Sunday, June 12, 2011

pity party...

Every Thursday I take Isaac to Occupational Therapy. We meet with Abby, his dietitian and Mary Jo, his OT and it's usually my weekly boost to feeding Isaac. But this week after I was told he once again lost five ounces, I was mad, discouraged, and disappointed. But mostly, just sad, because this is so much work and I  know no one said it was going to be easy, but it's not supposed to be hard to feed a one year old. With Isabella I always figured she would eat when she was hungry so I didn't think very much about what and when she would eat. She just did it. And that's the way it's supposed to be.

With Isaac it involves measuring every ounce, adding extra calories (yes, you can really do that with a powder that Isabella calls "Isaac's sugar"), tricking him into eating, fighting for him to take bites, trying to get him to swallow without the pacifier...ugh, I'm sick of it.

So I had a meltdown and I promise I haven't had many because I've accepted that this is what it is and I'm just thankful there's nothing else wrong with him. So I had a pity party for myself, why won't he just grow, why can't feeding him be simple, why does this have to be so hard, why is this so time consuming...and so on.

Then I figured it might help to attack the daylights out of the weeds in my garden. It helped. I dug up and turned over the soil in between rows of beans and tomatoes. I pulled out and searched for weeds with a vengeance. But more than all of that, since I started my garden, I've found that pulling weeds is a good time for prayer. Thank you for fixing his head, thank you that all of his tests have come back normal, thank you for normal development, thank you for good doctors and good support, thank you for the weight he has gained, thank you for giving me good health so I can keep going, thank you for his smile, thank you for taking my migraine away, thank you for helping me drive home with a migraine, thank you for teaching me and giving me an open mind, thank you for helping me love kids with disabilities, thank you for letting me see the child not the problem.  


Pretty much every test Isaac's had has come back normal. The only weird things to show up, aside from the craniosynostosis, is that he has an enlarged pulmonary artery, but the valve is functioning as it should so this is not a medical concern, it's just interesting because I guess this isn't usually the case. And the ultrasound of his belly was normal aside from something going on with the "plumbing" of his right kidney. Yeah, don't ask, I don't really know what that means. Again, this has nothing to do with the current feeding, growth, and constipation issues we have going on. Because I am such a super nice mom, I've been giving Isaac cod liver oil every day for a week. And do you want to know something, other than the fact that I should be given an honorary medical degree, he's pooped every single day since I started the oil! If you want poop details, trust me, we talk about poop a lot in this house, it's just little balls at this point, but at least something is happening without a suppository and without insane doses of laxative.


We don't usually run our A/C very much. We did after all survive three summers of very hot weather in a house with no A/C. So as you can imagine, it feel quite luxurious to have central air and let me tell you, Walter is taking full advantage of it. I've been nagging him every day and telling him that we should turn the air off and yesterday I finally did it. Then we got into bed and his complaining began: "See, I haven't been this congested all week and now that the windows are open and I can't breathe...The air is killing me!" Um, now we know where Isabella's drama comes from. Just kidding, babe! So, I felt sorry for him and knew that his snoring and coughing would only cause me to lose sleep, so I closed all the windows and once again, turned on the A/C. I just hope the air stops killing him soon because I like to have the windows open.


Last night Isabella asked if she could have a cookie before dinner, obviously the answer was 'no'....
"But daddy's having a cookie before dinner."
"Well, daddy has different rules."
"Well then, can I have different rules?"

My brother and sister-in-law just had their second baby and we had the chance to see little Evelyn Rose when she was only one week old!

And a sneak peak for Sarah...I don't have all of your pictures ready yet but here are a few!

Happy Sunday!



  1. Thank you for the pictures of the girlies! Can't wait to see the rest of them ~ they're beautiful!

    I know you are discouraged by how things are going with Isaac, but I am amazed at your strength and perseverence with him, as well as with your acceptance that this is how things are now but not forever. God is healing Isaac and revealing information to you in His timing, which I know you know is perfect and makes much more sense than our own (even if it doesn't always feel that way!).

    Your conversation with Isabella was too funny ~ I'm sure Maya would love the same rule!

  2. Just remind Butch that he lived the first 19ish years of his life with no AC in a house with 50 year old carpet and a musty basement. Tell him to get over it... :o) hee hee.