Monday, already?

Is it Monday already?  I can't believe another week has flown by?  Too much going on here.  Over the last week we've been busy.  Now that November is here, it seems as though things have switched into high gear.  Our first snowfall of the season, LJ's Halloween parade (I think he was scared and he cried most of the time), Nate's Halloween parade, Josh in California for work, verbal behavior therapy, water therapy, therapeutic riding, seeing the Great Gatsby performed by the Washington Ballet with friends and Didi, meetings with LJ's speech therapist and physical therapist, scheduling future appointments, picking up prescriptions, a fitting for new orthotics, a long walk with a buddy, a coffee chat with another buddy and LJ had a playdate with a new friend (my yoga friend's daughter)...sigh. The weekend was also over-programmed.  With Nate having two soccer games, my yoga teacher training all weekend and yesterday's Daylight Saving time change (which the boys did not allow me to recapture that lost hour) I'm feeling it today. Here's a bit more update for those inquiring minds.

Orthotics- LJ has outgrown these. Since his foot has grown, his arch has changed and his gait has improved he is no longer benefiting from the original DAFO's from two years ago.  We had the orthotist cast and mold LJ's feet last week.  Nate came along for the fun and he helped Noodles pick out some snazzy, new velcro straps and patterned foot pads. Hopefully the customized orthotics will be ready in three weeks. The new ones should also help improve LJ's balance and gait. Next up, shoe shopping to fit said new DAFOs :)

DMO Suit-Its working.  Though LJ resists having it put on each day, once it is on, it is subtly changing his posture. He sits up strong and beautiful in his chair and his new  It is remarkable how well he does immediately once it is taken off.  He can hold an independent, tripod, seated position for a couple minutes.  Prior to the suit, he was only able to hold himself up for a minute or less.  One downside is the zippers can pinch the skin, especially in the groin area.  As a consequence, diaper changes become apprehensive for LJ. The other downer is that the Gtube button keeps getting caught on the suit.  It's tight and you have to be very careful when putting on and taking it off.  Last week, his button accidentally got yanked out when taking the suit off. Balloon fully inflated got pulled through the hole in his tummy.  He was not a happy camper to say the least. Nate was instrumental in helping distract LJ as it was re-inserted.

DMO Glove- The glove is not gonna work.  We're bummed.  LJ is still involuntarily fisting his right hand all the time- including when the glove is worn.  It's never in a relaxed state.  We thought we might be able to have the orthotist adjust the glove so that the fingers could be reinforced. The other idea we tossed around was tightening up the material of the glove to get a 30 degree wrist extension. Theoretically this might abduct his thumb which in turn would help allow his fingers to extend.  In the end, the therapist and the clinical director agreed that the manner in which the glove's technology works was inciting LJ's palmar grasp- similar to when babies have a palmar hand grasp on a finger. The panel of material on the palm can't be removed so no matter what way the glove was manipulated it was not going to help LJ's palmar grasp.  We have a follow up appointment with the therapist next week to see if we can get LJ a new splint casted and molded. This splint will not be functional (he won't be able to do anything fine motor when its worn) but rather will be worn at resting times sporadically throughout the day.

Verbal Behavior Therapy- Here was the latest chart from our manding sessions in October.

The good news is that we're happy to see the item requests and MO prompts increasing steadily throughout the month.  The bad news is that LJ hasn't mastered some of the targeted signs we wanted him to learn.  So we are keeping them on this months list of targeted signs.  We're also changing this month's data collection.  We are continuing the target mands daily but it will be less time intensive.  Instead of tracking all his signs we are only collecting data on the 10 signs we are targeting this month.  If we can track when Lewis does a mand/request using the proper sign 5 consecutive times he has mastered that sign and we can move on to a new sign. 

The sun is shining this morning.  My brain is spinning but I'm not complaining.  We've got quite a lot planned for this week as well.  I've got a plan and I'm looking forward to making ground on some fronts this week.

7pm announcement:  LJ just transitioned from his knees and belly to side sit to a propped, tripod seated position all by himself!!! He did it 3 times in a row if not more!!! As I cried tears of joy, Nate ran and got him his own soccer medal from last year and awarded it to LJ. Melt. And lastly, Nate gave him a kit kat bar from the  trick or treat bag.  I'm blissed out.

The State of the Lewis

LJ has been much more interested in food lately.  He isn't really eating, per se, but he's gumming and sucking on a wide variety of things.  Lew has shown interest in Tostito's Hint of Lime Chips, Gerber Graduate's Apple Wagon Wheels, fig newtons, Milano cookies, pretzel crisps dipped in hummus, clementines, chocolate pudding, almond butter, pizza, french fries, dried strawberries and bananas, yogurt, goat cheese crumbles, cream cheese, marshmallows, Fontina cheese cubes, bread of any kind, frosted cookies, asparagus, sweet potatoes and even sushi (and our fair share of Cheerios).  Food picnics have been so much more laid back and productive (and very slobbery and messy :). He's also been sucking his thumb and eating his toes.

The botox injections have had mixed results. Noodles is now opening his right hand when you flex his wrist.  That pretty much rules out casting at this time. The splint is staying on for longer and longer periods of time...not sure if that's just because Noodles is resigned to it by now.  Another highlight this week: Kool-Aid play dough. We made orange-flavored play dough and used this activity as a therapy session- his right shoulder is looser now due to the botox and we were able to help him raise his arm and pour ingredients into the mixing bowl.  Our OT is also going to make LJ a weight bearing splint this coming Monday. It will hold his right hand open to assist with weight bearing- both stretching and strengthening the right hand muscles.


LJ had his preschool evaluation with the school developmental team for next year.  He completely surprised everyone when he was able to answers questions with his iPad and Proloquo2Go program.  Nothing too complicated but nonetheless when the team asked him to identify the picture of Daddy he answered with the picture of Josh.  He is accurately isolating his pointer finger and pointing out people like Nate, Tango and Emily.


Nate is doing well, like any five-year old, in turns endearing and exasperating. At times ignoring Josh and I; he goes ahead choosing what he will.  Though this morning was delicious.  He held Lewis up in a tripod sitting position, in the middle of the kitchen, making sure he didn't buck backward, and entertained him while I prepared the morning coffee and the boys' breakfast.  He was so proud of himself that his baby brother didn't cry on his watch and also that he was strong enough to handle LJ.

Tango is holding his own.  We are giving him IV fluids at home every other day and administering about 4 medications to help keep his creatinine levels under control.  He is anemic and still shakes, but his appetite has returned and for the most part he is behaving like his old, excitable self.  Hopefully this will last awhile. 

The Latest

Four weeks.  The feeding pump has been stowed away in the depths of some closet somewhere for the last four weeks.  It has been exactly one month since Noodles has been on the blenderized diet.  And life is so much easier.  Here's a sample daily intake (the only change is that we've added some salt, 1 tsp of Cod Liver Oil and reduced the Canola Oil to 2 tsps). The cod liver oil is for Vitamin D:

















Retching episodes are a thing of the past and I have to think its because of the new diet.  Emily has been a tremendous help figuring out what works and what doesn't.  Together, we've found a system that works.  We laminated the Homemade Blended Formula Worksheets, one for each day of the week, and came up with a menu plan for the week.  We use a china marker to adjust the food items from time to time and recalculate the total calories accordingly. It keeps us organized and each night we place all the ingredients for the next day in a container.  We add liquid the next morning and blend it up in the Vitamix. Voila.  The food is made for the day and we draw it up into syringes and plunge it into LJ's belly several times throughout the day. (he got turkey, potatoes, peas and apples for Thanksgiving yesterday O)

As of Wednesday morning, Lew is the proud new owner of yet another hand splint.  His right side, still the weaker side, doesn't ever seem to relax.  LJ always holds his right arm close to his chest and right hand fisting still persists. The old hand splint was too small and had disappeared anyway so our OT at Children's Hospital made him a new splint.  We have been working our way up to wearing it all day.  So far Noodles only tolerates it for about 20 minutes and he has figured out how to un-velcro the straps using his functioning hand! He's quick like that.

LJ prefers to communicate with sign language over his iPad (but we're still working with him on it).  He's producing more sounds when he signs, oftentimes making an "mmm" sound when he signs "more" or "ma". Lately he's also started making the "ba" sound.  The cerebral palsy makes it hard for him to control how his hands and arms move.  And it also makes it difficult for him to close his lips when he wants to create a sound.  Sometimes he uses his fist to help guide his jaw upward in order to produce a sound.  Still, I continue to be awed by him and he probably uses 20-25 baby signs/day.  Here's the rundown:
water ::  eat ::  yes  ::  no  ::  mom  ::  dad  ::  please  ::  thank you  ::  more  ::  all done/finished  ::  diaper change  ::  movie  ::  bath  ::  night night/sleep  ::  car/drive  ::  play  ::  ball  ::  light  ::  phone  ::  love  ::  want  ::  shampoo  ::  stars  ::  book  ::  hurt  ::  stop  ::  home  :: dance  ::  socks  ::  shoes  ::  wash hands  ::  hi  ::  bye

Therapy Thursday

For those who are interested: Lew's PT and OT would like him sitting up more when he's playing with toys. So far, he's not sitting independently, but he has made some progress. He's now able to tolerate some tripod prop-sitting for fifteen seconds...and then he falls over. Down below, you'll see that he's now got a floor sitter. His PT managed to get one from somewhere--she's like an equipment yenta or something--she borrows from this family, digs around at PIE (Arlington's early intervention), where she works, and voila!

Secondly, I picked up this Physiogymnic ball below at the recommendation of our PT on craigslist! It is used to help work on trunk rotation and balance. They typically retail for $40 and I got ours for a steal at $20. He seems to like it! And the land exercise has helped him progress with the Aqua Therapy exercises as well. Or maybe it's vice versa?!
He got casted for his new hand splints as well. Do you know those babies cost $100? I am so thankful that early intervention is going to pay for those because my insurance doesn't cover anything. And if they do, they make you work very hard for it. Whew, that's a post for another day though! She fixed these ones up with plastic scraps and velcro straps and we're using them to treat/stretch out his hands from their fisted position. We're supposed to use them every day for an hour at a time, which shouldn't be a problem since it takes an hour to feed him each time.

Is It Friday Already?

I think LJ is really able to see things so much better. He is just such a different baby!He is making tiny bits of progress eating rice cereal from a spoon. But he still prefers to eat from our fingers. We have lots more work cut out for us but I ran into a very supportive mom at the gtube clinic who gave me lots of helpful information. Her son, 2 years old, was there to get his gtube taken out- he'd learned to eat orally in March and hasn't used it since! I'm going to call one of the feeding specialists that she said worked miracles for them. Of course, she's so good she doesn't take insurance so we'll see whether she'll even have time to take our case. Encouraging news though. Let's take a look at our week....

Number of visits from the Physical Therapist- 1
Number of times Lew smiled- 46
Number of times he had Aquatic Therapy- 1
Number of visits to the Gtube Clinic- 1
Number of visits from the Occupational Therapist- 2
Number of ounces gained since last week's visit- 9
Number of times Noodles reached for my hands to pull himself up- 8
Number of times he tasted avocado- 5
Number of times he wore his new hand splints- 4
Number of visits from the Speech Therapist- 1

When does the fun ever stop?

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.