Friday, December 4, 2009

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....

Friday, November 20, 2009

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.
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Monday, November 9, 2009

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!





Thursday, September 24, 2009

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




Friday, August 28, 2009

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.





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Tuesday, August 11, 2009

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.

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Tuesday, July 7, 2009

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...

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Wednesday, June 24, 2009

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.

Wednesday, June 3, 2009

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.

Thursday, May 28, 2009

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!

Friday, May 15, 2009

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)




Saturday, May 9, 2009

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...

Wednesday, May 6, 2009

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.

Tuesday, April 28, 2009

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.









Tuesday, April 21, 2009

Disney, Development, and other Adventures







Well, the whole family packed up and buoyed by my parents' generosity, spent 2 glorious weeks in Florida. Most of our time was spent on Marco Island, relaxing by the pool and at the beach. By relaxing at the pool, I mean putting swim diapers on and pulling them off, applying sunscreen, constant reminders to "Don't run by the pool!", various games made up by Sam including ride the bronco (water version, with various adults as said bronco), water creatures, and of course, football, volleyball and badminton in the water. I do not mean, as I may have in a previous life, lying by the pool reading the latest Jennifer Weiner novel. But...it was GREAT! Aaron loved all the water activities and went bravely into the splash park and pool. He was a little more cautious at the beach, but by the end of the beach was throwing a tantrum when I would try to hold him back out of the waves.






Matt and I also were brave...or insane, depending on your perspective...in that we took the boys to Orlando to Disney for a couple of days, during spring break. Actually, our day at the Magic Kingdom actually had magical moments. We went early and it was completely worth it. Aaron and Sam both enjoyed the Peter Pan ride, Winnie the Pooh, Dumbo, etc. Aaron especially loved the Small World ride and despite the soundtrack, the rest of the family had fun trying to pick out which countries were represented. Sam knew quite a few! We went back to the hotel and napped in the afternoon, had a cheap take out dinner, and went back late to go on more rides, virtually free of lines. The whole day went very smoothly. The next day...not so much... we went to Hollywood Studios, otherwise in mind now known as Hollywood Hell. Long story....long day...but if you go... you have to do the Toy Story ride. It is essentially video games in a Tilt-A-Whirl and was great fun for all involved.



Aaron was completely game for all the rides and was actually disapponted when they ended. He will definitely be our roller coaster boy. Big surprise. Sam was unimpressed with the coasters, but I think really did enjoy the parks.






Speaking of magical, those of you who follow my bloglist may have read about my friend Retrogirl. A magical time for her...I am so excited to watch the next 8 months of her life unfold and look forward to welcoming her into this crazy, wonderful sisterhood of moms! She is going to be a great one!






Aaron had his developmental assessment by his Early On coordinator today. We needed to come up with our plan for the next year. He tested within normal range in all categories. They assess fine motor, gross motor, social and emotional, problem solving, speech. His coordinator came with written goals for his contract today, things we'd like him to achieve in 6 months. For example, in 6 months, Aaron will say 5-15 words. However, she said that in the time she was there, he said 4 words, so she upped his goal to 10-30 words! He was amazing today, pointing at some pictures in books, following a few simple directions, pointing to his head when asked, saying Hi (or something that sounds a LOT like it) and waving. So, for the next year, we will be doing much more of our Early Intervention in a group setting, in a playgroup at the school. I think this will be very good for Aaron and I both, especially since the big man will be off a KINDERGARDEN in the fall, sniffle.



Tuesday, April 14, 2009

March for Babies

Aaron in March 2009, mowing the lawn!


Aaron in March 2008 wearing his cooling cap, on the ventilator


As I referenced in earlier blogs, we feel compelled to do something to give back for the miracle we have been blessed with. This year, we are going to walk in the March for Babies but shunt the money to UM for research on cooling cap. Here is the flyer I sent out to promote our walk:


The birth of a child is always a miracle, but some children enter the world with greater challenges than others. During labor with my second son, my uterus ruptured and our son was found outside of my uterus in my abdomen during an emergency C-section. Many babies don’t survive this horrible birth complication. Aaron was born lifeless on March 6, 2008, resuscitated and immediately cooled with ice packs awaiting trasnfer to Mott Children’s Hospital. He suffered significant lack of oxygen and his future was very uncertain. As a pediatrician, I feared the worst. He was treated with a new cooling technology and anti-seizure meds to minimize brain injury. Today, Aaron is a wonderful, healthy toddler! We are thrilled with his progress and firmly believe his life would be much different today without the care he received.

We are walking on April 26 to honor Aaron and the doctors at St Joseph Mercy Hospital and C. S. Mott Children's Hospital who saved his life. The funds we raise will go toward cool cap technology and the research that will be so crucial in saving other babies.

The cooling of an infant's brain decreases both death and the burden of disability in survivors, but there is still room for improvement. Researchers believe that it's probably not the mode of cooling that matters (i.e. head vs. whole body), as much as just getting them cooled. Doctors at Mott are presently working in the lab on combination therapy,
using cooling techniques along with FDA-approved drugs. In clinics, doctors are using technology to determine how to enhance the ability to predict an outcome while in the cooling phase.

The money we raise on this walk will help these doctors continue their research into the neurological problems of infants. We hope to spare more children like Aaron and their families heartbreaking disability and pain. Thank you for your participation and your donation.


Lauren Gold and Matthew Jane
Here is the form, if you need it in document form, you can email me-
Please write Aaron's name on your document.
I want to make a difference for the
University of Michigan Health System with a gift to "Cool Cap Technology"
at the C.S. Mott Children’s Hospital and Women's Hospital.”

Name (please print) ________________________________________________
Street Address ____________________________________________________
____________________________________________________
City ______________________ State ______ Zip _______________________
Phone _____________________ e-mail _______________________________


Enclosed is my gift in the amount of: $______________
□ Check enclosed payable to the University of Michigan
□ Please charge my gift to:
□ Master Card □ Visa □ Discover □ AMEX
______________________________________________________________
Card Number
_____________ ____________________________________________
Expiration Date Signature
OR

Please accept my pledge in the amount of: $___________
Initial Payment enclosed (optional): $___________
Balance: $___________
I subscribe to pay the balance:
□ Monthly □ Quarterly □ Semi-Annually □Annually
over a period of _______ years beginning ________ (month) ________ (year)
or as follows _____________________________________________________
________________________________________________________________
Signature (required for all pledges): ___________________________________

For more information, you may contact the
Office of Medical Development at 734-998-7702 or 800-468-3482
All gifts and pledges will be acknowledged for your records.
All gifts to the University of Michigan are tax deductible as provided by law.
For your convenience, pledge payment reminders will be sent to you according to
the payment schedule you have chosen.
(UM account _____________)

Tuesday, March 24, 2009

1 year later...

Matt, Samuel, and I brought Aaron home from the hospital one year ago today!! We had his bris and had a small celebration with family. I remember being so relieved and excited to have him home, but with such a sense of fear, a weight that seemed suffocating. What a difference a year makes. Now, although I still have my worries ( I didn't have a personality transplant!) I feel so much lighter and more optimistic.



On that note, Aaron was evaluated today by his Early On coordinator and did great, meeting all his milestones across all parameters and exceeding some! He signed "more" for the first time while she was playing bubbles with him. He is pointing at things he wants and saying "dat" which she thought was great. He also says Mama, Dada, and repeats Bruva for brother. He also says something that sounds like Dog and Ball. He shoots baskets, it is so cute! He loves speed, I was racing him down the driveway today in the wagon and he was laughing so hard.



Sam is writing so well, he wrote a story for Aaron the other day and is constantly asking, "Mom how do you spell...?" He is so sensitive, he is very concerned with prey and predators. He can't believe that his chicken nuggets are actually made out of chicken! I didn't go into too much detail because I can't handle nascent vegetarianism on top of our myriad of food allergies.



On that note, Aaron was sick on the day of his endoscopy, so we have delayed it. He is gaining weight, albeit at the 4th percentile, so we will see how he is doing after our upcoming vacation and then proceed. He loves soy ice cream, which I think may be helping with the weight gain.



Matt and I just got back from our first weekend away without the boys since Aaron was born. We had a great time and the boys had lots of fun with their grandparents.
video

Sunday, March 15, 2009

Sisterhood

If you were a little boy...what would you want in an aunt?



She'd have to be lots of fun. Willing to play sports and games with you, act silly, cheer you on at sporting events. She'd be among your biggest fans and delight in you. You'd like her to live really close, but if not, you'd be happy to know she made it as often as she could for special occassions. You'd want her to be there when you were born, and weep with joy when she held you for the first tiime. You'd want her to be adventurous. You'd love her to always bring a little something when she came to visit. You'd like to hear how she rushed to be by your side when your family needed her most. And if she came with a nice, talented, football fan, video-game playing companion, well, all the better :)

My boys have that and more.



If you were a big sister, what would you want in a little sister?



She'd be your first playmate. If you were a little stodgy, she'd have to lighten you up. She'd be just competitive enough to always prod you to be your best. She'd always be in your corner. She would be the one you whispered to late at night, told all your earliest girly secrets too. Let's be honest, you'd want her to be the student to your teacher and let you choreograph the dance and swimming routines...but you'd be ok with switching roles sometimes. She'd have to be lots of fun and make you laugh until you cried. You'd want to protect her, always.

I had that and more.



If you were me, what would sisterhood mean to you?



It means having someone so different from you and so much the same. It means finishing each other's sentences and having some spooky connections. It means being so proud of my little sister- her spirit and smarts, her tolerance and tenacity. She makes me want to be better. Sometimes, it has meant fear...when her adventurous spirit collided with my worrywart ways! (Can I say transitional?) It means always having a sounding board and trusted advisor, a shoulder to cry on. It means unconditional love and support from someone who truly knows me, all my flaws, and loves me anyhow. It means fashion advice! It means everything to me and I can't imagine my life without my beloved sister---Sisters are forever! And yes, forever is way way past 30!

Happy Birthday Andie, we love you so much.






video video

Friday, March 6, 2009

HAPPY 1st BIRTHDAY AARON!




Two years ago, we began seriously thinking of having another child. Another baby to cuddle and nurse, rock and sing to, watch grow. A sibling for Sam, a best friend, sometimes a rival, a playmate, someone to mock us with in our old age! A child born of love and devotion, a fourth member of our family, an individual among a family of strong personalities.




Then, you were with us. Safe in your watery cocoon. We rejoiced. And already, you were different. I felt different. You kicked and squirmed and moved. We predicted that you would be our "wild one". We went for our ultrasound and giggled as you hammed it up for the sonographer, showing only your face. We heard Sam would have a brother and I dreamed up matching outfits, muddy boys, hearty appetites, big bear hugs. We debated names.




One year ago, you were cheated of a safe, smooth entry into this world. But you, my strong boy, fought your way back to us. Firm hands, guided by G-d, restarted your tiny heart and helped you to breathe. You endured more than any baby should have to. Wise doctors sent you into an icy dreamland. Hours old, they wheeled you by me on your way to another hospital. I squinted to see you, longed to touch you, wanted you back inside me where it had been safe. Your dad and I named you Aaron- "Strong mountain" and you were gone. Your daddy, grandparents, aunts, and uncle held vigil at your bedside, and brought me messages of your determination, your adorable head of hair, your beautiful face. They brought pictures, and through it all, I could see for myself. We were so scared, shocked, loved you so much, wanted so badly for you to be healthy.




One year and five days ago, we held you for the first time and I was yours. About two weeks later, you came home. Your family celebrated, your brother cuddled you and we were so grateful.




10 months ago, you smiled and sunshine peeked out through the clouds. Your smile could melt glaciers! 8 months ago, you laughed, and it was music. We stretched and sang, worried and wept. Let me tell you---you could cry with the best of them! You rolled toward your brother and he began to be your devoted coach. You scoffed at sleep and nourishment, what superbaby needs such things!?




6 months ago, you sat up. I exhaled. Soon after, you CRAWLED. Of course you did, and as predicted, you are our wild one. Wonderfully stubborn and strong-willed and sassy! Temper tantrums way before 2! But also, so sweet, my snuggle bug and your daddy's pride and joy. You and your brother motored around the house and I could hardly believe my eyes.




1 month ago, you walked. For me, it was like watching the moonwalk, no, better. I dream again, and I am sorry I ever underestimated you. I won't do it again, dear son.




Today, you called me mama. You played on the playground with your aunt and your brother. You ate and actually enjoyed your birthday dinner (chicken strips, fries, peas and egg-free, dairy-free chocolate cupcakes :)) You made a big mess. You tumbled head-first down your new slide, fearless. You "read" constantly and so intently.




Today, we celebrate your life. I cannot imagine life without you. You are so special, so unique, our little Cinderella man, your brother's cha-cha, your Bubbie's superstar, little Saba hair...so today, for our Aaron Jacob- with thanks to Sarah McLachlan- the song that always makes me think of you...my not so ordinary miracle




It’s not that unusual when everything is beautiful


It’s just another ordinary miracle today


The sky knows when its time to snow


You don’t need to teach a seed to grow


It’s just another ordinary miracle today


Life is like a gift they say


Wrapped up for you everyday


Open up and find a way


To give some of your own


Isn’t it remarkable? ....


Please don’t throw your dreams away


Hold them close to your heart


Cause we are all a part Of the ordinary miracle today






Wednesday, March 4, 2009

Changes


Well, Aaron's 1st year is fast coming to a close and it is time to change the title of this blog. A big thank you to my BFF Retrogirl for showing me how to change my focus, both in the blogosphere and in real life. I have struggled with the title (and the focus) a lot this year. This was certainly a year that was, in many ways, centered around Aaron---but there is definitely another center of attention in my life! Both in the blog and in real life, it has been a struggle to not lose sight of our big boy's needs in light of his brother's challenges this year. Also, as Aaron continues to grow and thrive, he is and will be so much more than his heart-wrenching entry into the world. My hope is that the difficulties of his early days will slowly fade with the glories of all his upcoming "firsts". Every inspirational story you read about kids overcoming challenges seems to bear a common theme: My parents treated me no differently. So, in that spirit, this blog is now officially about BOTH my busy, brilliant, bossy, beautiful boys.


Friday, February 27, 2009

10 Honest Things about Myself

So, a fun post I got from my dear friend---can I really be totally honest???



1. I still feel daily regret for my VBAC decision and so much guilt for not enjoying Aaron's 1st year more...I can honestly say there was not very much about the first 4 months that I found enjoyable, though I love my little boy with all my heart.



2. I don't understand people who say regarding any type of chocolate dessert--"It's just too rich for me." What!?!?!



3. I listen to right-wing talk radio. I don't know why. Some weird form of masochism.


4. I use to feel pretty confident about my appearance, but lately it just makes me shudder.

5. I have always been happy living in Michigan but lately find myself fantasizing about starting over somewhere else.

6. I took my husband's hand on the night we met at the bar, walking down the street. He said, " Oh, so you are one of those girls" I was absolutely mortified, especially since I actually really didn't hold near total strangers hands on a regular basis. Thinking about it now, I honestly can't remember the last time we held hands walking down the street...but I'd still like to!

7. I occasionally put on the TV for my kid so that I can finish a chapter. Boy, that one is hard to type!

8. I took care of a patient with food allergies and poor growth before Aaron and was very inwardly critical of her mom. I feel bad about that now.

9. I still have flashbacks of Aaron's birth on a regular basis. Especially in my bathroom.

10. I honestly can't think of another honest thing that I am willing to share with the public!

Monday, February 16, 2009

Fathers


Well, we are taking a break from our regular programming, a celebration of the lives of my two littlest men, to celebrate the life of the er...most senior man in my life, HAPPY BIRTHDAY DAD! BTW, these are in no particular order and in no way are meant to be exhaustive-


I am thankful for my father because...

1) He gave me life. Well, as we know, Mom's work on that one was far more extensive, but still...she couldn't have done it without him :)

2) He loved and valued my sister and I so much that we would never settle for less from any other man.

3) His arms were still a haven, after all these years, during some of the darkest hours of this last year.

4) I love that my dad chokes up so easily.

5) Few people can crack themselves up as well as he can :)

6) He works tirelessly to provide for his family.

7) He is amazing with babies and small children, and my boys adore him.

8) He is really smart...and maddeningly right.

9) He had a really close call a few years back, and although I wish he would take better care of himself, I am so glad he is doing better and has quit smoking!

10) He has always demanded the best from us AND has always believed we had it inside us to achieve anything.

11) He taught me how to drive, how to play Blackjack, helped me with my math homework, taught me how to ski, funded our horse show years, cared whether I saw R rated movies, always lends a hand (or a dollar), moved me into/out of dorms/apartments/houses, helped sweep up the Dunkin Donuts....and more....

I love you Dad, Happy Birthday!

Friday, February 13, 2009

Cooling cap update and fun video

Well, as Aaron approaches his 1st birthday and does something new everyday, I am reminded constantly of where we were just a little over a year ago. I remember that last month of being pregnant, and everything that followed...
I recently emailed the wonderful physician who runs the cooling cap program at the hospital Aaron was transferred to in order to find out what we can do to help the program. Here is his response:

Lauren: It's good to hear from you. We continue to cool babies with suspected HIE, averaging just over one a month. Former clinical trial sites in North America, Europe, Australia, New Zealand (and I think Israel too) are generally offering cooling using their former study protocols. Nationwide, beyond the former study centers, I suspect there is increasing use of cooling, but it is hard to get good data on this. I recently asked the Vermont-Oxford Neonatal Encephalopathy Registry, which tracks use of cooling, if they have up-to-date data for 2008 but haven't heard back yet. Within the region we've seeded centers in Grand Rapids and South Bend. Further afield I've helped centers in Montreal (which serves most of the province of Quebec), Honolulu (covering all of HI) and Kansas City get programs started.
You'll be interested to know that results of two more clinical trials were presented at the meeting "Hot Topics in Neonatology" in DC in early December. These European trials (the TOBY Trial and the NeoNeuroNet trials, both of whole body cooling, corroborated the results of the first 3 trials, i.e. cooling decreases both death and the burden of disability in survivors, but there is still room for improvement. We are getting the sense that it's probably not the mode of cooling that matters (i.e. head vs. whole body), as much as just getting them cooled. One more major randomized trial (ICE, that stopped enrolling July 2007) will report results about a year from now. That will be the last of the trials in which cooling is compared to a non-cooled control group, except for an NIH network trial that is evaluating the utility of cooling in babies who present later than the currently accepted time window of <6 hours from birth. They are recruiting babies that for whatever reason don't show up until 6-24 hours after birth. We hope to join that trial network this year.
Where is cooling going from here? There are a couple of directions in research, both focused on improving on the results of cooling.:1. Lab: (Pediatric Neurology) and I are doing experimental work in our lab evaluating combination therapy with early post-HI prophylactic anticonvulsant and cooling (several different FDA approved drugs), to see if there are combinations that are better than either drug or hypothermia alone. This is funded by a 2-year NIH grant and some gift funding from a family of a cooled baby from several years ago. The hope is that this work will help select the best candidate anticonvulsant for a human clinical trial of the same concept. Other groups around the world are evaluating other drugs in combination with hypothermia.2. Clinical: Pediatric Neurology and I have begun a study (funded it part by a grant from the Child Neurology Foundation) to simultaneously evaluate EEG activity (background and seizures) and brain metabolism (using a new monitoring modality call Near Infrared Spectroscopy or NIRS) throughout cooling and re-warming, to determine whether these techniques put together can enhance our ability to predict later outcome while we are still in the course of cooling. The idea is that if we can predict a group of babies who are destined to not do well with the current 72 hour cooling protocols, we could in the future propose new studies in those babies, for example comparing outcome after 96 or 120 hours of cooling vs 72 hours. The Child Neurology Foundation funding is sufficient to pay for the EEG and NIRS monitoring in the neonatal period, but we are now writing grants to seek funding for the 18 month developmental follow-up of these babies. So that is an area in need of support.
Please feel free to share the above update with your support group. I don't know everything that is happening but I am pretty well connected with the current state of cooling.
On your final point, we were glad to be able to help, and thank you for entrusting Aaron's care to us, at a very difficult time, and with a very new technology
.

So, I am currently looking into ways to help fund a small part of this research, now and in the future. Research in Pediatrics is generally very hard to do, and actually does not get the funding you might expect. As you can imagine, it takes a leap of faith on the part of researchers, and more importantly parents, to even allow the research to be done. (Can you imagine the first brand new, shell-shocked parents who were offered the option of basically freezing their tiny babies with no idea what side effects or outcome there could be?!?) Then, you have to find ways to pay for it. And the basic science, non-glamorous, lab research is so important. Before the cooling technology made it into any NICU, lab animals were deprived of oxygen, cooled, and then studied. I am not sure, but I am guessing some of them were sacrificed to study the effects on the dissected brains. This is the reality of scientic progress and I am so grateful for all of it. I don't believe Aaron's story is possible without it. So, I will be dedicating a part of my life from now on to try and promote this cause. I think there is so much potential. Perhaps cooling may help babies who have a neurologic insult in the first month after birth (like a near crib death or shaking or an undiagnosed heart defect). Also, I think there is a lot of room for spreading the use of the technology to more kids.

Here is a new video of Aaron and Sam playing one of their favorite games. It makes me a nervous wreck, but they have so much fun. I think I need to get Aaron a bike helmet...


video

Tuesday, February 10, 2009

Another appointment...

Boy, my lens has certainly changed since becoming primarily a parent of a patient, rather than the health care provider, as of late. Generally, I still think we kiddie docs provide very good care and we have been blessed to have great doctors, some of whom are also friends. But, I just never realized how much energy gets sucked into the doctor visit vortex when you have a child with chronic problems. First, there are just the logistics of getting everyone to the visit, working around work schedules and naptimes and mealtimes and day care. Then there is the anticipation of (in our case) "Did he gain weight?" and the comparing of different opinions. When you have a visit every few months with a healthy infant, the doctor visits are mostly something to look forward to. With Aaron, it hasn't been that way. There is the anxiety around whether he's grown, how an outside person perceives his development, whether there will be some new concern lurking around the corner. Then the reports back to the grandparents. My anxiety seems to have mellowed out to just a feeling of general fatigue and numbness lately. I think I have finally achieved some of that "even keel" thing that Matt has going, not too much despair about not-so-great news, not too much anticipation or excitement about better news. No, I didn't start Prozac...Anyway, a newfound increased respect for the special needs parents of the world. What we are dealing with is not nearly as complex as some of the kids I have seen, and I am so impressed by the strength of those parents.

That said, today's visit was with our dear allergist. He is great---and has been so honest and helpful from day one. Aaron still has many blood tests for allergens pending, so we will know more in the upcoming week. We skin tested only to milk, soy, sesame. The doctor thought it was too soon to see any significant improvements in egg, etc, so we didn't put him through that. He had reactions to milk and sesame (which explains the hummus rxn, it was the tahini) but not to soy. So, good news, we get to try adding soy formula in slowly starting this weekend. If he tolerates it, we will no longer have to spend so much money on special formula and we can try a whole host of new foods. Unfortunately, Aaron was down 2 ounces from his visit with our PCP 2 weeks or so ago. He has of course been sick with a cold and ear infection since that visit. He prob lost some weight and is gaining back---we'll see. Our allergist thought now he should definitely have the endoscopy in March, and he had pushed it prior to this, so I guess we should start preparing ourselves that it has to be done. Here is a link to info about EE-
http://www.neocate.com/aaa_neocate/0,478,156,150,89,0.ashx

On other fronts, Aaron was seen by the speech therapist this week. She thought he fell within the normal range. She thought he had made great progress, as do we. She even gave him credit for quite a few "words". He seems to be saying "Doh" for dog, and "waddat" for what's that. He also seems to be saying Mama, sometimes, when he feels like it :) It is great.

New foods to try this week- Rice Crispies with formula mixed (have to find a new breakfast food, Aaron seems TIRED of coconut yogurt) and pure coconut milk (as recommended by the doctor) Unfortunately, due to his seed allergy, sunflower butter will be out for Aaron. Too bad as it is Sam's favorite!

Friday, January 30, 2009

STEPS!!

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

video
video

Thursday, January 29, 2009

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.