SO WHAT!

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!

Snow bunnies

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.

Time flies

Well, it has been a long time since my last blog. Sorry for the random photo twist, I can't figure out how to turn it. That's Sam and Aaron at the zoo, us with Andie in DC.

This month has been so crazy. Shortly after my last post, Matt's grandmother died. She had been ill with cancer but it still seemed to come suddenly. The "spitfire" older woman is such a cliche, but she really did have a lot of chutzpah. Ironic choice of words in speaking of such a devout Catholic! So, we packed Sam off to Bubbe and Saba's house, and packed Aaron up for his first roadtrip to pay our respects. He did very well on the road---so well that I regret not taking him sooner so she could have met him. I also wish he could meet his Gold great grandparents, but I don't think we are ready for that trip to Europe! Matt and I enjoyed the time together, despite the sad occassion, and the one-on-one time with Aaron.

Anyway, right after that, we went to visit Aunt Andrea in DC. A wonderful time was had by all- and again, Aaron proved to be a surprisingly good traveler. Sam, of course, LOVES hotels, planes, subways and all things having to do with travel. Not to mention his love for Andie and "Shawnie". He experienced room service with Bubbe and Saba on this trip---the kid will be accustomed to the finer things, he better earn some dough! My mom and sister and I went to see Tina Turner. She is an inspiration. She has beaten the odds with such class and verve. We bought the tickets shortly after seeing Tina on Oprah months ago. I remember the day so clearly- Aaron had a pretty good day, and we were dancing around to Proud Mary, and I was laughing, really laughing, and I couldn't believe I could laugh again. So, I will never forget seeing her with my mom and my sister.

Aaron continues to amaze. On Thanksgiving Day, he walked behind a push toy at least 10 steps. I think he wanted to keep up with his cousins. He is now clapping, when you say "YAY" and waving like crazy. His 5th tooth, a lateral incisor, is now in. He looks so cute with that big grin! We went to see the developmental specialist last week. It was mostly a good visit. She called him a miracle repeatedly. Doctors don't throw that word around. I should know :) She thinks his muscle tone is now normal in his arms but he still has tightness in his thighs. She noticed that he doesn't like to sit, probably it is not super comfortable for him. I disagreed at first, but after watching him, she has a good point. He often kneels or sits sideways. I think he has been so active, I have slacked off on stretching, but since that appt, we are stretching lots. This was the first time that he scored LOW rather than MODERATE risk on the test assessing neuromotor development! I was SO excited to get out of the MODERATE word. He was a little behind on speech, expressive more than receptive based on her questionnaire to us. I am trying not to read too much into that. She thinks at a year, we should switch from mostly PT to mostly speech therapy. There was also lots of weight/eating discussions, which I will spare everyone for now.

With how much Sam talks lately, maybe he just can't get a word in edgewise. I swear, one day I am going to write down all the Sam quotes for the day, and just type them in verbatim. He is so cute and funny and precious right now. We went on a "date" last night to dinner and to see Madagascar and we had the best time. Age 4 is flying by and I just want to stop the clock.

Here are some recent videos... Aaron pushing his cart with Sam's encouragement. They are playing "together." PLEASE turn down the volume, I am speaking in an especially annoying voice in the beginning. It is about 2 minutes long.

The wave

Well, I should document all the latest Aaron news. He now has 4 teeth! I decided a long time ago not to write in a baby book about him for now, so I am going to try to record that kind of stuff here. He is standing up against everything. He likes the dishwasher and the dryer especially. He also likes to pull up and stand "face to face" against anything that reflects, and give himself kisses. He is even starting to cruise a few steps here and there.

Pam, our WONDERFUL physical therapist came this week. She now comes about once a month. She was really pleased with his progress. We now have "big boy" exercises to do, working on climbing and cruising, stand up and sit down. I have to work on finding time between chasing him and feeding him to do his exercises. Of course, we WILL do them. Aaron will exercise, me hmmm...not so much.

Most exciting, as referenced in the title...Aaron is definitely waving hi. He has done it a little for a month but tonight he clearly and repeatedly waved to my mom and dad. Won't wave to mommy of course. That's OK, I'll take it. It was beautiful.

Gratitude

With thanks to my dearest friend, who wrote about me and the boys on this topic. We have had a good couple of days. On the advice of Aaron's doctor, I am trying to chill about his feeding for a few days. Because of that, I have specifically decided NOT to write down how much he takes (this feels funny because I have done that since the day he came home from the NICU, every day for 7 months) and also not to talk about his feeding amounts with anyone except for Matt. (Because Matt is trying to do more feedings, also doctor's orders, I think we have to talk about it). So, I will blog at the end of this little experiment and let you know how it goes.

Anyhow, so I have been trying to celebrate the wonderful things we are beginning to know about Aaron. To wit...

* He is fearless. He is so brave and persistent.

* His laugh is adorable.

* He is already starting to play "chase" with Sam. I so look forward to all the games they will play in the future.

* I love how he snuggles in the crook of my arm. Even in the middle of the night :)

* His beautiful new toothy grin

* His zeal for exploring everything

I could go on, little man, you are a delight and I am mostly grateful to be the mom of TWO wonderful boys.

More worrying...

Here is a photo from Aunt Andrea's visit, Aaron being a sweet little snugglebug with A senior! (she calls him little A, but I will refrain from calling her Big A! Love you sis!)

Well, I debated about what to write about the difficulities we have been having as of late. I have decided to record how we are doing and how I am feeling now, so that HOPEFULLY it can all seem so overblown and remote in the future. Like how I use to worry if Aaron would ever sit unassisted, etc.

Anyway, Aaron weighed in last Friday at 16 lbs 13 ounces, a 7 oz gain in 2 weeks. It put him at the 13th percentile for weight, 90th for height. All in all, it was a nice gain, compared him only gaining 1 oz in the prior month. I really think it was due to the Duocal caloric supplement recommended by the allergist. So, I was ready to exhale and stop worrying so much about his eating. He was taking around 28 ounces a day, plus some solids, not great, but some. Since THE DAY of his weigh in, he has basically stopped taking more than 3 ounces a feed. (Before this, he was routinely taking 4-6 ounces, albeit with a lot of encouragement) He has a tiny cold, so maybe that will go away and his eating will get better. However, a big part of me fears that he has just now decided to stop taking his bottle. I worry that I pushed him too hard and caused his dislike of the bottle. I just don't know what to do. The feeding specialist won't return my calls, but initially had encouraged me to be persistent with his bottles. I am getting so tired of trying to coerce/coax him to eat every 3-4 hours. The only slight bright spot is that he seems to take solids slightly better lately (maybe because he is starving!) He really seems to like this "yogurt" made from coconut milk. At this point, I would feed him pina coladas if he would just take them! Again, maybe I am just worrying for nothing and he will turn the bend and start eating enough to grow. I feel like he just HAS to. So Aaron, if you are reading this when you are 10, and you are now big and strong and chunky, have a good laugh at your worrywart Mommy, OK??? And have a special treat snack with my blessing...

Say what?

Well, Aaron had his repeat hearing test today. He had passed his test as a newborn, but because of his history, he had a 6 month follow up, which he did not pass. They thought it was likely more due to behavior. Today, we repeated that. He passed the part of the test that does not require cooperation (beyond not crying, which he couldn't do last time). That means that any hearing loss would be mild at most. The second part of the test required him to look toward tones of varying degrees of intensity. He did better, but still didn't pass. I think he was bored by the "reward" of a flashing stuffed animal they get for looking to the sound! Due to that, he will need a visit at one year old.

His eating is about the same, maybe slightly better. I think he is teething, because he has not slept more than a 3 hour stretch all week and I see 3 little nubs on top.

Funny Sam story.... he pushed me after I had the audacity to beat him at basketball tonight ( I usually let him win, but he was ripping on the girls team, and my feminist leanings kicked in!). He actually surprised me enough to knock me over and Matt really got after him. He had story hour taken away, which was very upsetting to him. However, after he calmed down, he changed his tune, saying that he needed a "break" from story anyway.Anything to end up in the right...can't imagine where that comes from :)