Hey, batter batter

I have heard there are troubles of more than one kind. Some come from ahead and some come from behind. But I've bought a big bat. I'm all ready you see. Now my troubles are going to have troubles with me!

~Dr. Seuss

Is It Friday Already?

I think LJ is really able to see things so much better. He is just such a different baby!He is making tiny bits of progress eating rice cereal from a spoon. But he still prefers to eat from our fingers. We have lots more work cut out for us but I ran into a very supportive mom at the gtube clinic who gave me lots of helpful information. Her son, 2 years old, was there to get his gtube taken out- he'd learned to eat orally in March and hasn't used it since! I'm going to call one of the feeding specialists that she said worked miracles for them. Of course, she's so good she doesn't take insurance so we'll see whether she'll even have time to take our case. Encouraging news though. Let's take a look at our week....

Number of visits from the Physical Therapist- 1
Number of times Lew smiled- 46
Number of times he had Aquatic Therapy- 1
Number of visits to the Gtube Clinic- 1
Number of visits from the Occupational Therapist- 2
Number of ounces gained since last week's visit- 9
Number of times Noodles reached for my hands to pull himself up- 8
Number of times he tasted avocado- 5
Number of times he wore his new hand splints- 4
Number of visits from the Speech Therapist- 1

When does the fun ever stop?

Noteworthy. Sorta.

This post is a bit random. But it's mostly about our farm share and a tiny update about Noodles. Josh had a business trip yesterday so we were flying solo again. I had to take LJ in the afternoon to Dr. GI because his gtube wasn't fitting snug again (note: we were just there last week for the same problem). They diagnosed the problem as granulation tissue. Essentially the skin tries to re-grow where the hole is because it thinks it needs to regenerate. In most cases this would be a good thing, but for LJ it means that his grossness can leak from the edges and it's uncomfy. It burns. So the nurse used a silver nitrate stick to burn off the granulation tissue. We have to go back next week to get the same procedure done. I think it hurts me worse to watch then it actually hurts LJ. He now weighs 17 pounds!! Nate was a very good boy during the appointment. He made a choo choo train out of all the chairs in the waiting room! Hey, it kept him busy:)

On the food front, we have been given a Rx for a special, heavy-duty formula that packs the nutrients and calories in. After wrangling with the insurance company (they won't pay for it even though it is medically necessary and it's prescription only) we found a way through Medicaid. The month's supply arrived earlier this week. Also arriving earlier this week was our farm share.

One of the best things about the summer is our farm share. I look forward to the challenge of making something with all the goodies that arrive. Some veggies I have never cooked with before. Others are clear favorites. Well, tomato season is upon us! You say tomato, I say tomato (okay, that doesn't really work in writing since the spelling is the same). With the abundance of colorful , delish tomatoes we have been making summer favorites such as: Greek tomato, cucumber and feta salad, tomato pie, bloody marys!@#$, gazpacho, and roasted tomatoes.

And since Nate decided NOT TO NAP yesterday after LJ's appointment, I suggested we bake a cake to distract him...and so that he didn't destroy the furniture! So I figured I ought to do something with the plethora of zucchini we got from the farm share. Nee the Zucchini Chocolate Chip Cake. He loves to "crack the eggs". After we dumped them into the batter he smiled from ear to ear..."Now let's see how this works. Uh. K. We have to push this button on, mommy." We sprinkled a little cinnamon-sugar on top of the loaf pan before we put it in the oven. The epicurious recipe didn't have this step but I think it goes really well.

Other zucchini creations have involved zucchini pancakes, zucchini and corn succotash, the summer favorite of simple grilled zucchini. But in the end, last night I cheated. And since Josh was out of town, I took both boys down the street for some pizza. I gave LJ some of the baked pizza dough the restaurant serves as bread right when we arrived. He just waved it around with his hand until it dropped in his lap. Then as if on cue, Lewis started smiling. A lot. And then his face turned red. And then I knew what was going on. The pizza hadn't even arrived and he was working on a BM! Just my luck. We had to eat and run. Good thing I had some tastey cake to bribe Nate with so we could motor home and get Noodle's diaper changed pronto!

And I Quote

“Life is an endless struggle full of frustrations and challenges, but eventually you find a hair stylist you like.” ~Author Unknown

L Cool J

Thought I'd share a before and after photo with everyone. Dare I say it, LJ's recovery is coming along beautifully.

Before:
















After:

Encore Une Fois: Surgery

How do we manage to get ourselves through today, any day, weeks, years? Of course, much needed get aways. The vacation with my cousins and Aunt Lenore and Uncle Vic in Hilton Head was wonderful: the smell of coconuts, warm beach, exploring a new place, yoga everyday, long hot showers, the sweet sound of kids' laughter (and meltdowns;). So today, we're making a break in our minds. More precisely, I'm playing mind games. This is my weapon of choice and my strength to get me through another surgery for Lewis.

It's 5am and we have a sitter coming in an hour to hang out with Nate while LJ prepares for Strabismus Surgery to correct his eyes at 7am. We hope the medical experience breaks a record and has him home and comfortable by the afternoon!

Think good thoughts for LJ please.

Edited 1:45pm LJ’s operation is completed with no problems and he’s home now, sleeping. He is apparently in no pain although he looks like he got punched in the eyes. His eyes look better (not crossed) but it will take his brain a number of weeks to figure things out and give him better sight. The doctor thinks he will likely have to do another operation later to fine-tune the results of this one. Thanks for all the well-wishes and positive thoughts!

Vacation in Pictures

Off To the Beach

It was a good week PT, OT and ST-wise. LJ did great in Aqua Therapy. I have a few things to work on now when we get to the pool. On land, Lewis also held the crawl position for 45 seconds...three times! He has also started overcoming his oral aversion with me giving him rice cereal as well as a teething toy in his mouth for a few consecutive days now. Next step is a swallow study at the end of August. I'll be away from this space for the next week or so while we go on our vacation with my cousins' families and my aunt and uncle.

This is the best thing we will have done all year since Lewis was born, as it's pretty much a week of playing in the sand, riding our bikes, yoga every morning, cooking great meals, reading, unplugging... and, well just generally hanging out.

And really, what could be better than that?

Have a great week! We'll update the blog on Monday, July 27th once Noodles' eye surgery is underway.

Bits and Pieces...

Uncle Jon is coming to visit today! This has inspired me to bake something for dessert tonight. So in addition to the standard bread chronicles I thought I'd show off the Chocolate Chip Peanut Blondies we made. Just writing about them makes me get a sugar high. But we are going to serve them with vanilla ice cream and chocolate sauce on top....because Happy Weekend to us! Mmm, all so good. Heaven.

I really don't know where the week went. The summer always seems to fly by much faster than the rest of the year. We had a follow up appointment with Dr. GI. There was granulation tissue around the hole so they burned it off with a silver nitrate stick. The nurse said it didn't hurt Noodles, but we'll let him be the judge of that. Hopefully the button will fit better now. And drumroll please! I changed his tube/button ALL BY MYSELF. With the nurse's moral support of course. But I did it. No more trips to the ER. The biggest lesson I learned was not to let him pull it out right after a feed. (Note to file...there's lots of oozing stomach contents). Props to me:)

We also got brave and attempted a trip to the pool. (I'd be most happy if this activity could occupy most of my time these days.) Didi met me there to help with the boys. We split up and I was an old hat to Nate anyway, so Didi went swimming with him in the big-kid pool, while LJ and I rocked out in the baby pool on his new baby boat pool seat. He wasn't a happy camper at first but once he got acclimated to the water he relaxed for about 45 minutes.

I'll skip over therapy since PT, ST and OT weren't that great this week. We'll chalk it up to just being an off week. He's gained 1 pound in the last month- fatty now weighs 16 pounds and 4 oz. But next week we are going to Dr. Pediatrician and Dr. Pulmonologist and a pre-op appointment for the eye surgery. In addition, we are trying out Aquatic Therapy with Noodles' physical therapist. So that's what we're up to. I'm a little worried about next week, but we'll get through it.

Milestones....

Happy 4th of July. We're all doing just fine. I might even venture to say we're doing great, which sort of shocks me a little bit, since we were unable to say that for so long.

LJ's gtube has stayed in pretty well for the last week. A few days ago we got a foam "donut" that goes around the button on his tummy and helps him sleep on his stomach - which he's done the last three nights. Even better, Lew has slept through the night the last couple of nights. He's still fussy and demands to be held a lot of the time, but he's also smiling more and more and making lots of happy noises. The other night, he spent an hour on the activity mat cooing and smiling and watching the Nats game with Bop. It is so fun to see his little personality coming to life.

The gtube is almost second nature now. It has its challenges, but it is certainly much better than the NG tube. It is occasionally a little embarassing when we have to feed him out in public...but we just go about our business and if curious onlookers ask questions we try to educate them. Sometimes I even attempt spoon-feeding him some applesauce or sweet potato baby food-somedays it's harder then others. I'm waiting for him to just explode with possibilities in the next few months. I'm excited yet at the same time it's bittersweet.

Colorful Happy Family Portrait

I know I don't need more stress in my life...and preparing for a family portrait can be stressful. But I bit the bullet (mind you there were several times I felt like cancelling) and prepared for as much as possible. What to wear? Will Nate behave (yes, if you bribe him with chocolate chips!)? Will it be too hot? Bop took the following photos a few weeks ago and the photo shoot was at Fort CF Smith. It was worth every bit of the planning! I am ecstatic with the photos and will have such good memories of my little men for many years to come. Thank you to the excellent photographer.

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.

I love you THIS much....

Nate and LJ's daddy is strong and powerful, yet tender and caring.

Frankly I'm sure all he wants is eight more hours a day to use as he sees fit...so no ties, Brookstones gadgets, socks or cuff links here.....

Now, Nate comes home from school telling us knock-knock jokes. My dad used to tell a joke, about the birch and the beech.....I guess most of us feel sometimes that we are play-acting at being adults:) I have come to realize that maybe he too, sometimes felt like he was still just a little man. Time sneaks up.

Happy Fathers' Day to the men in my life. really, there aren't words. I wouldn't trade you for all the hot wheels in the universe.

Field Trip

Ah. Sitting by the lake- chatting, resting, sunsets, cool nights, enjoying good company, daydreaming about moving here. Pines burgers, a bloody mary for me, Not My Dad's Soft Serve ice cream cones and the farmers market. To the lake and back. So today I'm feeling peaceful. LJ and I are driving up to Cayuga Lake to hang out with friends Ginger and her little guy, Jimmy. The hubbies will drive Nate up later this week so everyone can get in on the action. Hope you have a good week.

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.

Went to the Doctor and the Doctor Said

Well. Uplifting.

This week's visits were all about the Gtube surgery. We've been concerned that LJ's wound on his stomache might be infected. So a visit to Dr. O and the GI doc as well as Dr. Surgeon.....well...they were all pleased. So far so good, no infection. But, the bad news is he lost weight. And he's not sleeping so well- on his back or side that is. So we have to fatten him up before his eyeball surgery next month. And Josh is going to engineer a "gtube pillow"...yes folks we might patent it. Essentially we need a donut hole pillow that can be strapped onto Lewis to pad the gtube and enable him a much needed night's rest on his belly!!

We got the all-clear for OT, ST and PT. So let the games begin.

Stuffed

Before and after shots....

The show must go on and Noodles has gotta eat. Due to his surgery, and his front teeth coming in, sleeping on his back (he prefers his tummy) or a reaction to too much volume of milk at once...we can't put Lewis down or else he cries incessantly... anyway. The point is, it's been quite a week. He's also made a poop. Hooray! But that took some time... after all, he's still getting adjusted....

Home.

LJ was discharged around 4. He's uncomfortable and fussy, but doing well, so far.

Quick Update

Long day, but no complaints. The surgery didn't get started until nearly 5 o'clock as an emergency took precedence. LJ was an absolute trooper, especially considering that we weren't allowed to feed him anything after 6:30 this morning. Aside from the delay, everything seems to have gone very smoothly. The surgeon had no problem putting in the g-tube. LJ is lethargic from the anesthesia, but he got some morphine for pain just after the surgery and the surgeon expects the pain to be manageable with Tylenol from here on. Even better, if everything continues to go smoothly, she thinks that Lewis may be able to come home tomorrow night.

At the moment, our man is on an IV and trying to get some rest. In the morning, they'll try some clear liquids through the new g-tube. If that goes well, formula in the afternoon and potentially, bedtime at home tomorrow night. Thank you for all your thoughts, prayers and general positive mojo.

Go Time

We just got LJ registered and are hanging out in the hospital waiting area. At the moment, LJ is scheduled for 1PM surgery, but the schedule seems to be pretty fluid - they just assigned us that time last night. We had a great morning - LJ had speech therapy and allowed Jenn to put her pinky in his mouth, without gagging or crying, for the first time in months. He sucked on it a little bit - enough to get Jenn and therapist in tears. Or maybe just enough to remind us that anything we can do to get rid of the NG tube is a good move. When Didi arrived to wait with us here, he gave her a big smile - he's been happy all morning.

Surgery to put in a g-tube is expected to take couple of hours, give or take, and LJ is expected to stay at the hospital for a couple of nights.

Thanks for all your thoughts/prayers/positive vibes. If you're in that mode, please include the Gillis family in your thoughts. We can't be with them physically, but we're thinking of them.