Tuesday, December 23, 2008
Happy Holidays to all! I know I am Jewish, the boys are Jewish, so please forgive the above pic, I am just a total sucker for a boy in a Santa hat. (Ask Matt!) and I haven't had time to upload Hanukkah pics yet. So from our little slice of interfaith Wonderland...
We have had an uneventful few weeks but somehow it still feels difficult to find time to blog. Sam starred as Matthias Maccabee in the JCC Hanukkah movie and we enjoyed watching him. I am going to purchase the DVD and try to put a link to it here. We had a wonderful first night of Hanukkah with family and I felt so blessed to have Aaron with us, really WITH us. He is so active, it is getting hard to keep up, and gets a little noisier every day.
Aaron was visited recently by Kia and Jess, the OT and speech therapist who again reiterated that he doesn't seem to them to have a "can't" problem with food, more like a "won't" problem. Is that due to old neurologic injury, reflux, old allergy problems or ongoing pain with feeds? No one knows, including me. Meanwhile, he had gained weight, but then lost again and continues to slip on the growth chart. So, we are going to see gastroenterology to rule out a physical problem there to make eating a problem and I am researching infant feeding centers, and basically just trying different calorie formulas and feeding techniques.
I recently had a revelation that I have been TRYING to follow. I was obsessing one day late at night about Aaron's feeding issues and what that might mean for his future, and the possibility of significant developmental delay and what that might mean for his future. Then he woke up and we were snuggling in the chair and he looked up at me and I felt such overwhelming love for this little person, and I thought SO WHAT! I love him so immensely, everything about him, and so I forced myself to think through all the scenarios I was worried about. And you know what, no matter what, it will be OK. We will figure it out. I wish that this would have come more naturally or sooner to me. I look at my friend Christina who is open to the idea of adopting a special needs child and I marvel at her heart and wonder what is wrong with me. I think some of it is a need to control everything, some of it is this guilt that I carry around, some of it is genuinely wanting the very best for Aaron, and the rest I'd probably need therapy to figure out. But in any case, it has been liberating to think- SO WHAT.
That said, I am still very worried about his eating. But I am trying to channel that worry into productive ways of helping him. I try to "relax" about his eating, but I still am the one who needs to feed him every 3-4 hours and it continues to be a challenge. Well, we will just take it one day at a time.
Oh, one more development. I am heading back to work on a more frequent basis this winter. I am pretty happy about it. I won't have my own patients back, but I will have a regular schedule one evening and one afternoon a week.
Best to everyone. Happy Holidays from me, Matt, my little Matthias Maccabee (Sam as the father of the Maccabees, planning strategy seems somehow appropriate) and our little underdog Aaron "Judah Maccabee" Jane, also seems appropriate, kicking some proverbial ass!
Monday, December 8, 2008
Well, it was snowy in Michigan this weekend. The boys suited up and went out sledding. I know at some point, I need to stop thinking this way, but every time the kids do something so "normal" together, I am just overwhelmed. Aaron was fussy until we made the sled GO, then of course, our little action hero was all smiles.
He is utterly fearless. Pam, his PT was here this week, and we were laughing about that. Now it is not enough to crawl through his baby tunnel, he wants to climb ON TOP of it. With Sam, we had a certain level of comfort because he is shallwesay the cautious type. We are in for a whole NEW world. I remember when our eldest niece would come over and climb on the BACK of the couch, and I'd think that it would never occur to Sam to do such a thing. Somehow I think all that and more might occur to Aaron! Anyway, Pam was not very worried about the hamstring tightness and very encouraging about his progress. He really seems to know her and perked up immensely for her visit.
Feedings continue to be a struggle. We tried a med to increase appetite, but it didn't work and made him drowsy. I have nothing more to say- there's really not much new. Pam is going to send the OT over to re-evaluate him.
Since I have stopped pumping, I have been spending more time with Aaron at the last feeding of the night. He dozes off, then wakes and eats a little more. I sing, he plays with my hair, we snuggle. It is all so typical, but it is something that was missing before in the rush to get to the pump, do the dishes, etc. I think we both actually ENJOY that bottle. I wish they all could be like that!
Sam out of nowwhere today remembered something about watching the Pistons with Aunt Andrea while I was in or at the hospital. And then, at prayers, he thanked G-d for helping Aaron crawl. I am sure there is more going on in his head about the last 9 months than we will ever know. We went to the science museum with our dear "Auntie" Chris this week, so maybe all the ambulance talk there brought it up.
Well, Aaron is clearly understanding "throw the ball" and "give kiss" and I think my mom is probably right as usual and he may know to look for mama and daddy. Today, I said let's find Sam and he headed right toward him.
Well, on a last note, I received the most amazing email from an old friend today via my new Facebook account. We had grown apart and had some "bad blood" in what now seems like ancient history. Well, she read the blog link and sent me a really really nice note about it---it was a very pleasant, very big surprise. I guess that's the gift of technology and sharing the story.