I Look Away for Two Seconds....

LJ's Feeding Therapy with Carrot Sticks from Jenn S on Vimeo.

Carrots?  When did that happen?

So it's been quite hectic around here.  This was LJ's schedule this week (not to mention throwing Nate's into the mix)- I think I have six new gray hairs.  He also pulled out his button in the middle of the night this week...I reinserted it around 5am that morning and it was kinda loose later in the day.  So we checked it to see if it was still properly inflated.  For some reason it wasn't so we had to re-do the whole procedure the very next night with a new button.  Noodles was not a happy camper but he is a trooper.
Monday: 9:00 doctor appointment, 10:30 Physical Therapy, 1:00pm Feeding Therapy & 3:00pm HBOT
Tuesday: 8:00 hearing test (some hearing loss may need tubes), 11:30 HBOT, 1:00pm Music Therapy, 3:30 Aqua Therapy
Wednesday: AHHHHH, 8:45am doctor appointment then nothing until HBOT at 3:00pm. I got to celebrate by going to lunch with my mom.  It was so very relaxing.
Thursday: 9:00 Speech Therapy, 10:30 Occupational Therapy, 11:45am HBOT
Friday the only thing we have is HBOT woot woot

Tonight, Nate said to me as we were leaving a restaurant where we ate dinner: 

Nate: "Mommy, can you control God?"
Me: "No, but believe me I'm a control freak.  And I sure wish I could! How come?"
Nate: "Oh.  Because I need someone who can control God.  It's soooo cold out here I can't feel my fingers."

Priceless.

LJ and I are getting a little more acclimated to HBOT.  It's still not easy to keep everyone comfy for the hour + but I think that it is starting to show little bits of improvement with his hands becoming more relaxed and his overall energy level.  Here's a picture of him in the tripod sitting position.

He can hold it without support for a couple of seconds. We're going to document this position once a week for the duration of HBOT so that we have something concrete to compare progress.  The hope is that both the curvature in his back will decrease and he will be able to sit independently.

 Here's another photo of him playing with the apple peels when I was making a tart last weekend.  He was only interested in dumping them on the floor and teasing Tango with them;)  The bib isn't really a bib; rather its a handmade trunk harness that we got to borrow from the Fairfax County intervention folks.  It has velcro which gives LJ awesome lateral support, abductor and trunk support so that he can develop the proper alignment for sitting up and ultimately eating.  Didi is going to be copying the pattern so that she can use her nifty new sewing machine- and so that Lew can have two of his very own harnesses for keeps!

And last but not least...here is the froggie book shelf that Bop just finished making LJ.  It's adorable.  I think he could go into business.  Don't you?

Courage

Courage doesn’t always roar.  Sometimes

courage is the quiet voice at the end of the

day saying, “I will try again tomorrow.”

Dad's High Pressure Holiday

I had the day off today, so Jenn asked me to "guest star", both at LJ's therapy and on the blog. We had speech first thing this morning. Mostly, I watched and cheered - LJ did wonderfully. He still isn't eating or drinking, but his oral aversion has been dramatically reduced over recent months. (Largely a result of the diligence of his Mom, his sitter and his therapists). During 40 minutes of therapy, working with a pacifier and various other toys in/around his mouth, he gagged only once, and recovered quite quickly. The speech therapist was very pleased. It was great to see LJ get through a productive session without melting down at the end.

Later in the day, Lew had Hyperbaric O2 Therapy. We were pretty nervous about it, since he'd gotten very worked up in the first two HBOT sessions. Jenn and I were really starting to be concerned that the whole experience might be too traumatic for him at this point. Today, I went into the chamber with him...

Success!! Our Hero was a little fussy at first, but overall, he did quite well. LJ slept for a few minutes, smiled some and even relaxed long enough to fill his diaper. I don't think LJ's relative calm had much to do with me - Jenn did the heavy lifting, getting him used to the situation. Perhaps the third time's a charm - I just hope the trend continues. I will say that HBOT is not for the faint of heart. The chamber is cramped, loud and uncomfortable. Plus, 1.5 hours with very little outside stimulation is a loooong time.

Like you, I hear about most of LJ's therapy second hand. When I do get to participate, it isn't always a pleasure - I know I got lucky today. We've got a long way to go, but it is great to see our boy making progress.

To Infinity and Beyond.....

HBOT started!  It was a bit of a challenge to keep LJ calm at first, despite our agreement to only withstand the oxygen administered at 1.5an atmospheric pressure.  We couldn't have a phone, camera, jewelry or synthetic clothing (there've been some isolated incidents of fires at other clinics) inside the chamber- no way to communicate with the outside world except for light-blinking and talking through some headphones.  Luckily they had these little port holes ( a la submarine-style) hooked up to TV's so we watched Toy Story for part of the time.  LJ reminded me of Buzz Lightyear with his helmet on.  It wasn't a laughing matter though when his hysteria turned into foaming at the mouth on the ascent.  We were able to signal to the technician to give us some time to calm down before continuing with the treatment.  Here's a picture for proof (see below).  The descent was uneventful.  We are doing one treatment a day for the next two weeks.  We haven't set the schedule for after that.  But be sure I will bring some of his favorite books to read to him for the future treatments! 

Tomorrow morning we have our state PIE annual assessment meeting with all of the therapists.   These are designed to help set attainable goals for the upcoming year. LJ has to meet at least one of the three criteria to qualify for services.  Fortunately, or unfortunately he meets all three.  He has at least a 25% delay, he has a diagnosis of CP and he has an abnormal condition causing a delay in his growth (aka muscle tone).  I'm sorta excited because it means we can all get on the same page and regroup. I really like checking things off a list.  On the other hand, I know he is behind.  I know he is not going to grow up to be a pro-athlete.  I am going to the ends of the earth to make life easier for him.  So this is really just a formality-one that happens to be followed up by his 15-month health assessment with the pediatrician.  The journey continues...

Virtual Vacay

We are back from a wonderful getaway.  LJ was a rockstar despite his refusal to sleep on the flights.  We flew Virgin America and it was too much fun - free Wi-Fi,  all the flight attendants had British accents, movies and tv on demand, snacks and beverages on demand.....but the best part was the flight attendant who hooked us up (because I was such a brave woman) with our own row on the way out there AND a free glass of wine.  Coming home we saw (500) Days of Summer.

Big boy Blake and his Mom!  The weather was at least 20 degrees warmer in Los Gatos (named after the million or so stray cats that live there) then it was here in DC.  One kind of fruit or another grows in just about everyone's garden.  It was perfect.  Everything about it.  We checked out the Monterey Bay Sea Aquarium, then had lunch outside while we watched for sea otters.  We didn't exactly make it to the beach but I insisted on bringing back a Santa Cruz skate sweathsirt anyway.  Good food, good drink and good friends!  Meredith and I got to even take naps this weekend when the boys cooperated.

Meredith took us to a Mommy n Me Yoga class.  She and I had many glasses of wine.  We walked to the farmers market then played on the plaza.  We also enjoyed a delicious dinner with friends, Trent and Abby and their wee one, C.

When we got home Nate told me "he missed me and talked about me a lot while I was gone".  Sorry there aren't any pix from the "man" weekend because I had the camera!  But it was reported that Nate not only took over the middle of my bed, he now snores!  He had one too many parties, one too many takeout meals and not enough showers.

Since we've been home for all of 24 hours, Noodles has had Speech Therapy once last night and once this morning.  He got his RSV shot this morning as well.  And after that he practiced on his Pony gait trainer...the one we got from our online friends, Ellen and Max.  Max also has CP which he incurred after suffering a stroke at birth.  Each time I learn about Max growing up, it leaves my heart a whole lot more full because I know LJ is doing what he is supposed to be doing too.  He's growing up at his own pace.  You can get to know cute little Max more right here.  HBOT starts tomorrow and we are anxious to see how it all goes.  Check back for a post dedicated to the treatment.  Until then, LJ is catching up on his zzzzzzzzz's.

Weekend Getaway

What better way to lead up to the great HBOT day?  Tonight Noodles and I are headed to San Francisco to spend a long weekend with my childhood friend, Meredith, her hubby and their adorable baby boy.  Josh and Nate get to have a "man" weekend of which Nate has already informed me he gets to sleep on my side of the bed.  I'm trying to mellow out about flying solo with my little man....I'm armed with my Ergo carrier so hopefully I can strap him in and walk around the terminal til he falls asleep if he gets super fussy.  Now once the plane takes off is another story.  Benadryl anyone?

Amidst all the activities that are about to begin with new therapies, visits and doctor appointments, my favorite moments are sure to be hanging out at the beach (which happens to be my favorite place ever) with our babes and also sitting on the couch reveling in childhood stories and talking about motherhood curled up with a big glass of wine.  It's gonna be therapeutic.  My mind needs some clearing plus I have a hankering for some fish tacos and good guac.  I love me some guac.  Have a great weekend!

My Little Pony

It will cost you nothing to dream,

and everything not to.

-  author unknown

Ushering In the New Year

Noodles New Year's Tricks from Jenn S on Vimeo.