Many Thanks

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.

Talking Turkey!

Here we go again! Noodles is on a different antibiotic. The sensitivities came back and there was a third bacteria resistant to augmentim. We'll be spending the holiday with Josh's side of the family. Good times. One year ago Lew spent this holiday in the NICU; I think it's fair to say he has NOT had any withdrawal symptoms. We just hope we stay far away from any hospitals this holiday! May your turkey be moist, your mashed potatoes lumpy, and your belts loose.

We feel grateful

Update

Just a quick update as many of you are wondering how the little man is doing. He is in such pain and has cried so much that his little voice is hoarse. It is so unnerving that I have to hold my baby in my arms, forcing the feed into his belly and I'm completely helpless to make him more comfortable.

The culture came back positive for a strep & E. coli infection. It makes sense, since his button leaks so much and the gastric juices have pretty much kept the area of skin around the button moist since the first case of cellulitis reared it's ugly head. As if we haven't waited long enough, we are still waiting for the sensitivities results before we can treat it effectively. In the interim, we have started a dose of Augmentin (a form of amoxicillin) and he's back on Carafate (coats the stomach lining to heal gastritis). If the lab tells us the sensitivity results and this strain of E. Coli and/or strep are resistant to Augmentin we will have to get him on a different antibiotic stat. He's still taking his usual prevacid (for reflux) and of course the round of Tamiflu that was started this weekend. We've been treating his fever with alternating Tylenol and Motrin. It's just a pharmacy here in Arlington!

There is a possibility if the cellulitis cannot be controlled that he will need to be admitted to the hospital for I.V. antibiotic treatment. We're hoping to avoid any hospital visits this Turkey Day. However, if it becomes the worst case scenario at least it can probably be a one day thing. We are also taking him to the surgeon next week to see whether the actual hole for the button needs to be surgically revised....since it's been causing so many problems. Think healing thoughts for Noodles.

Bumpy Road

we've been busy with an over-scheduled week. we keep pushing on but it gets so overwhelming sometimes when life on a daily basis becomes so exhausting. everyday this week, noodles had three doctors/therapy appointments. yikes! meanwhile, nate's teachers had some conferences so there wasn't any school for two of those days. luckily bop took nate to the playground one of the afternoons so he could run all his silliness out. and the other day some friends of his had a playdate and then he want over to "camp didi/bops". and i've been campaigning to get the state program to order and pay for some therapy equipment for lj (before they all leave on vacay for the holiday next week). it was prescribed by Children's hospital and the other therapists who work with us also think it would be highly beneficial to have this equipment assist us at home. but it's really expensive, about $1,000, so hopefully we can get it covered by the assistive technology fund. a minor victory i did manage to forge ahead with the bread chronicles and make this yummy brioche recipe.

i got conflicting news about noodle's GI issues this week from the folks at CNMC in DC. they don't think he is a candidate for the feeding program at Kennedy Krieger up in John's Hopkins. who knows if this is just chalked up to being competitive hospitals or if there's merit in their opinion. but CNMC thinks Kennedy Krieger puts all the emphasis on desensitizing children to oral feeding so that they can increase the volume of feeding nutrition. this is not helpful in the long-term because they think kids like noodles will still have feeding disorders due to the fact that it doesn't teach them to enjoy food. we'll still go to the evaluation at kennedy krieger for the evaluation in a few weeks to hear what they have to say.

yesterday brought about more health worries for lewis. we thought lj's cellulitis was gone but since friday night it has gotten a lot worse and he's done with the keflex. he has had an on-again-off-again fever (usually around 99.5) but yesterday he spiked a 102.5 fever and he had diarrhea. the skin around his g-tube button was bleeding enough to saturate the dressing, go through his shirt, and then stain my shirt. all of this has made him extremely fussy. he also hasn't slept well in a few nights and we can't seem to make him comfortable. he and i headed into the urgent care center around 3pm yesterday so that we could be certain there was no ear infection or strep infection. the on-call doctor took a skin culture so we won't know for sure whether the skin infection was a strain resistant to the Keflex or what not. and due to the high fever and the fact that he didn't have his H1N1 shot yet, he was prescribed Tamiflu. It's really quite foreboding.

we'll see what tomorrow brings. hopefully it's not anything to be worried about and a different antibiotic won't be resistant this time & lj's fever/stomach thing will be just a fluke. but this week promises to be another bumpy ride. we have an appointment with the eye surgeon to see how his eyes are doing & a follow up appointment with the neurologist. we are going to the GI clinic to check on the current cellulitis situation and discuss his nutrition with the dietitian. we're waiting to hear the results from the skin culture any day now. and if he is up to it, he will go to CNMC for his weekly feeding therapy. thinking of the yummy food at our Thanksgiving feast & relaxing with family will definitely bolster my ability to focus and get through these trying times.

Scenes from the Un-Scheduled Weekend

Cellulitis update: Lewis finally seems to be feeling better. After running out to pick up a steroid cream Thursday night (which didn't seem to help) I insisted the doctor needed to take another look at him on Friday morning. I'm so glad we did because he gave us two good suggestions which seem to be helping it heal. The first, to add 2 ml of water to the balloon holding the gtube button in place. The second, to absorb the leaking bile with an I.V. drain sponge loaded (looks like this:
with the steroid cream and calmoseptine cream and secured around his gtube either with tape or this white, webbing stuff that fits around his torso. Nate asked what the webbing was- we told him his brother was spider man:)
General announcement: After getting pretty banged up a the bowling alley this week, Nate had developed close ties with Motrin and Tylenol + the portable DVD player! Long story short, Nate was crying over his spilled lemonade when he threw a monster tantrum leaving the building. He lost his footing and fell down the steps- bashing the back of his head on the pavement. There was an instant goose egg and a little blood and a whole lot of crying. Luckily our doctor's office is only two blocks from the Bowl America and off we went to make sure he didn't have a concussion. At the end of the day, we were all emotionally and physically exhausted. He's now healthy and looking forward to going back to school Monday morning.

Fussy McFusserson

So Noodles has been quite the fussy boy as of late. I changed his button all by myself last Friday (go me!) but was worried that his skin around the button was looking a bit irritated by late that night. All weekend long I applied bacitracin to try and get it to heal. He was also running a low-grade fever of 99.3-99.7.....so i wasn't shocked when the pediatrician wouldn't give him his RSV shot yesterday (since LJ can get pneumonia easily we've gotten approved to have the RSV shot each month during the winter season so this was a routine schedule appointment). In fact, she confirmed that he had cellulitis. If we gave him the shot, his body was trying to fight off something and the respiratory vaccine would most likely be ineffective. So off we went to the GI doctor to confirm our fear.

For me the highlight of the description linked above is "left untreated, the spreading bacterial infection may rapidly turn into a life-threatening condition."

I guess now's not the time to get all hippie health food with the homemade carafate paste and hot compresses. My initial response is always just to let things run their course, but when running its course = death, I have only the mommy worry to thank for the motivation. Thank goodness for heavy-duty antibiotics like Keflex! At least we got the go-ahead to give Noodles probiotics in his formula everyday. Hopefully that will help balance out his digestive system with 10 days of antibiotics. And we've deferred the RSV shot until next week.

On A Roll

Roll 'em, roll 'em from Jenn S on Vimeo.

Trick or Treat

Better late than never, right? Our fun neighbors had a block party. Besides the rain, we all had fun (especially me raiding Nate's loot: lemon heads are too spicey for nate the grape!). Oh yeah, and the travelers whilst trick or treating:) Sugar high? Yes. Glad it's over? Yes. Sunday was mellow and the kids cooperated.

Lew was an elephant and Nate was a wizard a la Harry Potter.I like peanuts!

I like lollipops!

Checking In

Here's a video of Lewis standing tall-WITH SUPPORT. He really prefers to be upright. His legs are quite strong; now if we could transfer some of that love to his abdomen maybe we could get him to sit independently:) That giant blue band aid on his tummy is Kinesio tape.

Hot Stepper from Jenn S on Vimeo.

Here's another shot of the cutie patootie completely exhausted after a session with the feeding specialist at Children's Hospital. She made a comment to me that has really stuck in my brain. And that is that Lewis is a smart child. "The hardest part will be to strike that fine balance of focusing on his physical limitations and keeping up with him intellectually." As if I don't have enough to worry about! She doesn't think his hand splints (Beniks) are doing anything (actually only impeding his ability to hold things)...not even wearing them at night... so she tried to Kinesio tape his right hand for comparison next week. It is less bulky- I'll give her that.

I can't bear to see him get frustrated because he is unable to do things because of his body. It was kind of a tough blow even though I fully understand and believe that our prayers were answered. Yet these prayers are so different from last year. I realize that we didn't expect (though we did pray) for a complete miracle cure a year ago, but we hoped and wished for LJ to have a good cognitive outlook. We told ourselves we would figure things out with a physical disability. We've done our happy dance since things look to be good and now we want more. You are never really satisfied I guess.

On a lighter note, I don't have much more to report. We did have a positive visit with the GI doc who said Noodles needs a larger button. It might help him feel more comfortable in a seated position too. I will be putting in the new tube all by myself once it arrives...go me! And another minor victory!! I got the doc to write us a Rx for silver nitrate sticks. These are what the nurse uses to clean the granulation tissue around the feeding tube. We had to go into the office on a weekly basis to have this done- so now we will save ourselves a lot of time and hopefully keep the germs at bay!!

Baby Steps

This morning during speech therapy we did a sweet potato "tasting". The sweet potatoes are the last from our organic farm share (unfortunately they do not do a winter crop) and I melted some butter with them to give 'em added umph! He recovered very quickly from his gagging impulses. Two very sweet pictures are below. Lately, he's also been a stinkpot- knocking the bowl of food onto the floor which makes a really big BANG that seems to delight him. It's as if he's saying take that, food!
Have a happy weekend!

Just a Little Bit More

So far this has been an exciting week and a half. Noodles had some shots stuck in each leg last week & three vials of blood drawn and quite literally never stopped crying the rest of the appointment from it. This was the first time I got a glimpse of what it would be like to have a baby in my life that cries non-stop. I needed to be nursed back to life because my nerves were frazzled and I was just emotionally drained by the time I buckled Lew into his carseat. Two technicians tried to get the blood work drawn up, collapsed the vein on his right arm and finally moved to the left arm. We should all be rewarded with bottomless glasses of wine, undisturbed naps and massages at our every desire because baby screams pack the nuclear punch.

Our little guy has also finally decided to allow his teeth to come in ... TEETH ... not tooth! Last night and this morning we endured the rather painful process of 2 teeth as they made their debut. Hello drool soaked everything. We have been awakened in the middle of the night for several consecutive days now. Tonight is a little better for him, but we are not out of the woods just yet!

He's also adding to the daily repertoire of things he can do, more rolling onto his back, tons of bringing hands to mid-line, dropping all his toys from his highchair tray onto the ground, a lot of weight bearing on his forearms, making new sounds and definitely vocalizing his objections. Lew is still really delayed so I am cautiously optimistic. The new feeding specialist at Children's Hospital put Kenesio Tape on his abdomen and back (first she shaved his back fuzz to spare him any pain when it finally gets taken off. He's his father's son, just kidding. Considerate of her, right though?). Basically, since his trunk is so weak and LJ tends to also hyper-extend his back when he is uncomfortable the therapeutic tape acts as a cue to his musculature. It's incredibly fascinating stuff and he looks like a big blue "X" marks the spot on his tummy. Guess it coulda been worse...what if the tape only came in the color pink? It's water-resistant tape so we went to Aqua Therapy the next day and drew quite the looks. wink. wink.

Oh yeah, and the GI folks have changed his Rx formula yet again....I am pretty sure this is change #5. Now we are giving Elecare a whirl. It is for children with "serious feeding issues" according to the "label". But we HAVE noticed a decrease in retching so we'll take what we can get. We've increased his tastings to include four foods: homemade pureed sweet potatoes with butter, avocado, banana and yogurt. I've also been able to thin those out significantly so we can squirt them through his feeding tube and his digestive system will get all the added benefits. Feeding is still a battle that we haven't won yet, so we've applied to the program at Kennedy Krieger. We got an appointment for an evaluation in December. That's all I can think of for now.

the best part.

I think he really enjoyed that cupcake.
In fact, some icing may have made it into LJ's mouth before it made it on to his cute outfit.

LJ even got to visit with NICU nurses Bridget and Kira.
Bridget escaped the camera too quickly but he swears he didn't cheat on you! And here's Nate manning the "ball pit".

A Year of Lew

What a difference a year makes. When you were born my heart ached. We had so many questions and concerns. I've cried for all the suffering my beautiful baby boy would endure. I've cried for the years of frustration and loneliness he might feel. I've cried for all the hungers he would feel that could never be satisfied. I've cried for him, I've cried for me and I've cried for all of us.

A friend of mine told me that she couldn't make her kids healthy and she couldn't make them smart, but she could make sure they were happy. I just want him to be a happy boy. I can't make Lew healthy and I can't make him smart, but I do make sure he's happy. And he does the same for me. I can't dwell on how painful it is to not see him sit, crawl, eat, talk and pull to stand at a comparable rate to other healthy babies. But I'd take every ounce of sickness and discomfort for him just to be happy. It has been hard to get to this point. But after all we have been through with Lewis, I still cannot imagine my life without him. As incongruous as it was that gorgeous sunny-blue-sky day he was born one year ago, I had HOPE. I had a beautiful boy & I was his mom. And I was going to do everything in my powers to make the world right for him. So wish fairy, if you're out there, could you help us out?

Your smile makes my heart melt. Your daily determination makes my heart swell. Watch out, world. The world has a lot to learn. My heart is full. Happy Birthday little man. I love you.

Loving....

this gorgeous smile and the fantastic rocking horse that Bop made the boys



















hanging out with our fabulous PT at Aqua Therapy...i'd go on to more lovely photos but Nanny is visiting! i'm off to do a little bit of nothing for awhile.

what's a boy to do?

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