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.