What next?

Well, what a wonderful week we have ahead of us. I feel like 2009 is going to be the year of realization of improbable dreams. In the country, an African-American man, a man who reveres learning and cooperation, who picked as a partner a strong, accomplished, opinionated woman is the PRESIDENT of the UNITED STATES! It still amazes and impresses me. I never thought I'd see this day. And in one small corner of this country, on a much smaller, but I think no less important scale, a little boy who came into the world under the most difficult of circumstances, a boy who was expelled cruelly from the womb, whose little mind was starved, chilled and rebelled with seizures---that little boy zooms around the room, barely hanging on to the edges, on his OWN two feet. He seems to also say, "YES I CAN!" I never thought I'd see this day.

I pray today that G-d watches over that great man and that brave little boy. I don't think either will have entirely smooth sailing ahead. I think of a 19 year old mother (so young!) raising a little boy many years ago, trying to teach him how to walk proud and strong in a world that can be so cruel. I hope she is looking down on her son today, marvelling at all he has accomplished. Could she ever have imagined?? Did she dream of such greatness for him? Or did she wish only for his safety, good health, and some smaller slice of the American dream? I say only, but really, these dreams are also not to be taken for granted. These are my dreams and I hope in this year of sweet victory, my baby continues to forge his own amazing path. And I honor that young mother who travelled the world, seemed to see people with clear eyes and an open heart, valued books and learning and diversity, and raised the 44th President. My heart aches that she didn't live to see this day.

Hello 2009

Well, I can't believe that it is already the 8th of January. I am getting older by the minute, but so are we all right?!?! Better than the alternative... the above picture is of our family at a recent UM basketball game. They lost that one...but they are doing pretty well overall! GO BLUE!

Aaron seems to do something new every day lately. He is standing for probably 30 seconds at a time without holding on to anything. It is the funniest thing, he looks at you to make sure you are watching and grins! He is showing a lot of interest in books and for you parents out there, is really loving our old favorite "Pat the Bunny" He does a few of the activities like scratching the face and playing peek a boo. I remember when Sam started "sniffing the flowers", it was the cutest. He turns the pages very well now. He also loves to zoom his push cart across the house, he really gets going. His rocking horse is also a favorite, MAYBE he will be the "horsey" one. He is also showing some real promise at "throw the ball", though Sam is unimpressed. I clapped today and Sam sort of rolled his eyes and said, "He didn't even get it in the basket!" Lastly, he bites. Hard. Not so cute, but I am trying to be a faithful reporter. His latest sounds include "Oh!, OOH!, W, N, something that sounds like more, something that sounds like good"

His eating is improving a little bit. The Prevacid? Age? Not sure. He will now eat his bottles with less difficulty, sort of back to where he was before the latest downward spiral. And he takes at least 1/4 cup of purees at most meals. We have a slew of evals and appts coming up. One encouraging thing I have been noticing this week is that he is actually getting fussy at meal times and seems happy to get in his chair sometimes! For Aaron, this is huge. I used to think I could not feed him for days and he wouldn't care.

Sam got the stomach flu yesterday, but luckily it seems to be the 24 hour variety. I hope. I am really really hoping Aaron avoids it. Sam also started swim class this week. I had to practically drag him there, he complained for days about it and the minute it ended he wanted to know, "When can we do it again?" He is in such a daddy phase right now, it is all about daddy. Matt has rock star status, and I am more like a servant! It is actually the hardest thing for me about staying home with the kids...I am totally old hat! Small price I guess :)

This is a recent link to a cool cap kiddo I found, another uterine rupture survivor. LOVE THESE STORIES!

http://www.coloradoconnection.com/news/story.aspx?id=231236

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.