STEPS!!

I am, for once, without words. Joyous tears only. It's not a great video, but the best we could do.

Updates- Warning-This is a not so positive blog

WARNING: If you are a person who insists on positive thinking and gratitude at all times, the following blog may be hazardous to your health.

Well, I realize that I haven't updated the blog on Aaron's latest medical visits for a while. I have been consciously trying to not fixate on medical stuff and my anxiety on this blog, but really, it's just a form of lying by omission. Is that OK? I am not sure. One side of me thinks that I need to consider carefully how I frame this year, in case Aaron ever reads this, and that maybe by writing the happier side of things, I will focus more on the positive. Another part of me feels stifled all the time. I know that I should be (and am!) grateful for his amazing progress. I know that things could be so much harder. I know that no matter what, my love for Aaron is immeasurable.

But still, I am so scared so much of the time. Scared for his future. Watching his development. Scared that I am over analyzing him. Scared that I will make the wrong decision. Scared he won't be able to....(fill in the blanks yourselves, my mind creates so many possibilities) Scared Sam will resent Aaron, resent me. And I am so exhausted by the fear. But I can't always control it. I struggle to get to "So what" but I fail more often than I'd like to admit.

I have so much self doubt. Sometimes I feel like my sense of self was torn in two along with my uterus. I question every decision and wish someone else could make them for me.

I guess that brings me to the medical/developmental updates...

The most important is the recent GI visit. The specialist recommended endoscopy to look at and take biopsies of his esophagus to look for something called eosinophilic esophagitis. He wanted to do it in late January, but we thought he was starting to do a little better. We talked it over with our PCP and Allergist, both thought waiting 6 weeks or so would be fine. You know, they talk about all these rare complications, but I am a little jaded about rare complications. And in my heart, I think he probably did have this disorder before I changed my diet while pumping/started special formula, but I think now his problems are mostly psychological. But...it is still so puzzling that he doesn't get hungry. And the feeding psychologist won't see us without some medical workup. And I don't want to miss something causing him pain- so if things don't turn around by March, we have an endoscopy scheduled for the 17th. Of course in the meantime, he has had the stomach flu, a cold and an ear infection, and has stopped eating pretty much any solids.

An aside, for those of you questioning what the actual problem with Aaron's eating is. Let me describe a typical day in feeding- starting at midnight- Up at 1ish to eat, takes 4 or so ounces easily because he is half asleep, up again at 5ish, again takes 4-5 ounces, up at 7, breakfast around 830, he used to take a 1/4 of a cup of coconut yogurt and oatmeal mix but now he will only eat about 5 blueberries and 10 cheerios. He also takes around 2 oz of formula in his cup. I spend 15 minutes trying to encourage the coconut yogurt (he can't eat dairy or soy and used to like the coconut yogurt) but usually throw most of it away. It is only available at whole foods at $2 a pop. Then a sleepy 3 ounces or so. Nap, play. Lunch around 1230 or 1. What I have tried, my own ideas and others includes: Avocado, with and without salsa (OT says try spicy foods) Pea soup with added food processed meats, homemade chicken noodle soup (all the store bought ones have egg/milk), Lunch meat, hot dogs, Chicken puree, meatballs with ketchup, homemade mashed potatoes, sweet potatoes, summer squash, butternut squash, carrots with brown sugar and butter, acorn squash, spicy taco meet, tater tots,green beans, broccoli, french fries, sweet potato fries, homemade banana muffins, applebutter on toast, food processed and whole chicken nuggets, pot/roast or stew in the food processor, rice, sorbet. All of the prior things of course have extra margarine and or Canola oil or Duocal carefully added. What Aaron actually routinely eats is- crackers or bread, approximately 1 cracker or 1/4 piece of bread, and 10-15 bites of pea soup, 5-10 blueberries or one chunck of banana. What Aaron has eaten in the last 2 weeks for lunch is two nibbles of cracker or bread. Another sleepy 3 ounces before afternoon nap. Our afternoon snack is sometimes more sucessful, he often has another 2-3 ounces of formula and some crackers or animal crackers. One day he ate a whole cup of peaches. It was so exciting. He has never touched them again. Then dinner, repeat lunch. At every meal he conveniently models my latest food discoveries in his hair and all over his body! And, surely because I once mentioned a blueberry facial I had with my dear friend, he often treats me to fistfuls or spoonfuls of his food thrown at my face. An outside observer might think that the fact my child is covered in food products might mean he actually eats food-but they would be WRONG! Dinner is much the same. Then 4 ounces at bedtime. Lather, rinse, repeat. Get ready to give him the bulk of his calories at night. It is so wrong, the antithesis of good pediatrics, but I fear he just won't get any calories if I don't feed him at night. My good friend recently bemoaned the fact that her not yet 3 month old is not sleeping through the night. Yes, that and she is a size 4---good thing I love her so dearly!

So, not surprisingly, noting the above, Aaron is not gaining weight. At last check a couple of weeks ago he was now at the 5%ile for wt. His height has been better, previously at the 50%-75%,now at the 25th. However, we have continued to steadily fall. IF he can just stabilize and start to grow at a new centile, even if it is the 5th or 10th, that would be great. The nutritionist commented that he may just be "genetically inclined to be slender" Hardy-har.

We have upcoming wt checks and allergist visits. Our speech therapist visited and we are still working on signing. He tests within the normal range on her scales for expressive and receptive language (different from the results at the developmental doc). My view on that is that every day he seems to understand more and say more. I think if he weren't being so closely scrutinized, there probably wouldn't be any concern. He is doing so well with gross motor skills (Beaming mom) that our Angel PT won't come until after he turns 1.

So, that's the latest. I am at a loss for how to help him with eating, and just hope it will slowly turn around. Fingers crossed. Promise to be more brief and more upbeat next time...until then, good night.

HAPPY 5th BIRTHDAY SAM!

5 years. My baby is 5 years old today. 5 years ago, they handed me a squinting, bundled 7 lb miracle and said, "Here is your son." Son?!?!?!?!!!! Hmmm, I thought. Ponies, Barbie dolls, backyard synchronized swimming, sisterhood, tights, braids...that I know. Can I do this well? Can I be what he deserves? And so, my reeducation began. I held him to my chest and my heart has never beat the same. Every beat, filled with him. Pride, worry, joy, laughter, tears. My eyes have not seen the same. All politics became local, every war, heartbreak, mother's soldier seen through the prism of him. My ears fill with his voice, with the questions of ENDLESS curiousity and many days I hear my own voice eerily reflected in his. And strive to do better, to be more patient, speak more gently and wisely. To be more proud of what I hear reflected back.

My mind fills with new facts. I watch more baseball, football, basketball than ever before. I sit on the sidelines of soccer, teeball, basketball games and watch with ridiculous pride as my s0n, MY son exuberantly excels. My kid! We zoom down sledding hills and waterslides together. We play minigolf and he "kicks Mommy's tushie" at bowling. I wear a pirate patch, sword fight, play with talking trains, read books about dung beetles and Berenstain bears. I wrestle and race and shoot and pitch and dunk, though never as much or as often as he'd like.

I worry. I thought I worried before him, but that was just the minor leagues. At work, I feel I should be with him. At home, I hope I won't disappoint him. When to stand firm, when to loosen up, when to push, when to step back? Are we doing right by him? Are we worthy of this amazing gift of being his parents? He is so sensitive, I want to protect that and toughen him up all at once. I don't want the world to hold any disappointments for him, any pain...but I know it will.

I laugh harder than ever before. His silliness tires me sometimes, but is infectious. He argues and cajoles, always thinking one step ahead. He gets the last word more often than not. He is so ticklish, like me, but loves it, egging on his ruthless dad for more, more, more.

His insight, intellect, and compassion amaze me. We talk about his brother, how close he is to walking, and he asks, "Did G-d hear me pray for Aaron?" Every time a beloved family member leaves, it is a trial. I get frustrated and he says, "But I just LOVE people." We discuss the dietary habits of sharks, the election of Barack Obama, the superiority of white sauce to regular spaghetti sauce, the latest Michigan loss, his love of hotels, a possible move to DC, his wish that we saw his beloved aunt every day. I look forward to years of good conversation.

He falls asleep in the car and I carry him up the stairs. He wakes up, but quickly pretends to be asleep, savoring this brief return to an earlier time, egged on by sibling rivalry. His feet dangle below my knees, his body is all angles and muscle. The sweet baby chub is all gone, replaced by 100% solid little boy. I ache and wonder where the time went. I walk slowly up the stairs, slowed by his weight but also savoring the moment, knowing soon I won't be able to carry him like this, and someday he will look down to see me.

Sam made me a mother. I understand my own parents better than I did before. I appreciate them more. My childhood memories become my how-to guide. My mom serves as my most valued professor, mentor. I know with whatever career choices I make next, THIS job will end up mattering most. I relish watching him with them, so much the same as with Andrea and I, and so much different. I am thrilled he has them, and vice-versa.

I love my husband more, and more deeply than ever before. I see him in Sam and marvel at what a special little boy he must have been. I watch them sleep, their profiles so similar and my heart fills. He is patient, kind, full of energy and fun and zest. I thank my lucky stars that I chose so wisely.

I love this little boy. I love the baby he was, the toddler, now the inquisitive pre-schooler. For once in my life, I have a hard time looking ahead. I want to slow the clock, preserve this time. These lyrics keep playing in my head, today, for Samuel....

Fill my heart with gladnessTake away all my sadnessEase my troubles that's what you doThere's a love that's divineAnd it's yours and it's mine like the sunAnd at the end of the dayWe should give thanks and prayTo the one, to the one

Thank you for Sam. Happy 5th Birthday sweet boy!

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