Loving....

this gorgeous smile and the fantastic rocking horse that Bop made the boys



















hanging out with our fabulous PT at Aqua Therapy...i'd go on to more lovely photos but Nanny is visiting! i'm off to do a little bit of nothing for awhile.

what's a boy to do?

Sister Jessica

Growing up with a challenged sister I know first-hand what an inhospitable world this can be. On the flip side, I know all of the joy Jessie brings my family as well. She is a very healthy person otherwise and has the most wonderful sense of humor she just shines. When people have had misunderstandings and think she can’t communicate she used to look at me and just laugh mischievously. (she even gets my dad’s jokes) I really admire her courage and strength with all the adversity she has faced in her life. I am in awe with her determination to do the things and go the places she has experienced. She has been to Australia , New Zealand and London ( I think I'll go to Australia). She's going to Nassau this Spring and before losing any time I'm sure she'll be planning a trip to Alaska. Her disability is just part of who she is.

I can remember in our childhood going out to restaurants for a family dinner, servers would ask us whether he could drink and what she wanted instead of directing the question to her. First, I would get so mad and correct them. She always ordered a coke with a flexible straw. Also, many restaurants have steps or restrooms on a lower level...not many restaurants have elevators. We always had to call ahead to make sure there was some level of accessibility. This created an atmosphere that caused us to always think and plan ahead. I think I can blame my over-compulsive planning problem on this aspect of my childhood. I had a daytimer when I was like 5 !?#

Occasionally I freak out and have to reorganize my closets, the kitchen, LJ's medical records. (see what I'm talking about with the 3-ring binders with tabs corresponding to each of his specialists? and below is LJ's flow sheet)

I've even created a handy medical "business" card about Lewis to hand to the ER staff or other new service providers.

Jessie is so well-adjusted and I think it is because my parents did the best job to always include her and treat her on an equal basis as the rest of us. Jessie was mainstreamed in the public schools, she went to the prom, she had frequent trips to NYC to shop at Bloomies and see broadway plays. Despite all of Jessie’s challenges, I used to get jealous of her and all the attention I perceived her getting. (trip to NYC for me please??) My brothers and I sometimes even fought with her-she can be stubborn and moody just like the best of us. We also had competitions. For example we had wheelchair races down the driveway. Once Jessie got so mad at my parents for nagging her about something she rolled to her room and slammed the door shut. Other times she tried to run them over with her motorized wheelchair...but they were too fast! My parents have advocated for her beyond belief. So much so that she lives independently in a townhome that she shares with her aids. And thanks to our mom’s incredible phone/letter campaign she has weaved her way through the bureaucratic mess and gotten Jessie many services !! Jes is a mad hook-rugger. And by mad I mean off the hook, no pun intended. She thoroughly enjoys her manicures, often venturing for the naviest blue hues or royal purple shade. She is like all of us. In college, like some of us who didn't stay away from alcohol, she would sometimes get tipsy and she had some dui problems- no more wuwu’s, watch out walls! All these are reminders of times we've laughed so hard tears streamed from our faces.

This is what it is like to have a glimpse at disability. I love her. She is a person. A daughter. A niece. An Aunt. A friend. A teacher. My sister. Thank you for making me a more patient, loving, compassionate human being. Without you- what I'm going through- would be so much harder. I have learned how to live.

Oh No He Didn't

It gives me strength to know that even though Noodles is teething, he has started exploring his mouth with his hands. If anything, this video will show him as he embarks on his daily feeding therapy. He is making more and more sounds (and by sounds I mean cooing not crying). Of course he had his hands more in his mouth when he started, but we had to run to find the camera.

The process of feeding LJ his formula through his g-tube from setting up, measuring, pouring, flushing with water to the sacrifice of making our own baby food (the stuff in those jars smells funny according to Noodles)....Everybody is working hard to improve things- most importantly Lewis. But the practical reality is feeding and oral aversions are constantly in a state of adjustment. We've changed LJ's highchair so he has to do more work to strengthen his gut. And weight gain and development aside, he is showing us that we will just have to follow his lead. ( I will post another vimeo of his OT, but that is for another day)

Lewis Feeding Therapy_9.2009 from Jenn S on Vimeo.

New Beginnings!

Great news....not only has the second year of preschool started for Nate, but we have a new therapist working with us. I've been thinking about my meeting with C, a feeding specialist from Children's Hospital, and I've let everything sink in.

Didi and I took LJ there yesterday and were quickly impressed with a lot of new information C shared with us. First she examined LJ's body. She noticed a curvature of his spine that correlates with the location of his first surgery incision on the opposite side of his abdomen. C said this wasn't normal and indicated that Lew is really weak in this part of his torso causing his posture to be slumped over. When he is slumped over it makes his stomach squash down with his intestines making for an unpleasant digestive experience.

This hasn't been helping his retching syndrome any. Without the ability to sit upright and push his shoulders back he will also never be able to bring his shoulders back, thereby making it easier for him to bring both hands together, hold things, and bring them to his face. C also said that there is no way he will have the motivation to eat orally unless we can build up his strength so much so that he can hold the thoracic spine up all on his own. We've been instructed not to really use the Bumbo chair as it encourages the wrong back muscles for LJ. She gave us some side stretches to work on with him and some abdominal strengthening ideas including a sample of dyson, an adhesive material that helps keep LJ from scooching out his floor sitter and feeding chairs. Once he is physically in a better place, he will feel all that much better and be ready to work on oral feeding skills.

After feeling frustrated that we have been promoting these oral aversions and wasting the last seven months of therapy I realized a friend had spoken very true words to me. You can't look backwards. You can only go forward. Because we've all got nothing to lose and everything to gain. And you never really know what lies ahead. Today or tomorrow.

Inchstones

An inchstone is one of those tiny steps that your "special needs" child takes on the way to a major milestone. I really can't compare Noodles to other children's milestone markers because he is still behind by about three - four months. But the anticipation is so painstakingly slow that I like to think of his progress as inchstones in lieu of milestones.

Lewis had two inchstones yesterday and today.

We had pretty much stopped oral feeding sessions altogether last week, because I was so down and blah about the lack of progress. But I got back up on the horse this week and Monday proved fruitless, or rather sweet potato-less. LJ just turned his head away or would immediately start gagging once it got near his mouth. However yesterday, Nate was especially interested in helping his baby brother try out some oral feeding skills. So we first tried playing with these fancy organic banana puffs (they're supposed to melt in your mouth) to get Noodles interested. Then Nate would stick one onto his lips, making sure it didn't go in his mouth since he can't handle swallowing. It really stuck, and the fact that Lewis cooperated was huge! Then we proceeded to try some smooshed avocado and we had mild success. He looked at it...stuck his finger in it...and then accidentally put his finger in his mouth!! All that and he didn't gag. We started him on Peptamen Jr Rx formula as well. So hopefully the new stuff will be gentler on his stomach (it's a peptide-based elemental formula specifically for kids with g-tubes and allergies).

Today, Josh and I took Noodles to meet Dr. Neurologist to get the results from the latest MRI. Weirdly, I didn't feel angry or upset at all- the last neurologist was pretty negative. I was mostly just really curious to hear what the doc had to say. He tipped the scales at almost 20 pounds! And his head circumference is increasing on trend for him..albeit small (43.5 cm is evidently the 2% on the charts). Most importantly there aren't any new abnormal signals. His white matter is growing normally! The injury to his brain is still in the basil ganglia, but they have pin-pointed it specifically to deep in the thalamus (that's where the spinal tracks come together). In the end, he didn't want to speculate on what the long-term prognosis would be (he'd prefer to evaluate him around 18 months, if not 24 months). The one conclusion he did find is that Lewis will probably always have motor control/tone issues. Whether this will impact his ability to walk, talk or use his hands remains to be seen. Only time will tell. I guess that's the most overwhelming feeling I had was that things just are the way they are and they will be what they will be. Noodles has a lot more development between 12 - 24 months so we need to maximize his therapies and be as aggressive as possible. The MRI is not gonna change our current course of action. But we are so thankful that it doesn't look like LJ suffered any cognitive deficits.

The Weekend, briefly

Therapy Thursday

For those who are interested: Lew's PT and OT would like him sitting up more when he's playing with toys. So far, he's not sitting independently, but he has made some progress. He's now able to tolerate some tripod prop-sitting for fifteen seconds...and then he falls over. Down below, you'll see that he's now got a floor sitter. His PT managed to get one from somewhere--she's like an equipment yenta or something--she borrows from this family, digs around at PIE (Arlington's early intervention), where she works, and voila!

Secondly, I picked up this Physiogymnic ball below at the recommendation of our PT on craigslist! It is used to help work on trunk rotation and balance. They typically retail for $40 and I got ours for a steal at $20. He seems to like it! And the land exercise has helped him progress with the Aqua Therapy exercises as well. Or maybe it's vice versa?!
He got casted for his new hand splints as well. Do you know those babies cost $100? I am so thankful that early intervention is going to pay for those because my insurance doesn't cover anything. And if they do, they make you work very hard for it. Whew, that's a post for another day though! She fixed these ones up with plastic scraps and velcro straps and we're using them to treat/stretch out his hands from their fisted position. We're supposed to use them every day for an hour at a time, which shouldn't be a problem since it takes an hour to feed him each time.

Team Hoyt, You Amaze Me

http://www.values.com/billboards/16-Devotion

This story is so inspiring to me.....on so many levels....I am in awe.

Some Splainin To Do

Today, the medical staff at Inova Fairfax Hospital completed the latest MRI without a hitch (it also helps to be the first appointment of the day...6:30am). The idea of Lewis waking up scared and panicked in the tube had me really nervous. But with the anesthesia he was knocked out for the count and stayed asleep for the entire time...it made me cry to be there and hold him as he fought the gas mask before they could get the tube down his throat for anesthesia...I'm supposed to protect him right?... I am so relieved everything went fine.

Didi and Lewis waiting for the MRI

LJ is doing just fine. Noodles came home hungry but tired. Everybody is resting now.
Normally we should be receiving a call from the neurologist with the results after the weekend however he is on vacation(talk about waiting on pins and needles). So we have an appointment on September 9th to meet with the neurologist and get the interpretive part of the evaluation. We are really anxious to see another view of LJ's brain and learn more about the exact centers that are affected. He hasn't had an MRI since he was 3 months old. If there are changes and there seem to be improvements we would be so elated!!! But we have to keep things tempered. Doctors (sorry family, no disrespect) most certainly don't have all the answers, and the brain is still largely a mystery. Nobody knows for sure how Lew's little brain will heal. I am so happy that this part is over though!

Dog Days of Summer

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.

Happy Birthday, Josh

Happy, happy birthday Josh. What an amazing daddy/hubby you are! Many wishes for more wonderful, happy years together surrounded by friends and family. Thank you for sharing all the chaos with us. You certainly deserve a LOT of celebrating! I think this year is going to be great. Congrats and adventure on. The ride keeps on getting better...or so I hear!#?

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.