Sister Jessica

Growing up with a challenged sister I know first-hand what an inhospitable world this can be. On the flip side, I know all of the joy Jessie brings my family as well. She is a very healthy person otherwise and has the most wonderful sense of humor she just shines. When people have had misunderstandings and think she can’t communicate she used to look at me and just laugh mischievously. (she even gets my dad’s jokes) I really admire her courage and strength with all the adversity she has faced in her life. I am in awe with her determination to do the things and go the places she has experienced. She has been to Australia , New Zealand and London ( I think I'll go to Australia). She's going to Nassau this Spring and before losing any time I'm sure she'll be planning a trip to Alaska. Her disability is just part of who she is.

I can remember in our childhood going out to restaurants for a family dinner, servers would ask us whether he could drink and what she wanted instead of directing the question to her. First, I would get so mad and correct them. She always ordered a coke with a flexible straw. Also, many restaurants have steps or restrooms on a lower level...not many restaurants have elevators. We always had to call ahead to make sure there was some level of accessibility. This created an atmosphere that caused us to always think and plan ahead. I think I can blame my over-compulsive planning problem on this aspect of my childhood. I had a daytimer when I was like 5 !?#

Occasionally I freak out and have to reorganize my closets, the kitchen, LJ's medical records. (see what I'm talking about with the 3-ring binders with tabs corresponding to each of his specialists? and below is LJ's flow sheet)

I've even created a handy medical "business" card about Lewis to hand to the ER staff or other new service providers.

Jessie is so well-adjusted and I think it is because my parents did the best job to always include her and treat her on an equal basis as the rest of us. Jessie was mainstreamed in the public schools, she went to the prom, she had frequent trips to NYC to shop at Bloomies and see broadway plays. Despite all of Jessie’s challenges, I used to get jealous of her and all the attention I perceived her getting. (trip to NYC for me please??) My brothers and I sometimes even fought with her-she can be stubborn and moody just like the best of us. We also had competitions. For example we had wheelchair races down the driveway. Once Jessie got so mad at my parents for nagging her about something she rolled to her room and slammed the door shut. Other times she tried to run them over with her motorized wheelchair...but they were too fast! My parents have advocated for her beyond belief. So much so that she lives independently in a townhome that she shares with her aids. And thanks to our mom’s incredible phone/letter campaign she has weaved her way through the bureaucratic mess and gotten Jessie many services !! Jes is a mad hook-rugger. And by mad I mean off the hook, no pun intended. She thoroughly enjoys her manicures, often venturing for the naviest blue hues or royal purple shade. She is like all of us. In college, like some of us who didn't stay away from alcohol, she would sometimes get tipsy and she had some dui problems- no more wuwu’s, watch out walls! All these are reminders of times we've laughed so hard tears streamed from our faces.

This is what it is like to have a glimpse at disability. I love her. She is a person. A daughter. A niece. An Aunt. A friend. A teacher. My sister. Thank you for making me a more patient, loving, compassionate human being. Without you- what I'm going through- would be so much harder. I have learned how to live.

Oh No He Didn't

It gives me strength to know that even though Noodles is teething, he has started exploring his mouth with his hands. If anything, this video will show him as he embarks on his daily feeding therapy. He is making more and more sounds (and by sounds I mean cooing not crying). Of course he had his hands more in his mouth when he started, but we had to run to find the camera.

The process of feeding LJ his formula through his g-tube from setting up, measuring, pouring, flushing with water to the sacrifice of making our own baby food (the stuff in those jars smells funny according to Noodles)....Everybody is working hard to improve things- most importantly Lewis. But the practical reality is feeding and oral aversions are constantly in a state of adjustment. We've changed LJ's highchair so he has to do more work to strengthen his gut. And weight gain and development aside, he is showing us that we will just have to follow his lead. ( I will post another vimeo of his OT, but that is for another day)

Lewis Feeding Therapy_9.2009 from Jenn S on Vimeo.

New Beginnings!

Great news....not only has the second year of preschool started for Nate, but we have a new therapist working with us. I've been thinking about my meeting with C, a feeding specialist from Children's Hospital, and I've let everything sink in.

Didi and I took LJ there yesterday and were quickly impressed with a lot of new information C shared with us. First she examined LJ's body. She noticed a curvature of his spine that correlates with the location of his first surgery incision on the opposite side of his abdomen. C said this wasn't normal and indicated that Lew is really weak in this part of his torso causing his posture to be slumped over. When he is slumped over it makes his stomach squash down with his intestines making for an unpleasant digestive experience.

This hasn't been helping his retching syndrome any. Without the ability to sit upright and push his shoulders back he will also never be able to bring his shoulders back, thereby making it easier for him to bring both hands together, hold things, and bring them to his face. C also said that there is no way he will have the motivation to eat orally unless we can build up his strength so much so that he can hold the thoracic spine up all on his own. We've been instructed not to really use the Bumbo chair as it encourages the wrong back muscles for LJ. She gave us some side stretches to work on with him and some abdominal strengthening ideas including a sample of dyson, an adhesive material that helps keep LJ from scooching out his floor sitter and feeding chairs. Once he is physically in a better place, he will feel all that much better and be ready to work on oral feeding skills.

After feeling frustrated that we have been promoting these oral aversions and wasting the last seven months of therapy I realized a friend had spoken very true words to me. You can't look backwards. You can only go forward. Because we've all got nothing to lose and everything to gain. And you never really know what lies ahead. Today or tomorrow.

Inchstones

An inchstone is one of those tiny steps that your "special needs" child takes on the way to a major milestone. I really can't compare Noodles to other children's milestone markers because he is still behind by about three - four months. But the anticipation is so painstakingly slow that I like to think of his progress as inchstones in lieu of milestones.

Lewis had two inchstones yesterday and today.

We had pretty much stopped oral feeding sessions altogether last week, because I was so down and blah about the lack of progress. But I got back up on the horse this week and Monday proved fruitless, or rather sweet potato-less. LJ just turned his head away or would immediately start gagging once it got near his mouth. However yesterday, Nate was especially interested in helping his baby brother try out some oral feeding skills. So we first tried playing with these fancy organic banana puffs (they're supposed to melt in your mouth) to get Noodles interested. Then Nate would stick one onto his lips, making sure it didn't go in his mouth since he can't handle swallowing. It really stuck, and the fact that Lewis cooperated was huge! Then we proceeded to try some smooshed avocado and we had mild success. He looked at it...stuck his finger in it...and then accidentally put his finger in his mouth!! All that and he didn't gag. We started him on Peptamen Jr Rx formula as well. So hopefully the new stuff will be gentler on his stomach (it's a peptide-based elemental formula specifically for kids with g-tubes and allergies).

Today, Josh and I took Noodles to meet Dr. Neurologist to get the results from the latest MRI. Weirdly, I didn't feel angry or upset at all- the last neurologist was pretty negative. I was mostly just really curious to hear what the doc had to say. He tipped the scales at almost 20 pounds! And his head circumference is increasing on trend for him..albeit small (43.5 cm is evidently the 2% on the charts). Most importantly there aren't any new abnormal signals. His white matter is growing normally! The injury to his brain is still in the basil ganglia, but they have pin-pointed it specifically to deep in the thalamus (that's where the spinal tracks come together). In the end, he didn't want to speculate on what the long-term prognosis would be (he'd prefer to evaluate him around 18 months, if not 24 months). The one conclusion he did find is that Lewis will probably always have motor control/tone issues. Whether this will impact his ability to walk, talk or use his hands remains to be seen. Only time will tell. I guess that's the most overwhelming feeling I had was that things just are the way they are and they will be what they will be. Noodles has a lot more development between 12 - 24 months so we need to maximize his therapies and be as aggressive as possible. The MRI is not gonna change our current course of action. But we are so thankful that it doesn't look like LJ suffered any cognitive deficits.

The Weekend, briefly

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.