Our schedule: Josh and I get a date Friday night with Marnie and Corbin at a fabulous restaurant called Marvin; Nate has soccer, birthday parties, dinner Saturday night at friends Carolyn and Andreas' house; Purim carnival at Nate's school, visit with Great Grandma Et + some quiet time. Perfect.
This is LJ's buddy Max; they used to be roommates at the NICU. He's doing beautifully and is very mobile!
These last thirty days have been filled with hopes, projections and memories of LJ's first year of life. He and I have been constant companions during his HBOT therapy and I think we're both SO looking forward to a break. It has been and IS an accomplishment. I have endured tears, screaming, ears popping, endless squirming & even frothing at the mouth when LJ's secretions get too voluminous for him to handle. And I wish I could say the time flew by, but at least there is a light at the end of the tunnel folks; next Friday will be the last session for a little while!! I find myself daydreaming about days where therapy ceases to show up on the schedule. I have glimpses of weekday "laziness". I imagine what it is like to not have to fight to do "spoon sessions" with Noodles and the thought of taking a leisurely walk together with Tango until we feel like heading to a cafe to meet a friend for a cup of coffee and a playdate. That's ridiculous though, right. I know it doesn't fit our "norm". But still, I feel so lucky that we've seen a little progress and we continue to have the time to enjoy life's little moments. Like LJ's two new teeth that have cut in about half way. Like when Nate sang Twinkle Twinkle Little Starto Lewis when he was grimacing in pain and clasping his chest with his fists towards the end of a feed. It was like magic. Lewis calmed down.I wanted to have LJ so he and Nate could have one another to love. Of course, they have both shown me such love on so many different levels. It's scary and awesome all at the same time. I wish I could have it all without having any of the fears. Wish Fairy, are you out there?
Today marks Noodle's 24th HBOT treatment-and his mind is clearly learning a lot of new things. 16 remaining sessions and then our dive will be completed! LJ is a lot more comfortable with the chamber now. We've also gotten used to a routine and every little bit helps. If LJ hasn't slept well or is too full (or has a huge blowout as was the case yesterday!) the session doesn't go well. Once those two elements are eliminated, he seems to be much more comfortable and even rocks a fantastic smile and babbles to us under his hood. Improvements of note have been much improved strength bearing his weight on his forearms. This has meant that has been doing the army-crawl all over the living room. Perhaps we are on the verge of crawling here, who knows? I think if it does happen I will perhaps fall over the edge of sanity!
Noodles is also benefiting from more relaxed hands. He has gotten a lot better at isolating his pointer fingers in order to experiment with different sensory mediums. And he is practicing using his weaker side~right side~a lot more too (below picture of him playing) I wish I could report that we've seen dramatic results on the eating-front, but unfortunately that's just not the case (we'll hopefully be reporting more on the Feeding Clinic front later this week). On the upside, he does seem to be quite "chatty" still so that's a positive. Now if we could just get him to master saying Mama and Dada :)
Today, we're celebrating love. It's in the little things. But oh, I do love these boys. Goofy, sweet, hopeful and they make me laugh. To love you must nurture one another, so you can grow through tough times. We've kept our dreams afloat and seen such courage from Noodles and compassion from Nate. I am grateful for this new perspective. It's taught me about what's important in life and how to breathe in every single moment- especially the hard ones.
Last weekend we made valentine cards together for Didi and Nanny. While it was hard to keep LJ's hand from fisting once I put the paint on his palm, I think we had a partial hand-print success (his is the pink one, Nate's is the red one- they both have big hands). What a beautiful moment that made me happy and full of love.
Josh, I love you more than artichoke hearts. I love you more than pedicures. I love you more than coconut cake. I love you more than dance parties. And I even love you more than our down comforter! One of these days I am going to pry our camera away from our sons and take a snapshot of you for posterity:) It'll be a picture of the man that is mine, and not that of a father who is best known for tickler, snow shoveler, bbquer, fixer, story-reader and human-slide.
Happy Valentine's Day! May your hearts be FILLED with love today.
The day before yesterday we got 2' of snow. Fortunately, we've been spared a power outage. Though Dominion did have to come out yesterday with a cherry picker since there was a broken tree branch on our power line to the house. I doubt they would have ever acted so quickly if we hadn't gotten Lewis on their medical priority list. Since Lewis needs his electric feeding pump as part of his treatment, he qualifies. Sadly, this didn't help with the big cedar tree that is down in our back yard-it's resting on my dogwood:(....The snow is coming down-today's estimate is another 10-20". Snowplows have even stopped until the blizzard conditions lighten up.
So we've hunkered down, done some reading, singing, playdough-making (yes, Nate turned intoan "apricot" color using the pink and green food coloring), slow-roasting (so far a Chicken Tagine one night and a Venison Roast tonight), baking (Nate has coined the new name for Dream bars_they are now referred to as A Wake Bars in our house), self-teaching how to reupholstery (turns out staple guns are fun for getting out pent-up aggression), doink-it dart playing and movie watching (Josh and I watched Inglourious Basterds, a film by Quentin Tarantino the other night. Really violent, but well-done)! My little snow men are climbing the walls. We're ready for the Great Thaw. At least tomorrow we might be able to go out sledding...That and dig out our cars. Until then, I think I'll go eat some more, and then sleep and perhaps proceed again 2x.
So we've stopped whining. Quit crying and we're trudging along. The annual state evaluation for Noodles a few weeks back had us reflecting on how much he has endured and triumphed over 2009. Here's a brief overview of what was said in their findings with regards to what we feel is his biggest challenge-EATING. The gross motor (Rolling? Check. He's started doing an army crawl to get to things on his belly; we are still working on sitting up AND walking no doubt) and fine motor is obviously still a large piece of the moving puzzle but once we can get Lewis eating everything in sight*@!, all possible future scenarios might be more clearly realized for Lewis.
He has made great strides in the last 6 months in all areas of development. Self-regulation has been slowly improving and recent months have seen the greatest changes (one has got to think some of the improvement is HBOT doing it's thing...but in the end the cause is irrelevant). In conjunction with Lewis' treatment team, we have been working on strategies to help him manage his GI discomfort through nutritional changes (Elecare formula rocks! as do Farrel Valve Bags) and sensory processing strategies. As Lewis has begun to use his body and voice more (listen to the below vimeo for evidence of his budding vocal chords) and more Recorded Sounds from LJ_February 7, 2010 from Jenn S on Vimeo.
he is now able to work through trying sensations and challenges without immediate physical intervention (i.e. holding, rocking, etc) from us. Lewis is now able to be soothed by voices and talking and also has begun to self-sooth by sucking on and mouthing his own hands. Lewis' sleep and reaction to tube feedings are much more appropriate and organized.
In regard to feeding, therapy has continued to work in conjunction with the medical and nutritional teams to achieve optimal GI functioning and nutrition. LJ, who was previously unable to tolerate the sights and smells of foods, is now expressing interest in handling and tasting foods (still primarily sweet potato, avocado, apple sauce and yogurt). He continues to be defensive orally probably attributed to his Mom's feisty genes, but is able to tolerate more and more flavors and oral input on a daily basis. Lewis has recently demonstrated the ability to tolerate a pacifier near his mouth and is even demonstrating some ability to use flutter-sucks on a pacifier. Noodles responds best to a natural, respectful and slow approach to pre-feeding activities...how civilized.
His future therapy will continue to focus on increasing his exposure to foods both orally and environmentally (sitting at the table, using his hands to explore food items), speech therapy and music therapy. Additional therapy will focus on increasing Lewis' grasp and trunk control to optimize his ability access food and facilitate healthy GI function. We might even be considering a day treatment program at The Center for Pediatric Feeding and Swallowing Disorders at St. Joseph’s Children's Hospital in Paterson, NJ. The Kennedy Krieger Institute in Baltimore still has LJ on a waitlist for once-weekly therapy. This other program is highly recommended by one of our feeding specialists and this would be a typical daily schedule for five weeks straight (and they can take him in MARCH!!)
9:00Arrive, check in with nurse or feeding therapist
**Please arrive promptly!**
9:15 Meal
9:45 – 11:00Other Therapy / Playroom
11:00Meal
11:30 – 1:30Other Therapy / Playroom / Naptime
1:30Meal
2:00 – 3:30Other Therapy / Playroom
3:30Meal
4:00 – 4:30Leave to go home
Here's one of the fabulous harnesses Didi just finished sewing to help him gain optimal postural control at the table:
I can vividly remember this time last year. I can hardly believe we've come this far. What an adventure into the unknown. I'm taking your predictions.
Nate watched as Josh shoveled the walkway this morning. He worriedly asked Daddy not to get rid of ALL the snow! Because he needs some snow to go sledding this morning. With snowfall looking like it is at 12 inches right now and it's still coming down at a good clip (some say 2 inches an hour)...I don't think that's gonna be a problem. Keep your fingers crossed we don't lose power. We've been charging LJ's feeding pump for over 24 hours now just in case.
We're off to go sledding! Enjoy your winter wallop.
Things that make me laugh to start off your weekend…
“You always help a lady up off the ground.” Said by a first grader after a student ran into a teacher and knocked her down.
“There are better ways to communicate. The growling will stop.” Said by a teacher when two first graders both wanted the last swing available.
“Really, boogers probably aren’t protein. I don’t care what your mother told you.”
Said by a 3rd grader after a fellow student grossed out his table in the lunchroom.
“Come on! Ms. Teacher just told us to sit on the ass fart.” Said by a Kindergartener when they were getting ready for an activity outside and had to sit on the asphalt drive.
O2 is hard work. Twelve treatments. Check. Only TWENTY EIGHT more to go!!!! Here's what LJ's back looks like at the start of this week's treatments. I'm also going to post some of his recorded sounds each week as a benchmark as well. He is quite vocal right after the treatments. He's undoubtedly complaining to mommy about having to sit in that claustrophobic, ear-popping, boring capsule for yet another day in his lil life...but I'll let you be the judge.
