Checking In

Here's a video of Lewis standing tall-WITH SUPPORT. He really prefers to be upright. His legs are quite strong; now if we could transfer some of that love to his abdomen maybe we could get him to sit independently:) That giant blue band aid on his tummy is Kinesio tape.

Hot Stepper from Jenn S on Vimeo.

Here's another shot of the cutie patootie completely exhausted after a session with the feeding specialist at Children's Hospital. She made a comment to me that has really stuck in my brain. And that is that Lewis is a smart child. "The hardest part will be to strike that fine balance of focusing on his physical limitations and keeping up with him intellectually." As if I don't have enough to worry about! She doesn't think his hand splints (Beniks) are doing anything (actually only impeding his ability to hold things)...not even wearing them at night... so she tried to Kinesio tape his right hand for comparison next week. It is less bulky- I'll give her that.

I can't bear to see him get frustrated because he is unable to do things because of his body. It was kind of a tough blow even though I fully understand and believe that our prayers were answered. Yet these prayers are so different from last year. I realize that we didn't expect (though we did pray) for a complete miracle cure a year ago, but we hoped and wished for LJ to have a good cognitive outlook. We told ourselves we would figure things out with a physical disability. We've done our happy dance since things look to be good and now we want more. You are never really satisfied I guess.

On a lighter note, I don't have much more to report. We did have a positive visit with the GI doc who said Noodles needs a larger button. It might help him feel more comfortable in a seated position too. I will be putting in the new tube all by myself once it arrives...go me! And another minor victory!! I got the doc to write us a Rx for silver nitrate sticks. These are what the nurse uses to clean the granulation tissue around the feeding tube. We had to go into the office on a weekly basis to have this done- so now we will save ourselves a lot of time and hopefully keep the germs at bay!!

Baby Steps

This morning during speech therapy we did a sweet potato "tasting". The sweet potatoes are the last from our organic farm share (unfortunately they do not do a winter crop) and I melted some butter with them to give 'em added umph! He recovered very quickly from his gagging impulses. Two very sweet pictures are below. Lately, he's also been a stinkpot- knocking the bowl of food onto the floor which makes a really big BANG that seems to delight him. It's as if he's saying take that, food!
Have a happy weekend!

Just a Little Bit More

So far this has been an exciting week and a half. Noodles had some shots stuck in each leg last week & three vials of blood drawn and quite literally never stopped crying the rest of the appointment from it. This was the first time I got a glimpse of what it would be like to have a baby in my life that cries non-stop. I needed to be nursed back to life because my nerves were frazzled and I was just emotionally drained by the time I buckled Lew into his carseat. Two technicians tried to get the blood work drawn up, collapsed the vein on his right arm and finally moved to the left arm. We should all be rewarded with bottomless glasses of wine, undisturbed naps and massages at our every desire because baby screams pack the nuclear punch.

Our little guy has also finally decided to allow his teeth to come in ... TEETH ... not tooth! Last night and this morning we endured the rather painful process of 2 teeth as they made their debut. Hello drool soaked everything. We have been awakened in the middle of the night for several consecutive days now. Tonight is a little better for him, but we are not out of the woods just yet!

He's also adding to the daily repertoire of things he can do, more rolling onto his back, tons of bringing hands to mid-line, dropping all his toys from his highchair tray onto the ground, a lot of weight bearing on his forearms, making new sounds and definitely vocalizing his objections. Lew is still really delayed so I am cautiously optimistic. The new feeding specialist at Children's Hospital put Kenesio Tape on his abdomen and back (first she shaved his back fuzz to spare him any pain when it finally gets taken off. He's his father's son, just kidding. Considerate of her, right though?). Basically, since his trunk is so weak and LJ tends to also hyper-extend his back when he is uncomfortable the therapeutic tape acts as a cue to his musculature. It's incredibly fascinating stuff and he looks like a big blue "X" marks the spot on his tummy. Guess it coulda been worse...what if the tape only came in the color pink? It's water-resistant tape so we went to Aqua Therapy the next day and drew quite the looks. wink. wink.

Oh yeah, and the GI folks have changed his Rx formula yet again....I am pretty sure this is change #5. Now we are giving Elecare a whirl. It is for children with "serious feeding issues" according to the "label". But we HAVE noticed a decrease in retching so we'll take what we can get. We've increased his tastings to include four foods: homemade pureed sweet potatoes with butter, avocado, banana and yogurt. I've also been able to thin those out significantly so we can squirt them through his feeding tube and his digestive system will get all the added benefits. Feeding is still a battle that we haven't won yet, so we've applied to the program at Kennedy Krieger. We got an appointment for an evaluation in December. That's all I can think of for now.

the best part.

I think he really enjoyed that cupcake.
In fact, some icing may have made it into LJ's mouth before it made it on to his cute outfit.

LJ even got to visit with NICU nurses Bridget and Kira.
Bridget escaped the camera too quickly but he swears he didn't cheat on you! And here's Nate manning the "ball pit".

A Year of Lew

What a difference a year makes. When you were born my heart ached. We had so many questions and concerns. I've cried for all the suffering my beautiful baby boy would endure. I've cried for the years of frustration and loneliness he might feel. I've cried for all the hungers he would feel that could never be satisfied. I've cried for him, I've cried for me and I've cried for all of us.

A friend of mine told me that she couldn't make her kids healthy and she couldn't make them smart, but she could make sure they were happy. I just want him to be a happy boy. I can't make Lew healthy and I can't make him smart, but I do make sure he's happy. And he does the same for me. I can't dwell on how painful it is to not see him sit, crawl, eat, talk and pull to stand at a comparable rate to other healthy babies. But I'd take every ounce of sickness and discomfort for him just to be happy. It has been hard to get to this point. But after all we have been through with Lewis, I still cannot imagine my life without him. As incongruous as it was that gorgeous sunny-blue-sky day he was born one year ago, I had HOPE. I had a beautiful boy & I was his mom. And I was going to do everything in my powers to make the world right for him. So wish fairy, if you're out there, could you help us out?

Your smile makes my heart melt. Your daily determination makes my heart swell. Watch out, world. The world has a lot to learn. My heart is full. Happy Birthday little man. I love you.

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?