Hello there....it's me....

Not sure anybody is here anymore, reading this. I've written several posts in my head...but that's where they stayed.  So I figured I had better jot some updates down.  Been trying my best to slog through mommy role, yoga-teacher role and daughter/wife/sister/friend/chef/housekeeper/playground-monitor role.  Let's see.  Thanksgiving happened in Durham at Mema and Papa's house.

Dougan, Marcy, John and Josh cooking in the kitchen

Then it was my birthday.  Had lovely celebrations here

Such a beautiful soul! Love me some Lyon Hall too:)

and here

Full tummies and Full Hearts

Bigger Excuse #1 Neurology and ENT appointments...it had been so long since our last appointments that I almost forgot how tired this gets me.  LJ still doesn't sleep properly. At his annual check up this was the topic du jour.  His pediatrician put in a referral for us to go see his Neurologist again.  We discussed the muscle relaxer he takes and perhaps he's outgrown the dosing.  So the Baclofen has been increased and we've procured a doctors note so he will go to the nurses office at school at get a dose mid-day.  He now gets 4 ml by mouth three times a day.

Ear tubes plopped out.  Well, one did at least.  The other was stuck in the ear but wasn't helping matters.  Doc couldn't see behind it so I had to pin him down while the doctor took an instrument and scooped the lil tube out of his ear.  He had another bulging ear infection behind where the tube was stuck.  LJ will have his last dose of Amoxicillin tonight.

Last but not least, Dr. E prescribed Artane for Lewbug.  It also goes by the generic name Trihexyphenidyl Hydrochloride.  He's on the very low dose of 3 ml by mouth two times a day.  It's in the family of drugs used mostly to treat symptoms of Parkinson's disease.  We began 3 weeks ago increasing his dose gradually.  This Saturday marks the spot and we'll observe how he does on the drug.  Hopefully it makes it a little easier for him to move his body.  His fluctuating tone makes it challenging for him to grab anything or keep his balance.  I've noticed he has less secretions which is a known side effect of this medicine so that's a plus.

Excuse #2 We've been taking turns sleeping on the floor in LJ's room.  It's the only way we can keep him safe at night.  The novelty of the video monitor has worn off.  Despite the bathroom light left on all night, the noise machine lulling surf sounds, and a cocktail of sleep meds, Lewis has reverted back to banging his head until we intervene.  A mattress has been temporarily moved into his bedroom.  The air mattress sits in the corner.  I'm beginning to think we should hire a night nurse.  Sigh.  Until then, we eagerly await getting one decent night's rest.

Excuse #3 Physiatrist Saga. The back story: our old physiatrist works at Children's Hospital.  They have an annex in Fairfax which made my life a tad easier for scheduling appointments.  The school physical therapist and private physical therapist think his calf muscle is too tight.  Because he doesn't ever get his heel down on the ground, he can't make progress learning to walk in his gait trainer because he overcompensates on his other leg.  Cut to the chase, our insurance company denied our referral to go back to see our doctor.  The HMO now has a pediatric physiatrist in network that is only a short 45 minute drive (without any DC traffic) in Prince George's County, MD.  They wanted us to go to them.  So in the process to appeal that, I worked another angle.  Dr E (our in-network Neurologist) wrote in her case notes that she believed Lewis would benefit from botox injections under anesthesia.  She recommended he be referred to our 1st choice phsyiatrist at Children's.  Friggin minor victories but low and behold we were able to get the decision reversed!  So we will traipse to Children's for our botox consult in February.

These feelings won't go away.  There's a quote by Karen Maezen Miller: "As the kids step forward, they give birth to themselves; as the parents step backward, they give birth to a young adult, as painful as it is."  My baby will always be my baby. I get sad when I think about him one day going off to college and the house being so much smaller, quieter, weirder. Anyhoo.  He turned 9.

Call me bat-wing mad, but we hosted 9 boys for a slumber party to celebrate the occasion.  This in turn made for a long, crazy, cranky weekend. For your amusement, here's a sample conversation whilst playing the new PS3: "They're playing against the mets again." Other kid "They win." Over top of that kid "Woot!" Another kid "Yuck. Who farted?" Coupla kids "Uuuck." B "I ran out of Twizzlers." First kid "That's not how you play.  They don't even know the rules."  Someone else, "I'll be right back." Second kid, "Where you going?" Someone else, "I'm just gonna go around and pet Annie."  Since I don't sleep these days anyway, it was good prep for the sleepover.  The quiet room had 3 sleepers. By 11pm, not a creature was stirring, not even a mouse. But the rambunctious room could not be persuaded to sleep.  By 12 am they were finally quiet; only to wake me up at 3am. And then for good up at 6:30am playing the PS3 again. I think its a Christmas miracle that I was able to get all their teeth brushed the night before. Meh, everything else was uphill after that....

When did they get so tall? Crowded around the game

Oh, and I am planning a me-cation.  Booked my flights to India.  Taking the trip of my lifetime with my mom, sister and niece.  I'm so excited!! And I just can't hide it!! I know, I know, I know, I want to!!!! On tap are trips to an Indian family to learn their cooking style and enjoy a meal with them, the Taj Mahal, multiple bazaars, rickshaws galore. This Rajasthan Elephant Ride is also on the itinerary.



Oh yeah, though it may not seem like it, I truly am practicing what I teach.  I'm trying to learn to say "No, it's too much."  That's my new mantra.  If I repeat, repeat, repeat perhaps it will actually come out of my mouth when I'm just wanting everyone to be happy but in the longterm it really doesn't serve me well.  It is what it is. I'll keep you posted.

Hello.  How are you?

Life Is Good...but SO Full

LJ's New Shades

We're here.  It has been a busy April.  Nothin' major to report.  Just the usual with the two kids, therapy, doctor appointments, after school activities, IEP meetings, traveling etc...

Lewie is gettin' good at driving his power chair.  No more banging his head.  He sleeps thru the night every couple nights or so.  The trick was a combo of 3 mg extended release melatonin & a regular 3 mg tab of melatonin at bedtime.  But...it could also be due to the addition of a new medicine LJ has started taking which has a drowsiness side effect.

We met with a new Pediatric Neurologist at the beginning of the month.  And she gave us lots of nuggets of information.  She recommended we try Baclofen for LJ's fluctuating tone and muscle discomfort.  NIH says Baclofen can be used to act on spinal cord nerves and reduce the severity of muscle spasms.  Dr E also referred to his particular type of CP as "Choreoathetotic".  We'd heard he was dystonic but this was a new term to us.  I googled it and the definition I pulled up was "a form of cerebral palsy characterized by choreiform (jerky, ticlike twitching) and athetoid (slow, writhing) movements."  Sounds sorta accurate but its just a label and I've dropped those. 

The Phsyiatrist we see for his physical medicine/rehab wants to try another Botox procedure (for LJ's right wrist flexor, right pec major, and right calve) but the neuro thought we might have longer term progress with the oral medication. So rather than put him under anesthesia again, we will see if the Baclofen helps. He is on a low dose and we may consider increasing the dose with time.  In the meantime another side effect is seizure, so we are closely monitoring him.

The dentist reported that LJ has no cavities! The Developmental Pediatrician was also a good visit.  We discussed LJ's sleep issues. He prescribed a sleeping medication if things get particularly bad and the melatonin doesn't help enough.  But we really have tried not to use it.  It's called Clonidine and it's typically used to treat high blood pressure but drowsiness is a side effect. The Developmental Ped also said another medication to consider down the road might be to treat anxiety.  He could see that LJ has lots of worry and given his overall picture it might help reduce his anxiety.  Rather than Ativan though he would like to see him on Intuniv for antianxiety/antidepression.  When he's a little older we may explore a play-based psychiatrist for LJ have therapy and determine what is the right route. 

Ophthalmologist says Lewis' eyes look healthy, nothing wrong with the integrity of the actual eyeballs.  However, I had sent her a video because his right eye was overactive and floating up a lot. She had us come in for an exam.  She says it's not uncommon with kiddos who have had strabismus early on.  She calls it "Dissociated Vertical Deviation" or DVD.  Here is an interesting article outlining how DVD has eluded explanation for over a century!  The doc advised that this is really more of an aesthetic thing and that while surgery would indeed correct it, the problem never goes away and would need to be re-operated on in the future.  When given the old "What would you do if this was your child?" she responded that she wouldn't operate until it was cosmetically necessary or LJ had formed an opinion on it.

In other news, the lil is farsighted!  He needs glasses.  He has trouble seeing things close up- which starts to make sense regarding his iPad and inaccuracy clicking buttons in PQ2GO. He chose his own glasses and very much enjoyed shopping for them.  It was between round blue ones or squoval (squarish-oval) green ones.  At one point he got so excited he knocked my bottled water all over the display.  Fun times.  At least it was only water.

I had a getaway to NYC for a night to celebrate Nanny's birthday.  Josh manned the fort.  I had the most amazing time eating good eats, laughing lots, celebrating my mom, sleeping in late, a nice little massage, and a play off Broadway.  The kids were all adorable when I got home.  The whole fam damily went home to Florida for my nephew's bar mitzvah this past weekend.  He did so amazing.  Didi and Bop came along for the fun.  We had lots of bribing going on to get big brother to wear his jacket and tie for the festivities.  First it was a choice between wearing his jacket or his tie.  But then just to get him to wear one, we negotiated for Nate not to have to wear his dress socks.  In the end, the boys looked like little mini men and we had such a wonderful time with old friends and family.  But trips are always lots of work.

On one final note, we have some bittersweet news.  We have decided to sell our house and look for one that is more handicap accessible or can be made more accessible.  We've chosen the end of the school year to put our house on the market so that we can use the summer to find a place that works for us, hopefully very close to where we are now.  But its been crazy, crazy, crazy busy trying to get the house ready to go on the market.  I hope you all are not as pooped as I feel after reading all of this.  That's my story and I'm sticking to it.

Cranio what what?

Pizza Chef Lewie, who prefers a little hat with twirlie thing on his dome instead of a chef's hat; 
LJ is also now able to independently sit without falling over for extended periods. See above photo;)

Cranio what?  Are you scratching your head?  We've started Lewis on craniosacral therapy (CST) this summer.  As if we didn't have enough therapies we're involved with, I thought it might help relieve some of LJ's muscle tightness so we've scheduled Saturday appointments for the summer.  First off, I really like the therapist's quote on her business card so much I though I had to share it.

Regardless of age, innate wisdom exists.

I don't think this needs more introduction.  It definitely gets me thinking and hope it does the same for you.

As for the deets on craniosacral therapy:  Craniosacral therapy is a holistic integrative approach to an individual's symptoms getting better, be it from a chronic illness/disease, pain or something as minor as ear infections and colic.  CST is used to effectively manage sensory processing disorders and communication difficulties through the use of whispering fingertips.  The therapist feels for abnormalities in the craniosacral pulse (completely different from a heartbeat or breathing rate) that belongs to the fluid and membranes surrounding the brain and spinal cord.  CST also works on the hydraulic-like fluid of the nervous system.  The premise is that it helps realign things and calm the nervous system.  Our therapist, Ms. N, uses a feather-light touch and then cradles LJ's head, face or chest as I play with him (aka distract him) or he lays back in her lap.

Last week Ms. N worked on the lymphatic system to try to ease some of LJ's chronic chest congestion...one side effect he had was a runny nose for the next few hours afterward.  One can only assume this was due to everything draining more effectively.  His hearing was also quite sensitive.  He insisted in signing to me that I needed to use the otoscope to look in his ears.  He emphatically pointed and tugged on his ears...but I didn't see any redness, nor were his tubes missing.  Then Nate was curious so everyone had a turn looking in each others' ears. Not sure if there's some other explanation but I'm sticking with sensitivities since the ears are no longer bothering him.  NIH describes the lymph system as a major component of the body's immune system.  Nonetheless, we're quite hopeful for the effects CST will have for LJ.

Some other benefits of CST are improved blood flow, promotes relaxation and reduces muscle tension and pain.  I'm not surprised the American Academy of Pediatrics has no official policy on craniosacral therapy but they confirm it is non-invasive.  Since we've been willing to try alternative therapies such as hyperbaric oxygen treatments (which btw we were happy with), a holistic wellness route seems like a no-brainer...excuse the pun if you will!  Still, if it can't hurt what's to lose except the weekly out-of-pocket session fee (it's so not covered by our insurance policy!)?

He's been so relaxed that he asks for a nap three quarters through each session.  Then he comes home and takes an even longer nap. The therapy also completely relaxes his digestive system too!  Sorry for tmi.  Everything is more relaxed.  Perhaps he feels blissed out?  Fun stuff either way.  I've been researching this therapy since November and can't believe it took me this long to get therapy underway.  I think it is fair to say we are following every lead we can.

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.

Full Plate

Actually, I'm too full still to talk about the holiday! Our plates are full with doctor's appointments this week and next.

We had our appointment with the Pediatrician Monday and the Neurologist yesterday morning & I just wanted to bring everyone up to speed.

Pediatrician:
He was pleased with LJ's progress. It's slow, but it's progress for him. He was happy with his weight gain. Folks, he's 15lb 10 oz. His head is 41 1/2 cm. (It's on the small side, but Lewis must take after his mom. I have a pea-sized head!). And he is 25% on the charts. Nate chaperoned us and he asked the pediatrician during the check-up whether he had any "vaxines". Nate also gave his nurse a pretty hard time when it came to giving Lewis his 6-month shots. Here's the lowdown:

Nurse administers first shot. Lewis screams and cries.
Nurse administers second shot on LJ's other thigh. He screams and cries and sheds big crocodile tears.
Nate hollers at nurse "That's enough. No more vaxines. Don't hurt my baby brother! That's enough!"
Nurse explains to Nate that these shots are important for Lewis. They will make sure he stays healthy and doesn't get any bad diseases.

When we got home Nate and I had another conversation regarding vaccines. It went like this:
"Mommy, I don't like vaxines. Medicine is gentler. Medicine is better. But I don't like the grape kind anymore. I like the banana kind." Now I know which medicine is the grape one...but I'm clueless where he got the banana idea. Any opinions are welcome.

The day went on and LJ did fine after the shots.

Neurologist:
He felt Lewis is at about the 3-4 month old marker developmentally. He tested his foot reflexes on a hard surface and found that the placing/stepping are intact but a little slow. Again, totally consistent with his developmental delays. He also mentioned that Lewis seems to exhibit slight hypotonicity.

I discussed the course of treatment regarding LJ's eyes with him too. He defers to the Pediatric Ophthalmologist but felt that the earlier the intervention (ie surgically correcting the muscles) the better off he would be...we don't want him to end up with Amblyopia (a disorder of the eye that results in poor or no vision). He mentioned that some folks treat strabismus with botox??? and or botox in combination with the surgery. Yes folks, long before botox was used to treat wrinkles, docs use it to relax the overactive muscles in order to bring the eye back into proper alignment. Can I get a little of that?? not in my eye, but around my eyes would be nice.

Last and not least, he would like to have another MRI done between 8-9 months old to study the gray and white matter. I Would LOVE to coordinate the anesthesia from the eye surgery with that of MRI. It makes me nervous thinking that all this progress he has made will have been for nothing being laid up with more surgery. And it makes me doubly nervous thinking about putting him under with general anesthesia twice in one month!

Anyways, next week we meet with the stomach surgeon. We're pretty sure it's a foregone conclusion that there is too much scar tissue and that he won't want to operate again. That's the GI doc's verdict at least. We'll also be taking a course on infant massage to see if we can help Noodles relax a little and feel more comfortable after his feedings.

Noodles Unleashed!

We've been busy since the weekend and haven't had much time to post. Jenn and Aunt Kara have been taking Lewis all over town to various doctors and therapy appointments. The schedule will get a little bit more sane in the coming weeks, once we get through all of the initial specialist appointments. Thank goodness Kara is here to take care of us this week - three to two is a much more sane ratio of adults to children :)

Last Friday, the heart/lung Doc liked what he saw so much that he decided Lewis did not need to be hooked up to the monitor anymore. In the course of 30 seconds, Lewis lost 5 pounds (it was a heavy monitor - the size of a small laptop) and a bunch of wires. He's down to just the NG tube attached. Here are a few health updates:

• Lewis' left eye has become a concern. Over the last few days, it has stopped tracking as well as his right eye and seems to be crossed. The neurologist that he saw today has suggested we get him checked out by a pediatric eye doctor
• The rest of the Neuro visit went well. The doc definitely felt that Lewis has some deficiencies, particularly on his left side, but he was reasonably positive in his overall assessment and he thinks that we'll be able to wean Lewis from the phenobarbitol (seizure meds) soon too
• Lewis had a followup visit with the surgeon who operated on his tummy today too. The surgeon reassured Jenn that the retching is more or less like burping and not that unusual in this sort of situation. It is apparently more scary than severe. He suggested that we stop the feedings in the middle and "vent" Lewis' NG tube - effectively burping him - for a few minutes in the middle of each feeding
• Speech therapy started yesterday. We're working on getting Lewis to take a pacifier while he is being fed through his NG tube

Finally, we want to thank everyone, again, for being so supportive. Your words, deeds, thoughts, prayers and encouragement have been key. Each day gets us closer to being back to normal. We appreciate your help and encouragement more than we'll ever be able to say. Thanks again.

Bell Lap (?)

"Rooming in" at the hospital was a restful experience. For Lewis. Everything went well. Lewis fell asleep around midnight and slept through until we changed him at 6. Then he promptly fell back asleep for a couple of hours. He's now eating 100 ml over 30 minutes, every three hours. There is an upside to feeding through the NG tube - he doesn't need to wake up for feedings, even though we do.

Lewis had a hearing test when he came back to the NICU this morning. He wasn't very cooperative - he kept squirming around - but when they were able to administer the test properly, he passed just fine.

Jenn and I also met with the Neurologist again today. The short version is that the MRI looks better than last time. There are still lesions on the basal ganglia (the brain's input/output pathways for motor control) but they are less prominent than in the first MRI. The neurologist was much more positive, but still thinks it is very likely that Lewis will have some level of movement disorder. The neurologist and the developmental pediatrician seem to disagree (dramatically) on how/where the movement disorder may manifest itself. More on this when I have more time to post tomorrow.

It is looking more and more likely that Lewis will come home on Monday. We have spent much of today and yesterday learning to use equipment and buying supplies. We're both excited and scared - we can't wait to have him home, but we may not sleep a wink the first couple of days he's here. It'll be bittersweet to leave the NICU too - the team there has taken care of us nearly as much as Lewis for the last couple of months. With luck, Nate will visit Noodles tomorrow and we'll have some pictures...

More Uncertainty - Friday Oct 24

When we look too far past the present, in this sort of situation, the range of unknowns becomes overwhelming. We took this lesson to heart almost two weeks ago - Jenn and I stick to thinking about Lewis' condition today and we don't get past our hopes for tomorrow, and things go okay. Unfortunately, today's 'family meeting' with the NICU neurologist forced us to move outside that manageable window.

The neurologist's prognosis for Lewis is "very guarded". Physically he felt that Lewis has made progress, but still thought that he was 'hyperexcited'. The MRI showed lesions on the part of the brain called the Basal Ganglia. Apparently it is difficult to differentiate the severity of the lesions at this stage. The Doctor explained that this portion of the brain regulates communication to/from the rest of the body. He expects that Lewis' "degree of deficit could range from moderate to quite profound" and that we should expect that he will require "comprehensive services" to include physical and occupational therapy and a bunch of other stuff that I didn't catch. He wasn't really willing to define "moderate" or "quite profound".

Though he shows no signs of seizures right now, they'll keep Lewis on the phenobarbitol until he outgrows the dose, rather than lowering it. That should equate to about 4 to 6 months. The next MRI will take place in 4 to 6 weeks, which may tell us more.

Respiratory - today was the first day that the doctors referred to the infection Lewis has as pneumonia (at least in front of us). This isn't as big a concern as one might think, since Lewis has been on the appropriate antibiotics since last Sunday. It isn't hard to see how he got fluid in his lungs, since he still isn't managing his secretions (swallowing). On the bright side, he is breathing just fine without any support (other than occasional suction to remove the junk he doesn't swallow) and coughing more - which helps protect his airway.

Feeding - up to 24 ml/h of milk today, which is a full diet, so Lewis has been taken off of IV nutrition. We also learned that his NG tube is in his duodenum (below the stomach) which is why they think he's had fewer digestive problems recently. They may challenge him by moving the tube back up to his stomach, but that's a ways away.

Speech therapy - the therapist spent about half an hour showing us different ways to work with Lewis on stimulating his rooting and sucking behaviors. She feels that he's made some progress this week, but I didn't write down all the details, so that's all I can tell you.

The plan over the next week is to intensify all of the physical therapy and treat the pneumonia. If Lewis doesn't make progress on sucking and swallowing, it is very likely that they'll perform a Nissen Fundoplication and put in a gastric feeding tube, so that he can come home more quickly.

I just reread this post. The part about the neurologist meeting sounds awfully negative. I understand that the docs can't see the future any better than the rest of us. Their task, when informing parents, is just about impossible. I'm not angry with them, or trying to "kill the messenger" - it just seemed to be the best way to convey the tone of the meeting.

Lewis is sleeping peacefully at the moment and apparently threw quite a fit when the nurse woke him up earlier, including audible crying. Nice work little man.

Roller Coaster

Emotions in the NICU completely redefine volatility. By comparison, the financial markets are a bunch of weenies. Almost all the news we received today was positive. Though we are extremely cautious and guarded in our optimism, today is a much better day than yesterday.

Last night's MRI went better. Lewis was sedated, intubated, MRI'd and extubated uneventfully. We're meeting with the neurologist tomorrow to get more detail on the results. Preliminarily, the attending physician told us that there were "some lesions deep in his brain, but overall it looked much better than I expected".

Respiratory - the doctors caved - Lewis won the nasal cannula battle. He had been yanking at it whenever he was awake. Today, they decided he didn't need it. He's been without it since this morning and so far so good. He's still not swallowing his secretions, but he is coughing more, which is a good sign.

Feeding - 18 ml/h right now through the naso-gastric tube, with plans to go up to 21 ml/h tonight. 21 ml/h is full feeding, so he'd be taken completely off his IV nutrition at that point. (He'll still have the IV for clear fluids and meds, but not food). So far, no reflux, the Reglan seems to be working.

Tests - the positive Staph culture from Sunday is not MRSA (antibiotic resitant staph). This means that the antibiotics Lewis has been on since Sunday are the right ones for both the Strep B and Staph.

Full day tomorrow. We have meetings with the speech therapist and neurologist and a couple of other Doc appts. I'm going to go visit Lewis now.

Saturday, October 18 update

Jenn and Josh left the hospital at about 1:30 pm on Saturday. Overall, Lewis is doing well.

Feeding - Lewis is getting 20 ml of mom's milk every 3 hours through the naso-gastric tube, they will be increasing that, and he may be up to 25 ml tonight.

Respiratory - Lewis is still on the nasal tube (nasal cannula) at 5 liters, but he's breathing a bit more easily today. He's also getting some respiratory therapy (sort of like a vibrating chest massager) to help loosen up anything in his lungs.

Vision - A specialist checked out Lewis' eyes today, she said everything is in order and looks normal. With infants, they really can't tell any more than that until about 4 months of age, we're told, so this only means that they don't see anything unusual right now.

Neuro - The preliminary read of the 24 hour EEG showed no seizure activity, so they are starting to wean Lewis from the phenobarbitol (anti-seizure meds). This may help his sucking reflex, which is lacking right now, and is a concern for feeding without a tube.

Holding and Feeding the Baby! Jenn got to hold Lewis, while Josh fed him today (using a syringe through the tube). He generally seemed more active and alert while we were there.