about to have a meltdown, so they should get ready because this is going to be a big one. The behavioral psychologist tells me we'll come up with a plan. I tell them that I don't want to hear another plan, and I drove two hours just so that I could sit there and have three people analyze everything I'm doing and question why my son is suddenly down almost two pounds! It's dramatic, I know. But I've worked for every single ounce this child has gained over the last five and a half years. 

Isaac has had some vomiting lately, so we're attributing the weight loss to that. Part of me refuses to believe the number on the scale.

Other than the initial upset, the appointment went well. We have some new ideas for his outpatient OT who is focusing on teaching Isaac to chew. We're also working on a plan toward more independence during his meals, and trying to figure out new ways I can threaten him, I mean, encourage him to finish his drinks on his own. During our family game night on Friday, I meant to tell Isabella it was her turn and instead said, "two drinks!" We all burst out laughing. Some days I feel like my thoughts do not go beyond telling Isaac to take two drinks. 

We're also looking ahead to summer and considering another inpatient stay to push Isaac to the next level of eating and managing food in his mouth. He has made significant progress but only eats pureed food blended to a very specific consistency. This is fabulous, and I am happy to remain in this place but I also want to keep moving Isaac forward to more age appropriate food intake. Every time we go back to The Children's Institute in Pittsburgh, he asks if we're going to get a room and walks around like he owns the place. I'm thankful he has such a positive association with the hospital and I know if we were inpatient again he would take it all in stride.

We continue to maintain The Institute's meal schedule at home. He has five meals each day. Two meals consist of his eight ounce drink and the other three consist of six ounces of puree and his eight ounce drink. He has thirty minutes to complete the meal, and we do use the iPad for motivation. If it weren't for the iPad (and of course our inpatient stay), he would still be tube fed. Isaac does not understand his own hunger though he has started to express thirst, so I think this is a good sign, and he has no inherent desire to eat. He doesn't even really care what things taste like, just that they are perfectly pureed, so you'd better believe I'm amazing with a blender!

That is all for now. If you have any questions about inpatient feeding programs or The Children's Institute and their philosophy, do not hesitate to ask.


Monday, December 5, 2016


When I put the kids to bed I turn the heat down to sixty-five, and when I wake up I turn it back up to sixty-eight. But this morning, as I was punching the numbers on the thermostat I thought, "it's by birthday, let's warm this place up", so I set it to seventy. That's just an example of how wild and crazy my life is. Don't be jealous.

On other birthdays I've made a list of important things from the past year and this has been a fairly notable year for our family, so I feel compelled to make a list of thirty-three things I don't want to forget. 

1. Isaac learned to eat. He still has the feeding tube for his medication and in case of an illness. He is on a strict feeding schedule and it can be quite trying to feed him but supposedly at school he feeds himself and doesn't need any prompting--I'm not bitter about that at all. 
2. I lived away from Walter, Isabella, and my dogs, in a hospital room for five weeks, and survived.
3. My friends are amazing and supportive, and I couldn't imagine this journey without them. 
4. I want a pack of German Shepherds. They are weirdest, most sensitive and emotional dogs (I guess that means we have a lot in common) but I love them.  
5. We have a new kitchen! This makes me love my house even more. 
6. I enjoy working on projects with Walter. 
7. I find it slightly hilarious that Isabella is a "cafeteria worker" and is 'paid' with a free lunch on Mondays. 
8. I learned how to play the guitar...and recently gave up playing the guitar. 
9. I took a surfing lesson. This was a serious boundary breaker for me. First of all, I don't like water; I don't even really like to shower. Secondly, I'm not one to go out of my comfort zone. 
10. I flew to Dallas, Texas for the second time to visit my sister and didn't spend the whole flight crying and imagining myself spiraling from the air to a messy death. 
11. I work for All Dogs Go to Kevin and get to work some amazing people. 
12. It's refreshing to have friends who don't have kids. 
13. Walter does most of the unloading and loading of the dishwasher now. 
14. I love cooking for my family, but I'm also okay with less-than-healthy quick meals on busy nights. 
15. Sometimes I buy Cheetos and hide them from Walter and then he finds them and says, "you've been eating these without me?!" 
16. I love to knit. 
17. A few years ago we started going to a church in a diverse community and it's been a wonderful experience for our whole family. 
18. I like to sit quietly. 
19. I enjoy walking through the woods alone with my dog. 
20. I like to make people laugh. 
21. I love when other people make me laugh. 
22. I don't take life too seriously. 
23. I love good coffee.
24. I take naps and don't feel guilty. 
25. I'm going to take a drawing class. 
26. Both of my kids are in school and I have more freedom than I've had in the last nine years. I'm still trying to figure out what to do with all of this freedom. But most days, it doesn't work out as I'd expect because I'm bound to get a call from the school about one thing or another. This freedom has also afforded me the opportunity to be readily available for friends in need, and this is something I appreciate being able to do. 
27. Charley has brought new life to our eleven year old Stella. This is good because I don't know what I'll do without her. 
28. I think I'm finally at peace with being a mom and a wife. I know that sounds weird, but I've often felt desperate for something more and felt like I was just waiting for the kids to be old enough for me to live my life, but I've learned that I am living my life, and I don't need a higher degree, or a special job to feel better about myself. 
29. I still want to write a book. I'm sure it will happen, but I don't think it's going to happen the way I expect it to, and I'm not in a rush. 
30. I like houseplants, and I've actually managed to keep a few alive. Particularly the one that "thrives on neglect". 
31. My book club still meets once a month and these are the women I feel safest with. 
32. Taking a liquid iron supplement and a high dose of Vitamin D is probably the best thing I could start doing for myself. It makes me feel like a different person. 
33.  Our little family of four, plus two dogs, in a relatively small house, is exactly what I want and where I want to be.