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.

Feeding His Imagination

Bread Chronicles Part Trois: Nate Making Challah (yep, he practically sleeps with those Curious George rain boots!)

Nate: Mommy, look at mine. It's a mountain. This is how you climb it. And this is how you squeeze it. But then you fall off of it.

Me: What happens when you squeeze it?

Nate: You go to the doctor.

Me: Why do you go to the doctor?

Nate: Because you get a big big boo boo. Mommy, let me see yours. Look at mine, it's beautiful.
Baking. Check.

Now, I'm not a big knitter ...more of an almost knitter. When I started this project for Lewis, sometime almost two years ago, in my head I had plenty of time to sit and knit (it's good to dream). I could see it clear as day, but it's not where I ended up. In fact, I only completed the body of this doggy by the time LJ arrived on the scene. So for the past seven months I've been staring at the unfinished doggy head feeling incredibly guilty that I had knit a huge stuffed teddy bear for Nate when he was born but still hadn't tackled LJ's. But while I love knitting as a craft very much, I bit off more than I could chew with the degree of difficulty for this project's pattern. Ultimately I had to turn to the local, talented, and really big knitter **Didi** for an intervention. She (and Aunt Joanne blocked it) came to the rescue and helped me FINALLY complete Lewis' doggy. I couldn't be more pleased. Thank you.

Maybe I'll choose a more accessible project for my next craft.....

Upcoming Surgery

So we sought a second surgical opinion a few weeks back. And now the date is set to have another Gtube procedure. It's scheduled for Tuesday (thank goodness for that nice vacation!). I think about his upcoming surgery. I think about how he may be down for weeks. How he liked pureed sweet potatoes at one point. And now has such learned aversions you can't get near his mouth without him gagging most of the time. Lewis' neurological control may change as he ages which might contribute to his oral feeding difficulties (either more or less). From a surgical perspective, his stomach will be like a mine field..... but it is our hope that this surgery will buy us some time so we can make him more comfortable with oral feeding. At least until he is old enough to be "taught" at one of the local feeding programs (Kluge or Kennedy Krieger Centers).

Just when you think he is making steps forward we take some back while we are at it. He'll probably be in the hospital for three days. It's even possible that if the gtube button won't work they will have to put the tube into his intestines... It makes me nervous thinking that all this progress he has made will have been for nothing being laid up with more surgery. He will not be strong enough for therapy for a little while. But I am reminded and tenderly assured that he is a trooper and will pull through it.

Hello Sunshine

For me the week was about the littlest things. Absolutely thrilled to have a break from the daily grind. For starters, the plane ride down went pretty well. LJ was crying until the benadryl kicked in. First three days of vacay we had a black cloud over us. Seriously, so much rain the streets flooded. Nate was singing the "Rain rain go away" song on repeat.

as seen from Mandalay Avenue

We're all about sunshine. And we're not looking back.

Cousins...aren't they so cute?

my boy and the beach

frankie says relax

I am now ready to take on the world. I'm ready now. I can take it. I've had some sleep, loads of food (including my favorite Grouper sandwich at Frenchy's), plus some time in the ocean, building sandcastles, floating in the pool and r&r with the fam and friends.

La La Land

We're due for a change of scenery. We're excited to be heading to Florida to visit my fam. We might need some intervention after the flight with both our guys. Should be interesting to see since Noodles won't nurse, take a bottle or a pacifier and his sinuses will probably kill with his NG tube in place (hopefully a little Benadryl will quiet him down) if his ears pop and get too uncomfortable...and since he always has to be bopped and bounced when he cries (sitting just won't do). The light at the end of the tunnel: lobster dinners, beach blanket cuddles and hopefully some zzzzz's (as well as spending time with a few of my favorite ladies). I can't wait to pay the beach a visit. I love the sound of the waves. How it can be haunting, peaceful, playful and beautiful all at once. We're off to soak in the sunshine and blue skies.

Photo Opp

Lewis pulled out his tube this morning. Took a photo opp. Check him out.

The quick update is that we are seeking a second opinion for Lew's surgery. We will meet with another surgeon tomorrow morning. More updates as soon as we know what we're doin'....

Wee Bitty Hospital Gown

waiting for Flouroscopy; Children's National Medical Center

Dr. Surgeon scheduled Lewis for a bunch of GI studies today at Children's National Medical Center to get a better picture of his stomach (no pun intended). Using flouroscopy the doctors were able to tell us how his stomach was healing. We couldn't feed him anything for six hours before the test. Unfortunately we had to wait a long time past our appointment (which was 2pm). And then they had to inject barium (they made us put the hospital gown on him so we didn't get his matchy matchy outfit all dirty from the barium) to see the contrast of die in his tummy. And then we had to wait another hour before more xrays could be taken. And then....We left the hospital at 7pm. Luckily the technician thought correctly that we could start feeding Lewis at 5:00pm so he didn't crank a huge fuss on the trip home. The radiologist told us he didn't see anything alarming, but we have to wait until our GI appointment tomorrow for the real results. We'll find out whether we can proceed with the Gtube surgery or if we're stuck with a Jtube. We're still doing research and trying to find out what is the best approach. Lew is doing just fine and is making zzzz's right about now.

Scooching...

my little man is not quite a torpedo on his knees, but he does manage to turn himself 180 degrees as well as getting himself off the activity mat.

Mother's Day Reflections

My mother: is the most beautiful woman i have ever seen + is the reason i am a good mother + reminds me everyday that life is what we make of it + she is the woman that i most admire + she is one of the world's biggest worriers i know + my light + my rock + my mother.

I love you for always being able to see the good and hope in hopelessness. I love realizing more and more each year how much of you is in me. I love you Mom!

Me: What do you want to say to your grandmas?
Nate and LJ: Hi Nanny and Didi. Happy Mother's Day!
P.S. Send candy (what a cool mom for actually writing that:)

As for my mother-in-law, I completely lucked out on her... She's one of the most selfless, lovely women around. She has a TON of skills and talent (which she graciously showers on her adoring grandsons!) Didi, you are wonderful, amazing, smart and pretty.

And on this Mother's Day, I have an amazing testament to motherly love and the courageous lengths that we all go to bring our babies into the world...no matter how they arrive. The discovery of motherhood has encompassed the joys and trials and personal growth of being in the moment. My one wish to have my boys hug me and be by my side on this holiday has been fulfilled.

Flying Solo

I've been on my own with the boys since Saturday morning. I am out of control, not my usual self. Nate professed that he misses his Daddy very much, and so do we. We started off the weekend when LJ and I accompanied Nate to his swim lesson on Saturday where we proudly watched him blow bubbles, kick his legs and doggie paddle. A surprise trip to urgent care on Sunday a.m.- Lewis is fine. Just a bit of an adverse reaction to the switch we made to his milk fortification (in an effort to help him gain weight)! One stool sample (on the remote chance it was a C. difficile infection. No it's not of Spanish descent. It's actually a bacterial infection of the GI tract) and a blood test later (results were normal), we've since changed the powder formula to a hypoallergenic formula which seems to have helped. (Nate once again made sure Mr. Pediatrician wasn't giving Noodles any vaccines:)

Nanny flew in Monday night to help us keep the house clean and stick to our usual routines. However, I've enjoyed hanging out in our pj's late into the morning, dance parties, dining on cereal at all hours of the day (I've had no menus planned) and getting lots done in the evening. But with Josh away, I have no one to get the coffee going in the morning and especially no one to share the middle of the night partying oh I mean feeding responsibilities. Though we've had visitors- Auntie Joanne came one night and read Nate bedtime stories...freeing me up to give LJ a massage. Nanny has been great for enabling me to get a shower in the morning after the boys have woken up (typically a luxury since Josh has gone to work v. early), been fun hanging out and helping out with loads of laundry!

Seven days? Panic came first and I asked the babysitter if she could come often- we settled for two days this week. But since that initial moment we've been filling the time with lots of activities and outings. I'm not like a deer in headlights at all. The dining room turned into an art studio and the outside patio turned into our chalk canvas. Lego creations have been prolific. We've missed Josh and we're ready for him to come home soon. But this little experiment has proven to me that I don't have to be a perfect mom or do things a certain way. I'm not myself. Sure there were occasional meltdowns, but I've actually been more relaxed.

Look Who's Here....

I've been pretty much holed up at doctor's offices this whole time, while somebody has been working on something for you. But I did want to share this visitor under the front ivy eaves with you. She's here on maternity leave. And I can't wait to see those beautiful baby birds when they are born.

This visitor (she's a robin and eludes the camera) and her fledglings inspired me to celebrate new life and renewal. It took some time but it is in times like these that one puts some serious effort into turning my attention to the forward-moving strides we've all made. Like I've said before, we have in fact, been officially approved to receive twenty-five hours of nursing respite care during the week and an additional two hours per day in personal care (or we can use these hours how we see fit). We have hired someone to help us and are awaiting the state to officially put her on the payroll so she can start. Yes, I am patting myself on my back. But that is what I need right now. What changed you ask? Everything and nothing. Thank you to all of you for your support- it was very comforting. Your feel-well wishes worked!

We went to see Dr. Surgeon last week. Had speech therapy on Tuesday followed by infant massage class and then the nurse came on Tuesday. And we saw Dr. Opthalmologist yesterday. PT, OT and a massage therapist. Phone calls to interview people. Phone calls to feeding specialists and case managers to quiz them on what the best plan of action should be. We haven't slept a full night sleep in over six months. Long story short we're exhausted:

Noodles' eyes haven't improved and he does need surgery but we will continue to patch both eyes for now. Since his stomach is the priority right now, the eyeballs are going to have to wait their turn- probably in June. But we're gonna patch the good eye two days in a row now followed by the bad eye one day and repeat that pattern the rest of the week.

Dr. Surgeon has ordered an upper GI study which we have scheduled at Children's Hospital second week of May. He wants to gauge how big LJ's tummy is, the location, condition of esophagus et al. He thinks there has been sufficient time between the last operation that it has had enough time to heal. There might even be potential for minimal scarring in which case he could attempt to do the G-tube procedure (tube in the stomach wall). In an ideal world, this would be the case and he would be able to go through LJ's existing incision but we'll see. The worst case scenario is he can't see well enough because of the scar tissue and will have to place a J-tube (tube in the intestine). There are many downsides to the Jtube, for instance Noodles would have to be on a continuous feed and hooked up to the feeding pump at all times. Another negative is he wouldn't ever feel hunger. None of this allows for any sense of normalcy. The one upside is that it would eliminate the retching syndrome and any related reflux.

We've spoken to many feeding specialists who all feel the NG tube is no longer a viable option.

More on the NG tube...everyone's concerned again with LJ's weight gain. None in the past three weeks. That combined with his oral-feeding regression points to the alternatives. We're still playing with the right formula for adding calories to his milk and obviously we still haven't gotten it right. Yet, the pros feel we won't make any progress with his sensory issues if we have all that tape on his face and the tube is still causing discomfort in the back of his ear, nose and throat. So we're most likely looking at abdominal surgery in May.

I was trying to coordinate as much as possible at the same time so that we only have to put Noodles under the once. But Dr. Surgeon and Dr. Opthalmologist both are extremely wary of anesthesia contamination and therefor won't do it. It's just too dangerous. So it appears he will have to have anesthesia twice. But he does need another MRI so hopefully we'll be able to schedule that at Children's Hospital before the G-tube surgery.

What does the future hold? I wish I knew. Anybody have a crystal ball? I will do whatever it takes to make my little man get healthy.

Mojo- Oh It Left

It's hard seeing Lewis struggle for his achievements. And it's hard wondering if he'll walk or talk, let alone live independently. And it's hard worrying about what will happen to him when we're both gone. But one of the hardest parts is thinking about what Nate has lost, and how his life will be different.

Sure, I could write a wine and roses post about what he'll gain, and I do realize that this is all out of our control. I do think about the good parts of being his brother, and I hope someday he'll appreciate all of that. I know this is the only way he'll ever know, and I hope that he'll never think about all that he's lost. He doesn't yet know that he's different. He's just Noodles. He cheers right along with me when he has a good night, plays in his excersaucer or does something new. He tells new people that Lewis is just 'special' and he'll tell them thath he just eats his milk from a tube. He just is, and he knows that. I know I'm forever changed by being Lew's mom, and I'm a much better mom than I would have been without him. I'm more patient, I appreciate the little things more, I recognize how amazing life is. I know that there will be benefits to growing up with Lewis. And I know he'll be a better person in the end, but I do worry about it.

I think about how much time and energy Josh and I put into Lew's care, therapies, insurance fights and appointments. I worry that Nate is not getting enough from us, or that he always comes second.

I think about how I'll eventually have to explain to him the how's and why's of Lew's differences. I wonder if someday Nate will be bitter or angry at the responsibility he'll feel for Lew. I know there is nothing I can do about any of this, and I realize that I shouldn't go there. I don't know how NOT to think about it though. Or find peace in the knowledge that this is just the way it is. I spend most of my energy focused on being positive, but this little part does wiggle it's way into my mojo. And today is just one of those days.

Plus et Plus

Holy Granola: Infant Massage

Went to a massage class this week with Didi (the instructor was from Brooklyn so they clicked immediately!) and LJ. There are so many benefits to infant massage that I can't even list them all. Massaging your baby is so important, not just for the baby but for bonding with you too. Some of the physiological benefits are listed below:

-improves blood circulation
-the release of oxytocin, the nurturing hormone
-aids in digestion
-helps relieve discomfort from gas, colic and constipation
-enhances development of the nervous system
-stimulates neurological development
-improves immune function
-reduces stress hormones
-increases alertness/heightened awareness

These are just a few of the benefits. You don't seem to need to know alot of techniques- though one is called "Swedish Milking". (not kidding) A few seem like they could go a really long way. Lew seemed to love it. He wanted to go right to sleep after it! We have another class next week and I hope they practice on moms!

The View From Here

I love it when the UPS guy leaves me goodies. We've been gearing up for a few fun vacations and "staycations". So I ordered new bathing suits to outfit the whole family. And now, Nate has insisted on wearing one of them while he watches his show on t.v. (EDIT: he's now wearing his bathing suit and his Curious George rain boots). I have a sneaking suspicion we will be putting him to bed still wearing 'the green one'. If Noodles' health continues to be stable we are scheduled to go to Florida (it's where all the cool kids go on Spring Break) to visit my family in May. And we are supposed to spend a week in Hilton Head in July with my extended family. Perfect for going to the beach, playing in the pool, cooking great meals from going on some bike rides to watching the waves crash with Lew on my chest...can you tell I have a serious itching for a forecast with only sun and warm weather? I'm greatly looking forward to it (maybe I'll even have a chance to read a book).

After spending so much time this winter in the hospital, in therapy and in doctors' offices, I suggested to Josh that we needed to take some time out for the family. We needed some serious laughter and fun- and I'm all about travel. He was totally on board so we started planning, saving and reserving. To further cut costs, we were able to re-book our flights that we couldn't use from November and talked the airline into waiving the penalty fee. Cocktails on the porch? So here's a little ode to things that are cheerful!

While this week has been busy with doctor's appointments and Medicaid updates, I'm in a "medical" rut. I'll just wait it out and return a little later this week with the full update.

"Mawage is what bwings us togevah, today"

Man, how time flies. Way back when it was our big day we had no idea yet just how much he would need me, and me him. I'm so proud of us. We're showing the boys what a loving, trusting, strong relationship looks like. It's meant lots of love and affection, playfullness, constructive disagreement and lots and LOTS of communication. Plus, I think he's the coolest guy around. The fact that he helps me with the dishes and he makes me coffee in the morning makes me swoon.

I know one thing. I'd do it all again. A million times over. ( I might do a few things differently though). You are my best friend. I love you like crazy. K. Thanks. Bye.

the best things in life aren't things

one more reason to keep him...i have this incredible husband.

Happy Almost Anniversary. Seven year itch? He's more than incredible. He's a great father and my best friend. And get this ladies, he helps around the house. But there's another reason he is so great: he can do anything.

He makes most of our money, he is an avid cook, he does the laundry, and he fixes things. A couple of weeks ago our wood blinds fell apart in the dining room. He took them down, fiddled around with the inards, replaced some stuff and Bingo! Car problems, you name it he can fix it.

To celebrate our big day, Didi and Bop came and watched the kids for us and we dashed off alone for a saturday night getaway to our nearby, favorite fancy restaurant CityZen and then stayed the night at the Park Hyatt. We relaxed, ate A LOT, tried to sleep late, browsed the stores in Georgetown, napped, laughed, refrained from cleaning anything (knock knock housekeeping) and ATE SOME MORE.

Judy and Hank, THANK YOU. So much. Really. It couldn't have been more perfect. (Let me tell you, this Didi and Bop we've got? They even ordered pizza for dinner. And bought old Muppets dvd's for "movie night". Manamana. Seriously, those are good grandparents...) Can we do it again soon?

Like tomorrow. Anyone?

Sanity May be Madness

Sanity may be madness, but the maddest of all is to see life as it is and not as it should be. ~ Don Quixote

Full Plate

Actually, I'm too full still to talk about the holiday! Our plates are full with doctor's appointments this week and next.

We had our appointment with the Pediatrician Monday and the Neurologist yesterday morning & I just wanted to bring everyone up to speed.

Pediatrician:
He was pleased with LJ's progress. It's slow, but it's progress for him. He was happy with his weight gain. Folks, he's 15lb 10 oz. His head is 41 1/2 cm. (It's on the small side, but Lewis must take after his mom. I have a pea-sized head!). And he is 25% on the charts. Nate chaperoned us and he asked the pediatrician during the check-up whether he had any "vaxines". Nate also gave his nurse a pretty hard time when it came to giving Lewis his 6-month shots. Here's the lowdown:

Nurse administers first shot. Lewis screams and cries.
Nurse administers second shot on LJ's other thigh. He screams and cries and sheds big crocodile tears.
Nate hollers at nurse "That's enough. No more vaxines. Don't hurt my baby brother! That's enough!"
Nurse explains to Nate that these shots are important for Lewis. They will make sure he stays healthy and doesn't get any bad diseases.

When we got home Nate and I had another conversation regarding vaccines. It went like this:
"Mommy, I don't like vaxines. Medicine is gentler. Medicine is better. But I don't like the grape kind anymore. I like the banana kind." Now I know which medicine is the grape one...but I'm clueless where he got the banana idea. Any opinions are welcome.

The day went on and LJ did fine after the shots.

Neurologist:
He felt Lewis is at about the 3-4 month old marker developmentally. He tested his foot reflexes on a hard surface and found that the placing/stepping are intact but a little slow. Again, totally consistent with his developmental delays. He also mentioned that Lewis seems to exhibit slight hypotonicity.

I discussed the course of treatment regarding LJ's eyes with him too. He defers to the Pediatric Ophthalmologist but felt that the earlier the intervention (ie surgically correcting the muscles) the better off he would be...we don't want him to end up with Amblyopia (a disorder of the eye that results in poor or no vision). He mentioned that some folks treat strabismus with botox??? and or botox in combination with the surgery. Yes folks, long before botox was used to treat wrinkles, docs use it to relax the overactive muscles in order to bring the eye back into proper alignment. Can I get a little of that?? not in my eye, but around my eyes would be nice.

Last and not least, he would like to have another MRI done between 8-9 months old to study the gray and white matter. I Would LOVE to coordinate the anesthesia from the eye surgery with that of MRI. It makes me nervous thinking that all this progress he has made will have been for nothing being laid up with more surgery. And it makes me doubly nervous thinking about putting him under with general anesthesia twice in one month!

Anyways, next week we meet with the stomach surgeon. We're pretty sure it's a foregone conclusion that there is too much scar tissue and that he won't want to operate again. That's the GI doc's verdict at least. We'll also be taking a course on infant massage to see if we can help Noodles relax a little and feel more comfortable after his feedings.

Rolling...batting...smiling

It's official. In the last four days my little man learned to roll over from his back to his tummy. He's been trying for awhile...and he got a little help from gravity when he last attempted it at an incline in his crib. I'm hoping this will lead to further roll-overs on his activity mat and maybe even from his tummy to his back. Ya never know!

He also successfully batted at his Sassy piano rattle and got it to make noise! Mission accomplished.

Smiling. He's been doing lots more of it spontaneously. It's contagious. Sometimes I swear he is even smirking! LJ also occasionally blows raspberries but we're still working hard on the eating front.

We have his 6 month checkup at the pediatrician's first thing next week. So it will be interesting to see what the doc says. But it is so fun to watch him learning new things...and to cheer him on in all his new adventures.

Bread Chronicles

The above picture is of Parmesan-Pull-Aparts. Big shout out to Natasha...this was a nice deviation from the challah we've been baking! And fortunately the recipe wasn't too challenging. Thank you. We've been eating it with dinner, for breakfast, for lunch, as a snack etc etc. Wishing we could give you a cyber taste!


Could LJ be trying to tell us something?

The Rainbow Connection

Happy 6 months (almost) to LJ! We threw a little party last night to also celebrate Nanny ( I love you mom and am grateful for the journey of discovery that has been/is motherhood) and Bop's (happy birthday Bop!) birthdays too. To set the mood, Nate and I made a rainbow cake!

Yay, so the news we've all been waiting for! Well, okay, maybe not *all* of us. Maybe just like a smallish grouping of us. Or perhaps just Josh and I plus a few other people, probably our parents, as they are always good for stuff like this. Oh right, the news: LJ was approved for Medicaid. Yeeeee! Not only will this mean some respite nursing care in the near future but he is eligible for all kinds of other services!!


concentric-ish gobs of cake batter


white frosting disguised the colorful innards


and just in case you wondered what their eating cake faces look like, here you go

kids....

A group of professionals posed this question to a group of 4 to 8 year-olds, "What does love mean?" The answers they got were fantastic.

here are some of their responses to get your Friday started:

"Love is when you go out to eat and give somebody most of your French fries without making them give you any of theirs."
Chrissy - age 6

"Love is when you kiss all the time. Then when you get tired of kissing, you still want to be together and you talk more. My Mommy and Daddy are like that. They look gross when they kiss."
Emily - age 8

"Love is when you tell a guy you like his shirt, then he wears it everyday."
Noelle - age 7

"Love is when Mommy sees Daddy smelly and sweaty and still says he is handsomer than Brad Pitt."
Chris - age 7

"Love is what makes you smile when you're tired."
Terri - age 4

Operation Fly A Kite

Kites and Cherry Blossoms,
National Mall, Washington D.C.



Not the most beautiful weather, but the wind was just about right. Aside from flying his kite, Nate LOVED getting his boots stuck in the muck. Nate the "kite doctor" also decided our umbrella needed a medical intervention- thereby winding the kite's string entirely around the umbrella and then attempting to fly his kite vis a vis this inventive spool. On purpose. LJ thought it looked impressive. Nate tried and TRIED but to no avail. There are spectacular pink cherry blossoms all over the mall. It's very Spring-y yet not so Spring-like here.

They've both just finally crashed...literally. Good times, good times.

Om

One-Eyed Jack . Lewis Jack. striking the Warrior Pose

Don't forget to breathe. Inhale. Exhale.

the real practice of yoga happens when we step off our mats and step into life...

Motherhood

This list of wonderful things to remember for parents of special needs children is something I'm sure I will find relevant in this journey we call life...

Remember…

1. Take one day at a time, and take that day positively. You don’t have control over the future, but you do have control over today.

2. Never underestimate your child’s potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you’ll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can’t be a super-parent 24 hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts whenever necessary.

8. Be kind to yourself. Don’t focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

-Author Unknown

The same person that offered this list also suggested this advice:

But always remember to find strength in the depth of your being, for we are special parents given special kids. We must always continue on and can never stop fighting for our children. We will never cease to grieve. We will never give up hope for a better life for our children, and we will never fail to see the light in our children’s eyes that will melt our hearts and souls.

Lewis has a great and gorgeous soul!

Holding My Hand

aren't LJ's hands huge??


In between the tantrums, the frustration, and sleepless nights are moments so beautiful that I wish I could hold on to them forever...

Speaking of hands, this thing I have goin with Nate where he doesn't think twice about clasping my hand in parking lots or when we cross busy streets...can I hang on to that too...

Onward we go. Hand in and.

Eating, Sleeping and ...Yoga ?!

Seems like there's a lot to update everyone on from last week, so Jenn asked me fill in today. We've learned a lot about the feeding situation since Tuesday, when LJ had an appointment with the GI doc.

Some background. Lewis is down to one visit a week from the speech therapist, starting this week. Basically, the therapist felt that Jenn had learned all the tricks she had, and that it was unlikely she'd be able to do much for the time being. Initially, we were pretty upset by this, especially since Lewis seems to have regressed recently in terms of feeding/sucking skills. In our conversations with various experts since then, there seems to be a consensus that kids don't generally make much progress learning to eat with the NG tube in the back of their throats. As they get older and more aware of it, it annoys them more and more and makes them more averse to anything around their mouths. (Makes, sense, when you think about it). Unfortunately, the only other options are a tube in the stomach or intestine. Either one requires surgery.

Jenn discussed this with the GI doc earlier this week. The doctor had a couple of important points. First, LJ isn't ready for surgery. When he is, the doctor thinks he'll only be a candidate for a J-tube (intestinal feeding) rather than a G-tube (stomach feeding), due to the scar tissue and overall condition of his stomach. This is tough news, since a J-tube doesn't allow for "bolus" feedings (quicker, high volume feedings). That means more time hooked up to a feeding pump. However, the Doc didn't feel that that was the only option, or even the first choice. She suggested that we look into two intensive, inpatient feeding programs for kids. One is at UVA (Kluge), the other at Hopkins (Kennedy-Krieger). Both programs specialize in teaching kids like Lewis to eat by mouth.

We've been in contact with both programs. Short version, they don't take kids until at least 1 or 2, and only that early on a case by case basis. I had a very long, very helpful conversation with the head of the program at UVA. After listening to Lewis' story, she agreed with all the current assessments and gave us some great pointers. The main take away is that kids can't learn to eat until they are 'teachable' (debatable when that is, but definitely greater than 5 months) and that the process involves letting the kid get hungry. At this stage of the game, Lewis needs the calories for growth and brain development, so skipping meals isn't safe. All this makes lots of sense, but also leaves us in limbo for a while. She suggested that we focus on physical and occupational therapy and tone down speech therapy for a while - any mouth feedings should be just for fun and positive associations, not for calories.

Now back to our regularly scheduled program...The rest of the week was fun and busy. Jenn and LJ went to baby & me yoga at a place near our old house in DC. (No, I'm not kidding, just to save you an email). Jenn used to do this with Nate all the time and this was LJ's first run at it. He did pretty well until the very end, even with 17 other babies in the class. Turns out lots of the stuff they do is very similar to LJ's physical therapy. All that and Jenn got to talk to some adults and do a little yoga herself. I think I'll submit the bill to insurance.

Nate's friend Zoe (and Zoe's mom) came over for a challah baking playdate on Friday. I missed out, but the results were delicious (see pics below) and Zoe is very photogenic. We had a great time eating the challah with Aunt Annie and Uncle Dan for Friday dinner and both boys got plenty of aunt and uncle love. Lots of other fun stuff this weekend, birthday parties, movie night and even a quick dinner out for Jenn and I (Thank you Fran & Dave!).

Oh, one more feeding note. The doc switched LJ off of the continuous feeding overnight, to see whether he might sleep a bit better. LJ's sleep schedule has been hit or miss since we got the Farrell valve bags (see earlier post). He's had a couple of very good nights, sleeping 4+ hours at a clip. Last night, he and I stayed up pretty much all night - we aren't quite there yet, but hopefully this is progress.

What Are Little Boys Made Of?

I Have Perceived

I have perceived

that to be with those I like

is enough,

To stop in the company

with the rest at evening

is enough,

To be surrounded by

beautiful, curious, breathing, laughing flesh

is enough,

To pass among them,

or touch any one,

Or rest my arm ever so lightly

round his or her neck for a moment

what is this, then?

I do not ask any more delight.

I swim in it, as in a sea. -Walt Whitman

Teamwork

So I've thought about this post for over a week now. I didn't want to jinx anything by talking prematurely about the lovely experience we had with LJ's Medicaid waiver evaluation two Fridays ago. They had told us we would find out if he is approved in a week or so...I've been waiting for the good news to tell you how that process went. We finally got the call that he passed his screening!! Yay.

I'll start with the actual evaluation. Nate was wonderful...well not really! But they needed to see the chaos we now call "life". The thing I loved most is that Nate hid the social worker's car keys!!! What a bargaining strategy...waiver for your freedom. He's already such a great big brother, already advocating for his little brother's rights! And the teamwork between the two. Just imagine..."Ok, Lewis, you distract her with some retching, and I'll go hide the keys. We won't let her leave until she gives you that waiver TODAY!" Top off the meeting with Nate running out of the house to go home with them. I bump Noodles' poor little head on the storm door and voila, the tears (his and mine) flood. Sounds like a fiasco right?

"Next steps" are yet another evaluation to see what services he qualifies for and we have many more things to consider. One thing we're considering is getting on a waiting list for either the MR or DD waiver. The unfortunate thing is the DD waiver he can not go on the waiting list until he is 5 yrs and 8 months, and the MR waiver he may not qualify for once he is eligible to receive, but we'll probably cross that bridge when we get there. If he's not eligible, we'll remove him. He can only be on one waiting list at a time, and right now he's only old enough for the MR list...so we think we want to put him on it. If he ever is to qualify for it...we will have saved YEARS from a waiting list that is currently DECADES long. There are still some qualifying factors, but especially since he qualifies for the ED/CD waiver, he should qualify for the MR waiver.

In other news, Didi is going to relieve us for a spell tonight. Everybody is totally, completely 100% looking forward to her sleepover...hopefully LJ lets her sleep a little;) And LJ's Uncle Jeff found us the farrell valve bags for a fraction of the retail price with his internet surfing prowess! Many many thanks in advance....

We Heart Farrell Valve Bags (multiple times over)

Top Five Reasons We Love Farrel Valve Bags:

5. Patent pending

4. It's a hands-free device that hangs on the IV pole

3. It's like magic

2. Noodles slept comfortably from 9:30pm until 4:00am (which incidentally he only woke up because of the massive BM in his diaper)

1. We all woke up today feeling like we can handle everything on our plate...and more

Here's a picture to show you what a farrell valve bag looks like. Now, we just have to get our hands on more of them. They are only good for 24 hours and the doctor only had one sample to give us!