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.
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?
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.
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...
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.
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!
Hope you all had a fantastic 2009 and fingers crossed that 2010 brings lots more good memories. Wishing you laughter and cheer all through the new year from our home to your home!
If there was a therapy of the week club, we would be sure to join it. Did I mention that this post might be all over the place? We've just scheduled Noodles for his first HBOT session. Hyperbaric oxygen therapy is a pressurized chamber where LJ will sit while pure oxgygen is administered.
All our research concludes that there may be significant upside, even though that's based on anecdotal evidence (it's also hard to trust people when there are so many people scheming against parents who are just looking to heal their child). The downside, even according to skeptics, seems to be that we may be flushing our time and money. No different than the downside of any other therapy, when you get down to it. Since the cost and time commitment are not (terribly) prohibitive, the anecdotal evidence is compelling and the consensus seems to be that we will at least do no harm, we've decided to go for it. Perhaps in the near future there will be proof that it works.
The chamber looks like this except I'll be able to hold Lewis during the treatments and have to drive him back and forth to Rockville for 40 sessions. We are beginning on January 12th.......
I know that we can't waste time thinking about the future. But I feel so much better knowing that we are doing everything we can to give Lew a better life. If this works it might mean he doesn't need a wheelchair. Or it might mean that he won't have speech problems. Or it might mean that he won't ever need eye surgery again. We're not overly optimistic but we feel it can't hurt to try what's out there. We'll post again with pictures and updates when we've started. As you can imagine we are very anxious and nervous but at the the same time we're pretty excited about the what-ifs.
We've also hired on a musical therapist who will help us reinforce the speech therapy goals through melody and the occupational fine motor goals through the use of instruments. I can't carry a tune, and though it's nice that our friend Bubbe offered to skype with us and sing showtunes (her favorite not mine), we thought we would try a licensed music therapist. It will hopefully be a lot of fun and not seem like therapy to him. His determination and courage amazes me, but some of this therapy has got to be fun. Music therapy has even been shown to reduce pain- so at the very least we can help LJ get through retching through the use of music. Who knows, Nate might be joining in the jam session with us once we get familiar with everything. You can check out musictherapy.org for more information.
And Lewis has still been trying to flip and roll from his back to stomach alot. He's also trying to walk with assistance. So we "test-drove" a gait trainer and we are trying to work the system again so that he can get one through early intervention. It will help him learn to distribute his weight more effectively so he can start exploring things and gaining independence. Here's the ferrari version our therapist hopes we get because it has more of a cause-effect relationship with weight suspension. Up and Go Gait Trainer There is also a possibility of getting a hand-me-down version of this one depending on what the PT thinks...and obviously this would be the most feasible version http://www.adaptivemall.com/ponysize0.html Its nice to think about the little boy who used to need this- he no longer needs it as able to walk independently. I dream about those days.
We had a family trip to Florida last week. We were pretty lucky to get stuck there because of the blizzard in Virginia and DC-our flight was canceled the previous day. We busted out some boardgames with the cousins, had a sleepover too, spent lots of good time eating yummy food and fit in trips to the beach, aquarium and playground.
When we were coming home through the airport yesterday the security lady asked Nate what his name was. He replied correctly. Then she asked him what his little brother's name was. She examined the ticket as he responded "Noodles". We had to prompt him to proclaim his real name. As you can tell, they let us on board. The kids did great on the airplanes. When we got to Dulles Airport, there was a plane that got stuck on the runway because of the snow. We had to wait a very, very long time to get to the gate. And then we had to wait even longer to get our luggage- needless to say the airports were a zoo. Nate wanted to go immediately back to Florida. LJ finally had passed out from exhaustion in the Ergo carrier!
The punk lovin' the shades
Such a sweet moment with Nanny
I'm in complete love.
getting some awesome quality time in with cousin L
How to make homemade sugar scrub:)
If you close your eyes and pretend that you're back at the beach, you'll actually be there!
and this is what a blizzard looks like around here....
So what's causing Lew to not be able to eat? They did the modified swallow study, upper GI and button test yesterday so we could see how LJ's mouth, throat and esophagus behaved while eating and whether the Nissen was still intact.Didi and I went with LJ while M, the nurse aide took Nate to school and Bop did pick up since it was sure to take more than three hours.I am also so glad our speech therapist offered to join us as well because I had been so anxious about getting Noodles to swallow enough to get any results from the test.(LJ previously had a lower GI test back in May so we knew already his intestines and stomach empty normally). However this GI test proved that the Nissen is still holding up well. Through the modified swallow study he was next able to sit in a feeding chair, sit and eat pureed avocado that I brought ("honey" thicker consistency and "nectar" thick consistency) mixed with barium. It was not a pleasant experience for any of us… lots of coughing, gagging, and crying (screaming). He did okay for the first three bites but either through fatigue etc just brokedown afterwards. Luckily they never subjected him to loose, wet liquids. Unfortunately, he did aspirate, which means he has mild dysphagia (food-sticking) and he is at risk for aspirational pneumonia.
There was a lot of medical speak that came out this x-ray, but what we took away from it is that Lew's swallow pattern is abnormal though the actual anatomy of his mouth and throat is normal.In the end, his anatomy just doesn't work the way it should.They showed that his esophageal flap wasn't protecting his airway and the barium mixture just pooled in his throat until he essentially must feel like he has a foreign body in his throat. There isn’t any obstruction or any foreign body hindering his eating so the consensus is that this is probably a neurological function (specifically, the pharyngeal phase of swallowing.) At least we now know to be extremely careful with oral feeding attempts because he could get really sick. It also indicates to our therapists that they need to adopt some cold therapy (a tiny laryngeal mirror that is similar to what dental hygienists use) to help sensitize the back of his throat in order to become better aware there is something there and in the end, organize his swallowing and protect his airway. We also have to use thickener such as rice cereal or "SimplyThick" food thickeners so that he has time to react.
So what do we do now? I suppose that's a question for another day.
Lots more practice which we hope will be at the Kennedy-Krieger soon! The Kennedy-Krieger recommended he come on a weekly basis as an outpatient for oral-motor and behavior therapy. There is a three-month wait list for that. So it's hurry up and wait, but at least I feel glad they didn't outright say he wasn't a candidate. The nutritionists, nurses and staff were all very professional and I feel like they really got a good glimpse at our feeding routine. The drive isn't fabulous but the facility is nice and at least we won't have to uproot the family for too long unnecessarily. He's just got to wait 6 more months before he might be admitted into the intensive 4-6 week-long inpatient feeding program. They want to maximize his potential by working on basic skills before we go full throttle...even more so now that we have the information back from the swallow study.
"Noodles wants to make sure nobody forgets about him!" So incredibly true. But this also made me realize there is another little boy who lives here, who scrambles to keep himself heard above his retching, wails and feeds.
He has his moments, but most of the time he's such a good boy. He loves legos, cars, police, firemen, dragons, knights and c-h-o-c-o-l-a-t-e. He has a huge soft spot for "words", Curious George rainboots and of course his life partners (Giraffe and Backup Giraffe). He's at a great age; he's old enough to be really excited about learning and life (he asked me the other day when he was 18 if I would let him drive my car! When I replied of course, he responded 'well then, I will have to get my own car), and yet not old enough to not be excited about these things (to which I responded 'well then, you'll just have to get a job'. Of course I want to give him the world:). Do you know what I mean?
No matter what or who he becomes, where he ends up, somehow in some way he is sure to put a smile on your face. That's just what he does for me. Happy birthday big guy! We love you.
Trying and get LJ ready for the feeding evaluation at Kennedy Krieger Institute tomorrow we stripped him down and spooned out some yummy chocolate pudding on the high chair tray. We were curious if he was not being forced to eat it, and it if we could make it his own idea, perhaps the chocolate would go from his hand to his mouth to his stomach. Tragic turn of events as you see here, that's not the case; he doesn't even want to eat if it is chocolate being offered. He was upset from the moment he touched the cold, wet pudding. Luckily this was Nate's idea of heaven and he finished off LJ's chocolate pudding straight from the tray no spoon required...he's a serial chocolate eater! And then they both got hosed down shortly thereafter.
It always seems to snow on December 5th. It didn't fail this year - and it was wonderful. We loved every second of this cozy weekend. Now we're gearing up for our hectic week of Kennedy Krieger feeding evaluations, GI studies, gtube placement checks & swallow studies. Oh what fun! Well, at least the light at the end of the tunnel will be Nate's bday.
So this is some pretty big assistive equipment for our little king. He's enjoying the new posture system and hopefully it will give him better pelvic support so he can start learning to move the right muscles. We somehow managed to get his new throne paid for entirely by Arlington County's Parent Infant Education program- go Mama!!! And it's a good thing since it was more than 1k.
Songwriter, Craig Bickhardt, who's written for Ray Charles and Johnny Cash, has a little boy, Jake, with Cerebral Palsy. He wrote a song for him called "Giant Steps," and it's beautiful. Here's one part:
Taking giant steps, giant steps A leap and a bound barely touching the ground Time to stretch those wings, try new things Learning to reach for your best Taking giant steps
Soon the day will come when you’ll run ahead of me Certain of yourself and what you’re gonna be But whenever you stumble and lose your stride May you never lose the boy down inside Taking giant steps
we are thankful. lewis seems to be doing better- that and he slept through the night last night. finally. thank you.
nate is giving thanks that mommy was distracted while baking their cake for the holiday;) josh is giving thanks that lj let go of his death-grip on daddy's curls. everybody is doing better. we are thankful for all our family and friends for helping us get through this past year. we are so thankful.
I know that we can't waste time thinking about the future. But I feel so much better knowing that we are doing everything we can to give Lew a better life. If this works it might mean he doesn't need a wheelchair. Or it might mean that he won't have speech problems. Or it might mean that he won't ever need eye surgery again. We're not overly optimistic but we feel it can't hurt to try what's out there. We'll post again with pictures and updates when we've started. As you can imagine we are very anxious and nervous but at the the same time we're pretty excited about the what-ifs.
