Never Under-Estimate the Power of Hope

anything could happen & that everything would // Cheryl Strayed

Life has surely been sweet and strong lately. I'm finding a way to weave gratitude into everything.  For instance the stumbling, the correcting the course, the difficulty finding balance.  This time around, the wisdom of knowing the journey we've been on and the path of healing, courage, of beauty, of love we are on. They've helped me stretch my soul.

Cruising With Lew from Jenn S on Vimeo. Video shows our guy stretching his calf muscles 14 days post botox/heel cord procedure. He's still really weak in the shin muscles (from years of such tightness in his heel cord) so we've been trying to help him develop strength by the stretches and activities at home.  Lots and lots of PT with his fabulous therapist Ms. L!  It's still so hard for him but he is a persistent little guy.  He does not give up.  He gets up day in and day out and begins again (and again and again). Thank you so much for teaching me the most powerful form of resilience training.

and starting off the Memorial Weekend with Lew, the Bruiser....  He had an incident in his activity chair whereby Annie our dog knocked him down (his brakes weren't on cuz we were moving toward the house) and consequently he hit his forehead on the corner of the ramp wall.  Coupla stitches later and a CT scan to be sure there wasn't a concussion. It was a deep puncture...on his forehead. Suffice it to say we had a lot of nice cuddles the rest of the weekend.  On this day, I surrender my heart to possibility, to listening, to asking, to helping me, to hope.

LJ and the Impressive Fracture

Happy Saturday. LJ is presently tearing around the house in his walker, terrorizing his cousins and brother. He's got a big grin on his mug. You'd never guess he has a fractured skull...

When last we saw our fearless hero, the X-rays were clean. That was Monday. On Thursday afternoon, we got a call from the Doc's office - the radiologists' report found some abnormalities. Please go have a CT scan right away, just as a precaution. LJ and Jenn ran off to the CT scan place and got that taken care of, straight from the swimming pool. Then back to the Doc for a preliminary read of the scan. Doc sent us to the ER at Children's hospital, since that's where they had a pediatric neurosurgeon on duty. Gulp.

I met Jenn and LJ at the hospital straight from work. I was supposed to be headed to the airport to pick up my niece, nephews and sister in law, coming in from FL. Luckily (for us, if not for them) their flight was delayed, so I was able to be in two places at once. LJ was in a great mood - he was very responsive and smiley while we waited. At this point, it had been more than a week since he banged his head, and he'd really been back to himself since shortly after it happened.

Truth be told, the three of us had a pretty good time hanging out in the exam room at Childrens. We were very concerned, but LJ calmed our fears by being very cuddly and curious. He practiced his baby signs with Jenn, played peek-a-boo and waved at every nurse and doctor that came by.

The Neurosurgeon said it was an "impressive fracture", starting just behind LJ's right ear and extending several inches. He even took the images to show his boss. (Apparently, a skull fracture can be "impressive" without being very serious, for a two year old. So that's good). Neurosurgeon checked LJ out and gave us the all clear around 8:30. The course of treatment for a minor skull fracture is to do nothing and let it heal, come back and see us in a month. By the time Jenn and LJ actually got to leave it was nearly 10 and I was out at the airport picking up the cousins.

I'm not sure what the moral of this story is, but we're all glad it ended well. It ended up being much ado about nothing, since there's no specific treatment other than time, but at least all of our questions are answered. Time to go have a fun weekend with the family.

The Week in Review...Not So Briefly

Today I had a dentist appointment and LJ had an appointment with the Developmental Pediatrician. Since neither was particularly close to my office, I made it a 3 day weekend. Now that we're back home, Jenn has asked me to make a "special guest appearance" on the blog. Last week was pretty eventful, so it shouldn't be too tough. I'll try to keep it reasonably brief.

Last Week:
Tuesday -
I found out that I passed the 3rd and final level of the CFA (Chartered Financial Analyst) exam. Hopefully this will be good for my career. It will definitely be good for my schedule in the springtime (when all the studying occurs) and for our family, since Jenn and both sets of grandparents have been picking up all my slack for the last few years, literally hundreds of hours of studying. It was a huge team effort, can't thank you enough for your help. Thanks also to my friend/mentor/boss who pushed me to enroll in the program and supported me throughout. (No more "Oscar" speeches, I promise)

Wednesday -

Jenn and Nate adopted Tango, a (nearly) 7 year old Weimaraner. Then Jenn called me at work to fill me in. Thanks to my co-workers for alertly defibrillating me when my heart stopped from the initial shock. (This is only a mild exaggeration :). There's a lot to say on this topic, so we'll dedicate another post to Tango soon. For the time being, you should know that Tango is smart, loyal and handsome. Having him around has made Jenn incredibly happy and I'm 100% behind the decision.

Thursday -
Recovered from Wednesday. Spent shocking amounts of money at the vet and the pet shop. LJ gets his first wet one on the lips. From Tango. Jenn and I go on a date to the Majestic. Great day.
Friday -
My birthday. Bad news: I'm older. Good news: Jenn & Nate make a fantastic chocolate cake. A couple of Nate's buddies and their Mom came over for dinner and cake. A good time is had by all.
Afterward, Jenn was venting LJ (attaching an open syringe to his g-tube button, allowing him to 'burp' when gas makes him uncomfy) . Usually, venting causes some stomach fluid and gas bubbles to back up into the tube/syringe we're using to vent him. Most of the time, he's almost instantly more comfy. On Friday, there was some blood coming up too, which we'd never seen before. Interestingly, LJ was calm and comfortable within a few minutes, but we were pretty concerned. After a few calls, we were off to the ER.
As emergency room trips go, this was a very smooth one. LJ was admitted quickly and he was very well behaved. The diagnosis was Gastritis (inflammation of the stomach lining) and the solution was an increase in the dose of Prevacid (antacid) and a prescription for Carafate, which apparently forms a coating over any ulcers until they heal.
We got home sometime in the wee hours of the morning with a very sleepy boy and a tremendous sense of relief.

Saturday -
All 5 of us (Tango included) have a great visit with Uncle Kenny and Cousin Dana, who were in town to visit Et. Jenn and I get the impossible luxury of a second night out in the same week, this time with friends, at another great local restaurant.

Sunday -
All five of us collapse in a heap and sleep most of the day, except for a trip to the playground...

Monday -
Today's main event was a trip to visit a Neurodevelopmental Pediatrician (NDP) with LJ. The purpose of the visit was to assess LJ's progress so that the NDP can make suggestions to help us optimize LJ's care. It was a good visit, well over an hour. We liked the Doc and LJ did very well - he was awake and alert and went along with all the tests pretty well. (Sometimes these visits can be very frustrating if LJ's not in the mood to cooperate - the Doc can't really evaluate him).

There were a lot of positive take aways from the visit. LJ was very social and engaging - lots of smiles. He also did reasonably well on most of the tests. When he reaches for things or reacts to stimuli, his movements are slow, but deliberate and pretty accurate. His motor skills are behind, but they haven't lost more ground over time, the doctor thought he was doing a lot of things at around a 7 month old level - about what you might expect for a 10 month old who lost out on 3 months of development.The Doc will write all this stuff up for us along with a number of recommendations for LJ's overall treatment.

Unintended consequence - Jenn and I went through the main points of Lewis' medical history with the NDP interjecting lots of questions about his behavior along the way. We both came away realizing how far LJ's come. When he's smiling, kicking and cooing, it is easy to forget the NG tube and the heart rate monitor and the lethargic baby on the seizure meds...Things aren't such a picnic today, but they sure are compared to 6 months ago. Helpful to remember that, every now and then.

Hangin Tough

Turns out it was a much needed vacation. Ever since we've been back all Lewis wants to do is stay up from 2am to 5 am every night and snuggle. Thank goodness he isn't screamin that entire time. He had a low fever which might be due to his bottom teeth coming in but we've also been worried about his gtube button being infected (though the nice Dr. Bob in upstate NY told us it wasn't infected). I'm about to hit nervous breakdown level after the last two days I've had.

Monday I got the call from the babysitter while I was at a doctor's appointment (it is so rare that I take the time out for a doctor's appointment for Nate let alone me). LJ had been crying the entire time I was gone and he had managed to throw up...even out his nose....so she wasn't comfortable feeding him anything. Don't blame her. Still baffled though because I thought he couldn't throw up from the Nissen surgery. Anywho. Left my doctor's appointment in a tizzy and got home to find a sleeping baby...breathing quickly...worried about him the rest of the night. But didn't have anymore vomiting episodes.

Then Tuesday I was picking Nate up from camp and I got the call from the nurse aide. Noodles mastered the art of yanking his Gtube out. The whole thing AGAIN, balloon inflated and all! She felt terrible and he was crying and stomach guts were coming all out (sorry for the grossness guys). We were back in the ER in under an hour. When we arrived, Nate asked the person taking LJ's vitals who she was. When she replied that she was the nurse, he matter-of-factly announced that "Noodles doesn't like doctors". Thankfully she wasn't offended by this and answered that she didn't blame him...she'd have him home as fast as possible. While difficult at points it was initally nice to have Nate there with me to keep the air light. As for me, I am thankful to all the nice doctors who have helped us get Lewis better:) Plus this time around, no allergic reaction. They used Optiray instead of Gastroview.

Yahh, we have been to the hospital 3 times in the past three weeks. We have his eyeball surgery schedule for July 27th and his MRI scheduled for August 12th. I am REALLY hoping we can avoid anymore hospital visits until then. Enough is enough.

At least today we had some moderate success with rice cereal. I wouldn't say he was eatting it eatting it. But I would scrape some onto his lips and gums and he got it down without gagging!This is truly a breakthrough for him given the last time he ate solids was the end of February. We will keep working on that. Because it is the hope that inspires...this is what gets us through the rough times.

Second Verse Same As the First

Things have been busy in a not-so-good way. We wound up in the emergency room Wednesday night with Lewis. I had really been hoping to avoid any hospital visits until his strabismus surgery next month...but apparently LJ decided he needed an adventure!

It all started with an appointment downtown Wednesday afternoon. I went alone because Josh works downtown and planned to meet me there. Nate had his nap over at Didi and Bops so everyone was taken care of. However, we had not planned on one of the bridges into DC being closed. Due to a shooting traffic was horrible. The appointment went fine.

Contending with the traffic jam on the way home tried my patience. It took LJ and I about 45 minutes to go .25 miles. Needless to say he was not a happy camper and decided to pitch a very loud, screaming fit. He was hungry and cranky. I threw in the towel and decided to pull over and wait for the traffic to die down. We walked a little bit, and got a tasty beverage while we waited- a glass of vino for me, milk for LJ. (Josh was in a separate car.) We boogied when traffic started looking like it was moving. LJ was still hooked up to the feeding pump.

Things didn't go south until we had driven up the driveway and I tried taking him out of his carseat. The tube caught on the carseat and something made a "pop" sound. It really freaked me out to see the entire gtube dangling from the carseat and an open hole in Noodles' stomach! When he had the gtube surgery the first time in Georgetown NICU the button popped out several times....this was our main fear that the second surgery wouldn't take. The entire balloon part of the button/tube was still completely inflated. So here we are again. Only I felt guilty that this was all my fault. Sigh.

I called the surgeon and the doctor on call told us to get the ER as fast as I could- we don't want infection nor do we want the hole to close. I called Josh hysterically and told him to meet me there. I called Didi and Bop and told them "change of plans, could you please keep Nate until we can come get him." I cried the entire way to the hospital...not just because I had disgusting stomach stuff all over my clothes but because I really was scared they wouldn't be able to put in another gtube. The doctor could not have been nicer- she said this was more common than I would think. She didn't have the correct size button but luckily I had an emergency back up one in the car. When the new one was in place, she gave him a dye contrast to see via xray and check the placement. After waiting about an hour, we noticed a giant hive on the node under his armpit. Then more hives started appearing. We called the nurse and he got the doctor. Now it seems Noodles is allergic to Gastroview! We had to stay for him to be observed.

I do have to say that it wasn't too bad as far as ER visits go. It could have definitely been worse. Mostly we just hung out while he got benadryl pumped into him & the docs made sure the allergic reaction did not cause any trouble breathing.

Everybody's home now.