Where to start?

I have been painfully absent from this blog. Much of that is a lack of time, and for many months (years) this blog was a place to process the roller coast of emotions that followed after the birth of my dear Air Bear. Our roller coaster has been more of a kiddie coaster of late, with wonderful peaks and more shallow valleys. There is less angst. Yes....we were told to consider a Gtube this spring.....but we so far have avoided that and we got to introduce DAIRY! Yes...A is in speech therapy, but heck, so was his daddy and last I checked he talks for a LIVING :) And lastly, my boys are so much their own little men now, that I feel more guarded in what I can say, what they might read later, what could be misinterpreted...it's a wonderful "problem" to have, but it makes for less satisfying cathartic writing.

SOOOOOO... the biggest news, and the reason I write today is that we have a new boy! Today is his 6 month birthday and he has completed our family. Ben is like a huge burst of sunshine and I can't imagine life without him. For those of you who stumble on my blog while researching uterine rupture, I will say that it was a pregnancy filled with anxiety and great hope. I couldn't even write about it, in fear that it wouldn't end well. But at 35 weeks and a few days, my last child came into the world, smoothly, in a routine manner that many moms take for granted but I never will. He cried and was pink and was one of the 3 most beautiful people I have ever laid eyes on. It is a crazy chaotic life raising 3 boys, but I am trying to savor his infancy. I love nursing him, his sour milk mixed with Burts Bees smell, his belly laugh, the way he opens his mouth like a baby bird. I am so eternally grateful that I have the chance to mother a baby again. Sometimes it feels bittersweet, and I get angry at myself for being so scared, sometimes paralyzed with fear during A's babyhood. But then I remember that the good times very quickly outweighed the scary times, and A and I spent so much time together! I may have been crazy intense but I think (hope) my love outweighed my fear.

And, in terms of enjoying Aaron, I am making up for any lost time. I LOVE 3 year olds and my boy is one exceptional 3 year old. He is hilarious and daring and mischievious. He never stops moving. He is starting to enjoy some foods, which makes me so happy. He is a great big brother and little brother. He knows his ABCs, counts, draws, shoots baskets, understands how to work an IPad better than me. My beloved baby sister got married this year, and watching him play on the beach and I still can have my breath taken away and tears in my eyes watching him, thinking how close we came to losing him, feeling the enormity of the great miraculous gift we were given the day he was born and survived.

So all in all, a very lucky lady. My big boy will turn 8 this year, and I will save writing about him for his birthday. I sign off with some pics of my trio.

Heavyweight Champion

It has been all summer and I haven't updated this blog. It has been very busy...my big boy at home for the summer, a new job, lots of time spent with friends and family. And my mind has just been more quiet lately. But this week...we got news that I have to shout from the proverbial rooftop...Aaron weighs 26.5 lbs. This puts him at between the 10th and 25th percentile for weight, a percentile he hasn't been at since about 6 months of age. So, huge sigh of relief.

The little man continues to amaze. He is talking a little more every day. Tonight, I heard him on the monitor singing the Caillou theme song to himself. He is routinely putting together 3-4 word sentences. Yay!!! His independent streak is unbelievable to me. I had read about this tendency of toddlers to want to do everything for themselves, but it never really took hold with our big boy. He was pretty content to let me put on his shoes, hold his hand in the parking lot, etc. Not so with my little Cinderella man. If I am in a hurry and buckle him into his carseat (instead of letting him do it himself), I WILL have to withstand furious wailing from the backseat for the duration of the trip. He rebels against holding a hand to walk down stairs, having his burger cut in two, being read to instead of reading book himself. "ME DO IT!" He wipes off kisses with a glint in his eyes. So, like mommies around the world, I wait. I wait for the moments when he is tired or frustrated, or caught off guard, or in need of a soft place to fall. And in these moments, when he climbs in my lap and stays put for a whole story...when we giggle through the photo album...when he comes in for the early morning baba, I hold tight to the baby inside this amazing little boy. After all those months of wanting to fastforward to these glory days, these days when I would know my boy would be OK, now I want time to stand still. Greedy girl.

2!

My little guy is a 2 year old, with all the crazy tantrums and independence that implies. While his brother still has no problem letting mom help him with all sorts of activities of daily living, A wants to do everything himself. Buckle himself in (and out) of his carseat, put on his shoes, open the door, walk up and down the steps....some of these tasks are more appropriate than others! When I am in a hurry to get somewhere, his shrieks of protest when I want to buckle him in are not convenient, but I try to remember that this independence has taken him far in life. Right now he is totally in love with his baseball mitt. Not surprising, as baseball season is in full swing at our house.

The one area he is NOT tackling on his own is sleep. After learning to climb out of his crib (Can you believe the irony?) he has been staying in a toddler bed in our room. I haven't had the strength to have the all out fight that will ensue when we try to get him back in his own room. Yet. The day is coming...

We are in a not so great time for eating...the topic is so old...I am trying not to let it run Airbear's life and am just hopeful that one day he will start eating better on his own. His weight is holding at the 5th percentile so we are hanging in!

Just around his 2nd birthday, A went back for his final speech eval and they found that he did have a speech delay in expressive language. I had suspected as much and was prepared to fight for him to have continued services, but in turned out that I didn't have to argue. Then, there was spring break and he started talking a LOT more. And more clearly. By the time his 1st sesson came this week, he was doing so much more. The therapist was very pleased. I think the sessions will be fun and can't hurt, but I am not too concerned anymore. Some of his new phrases include...

Light on, light off, open door, git it me, Abby kiss,

He also likes to count. He was asking for kisses from the pooch and I said she already had kissed him. "Two!" He says. I reply "She gave you two kisses!" "Twee!" (meaning three) he says back.Smart boy!

730 days

Aaron is 2 years old today. 730 days. I was thinking about it that way today for several reasons. First, because every day we have with him is a gift. Do I always feel that way? On the hard days...during sleepless nights....no, regretabbly not. But, MOST days, for at least a few minutes, I look at my little boy and marvel at how far he has come and how sickeningly close we came to losing him. And, Ifeel so grateful.

730 days because Aaron has taught me a lot about living in the moment. I am currently a mostly stay at home mom with no idea what the next year will bring. Those of you who know me, even a little, know that I have always been a girl with a 1, 5, 10 year plan. Not so much now. What do I know? I know that I will be the mom of two remarkable boys...I will watch Aaron play soccer or basketball or ride ponies. I will teach him to use the potty, teach him his colors, take him to preschool. I did not know that 730 days ago. It is enough. It is everything.

Aaron's 2nd birthday was amazing. He is so special. He had a great day, full of smiles and gave kisses and hugs to everyone. He even kissed Aunt Andrea via Skype. He is talking more every day. One of his favorite words is "Moooove" when he wants someone (often his big brother) to get out of his way. He seemed to really get that the day was all about him, and enjoyed it immensely. He danced along with Handy Manny, Beyonce, JT. He ate tacos like a champ. All in all...a perfectly wonderful typical 2 year birthday party...for an exceptional kid!

6!

6 years old, my big boy turned 6 today. We had a fun-filled day of Chuck E Cheese and then a party with family at home this evening.

Sam is an amazing 6 year old.He thanked us today for his party and thanked his family for coming, without being asked. He had so much fun and was a pleasure to watch. He also of course, despite coaching, pointed out that he had two of one gift and the other one wasn't exactly what he wanted. I really tried to set him up for this situation, but somehow...didn't work...oh well.

All the friends were very cute and watching them together was fun. They try to act so grown up.

Sam is reading now! We have gotten great reports from his teachers at school and at religous school. He has been very patient and loving with his brother. All in all, I am looking forward to 6!

Update

I realized that I have not updated on Aaron's progress in a while. It seems like I have been singing from the rooftops, but just in case anyone who reads this hasn't heard...

Aaron gained weight!!! He now had two 1 lb over a month weight gains since we returned from Ohio. 2 weeks ago, he weighed 23.5 lbs which put him between the 5th and 10th percentile. A totally wonderful acceptable weight. So, for now, the plan is to stay the course. So relieved. It seems like when I was finally at my wit's end and ready to accept anything, including a tube, to help him grow, he made it happen. He is finally outgrowing clothes. Today at library story hour, I was embarrassed to notice that his pants were way too short. Getting the waists to fit is another story.

On another note, he went for developmental screening using the Bayley tests. He scored in the average range for cognition/expressive language and above average for receptive language!!!!!!!!! The psychologist repeated the results to me several times. She said I needed to hear it and boy was she right. No matter what, we would have been fine but it was so nice to have validation of how wonderful we already think he is doing. He is anything but average to us.

So, let the good times roll...I know how blessed we are and I feel guilty sometimes that we have this outcome when so many others aren't as lucky. All I can say is that there is truly not a day that goes by that I don't marvel at something he does and count my blessings. And no matter what challenges may or may not come, I think I will always feel that way.

Musing

Today was just another ordinary day. I started reading the sequel to a book I read so long ago, before I was a mom, called the Deep End of the Ocean. The initial book is about a family who loses their child to kidnapping. I have not, thank G-d, been through this, but the author's words really seem to bleed out at you. I could hardly read it. All I could think is, how differently this feels from reading the first novel before I was a mom.

Then, I was speaking to my friend, who has recently given birth. We were talking about how her first simple trip away from her newborn rocked her world. The timing, the vulnerability she felt in the car...I remember feeling much the same way. This new being depends on you to eat...you want to be there for every milestone...your life no longer belongs just to you.

At the library, we were at story hour. I am sitting at story hour with a couple of other moms, one very far along in pregnancy. She thinks that she may be in early labor and this prompts every other mom there to retell their own birth stories. Luckily, my toddler doesn't sit still for long, so my beloved AJ saved mommy from that conversation. I wish I could just hear these stories and not feel them...solely appreciate the miracle of what is and not the what could have been...I am getting there, but not there.

So, all of this, on this very ordinary day, in between laundry and pot roast and chitchat, I feel...heavy and vulnerable. Heavy with love and fretting and joy and fear for my children, vulnerable with the knowledge that they are my core, that protecting and nurturing them is so simple on a daily basis but full of potential pitfalls, humbled by the fact that a simple conversation can still bother me. Maybe I should start reading romance novels....

My new "niece" (the canine kind!)

This is the only way I know how to post a video for my sister, so her new little girl Ruby gets featured here! She is so cute and we are happy to have her in the family.

CCED update

Last week we traveled with Aaron to Cincinnatti to their Center for Eosinophilic Disease. He continues to struggle with gaining weight, now has fallen to less than 3rd percentile. Our terrific allergist recommended we go there, as they have been at the forefront of research and treatment for this disorder. I learned a lot there and am reading a lot of the research articles now. The research really dates back only about 10 years, which makes it hard to really know what Aaron's future holds. It used to be these kids were thought to have really bad GERD that just didn't respond to treatment. They drill into your head that it is a chronic disease, but I hold onto hope that there is still a lot they don't know. The treatments include elimination diets where they eliminate what the patient is allergic to on skin tests or eliminate the 6 most likely allergens, swallowed steroids, and elemental diets where kids are fed completely by formula for a period of time and then foods are slowly added back. The CCED recommends diet restrictions in lieu of steroids for kids his age, because the long-term effects of swallowed steroids are unknown. (These steroids, often used for asthma, are poorly absorbed, so we hope they are just coating the esophagus and thus more safe) So....Aaron did fine on his endoscopy (the only way to tell how his esophageal disease is to put him under general anesthesia and biopsy with a scope, ugh). His esophagus looks normal now (YAY, before it had signs of EE) and his biopsy showed only 4 eosinophils per HPF (previously more than 100). So...the doctors presume his failure to gain weight is due to residual behavioral reluctance to eat caused by pain and suffering with swallowing when he was untreated. Our plan now is to keep him on the steroid treatment, add a acid blocker and appetite suppressant, feed him high calorie foods and formula, and try to get him to gain weight that way. For now, Matt and I have chosen to continue the steroid, as taking out any more foods from his diet seems to be unlikely to allow him to gain weight and we still hope he can get adequate nutrition orally. His growth is important, as is proper nutrition for his developing brain. None of the options seems great, so we are trying to pick the "least bad" choices for him. Honestly, at this point, I am just praying that he will somehow start eating and grow. Please add your prayers to mine.

We did get to spend lots of time together in Ohio. When Matt had to leave for a couple of days, Aaron and I were "just the two of us", which was pretty fun (when he wasn't spitting/throwing food back at me) He got very spoiled sleeping in the big bed with Mommy and watching a lot of Handy Manny. Sam joined us later in the week and we all went to the Zoo and the Aquarium after AJs appts. Aaron was a trooper for all his tests and Sam was a super supportive big brother, I was very proud of both of them.

Iwill add some fall pictures soon!

Sentimental reasons

Last January, I wrote a post about Sam on his birthday. Everyone really seemed to like it and it made me realize how this could be a vehicle to write the things we just don't always say to the people we love most. So...in February, I wrote for my dad's birthday, and then it became a bit of a tradition. The year is coming to a close for family birthday's and tomorrow is my hubby's big day. This one is hard. Not because I couldn't gush for pages about my wonderful partner in life....but because of the "ewww" factor. But, I couldn't do a year of birthdays and not include the man who walked into my life when I was 19 and changed it forever. So, I guess I am going to risk embarrassing myself and my guy...feel free to stop reading now unless you are the birthday boy.

I was not the girl who dreamed of weddings and kids and wrote Mrs. so and so all over my notebooks. In college, I always thought my friends would get married first and although it seems crazy to me now, I went through a phase where I was pretty sure I didn't want kids. (It seems incomprehensible to me now, even on my worst mommy days!) I think part of that was because it seemed so hard to imagine someone I would want to share my life with and raise a family with. And then, a slightly scruffy, really funny, smart, sensitive, smartass Scholar came along.

I liked him then, I love and adore him now. It amazes me that I had the good sense to pick him when I was so young. And like fine wine...he gets better with age. The young college guy has grown into the kind of man who puts his family first, who works so hard to keep me happy, who adores his children, stands by his responsibilities, is my shoulder to cry on and can crack me up like no other. He doesn't miss games, doctor's appointments, teacher conferences. He works hard at the office and does more than his share at home. He respects my work and me. He does a mean repertoire of imitations, has trivia and sports knowledge that amazes, loves me unconditionally, is a great attorney who has been singled out several times for his ProBono work, and there is no one I have more fun with. I want my sons to grow up to be the kind of man their father is. We have been through a lot in the last year, I feel we have been tested some, and we have come through stronger.

So, in the tradition, some song lyrics for my true love...Barbra sang this song today on Oprah and it gave me chills...this is what my husband does for me and I am so blessed to have him, as are the boys...

Make someone happy,

Make just one someone happy.

Make just one heart the heart you sing to.

One smile that cheers you,One face that lights when it nears you.

One gal you're everything to.

Fame, if you win it,Comes and goes in a minute.

Where's the real stuff in life to cling to?

Love is the answer,Someone to love is the answer.

Once you've found her,Build your world around her.

Make someone happy.Make just one someone happy

And you will be happy too

Ups and downs

So these videos are from this reverse trampoline thing they have at the mall. Sam has done it before, but Aaron never has. You have to be 20 lbs. He recently hit 21 and screams to do it everytime we go, so I told the lady to put him in the harness and just let him bounce a little. He went practically up to the ceiling! Seriously, a crowd gathered. I am sure people were saying" What kind of crazy mother let her baby do this?!?" The video is terrible because I kept losing focus during my panic attack. I am not kidding. But both boys had so much fun.

Sam has had a trying time lately with fear of monsters and difficulty sleeping. We think it is a combination of his Safety camp plus this Berenstein Bears book with jealousy represented as the "green eyed monster" and kindergarden anxiety. Anyway, it has been hard on him...and our patience. He is improving. I know a lot of moms have trouble with their kids going off to kindergarden. I can't wait. He needs socialization and taming!!!! I will let the saintly kg teachers have at it.

Swimming!

It has obviously been a while since my last post, life has been hectic and I have been uninspired! Well, my boys are obviously still a huge inspiration, but there has been less angst :)

Sam has been very active. He has done Sports camp and now is doing Safety Town camp. He has enjoyed both. He got picked on by some older boys the first day of Sports Camp, very mild teasing, but I think it was a shock to both of our systems! This school stuff is going to be hard. But he is resilient and took it in stride, and his mama bear mother tried to do the same. Actually, his daddy came to his defense and spoke to the teachers about it. Yay for co-parenting. Kudos to any and all single parents, but this job is HARD and I am so glad not to be partnered up so happily.

Aaron is doing very well. He has sort of plateaued a bit on saying new words, but he seems to understand more every day. His eating has been much, much better over the last few weeks. It remains to be seen if this will translate into some added ounces. Anyhow, it is nice to see him happily eating, no matter what the scale says! The added food and our decision to get rid of the calorie supplement has alleviated his constipation, so we "lost" another medicine. Yay. We are still working on getting to Cincinnati, the country's premier center for EoE research, but our fabulous private health insurance is denying thus far. Boy, I sure think it will be just horrible if my doctor's recommendations are limited by a government plan because this private plan that costs us an arm and a leg is soooo wonderful. Sorry, brief detour into the infuriating health care sideshow. Actually, if we continue to not progress on the coverage, we may get Aaron into Children's Special Health coverage, an evil government program for kids with special needs thatwould likely cover this.

Anyway, it has been a cool summer but here is footage of the boys in the pool.

The Dancers

Well, the summer is flying by...what a difference a year makes. For me, every milestone this summer brings back memories of the same time last year. We have been busy with Tee-ball, swim lessons, play group and just enjoying each other. We got to visit DC despite spreading some sort of viral contagion while there, and had a great time. The hubby and I spent a glorious weekend alone together in Chicago (Thanks Bubbe and Saba!) and we have travel plans to see friends coming up.



Sam gets smarter and more grown up all the time. He is big enough to ride down the slide at the waterpark alone! Gulp...I remember when he was 2 and Matt talked me into taking him on it the first time ( I was sure he was too little, Matt was right) and I will miss going down it together, him in my lap in the innertube, both of us shrieking and giggling. I told him that and he is humoring me by taking a last ride together, but I am sure going with mom will be ho-hum now. Sigh. I thought I had more time. He is loving teeball and having more fun every day playing with his little brother. He even takes the biting in stride. They love to chase each other around the house and wrestle. I have tried to limit the wrestling (it can't be helpful in taming down Aaron's toddler aggression!) but it is truly impossible. BOYS! A nice problem to have, all in all..



Aaron is getting to be quite a handful. I remember this being a wonderful but really, um, challenging age in round 1, and that is proving true this time. He seems to pick up new ideas and words every day. He LOVES music and dancing, trucks/buses/cars, and of course...sports. He throws temper tantrums on a regular basis. Now, instead of just refusing his food, he routinely spits some back at me. Ugh. He is getting another molar in, and he is wanted to use those teeth on people, not food. He is going to get kicked out of the gym day care if he keeps it up, and I am actually working out on a regular basis now...I don't want to be kicked out :)!



All in all, a good summer, so far! The videos are a little long but so funny. Lots of white boys dancing at our house. Sam wanted to hear his favorite grown up song, the Single Ladies song by Beyonce, but I couldn't find the CD, thus the YouTube video was placed and he got his groove on. Sort of! He kind of looks like he is doing karate. Aaron just presses the button to hear music and spontaneously starts dancing. It is so funny and adorable. To his mother, anyway...

Running

So, Nutty Bear runs everywhere. This adorable, clumsy run. My mom and I both noticed it today...I was trying to contain him at Sam's swimming lessons and he kept running away. She had to chase him through the library. He loves to run. He has also learned the fundamentals of baseball. You say, "Batter Up" and he assumes the position. Then, we try to "pitch" the ball right to his bat so that he "hits" it. When it works and we cheer, he takes off running with a huge grin because Bruva Bear taught him to run to first. It is so cute. Anyhow, I was chasing him today to get his jammies on, and all of a sudden, I had the biggest sense of deja vu. I was remembering sitting in the developmental peds office during one of Aaron's last visits. He had just started crawling, and we were so excited, but still found it hard to believe. And up until that point, even though he seemed to be doing well, no one would make any predictions. Anyway, we said to the doctor, "So, this means he'll walk, right?" and she said, "He will walk." I said, somewhat hesitatingly, "Will he run?" and she didn't hesitate in answering "He will run." He will run. I cried so hard, right there in the office. And that memory really took my breath away today. It all seems so unreal now, that fear, but then it comes back like that and it is so fresh.

Arts,crafts, and paperwork

Nutty Bear's OT came this week. I had expressed some concern that although he is meeting his milestone in the fine motor department (things like stacking 2 blocks/pincer grasp) it seems like he is more easily frustrated with these kinds of tasks. His Early On coordinator agreed. It is hard to tell if he has difficulty handing toys over, or just prefers to hurl objects baseball style. But it does seem like he understands how to build a tower, but gets frustrated. I brought it up, but I honestly thought that it would be overreacting mom stuff.

Well, she thought not. We have been working a lot on precision and that is improving, but his OT thinks that he actually has some decreased strength in his hands. He had some difficulty pulling apart legos, apparently more trouble than most kids his age. And in retrospect, he does seem to have some difficulty with "squeezy" toys. So, she has all sorts of suggestions for using Velcro and Legos to help him with this.

And crafts...yes, crafts. I am not exactly crafty. Sam is also, I think, a wee bit challenged in the fine motor dept. My teachers famously complained about my scissoring technique. My mom scoffed that I was not going to need to know how to scissor well! (Yes, I am glad to NOT be a surgeon, but I'd like to think I improved with age) Anyhow, we are going to make a good effort to have a "crafty" summer. Obviously, Aaron's participation will be at a very basic level but I think her point is to get the boys active with this now, together. So, if you know any good baby crafts...share away!

Sam has his first teeball game tomorrow night. I will post the results, oh wait, this is A2 and there is no score. Ask me privately, you know Sam will be counting. His team is the Blue Dog Thunderbolts (I think this is what they settled on!-maybe a reference to those Blue Dog Dems)

Lastly, we are trying to get Aaron set up for a visit to Cincinnati Children's in the fall. This is where much of the EE research is going on and they have a interdisciplinary team. I spent over an hour tonight filling out paperwork, now we have to get his records and pathology then we can send it all in and schedule. I have filled out these forms as a physician for families getting second opinions many a time, odd doing it for my baby. The newest article I just read on EE states that there is a less than 5% chance of outgrowing it, despite the tendency to outgrow other childhood allergic disease. Very sad and scary. Well...one day at a time...especially with our little odds beater.

Shoes

So, my mom's birthday starts in a few hours and she has been struggling with foot pain all week. This has gotten me thinking a lot about feet, footsteps, and of course...shoes. No, not the fact that my mom has an enviable collection of black shoes that leaves my dad shaking his head. But- filling her shoes and walking in her footsteps.

Because my mom is THE mom. THE mom that every child should have. The kind of mom that I strive every day to be, the benchmark by which I measure how I am doing. I don't think she realizes how extraordinary she really is. Growing up, I can't tell you how many times my sister and I would hear, your mom is so (cool/nice/pretty/fun/wonderful) and we would pretty much have to nod our heads and agree. Even in the midst of being teenagers!

My mom will and does drop everything, at any time, for my sister and I. In medical school, I really messed up an exam. My mom was at my door in what felt like only minutes, with hugs and I'll admit, a few wine coolers. She has seen me at my absolute worst, more times this year than I'd like to count, and has been absolutely steadfast in her support and love. When I woke up from anesthesia, terrified, bereft, and feeling completely unlovable, I asked for my mother immediately. As terrible as I felt, and as much as I doubted anyone else's ability to forgive me, I knew my mother would not waver. I wanted my mom.

My mom is a lot of fun. Our "fearsome threesome" logged a lot of hours in motor homes and motels, going to horse shows across the state and country. I remember head lice in Allegan, my mom's witty comebacks (toothless and dog piles come to mind), turning up the radio and dancing. And when the girls got the giggles...watch out. She loves music and has amazing style. She has taught me so much about true love, generosity, class, patience, forgiveness. Not to mention all the myriad of practical stuff that mothers teach kids every day.

My mom is a GREAT bubbe. She relishes our boys with a passion that is amazing to watch. She is always up for a game of baseball, basketball, soccer. She jumps into the pool with them. She teaches them things that I didn't even think of. She has had faith when I didn't and has been right all along. They are so lucky to have her and adore her completely.

My mom is ALL mother. She stops to help strangers on the street and offers motherly advice to those in need. She told me once that she always thinks about how she would want a stranger to treat her children if she was not around and acts accordingly. How much better would this world be if we all did that!?!

My mom can't understand why her feet hurt, but I know a little secret. It's because she is the heart and soul of our family, and carries all of us on her able shoulders. And that's not always easy to do in cute shoes. I love you so much Mom. HAPPY BIRTHDAY!

Night

So, what is it about the nighttime??? I am lucky...I don't suffer from insomnia nearly as badly as my dear friend who wakes at 4 am for no apparent reason, or as my mom who can be up half the night. No, once I am utterly exhausted, I generally can fall asleep and stay asleep. Unfortunately, for me, utter exhaustion doesn't come before midnight. And the boys are up early. And Aaron (currently nicknamed Nutty Bear) has his 3 am snack.

But really, it is not the lack of sleep that has me blogging right now. It is that every time there is quiet, there is no peace. We had a GREAT day today. DH's trial is over! He did great and I am so proud of his dedication and smarts. One small silver lining of him being gone is that it really highlights how much I love him and enjoy his company, even after so many years. So, anyway, he took the day off today. We had a great time, Brother Bear went to his grandparents for a little while, so DH and I had some time with Nutty Bear on our own, and then we all had a lot of fun the 4 of us. I thought to myself, OK, I obsessed over the new diagnosis all week, but now it is time to move forward. DH is home, I can relax a little, things will look more bright. And for a while, it did.

Then, the boys are in bed. Exhausted trial lawyer fell asleep next to me. I snuggled in, gave thanks for my guys, closed my eyes...and....envisioned Nutty Bear's ribs. And worried about whether he will grow to be at least average height. And whether he will ever be able to eat pizza. And then how our family will change, will he resent his brother, will he always feel left out, will we be able to travel, eat out, once he notices how different food is for him? Will he ever enjoy food? And then started thinking about how this shouldn't matter so much to me, when we have so much to appreciate about his recovery from his birth injury. Oops...don't think about the birth injury...too late...now I start thinking about whether he is really on track like I think or am I in denial...and now I am wide awake and I give up and get up.

I am fine as long as I am running at full speed but I cannot be still/be inside my head. Maybe that's OK, maybe it isn't, but for right now,it is just reality.

Aaron updates...

He now says bye-bye, shakes his head no, and maybe says Ne Ne for night night. He took 7 ounces of formula at bedtime tonight (new record) but he had skipped ice-cream, so unclear as to whether this is improvement. He claps his hands and stomps his feet to "If you are happy and you know it..."

Sam's questions today

Why do the female lions hunt?

Why does water make you wet?

Why is rain only water? (As opposed to what buddy) Why isn't it lice?

What is the brown stuff in Nutty Bear's diaper? (Um, that would be poop)

Results

Well, we got the results of Aaron's endoscopy this week and we were pretty surprised. Basically, they were looking for a type of white blood cell (these are immune cells) called eosinophils which are active in allergic diseases like asthma and eczema. There are not supposed to be any in the esophagus. If there are more than 15 in a high powered field under the microscope, that is diagnostic for eosinophilic esophagitis. Aaron had more than 100.

My poor baby. I just feel so sad that he has been suffering all of this time. Most of the patient info I can find makes reference to kids having vomiting, which he never has had, but the nurse told me that the most common complaint of kids old enough to vocalize is painful difficulty swallowing their food. In researching this online, I have also found that the esophagus motility is compromised, so the food goes down more slowly. No wonder he feels full too early.

Treatment consists of changing the diet to eliminate potentially allergenic foods. Since we are already off of milk, egg, sesame, nut, seafood---they have decided to let us continue with his current diet. The other treatment option is mixing a small amount of steroid medicine with Splenda to make a "slurry" to coat his esophagus. That is what we are currently doing with the hope that it will help him to eat and grow. It is unclear what percentage of kids "outgrow" this and what the prognosis is. Some kids get it throughout their entire GI tract. Luckily, Aaron's stomach and small intestine looked ok. I did some research tonight, and the severity of some of the kids' illnesses shocked me. But, I think to be informed will help me to advocate for him. We will recheck his weight in 4-6 weeks.

I just could cry writing this. I am just so surprised---as a doctor, I suppose this diagnosis shouldn't be surprising, but as a mom, maybe I just felt Aaron had already survived so much, he should be "immune"! Ridiculous, I know, and it could be so much worse. We are so lucky for his great development and overall good health, in light of what could have been. But, just tonight, I am going to say it. I am really, really angry that he has to deal with this. Period.

We will take any and all prayers for a good response to his medicine...because the next steps are not fun...

Endoscopy update

Well, Aaron had the endoscopy this morning. He is such a trooper. He didn't seem to upset about forgoing his morning formula for apple juice and was quite cheerful at the hospital before the procedure. Once the CRNA did his pre-op History and Physical, we were ready to go. (It is interesting watching people's eyebrows raise when they ask his medical history and I tell them.And then, ever so cautiously, "So, how is he doing on his milestones??") I took him back to the area in the operative recovery room where they do these kinds of procedures (since there is no incision, he didn't have to be in the operating room.) Once again, I irrationally wanted to scoop him up, carry him away and forget the whole event, but I didn't, of course. There were lots of personnel there, an anesthesiology resident, the nurse anesethicist, a pediatric cardiology fellow who was probably there to practice IVs and intubation. I swallowed hard but just said, take good care of my baby. Then, I held him and sang while they put the mask on, he cried and struggled for a second, then off to dreamy land. I left before they intubated him and put the IV in. So, I think it was relatively peaceful for him. He looked so tiny on the strecher.
We waited about 45 minutes and his GI doctor came out and reported there was furrowing on his esophagus, which is suggestive, but not diagnostic for eosinophilic esophagitis. We won't know for sure until the path comes back Friday or Monday. He had done fine with no complications.

Then, about 1/2 hr later, we were called to come see him. As soon as we came into the PACU, I could hear him yelling. The recovery nurse said some kids just wake up suddenly and fighting mad, and that was our boy! Poor baby, I am sure he woke up scared. He settled downed quickly when I held him, slept a little, drank a little juice, and then we went home. Whew. So glad it is over. He seems to be doing fine now, he slept and is now eating a popsicle while I finish this post.

So, maybe a new diagnosis? I hope not, but I guess we will cross that bridge...
I'll keep you posted.

3 miles of fun and inspiration

My "Big 3"

This is Sam with his T ball friend Quinn, a former 1 lb, 23 week survivor!!! Aaron riding in style...

Me and the boys in our cool cap Ts ...

So, these are photos from the March for Babies on Sunday. A big, huge thank you to all of our donors---I am convinced that these dollars will help create a miracle for someone else's baby.

There were certainly a lot of little miracles walking with us on Sunday. Tiny preemies who defied the odds. There were also too many families walking in memory of a lost child...I salute those who honor their lost babies by helping future babies. We didn't see any other cooling cap families, but we know our friends in Texas were walking "with us" in spirit. Sam and Aaron had a lot of fun. The park is beautiful and they had so many fun activities along the walk. We ran into many friends from the community and Aaron's new play group, which was nice. We talked quite a bit to Sam about how blessed we were that he was born healthy and how we were walking to make sure all babies eventually were born as healthy as he was. We also talked about how grateful were were for the doctors and nurses who helped his brother to get well. Something must have stuck, because today, his teacher told me that he bragged a lot about all the new things his brother can do and how proud he is of him. OK...that is like mommy heaven!

Today, we went to the University for Aaron's neurology appt. He hadn't seen the neurologist for about 6 months. I think I would not be wrong to say that she was amazed by his progress. He picked up his toy phone and said "Eh-Oh" and called me mama, and motored around the exam room. She examined him and thought his tone was now normal. (Aaron had very increased muscle tone in his arms and legs, which can lead to spasticity and disability, in the past) I asked her what she thought happened and she said she can't explain it. She called in one of my former teachers, whom I greatly admire and respect to see him, and his comment to me was, "Do you just sit at home and feel amazed and blessed all the time?!" Yup, pretty much. Sometimes I wonder if I overreacted to Aaron's MRI and birth injury, but then I see the incredulity on the faces of his doctors and my colleagues, and I know we are truly witnessing an unexpected miracle.

Then, we headed up to see the NICU staff. We got to visit with several of the nurses and the NICU fellow (one of my former interns) who told us to "hope for normal". There were tears in eyes, and not just mine! He was trying to run down the hall of the NICU and flirting with all the nurses.

The one concern today was that Aaron, once again, did not gain weight well. He hasn't gained any in 2-3 weeks and now is less than 3rd percentile. Not one, but 3 different people today told me that someday he will be eating me out of house and home. I sure hope so, but what to do NOW?

At least his length was 50th percentile and head 25%ile. I am staying positive---but this boy needs to fatten up soon.