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!

Cage Fighter and the Balloon Lantern

How will this rainy day go? Who knows? All I do know is that I have been up since 5:45am. Noodles is now finally asleep (with his STYLISH hand splints on). Sundays are his days off from the eye patch but not from his hand splints! Nate has already watched Scooby Doo and wrecked his train table. He's smashed his face against Noodles' affectionately...there is only so much laundry I can wash...and so now we've also done a balloon-lantern-art project. When it dries he'll get to pop the balloon, place some sand in it and I'll put a tea light in it. Is it nap time yet?


Cage Fighter


Rainy Day Art Project


Paper Mache Balloon Lantern

All I know is that this is my life these days. A combination of exhaustion, aching body, aching heart, giving in, resistance, and gratitude all interrupted by pick-ups and drop-offs. I have all three of my boys surrounding me today. They all need me in a way that someday they won't.

Love this...

LJ yanked his NG tube out last night before his bath. We took it as a photo opportunity! Plus we wanted the world to see his smiling eyes. And face. If that's not his way of telling us he's relieved to have a break from it for a spell then I don't know what it!

And as for the bread chronicles, we had an off week. I must have been asleep when I made the dough this morning, because I forgot the eggs. Whoops. Nate didn't seem to mind. He told me his dough strands (there are 6) were called "roller coasters". Then he proceeded to make his bread into a "zipper". Meantime I have to concentrate really hard to braid the 6 strands and all he does is come in and scrunch the roller coasters together and his turns out beautifully. The result is almost like an epi de ble (for all you food snobs). He proclaimed my bread looked different than his bread at the end. Very astute that boy.
.

Foolishness

"I must learn to love the fool in me--the one who feels too much, talks too much, takes too many chances, wins sometimes and loses often, lacks self-control, loves and hates, hurts and gets hurt, promises and breaks promises, laughs and cries. It alone protects me against that utterly self-controlled, masterful tyrant whom I also harbor and who would rob me of human aliveness, humility, and dignity but for my fool."

-- Theodore I. Rubin, MD

"Real" Breakfast

The pictures of the boys above were taken by mommy just before they both conspired to have a middle of the night party. Usually there isn't much time for a "real breakfast" during the week. But this morning we had the "go-to" breakfast of the moment. The freshly baked challah is pretty excellent stuff! The fragrance of it toasted with Aunt Joanne's homemade peach jam still lies in the air. As I relished the peach jam, sadly we have to wait several long months for the real deal. But since daylight savings is tomorrow at least we know Spring is here! And who knows what will be next for the bread chronicles, brioche?

Have I told you I'm desperate for green. And fresh food (daydreaming about our CSA farm share). I think today it's time for the boys and I to plant some flowers. Some day I will stop being so lazy and FINALLY plant a vegetable garden. Meantime, it's beautiful here. I hope the sun is shining where you are.

Friday, I'm in Love

After a week of stress, anticipation and feeling rundown, everyone woke up (albeit at 5:30am)today in wonderful spirits. We have all been a tad tired (even Nate took his nap sleeping on the floor next to his bed...apparently too tired/cranky to make it all the way into his bed!). We're so ready to enjoy the warmer weather this weekend.

Lewis had a health assessment at the pediatrician's this week- we're working on figuring out why he has such a minimal weight gain. He's just not that into his food still. I tried peas this week but the taste was too strong (my best guess since LJ pursed his lips tightly every time the spoon got near his lips). So we went back to sweet potatoes; and every time he starts to crank a fuss I try distracting him with one of those loud, noisy shaker toys. Two teaspoons is the most he's been able to tolerate. His current stats are: age - 5 months ::: weight - 14 lbs ::: height - 25 inches

Meanwhile, this blog is so good for my soul. We're passed the hardest stage (I hope) and onto where Lewis is beginning to react (especially when I eat his toes and fingers!) and smile a lot more often. So this really feels like a new start. Goodbye gray winter and hello to all my flowers emerging from the ground! Nate is such a great helper (most of the time) with LJ. He has been re-purposing things (Josh's belts, the turkey baster, you name it) into stethoscopes and syringes lately so that he can help "check Noodles' tube".

As for the bread chronicles, we did bake challah again and it's a good thing because I polished off the last piece from the other week just yesterday. We're enjoying the fruits of our labor. The loaves turned out much bigger and fluffier. We'll try and post some pictures later. TGIF.

Safe and Warm

snowmen make us happy...

We actually got a few inches of snow around here! School and everything is else is closed which means we will be baking (salty oatmeal raisin cookies...nummy nummy) and doing lots and lots of projects. But we're cozy.

if a picture paints a thousand words


peeking through Lew's window


in the garden at 6:30am

One Little Snow Day

lenten roses breaking through the snow


the promise of a shiny, happy Spring

It's lovely when you don't have to be anywhere in particular (no offense to LJ's therapists and doctors). Although the charm of all this snow will start to wear a bit thin (assuming it also snows tomorrow as predicted). I could never tire of keeping cozy and warm inside with a hot cup of tea so long as I have my boys to cuddle.

Dough Boys

I've always wanted to make nice yummy challahs for the weekend - think French toast, grilled cheese and the like. But I've had a love and hate relationship with bread making in the past. So the boys and I have decided to start a new tradition to bake our own loaf each week- here are the bread chronicles part one. I'd like to think I've made some progress today. At the very minimum, loaf number one smelled wonderful while it was baking and it warmed up the entire house. It didn't turn out that ugly either! Happy weekend.

umm...umm...good

Nate getting in on the action

little loaf of love

Three Potato Four

While progress on eating is painstakingly slow (sometimes so frustrating that I have come to feed LJ with one hand and pour wine into my glass with the other), all is not lost. I've been trying to get Lew to eat some pureed sweet potatoes mixed with rice cereal. I tried it with the preface that maybe the rice cereal alone was a little too bitter for him. While his eyes light up a little bit, the taters got more love than the rice cereal alone. What a mess it is. First I try getting a little on the tip of his tongue with a spoon. Then I try dipping his pacifier in the mixture to work on his sucking. And last I work with a small pipette dropper full of the sweet potato mixture. He takes my spoon in his hand and flings it all over- in his hair, on his clothes, all over the room. LJ won't sit in his bumbo seat so the bouncy seat will do for now.

Seems that his big brother has given him a cold. He's pretty congested making it harder to work on sucking and swallowing. I would happily give him the entire container of sweet potatoes to enjoy if he would tolerate it. I think eating is definitely his biggest challenge right now (followed by sleeping).

We're getting over a touch of the blues by enjoying the warmer weather. LJ, Nanny and I took a nice walk yesterday. Another first was getting out and inspired by the Baltimore Crafts show. We did really well in the car, and I think living in the moment helped me capture that positive experience. Lew didn't have any major meltdowns (it also helps to have someone sitting in the back seat willing to shake a rattle toy until their wrist starts to cramp!) and he slept most of the way.

We've also been drawing on our energy and learning more about Lew's vision problems. The ophthalmologist thinks the patching has made some progress with his eyes focusing and tracking. But he still prefers his right eye. When his right eye is covered up it takes a minute for him to adjust and use his left eye. It is still turning inward when its not patched. So, we will continue setting trends and alternating the eye patch for the next two months. Surgery is definitely possible. There is a small window of opportunity to improve LJ's binocular vision and if we decide to go the surgery-route the doc wants to do it around 8 months of age. He'll be fine I'm sure. Me, I dunno.

On another note, we started Lew on Reglan for his retching syndrome. Since we discontinued the use of Erythromycin he hadn't been on anything for about ten days. We really noticed an increase with the retching after every feeding. The GI doc had prescribed the Reglan within a few days of his allergic reaction but we were reluctant to give it because of the medication's side effects. Its been known to cause seizures, muscle jerks and jitteriness. After discussing it with Lew's neurologist and pediatrician, we determined that the benefits outweighed the risks. And luckily we haven't seen any seizure activity so far.

Enough of that. Something wonderful and nice that really thrills me is the emergence of Lew's smile this week. Playing peek-a-boo and tickling his chin...making exaggerated eye movements and silly faces. So we're still taking things one day at a time.

Where'd the Weekend Go?

You know it's not the weekend anymore when things seem to be heading down the expected path of normal weekday semi-chaos.

Lew had Speech Therapy this morning with Danielle. Danielle pretty much terrorizes him with pacifiers, bottles and brushes until he cries. Then she says she's sorry and at least that makes LJ's mom feel better. Soon enough he will say goodbye to feeding tubes and eat normal. Can't wait.

Tomorrow we have a follow up visit to the Opthalmologist for his crossed eyes (see pirate picture below). Then Thursday Lew has Physical Therapy. Speaking of physical therapy, we all know what that is right? Well in a nut-shell it means pain + torture. The PT- M-dogg will help loosen his limbs as we chat about once upon a time living in the District of Columbia. (Megan and her fiance just bought a row-house in Mt. Pleasant, DC. I think Lew's favorite part is watching her!!. He's getting some STYLISH hand splints hopefully by next week to help get his little hands out of the fisted position. Last week at physical therapy he fell asleep, WHILE his fingers were being twisted and bent. How does one fall asleep during that kind of pain? How uncomfortable to fall asleep while someone is talking to you anyway.


"what is your favorite rattle toy" Megan the PT asks.
How can he answer that when he's jumping on fluffy frosting clouds in dreamland?? Finally he came back to reality. Megan coos in his face "Were you asleep" she asks
"ummmmmmm" the drool on the activity mat gives it away. Dang.

Must be those late night talks with mom and dad that make him drowsy- he can't help himself, I love him all day and night. We will see what today brings. Now we're off with Nanny and Didi to check out the American Craft Show in Baltimore----I'll let you know if Lew behaves or can't help himself to fall asleep again...or cry the whole car ride.

Teach Me In the Key of Life

I hope Josh doesn't look at this post...he accuses me of getting all cheesy and overly sentimental. But I saw this poem the other day and thought it was very fitting!

Teach Me in the Key of Life
by Mimi Chenfeld

I am waiting for you
I have been waiting all my life
to spend this time
with you.

I am full of questions, adventures, wonder, curiousity,imagination.
I am full of fears, doubts, confusions, nightmares, dreams.
I am the Cowardly Lion. I need a badge for courage.
So do you.
I am the Tin Man. So tight. I forgot about my heart.
How’s your heart?
I am the Scarecrow. Hangin’ so loose my brain feels unhinged.
Does yours?
Sometimes I’m
GrumpySleepyDopeyBashfulDocSneezyHappy.
Sometimes I’m seven new dwarfs as yet unnamed.

I love to sing.
I know the words to 2,437 songs.
Teach me through songs.
Let me paint, doodle, scribble, draw, carve, fix, sketch - DO.
I can’t keep still.
I’m a spaced-out, far-out, Star Wars, Superman, rock ‘n’ roll, disco,
punk, psychedelic, tuned-out, right-on, cool age,
electronic, stereo, video games, computerized, technicolor, ten-speed kid!
I need action!
Keep it moving!

I love to read baseball cards, album covers, TV schedules, movie ads,
license plates, T-shirts, buttons, posters, cartoons, cereal boxes,
recipes, highway signs, historical markers, magazines, picture books,
sad stories, weird poems, animal histories, lost-and-found boards…

Let me ask my questions - even if you don’t know the answers.
Dumb questions, like who started numbers?
Do caterpillars know they’re going to turn into butterflies?
Where does the white go when the snow melts?
Why does time fly?
How do we see?
What do you see?

It’s not my birthday, but every day can’t we celebrate SOMETHING?
Colors, seasons, Tuesdays, Mexico, circles, houses, maps, our names, numbers, one seed, our journals, favorite books, inventions, rivers, peace!
Can we celebrate our country on the fourth of October or the twelfth of May?
We don’t have school on the fourth of July!
Every day let’s celebrate SOMETHING!
Life - the wonder and power and miracle of Life - of being here, learning together, with all our fantastic powers.

Surprise me.
Amaze me.
Startle me.
Challenge me.
Try me.
Laugh with me.
Love me.
Teach me
in “the key of life,”
and I promise I’ll
surprise, amaze, startle, challenge, try, enjoy and love YOU!