2 Options to Try to Keep Andrew’s Food Down

Thank you so much for the advice and general support and love from our last post about Andrew’s feeding woes. We really appreciate it .

Andrew is out of his 4-6 oz a day listlessness and has now worked up to about 16-20 ounces a day (which translates to about 480-600 calories a day.) Our doctor and nutritionist would like to see a minimum of 1000 calories for steady weight gain.  Otherwise, keeping Andrew comfortable and the food down is still our main issue. While we keep plowing on with what we’ve been doing (which hasn’t been going as well as we’d like), we’ve been considering other options as well. Here are our top two options:

OPTION 1: J-TUBE AND/OR NISSEN FUNDOPLICATION SURGERY
Right now, Andrew’s tube brings food straight to his stomach, but he’s still refluxing and vomiting a lot of it up. A J-Tube would bring the food straight to the jejunum, near the entrance of the small intestine, thereby completely bypassing the stomach. The benefit to this, if it works, is that it makes it a LOT harder to reflux up stuff from the small intestine than from the stomach. The other surgery option, which could be coupled with the j-tube is the nissen-fundoplication: surgeons take a portion of the stomach and wrap it around the esophagus. The nissen sometimes helps, sometimes doesn’t. Generally, it can get rid of the ability to vomit but not the urge. We are more open to the j-tube over the nissen. But, ultimately, we’d love if we could avoid any more surgeries; Andrew’s already had four on his little tummy already and he’s not even two! Surgery will be our last desperate option. And such is the nature of severe reflux, but surgery may not even help all that much. One will just never know until they try it. We’ve decided to put any conversations about surgery on hold until summer at the earliest. We have too much going on between now and then.

OPTION 2: FEED ANDREW REAL FOOD IN THE FORM OF A BLENDERIZED DIET
Most medically complex babies, children and adults who depend on a feeding tube for nutrition drink specialized formula. Forever. They are fed nothing else but the formula for the rest of their lives.  It is nutritionally complete, easy for parents who are juggling so many other needs with their child, and preferred by doctors and nutritionists because it’s complete nutrition and easy calorie calculation.

To me, the easiness of the formula preparation has always been appealing. However, the idea of Andrew being fed formula through his tube forever and ever has always made me slightly uncomfortable for two reasons: First, when Andrew was eating by mouth–although not very good at it–he was eating real, homemade, nutritious food. As any parent will tell you, preparing and feeding one’s child good, nutritious food is a primal urge of sorts and immensely gratifying. For me, Andrew getting a g-tube and no longer eating by mouth was difficult to accept and took over a year of going back and forth before finally agreeing to have it done. And then to have him go from real food to a 100% formula-only diet forever felt like another small kick. Which leads me to the next reason I’ve never felt completely comfortable with Andrew’s formula-only diet: his Elecare formula is 53% corn syrup! Yuck!

Because Andrew refluxes so much of his food anyway, I figure I have nothing to lose in trying something called the Blenderized Diet. In its most basic form, I would take real foods like vegetables, fruits, grains, and meats and blend it in a super high-speed blender until it becomes liquid form. And then, like his formula, I’d feed it to Andrew through his tube the exact same way. My hope is that Andrew will eventually switch to a mostly real food diet (fingers crossed that he tolerates it) and, like so many other families have found, the real food will calm his tummy down enough to keep it down.

Our nutritionist and GI doctor said they’ve never had a patient go the blenderized route and weren’t very familiar with it. As this is rarely even presented as an option by most medical professionals, I wasn’t surprised. However, there are a handful of GI departments around the country–mostly at the top children’s hospitals, like CHOP or Cincinnati Children’s–that encourages  and offers parents the proper supports to get started with the blenderized diet. Our medical team was not discouraging of it, however, and said they’d be willing to work with us as it would be a learning experience for them as well.

Ending on a random note, a cute video of Eleanor and Andrew. Excuse that it’s sideways.  I couldn’t figure out how to flip the video around so that it’s horizontal. It still amazes us how sweet, gentle and appropriate Eleanor is with her dear twin brother.

 

G-tube Woes, More Seizures, First Dental Visit

Our euphoria with the G-tube at home lasted approximately a day and a half after our hospital discharge. The good news: it’s still so easy feeding Andrew! Just put the formula through the tube and then done! The bad news: No matter  what the rate or volume of feed through his new Kangaroo Joey Feeding Pump,  Andrew is miserable, gassy, and needs to be vented constantly.  The food basically comes back out whenever we vent him. For a while, we had reasonable success feeding him via gravity feeds using a syringe, bolus-style. But while he could tolerate 4 ounces of formula at first, he became increasingly less tolerant. It went down to 3 ounces, then 2 ounces. And now he can only drink  1 ounce at a time without vomiting it all up almost immediately. He also spends most of the day chewing on something, swallowing more air, constantly refluxing, and occasionally gagging. Lovely. So he has lost two pounds since he’s had his g-tube placed and is back down to a whopping 18 pounds. Our GI doctor and the surgeon are obviously concerned. But I think it’s clear they have no idea what’s going on, exactly. Andrew’s been drinking 3-5 ounces total the past couple of days. We were hoping he’d have a minimum of 30 ounces after the surgery. I think it’s just a weird cerebral palsy-related neurological thing and, hopefully, the food intolerance will pass.

And, of course, another night in the hospital. This time, for an overnight EEG to see what was going on with Andrew’s seizures. Basically, whereas we couldn’t see his seizures before, we can definitely see them now. And, apparently, Andrew is having seizures all day long. They may look pretty benign but are rather sinister: he tenses a bit, looks up , and gazes to the right or left. When most people watch him, they think he is being curious and adorable. I don’t usually share that they’re seizures. The other seizure type he has is that he looks as if he’s completely zoned out and it’s difficult to get his attention. So, for now, he will continue with a medication called Zonegran/zonisamide. We’re just going to add a fairly new drug called Banzel/rufinamide to his daily cocktail of drugs.  Banzel is a fairly new FDA-approved drug for the treatment of Lennox Gastaut Syndrome. Seizures, at their worst, have a way of stealing the essence of a person. For Andrew, it means he is often in his own world and unable to come out of it easily, unable to smile, unable to respond to external stimuli.

Adding to Andrew’s thrilling week, we took him to his first dentist appointment today. Unlike his twin, Eleanor, who has lovely pearly whites, Andrew’s teeth have always been tiny, chipped, yellow, and stained. The weak teeth situation is likely a result of his prematurity, poor nourishment from not eating in the NICU for four months, and the countless number of medications he has been on. Fortunately, there are no cavities. We are to return in six months, however, when all his baby teeth are in. At that point, Andrew will likely be sedated, taken to the OR, and have his teeth all restored and covered with a protective enamel of some sort.

But between his feeding and neurological woes, Andrew has been a bit listless, sad, and rarely cracks a smile anymore. The poor guy just looks exhausted . Hopefully, our next update will be a more positive one.

Dad holding Andrew during the dentist visit. Thankfully, the exam itself was very short.

Andrew's new wheelchair stroller, the Convaid Cruiser, is here! We love it. More on this later.

Andrew's new Wombat Snug Seat is also here! I see a lot of possibility with this one but not until Andrew is healthier and more comfortable.

thank goodness for special needs blogs

Parenting a severely disabled child can be an extremely isolating experience. But thanks to the Internet, it doesn’t always have to be this way.  Without a doubt, reading the poignant words of families who are also on this journey has been essential in maintaining a healthy state of mind about our own extraordinary circumstances. Whereas our blog is mostly medical updates and photos for friends and family, these get into the heart of special needs parenting and the world is a better place as a result. Below are a list of some of the wonderful blogs that I am so thankful are in existence!

Over at the Bloom Special Needs Blog, Louise chronicles the trials and triumphs of dear Ben, regularly tackles difficult issues that come up in the realm of special needs parenting, and serves as a pulse for interesting special needs books and media stories. A couple posts that particularly resonated with me:
When there isn’t a happy ending
A fate worse than death?
Friends in need, friends indeed

Stacie, over at Mama Lewis and the Amazing Adventures of the Half-Brained Baby, blogs about her cutie pie daughter, May.
A Hero or Just a Parent? from the New York Times Motherlode blog
If she can do this, I can from The Guardian
What’s God’s plan for May?

Jennifer, over at YES or NO: Raising a boy with multiple severe disabilities, has recently published a memoir about her experiences raising Owen who passed away last year at the age of 12. In addition to finding her writings on accepting your special needs child especially thought-provoking, I love that she writes about her other son, Angus, in relation to Owen as well.
On fake work, cheerful pretend, and hope as snake oil
It’s enough to break your heart wide open

I’ve included Kelly’s blog, Unlock the Secret Voice, because I’ve found no other blog that addresses the content that she does. Kelly recently made the extraordinarily difficult decision to place her severely disabled teenage son in a residential home. Her writings about the experience are brutally honest and filled with so much love for her child that it will make your heart hurt.

Other wonderful blogs:
Love That Max
Bird on the Street
The Gort Family
Caleigh’s Corner
How Life Happens
Elijahland
Thinking of Starting a Blog
Outrageous Fortune

Hello, Feeding Tube

I’ve chronicled our woes with feeding Andrew here, here and here. In a nutshell: despite intensive feeding therapy, Andrew is not physically and cognitively coordinated enough to eat by bottle and mouth in a comfortable, enjoyable, and consistent manner. And with the results of recent swallow studies showing that he aspirates fluids into his lungs during feeds, it has gone beyond mere coordination and pleasure issues to a medical one–it is not safe for Andrew to eat by mouth. I guess this didn’t come as too much of a surprise considering how much choking, gagging, and spitting up was involved with pretty much any feeding attempt. This week, we decided to get Andrew a feeding tube and made the decision that Andrew will never feed by mouth again. We returnedhome from the hospital yesterday.

The hospital stay sucked. I’m not sure how else to put it. But it did. Andrew was also in a lot of pain and was on zero pain medication after the surgery. We had to harass nurses to harass doctors to put the order for morphine in. Two days after surgery, he was still in a lot of pain. Three days after surgery, today, the pain seems to have subsided and Andrew is smiling again. So if you’ve found this blog researching what gtube surgery might be like, just know that despite what the surgeon tells you, it will hurt and serious pain meds will be needed beyond Tylenol.

So, what’s it like at home with Andrew and a feeding tube? Pretty great. I know, that sounds like an odd thing to say. As parents, we knew that feeding Andrew took up hours and hours and hours of each day. But exactly how much time it took didn’t really hit us until today when feeding Andrew took less than five minutes for each meal and we had so much… time all of a sudden. But before we get into too much about how much more relaxed our household is, it’s important to note that the months leading up to the decision were wrought with varying levels of turmoil. After all, any parent can share what a rewarding feeling it can be to watch their child eat. Any person can share how much they love to eat and what a pleasure it often is. For our Andrew–whose body is broken in so many ways–we relished that he could still eat by mouth at all. It was the one normal physical thing he could do, whatever that means, even if he was terrible at it. And in the end, everyone was miserable with Andrew suffering the most. So as I was saying, things have been pretty great with Andrew’s feeding tube in place. The stress of feeding Andrew has been removed and he is so, so, so much more content with a full belly that did not have to involve choking, gagging and crying to obtain.  This was the right decision, indeed.

There is much more to update about. But until next time, here are some photos from our recent hospital stay:

Getting comfortable before his swallow study

Andrew's last meal by mouth ever the night before surgery.

Moments before being carried into the OR by Dad

Post-Surgery ET moment

Hanging out with mom in the hospital

Andrew's new feeding tube (a Mic-Key PEG)

Loving a Special Needs Family Member

Although our twins are nineteen months of age, we can’t help but sometimes feel as if Eleanor operates very much as an only child. While Eleanor is a healthy, energetic, and spunky toddler, Andrew is blind, developmentally a newborn, and has an intensive therapy schedule; all of which makes for a difficult play partner. But to our delight, in recent days, Eleanor has been making the best of the situation in the following ways: we’ll find her snuggled up next to Andrew on the floor, she loves pulling off his socks, and kisses him tons. She presses his belly button (or what’s left of it, long story) and says “beep,” and loves to rock his chair. When he cries, she yells, “NO!” and “WHY?” and sometimes grabs his hand and pulls it to her cheek. Eleanor carefully watches what Andrew’s therapists do with him and when they leave, she takes his therapy toys and gadgets and mimics what they do.  All in all, she is a fine twin sister and it is in these moments that we can sometimes forget the grief that can come with the two not being able to play together in the way that most siblings do. Here is a video of the two. Please excuse the mess! “Bbo-bbo” means “kiss” in Korean:

Eleanor loves Andrew because we, as parents, love Andrew. Generally speaking, when it comes to interacting with a special needs sibling, children take queues from their parents. We’ve noticed this outside of the family as well: if a parent acknowledges that Andrew is there and models warm and loving interactions with him, the child tends to follow suit. This is awesome when it happens. With our own family, we hope that Eleanor continues to watch us model our deep love for Andrew and that her experience as Andrew’s twin sister will help mold her into a more kind, loving and understanding individual.

Recently, our family had the privilege of meeting another family who has been on this walk much longer than we have–27 years! Like us, they also had preemie twins and one twin became severely disabled after a devastating infection that occurred while in the NICU. The lengths this family has gone to incorporate their severely disabled adult daughter into daily family life is inspirational, and the mother shared how having a special needs sister had shaped each of their three other children in a positive way.  We even got to meet one and she seemed pretty awesome!  Below are just a couple of the many photos we took of home adaptations made to accommodate their daughter’s needs. Not included are photos of a two-car garage that was converted into a lovely first floor suite,  too. Having never met another family with a child similar to Andrew, it was a treat to meet and talk with somebody who has been there, is still there, and has lived to share her experiences–the good and the bad–with sincerity and a smile.

Custom-designed, the most beautiful wheelchair ramp ever!

Like Andrew, their daughter LOVES swimming. So they built an accessible pool in their backyard. Note the chair lift in the back.

Another lovely ramp that leads from the deck to the pool area.

And this is just the outside!

Adaptive Seating and Wheelchair Decisions

The time has come for us to really start thinking about and acting on getting Andrew adaptive seating for the home and a wheelchair. Aside from his beloved bouncy chair, Andrew has been using the Fisher Price Space Saver High Chair as his primary seating device.  It was a long road getting Andrew to even tolerate sitting in it. Now that he sits in it fairly well, we have found that he needs significantly more support for the head and trunk.

Here is a Andrew sitting comfortably in his Fisher Price seat.

With the help of Andrew’s physical therapist and an equipment vendor, we tried out two different chairs that seemed appropriate. The first is called the Wombat Snug Seat Model 347. Here is a photo of Andrew all snapped in:

Some notes on the Wombat chair:

• It is seating designed specifically for the home.
• It has wheels so is easily rollable. It can be adjusted high (so Andrew would be able to sit with us at a table) or low (so Andrew can interact with his sister on the floor.)
• It offers a 22 degree tilt and comes with many head rest options, including one with speakers.
• It is 24×28 inches
• Comes with dorsal flexion
• Cost is approximately $4500
• We like that it is fairly compact compared to other seating devices.
• Andrew sat in it happily for over an hour!
• Lots of lateral support so that Andrew’s arms were free to rest on the tray.

The vendor also said that the Wombat XPanda model is very popular as well but the cons, in her opinion, outweigh the pros. Mainly: It’s over fifty pounds and cumbersome to adjust straps/tilts/heights. And while it does come with a stroller base, the stroller base is also very large and heavy.

We also tried out a new model of a Rifton chair.

Rifton chair notes:

• At 25×36 inches, much wider and longer than the Wombat.
• Rifton chairs last for a long time and are known as an industry standard.
• Andrew could use it longer as the growing capabilities offer more.
• No tools necessary to adjust tilt/height/straps.
• Only one head support option, which isn’t enough for Andrew.
• Comes with a rocking option for children who rock/stim.
• Took about twice as long to get Andrew strapped in than the Wombat.
• Does not offer dorsal flexion.
• Upholstery is easier to clean than the Wombat.
• Does not offer enough lateral side support to free up Andrew’s hands.
• Cost is approximately 5k.

Here is a photo of the two chairs, side by side:

We decided to go with the Wombat chair.

We also considered stroller wheelchairs and decided on the Convaid Cruiser.

The Convaid Cruiser without Andrew

The Convaid Cruiser with Andrew in it

This was a fairly easy decision and online research seemed to confirm that it’s a very solid stroller wheelchair option as well. It folds up easily, is adaptable up to 100 pounds (Andrew is just under 20 pounds right now), fairly light compared to other stroller wheelchairs, and as far as wheelchairs strollers go, on the more aesthetically pleasing side as well. I like that while it looks a lot like a stroller, it is also very clearly a wheelchair. Something in the middle.  Andrew fell asleep in it as soon as we put him in so we took that as a thumb’s up from him. We’ve been in need of a stroller device with more support for some time now. We’ve mostly been strolling Andrew around in his Graco Snug-Ride car seat with the Snap and Go, a combo abandoned by most parents by 7 months of age (he’s 18 months now!)

We are ordering the Wombat and the Cruiser through the Early Intervention program so we hope that both items get approved and we can receive them in a timely manner. It was admittedly a bit difficult at first to see him strapped into the equipment. Even though we have known about Andrew’s disabilities for a long time, it felt as if we were stepping into a new phase of Andrew: the transition from Andrew the baby to Andrew the disabled child in a wheelchair. But those thoughts were quickly pushed aside as we saw all the possibilities in terms of feeding and other therapies that the new chairs would offer.

Other adaptive changes for us to consider in the next couple of years: adaptive bath seating, a more appropriate car seat (any suggestions?), a wheel chair adapted car, moving into a home that is more wheelchair friendly, and obtaining a handicap parking placard.

Neurology and GI updates

Gastroenterology: As an 18 month old, Andrew is about 28 inches long and 18.5 pounds. He’s an itty bitty guy and is far, far behind in the growth charts, although he is still proportional. In the past six months of visits with his GI doctor, we’ve attributed his lack of weight gain to a number of factors: reflux (now mostly controlled), constipation (mostly controlled), delayed gastric emptying (not much we can do), and–at this point, most significant–his lack of coordination when it comes to the anticipation, chewing, and swallowing of food. We’ve been working very hard with a feeding therapist on the last part.  Having a feeding tube (mic-key) placed is always in question with Andrew’s doctors. It would certainly be the easier way to go, as feeding Andrew is not only extremely time consuming but can be an emotionally draining one as well.  For now, yes, Andrew is underweight. But he is proportional for his size, certainly not malnourished, blood tests are all normal, and aside from his clear neurological issues, is a healthy boy. From six months ago, Andrew has made significant strides in feeding therapy and we’re going to fight the tube as much as possible.

Neurology: After a diagnosis of infantile spasms back in December of 2010, Andrew’s hypsarrythmia went away after a two-week course of ACTH. And then he went on a prednisolone taper and it came back shortly after. Since then, he’s also tried Vigabitrin (didn’t work), Depakote (didn’t work), and is now on Zonegran (we’ll find out soon whether it’s working or not.)  While Andrew still has hyps, his EEG has also started to slowly change to a slow, spike-wave pattern most commonly seen in a childhood epileptic syndrome called Lennox-Gastaut (LGS.)  It is not uncommon for children with infantile spasms to be later diagnosed with LGS. As Andrew has never had clear clinical seizures (seizures we can see happening) despite having devastating EEG patterns, his case is highly unusual. What has this meant for Andrew on a day-to-day level? Well, Andrew’s physical development has stalled at the newborn stage but it’s hard to say whether it’s the cerebral palsy or the epilepsy, although we suspect mostly the latter. Andrew’s vision has not returned at all either–a consequence of the hypsarrythmia. It sounds all bad and terrible but it could always be worse. We pray he never develops clinical seizures because of IS or LGS, although the odds are probably very much against us. At this point in our journey with Andrew, all we want for him is happiness, physical comfort, and a love of life. Anything beyond that is considered a bonus. And despite the painful and challenging journey he has been on, this is exactly where he is right now; a place we could not have imagined in our wildest dreams during Andrew’s first entire year of life. We do not take this for granted, ever. May the LGS seizure monster never take Andrew’s newfound zeal for life.

After kissing and cuddling, swimming in his waterwaybabies therapy pool is Andrew's favorite activity ever. Water allows him to move and groove in a way he is unable to on his own.

Laughter and Swimming

As Eleanor laughs her little heart out day and night, we’ve often wondered what Andrew’s laughters would sound like. Andrew smiles and coos like it’s nobody’s business to convey his ever growing happiness, but we’ve never heard him laugh. Until this week, that is. After fourteen months, we finally heard it. Since then, we’ve been trying to elicit laughter again but have not had any luck. It’s a magical moment for any parent to hear their child’s first laugh. But when you’re a special needs parent, such milestones are especially cherished as milestones become “inchstones”. It’s the small things.

This week, Andrew also went for his first swim in a swimming pool! And he LOVED it. It was also a great time to try out his new WaterWayBabies flotation device that we ordered after seeing it on a couple of special needs blogs. This product is awesome. It provides great head support for Andrew and allows the rest of his body to be free to move in a way that Andrew is unable to do as well out of the water. And unlike most other products for special needs kids, it’s extremely affordable. We also ordered the accompanying green pool so that Andrew can do water therapy at home, too.

Andrew's smile of approval

Feeding Woes

Because of his complicated GI history, Andrew has always been a bit underweight. When Andrew came home from the NICU back in October, he was five months old and weighed about 8 pounds. Two months later as a seven month old, he weighed 14 pounds. Four and a half months later as an eleven month old, he still weighed 14 pounds. It’s interesting to note that during this time, NONE of the many doctors that Andrew saw were concerned with his lack of weight gain, except, of course, his GI doctor! After an appointment with her, we decided to increase Andrew’s feeding therapies from twice a month to twice a week, double his food intake, and to add a teaspoon of olive oil to each meal as well. We were told to come back in 4-6 weeks.

From that day on and three weeks later, Andrew was eating like a champ. A champ, I tell you. Sure, he still doesn’t have the whole open-mouth-chew-food-move-food-back-to-throat-for-swallowing coordination down that well. But with ultra-pureed foods, he was able to get it down, somehow. And, sure, each feeding took anywhere from forty-five minutes to an hour… but he got it down, darn it! And he went from 14 pounds to 15.14 pounds during that period.

And then Andrew started spitting up a meal every so often. And then a meal every day. And then pretty much every meal, every day. And then, occasionally, even his bottles. We took him back to the GI doctor and was told it was either allergies or reflux. It’s not likely the former, so definitely the latter. So now Andrew is back on reflux medicine, Prevacid, once a day for a month to see if it will help. It’s been about a week now and his vomiting has increased considerably. We’ll see what happens. The GI doctor told us to call back in three weeks as it apparently takes time for the reflux medicine to kick in.

Meanwhile, Andrew continues to vomit every meal. And because eating by mouth has become such a stressful experience for him, he is starting to develop psychological signs of aversion as well. For example, if we even TOUCH his lips with that first spoonful of food, a powerful gag reflex is immediately triggered. Not always, though. Sometimes. Andrew also does other reflux-y things like hiccups, wet burps, a gurgling tummy, and if his stomach is especially active–pain.

As parents, this is clearly very distressing. We thought we had put Andrew’s days of malnourishment and feeding intolerances behind us. But here we are again. Fortunately, aside from all of the gagging and vomiting, Andrew is temperamentally still a pretty happy little guy. We were worried that when we weaned him off of Vigabitrin (seizure drug #3) that he would lose his happier and calmer self. However, he seems to be tolerating the Depakote (seizure drug #4) pretty well. When Andrew is readmitted into the EMU in 2-3 weeks or so, we’ll find out if it is working.

Andrew's first time swinging! He loved it! His head is very strategically placed to provide some head control. We are looking into buying something to provide him with that extra support so he can swing his little heart out.

Lounging around with his BFF at the park.

Loving life.

A march, a birthday, a hospitalization

On April 30th, the kiddies and I walked for our local chapter of the March of Dimes. With the generous support of our friends (even ones we’ve never met!) and family, over $3300 was raised for our walk. For those of you who contributed…. thank you, thank you, thank you, thank you!

Earlier this month, Andrew and Eleanor celebrated their first birthday. What a first year it has been for all of us. In the Korean culture, there are two celebrations in a baby’s first year of life. The first is called the baek il and takes place at 100 days of life. Reaching 100 days was celebrated because of the high infant mortality rate years ago. One of Andrew and Eleanor’s great grandmothers, for example, lost three babies before 100 days. On Andrew’s 100th day, his health situation was extremely precarious: he hadn’t eaten in almost three months, was experiencing symptoms of malnourishment, and heading towards liver failure. It was an especially sad day for our family. From that point, it would be two more months before he came home. The second celebration is called the doljanchi and is the first year birthday. Having spent much of the year wondering whether or not Andrew would even survive his first year, this birthday was especially meaningful for us.

One of many family photos. Taken by our very talented family friend, Esther.

Another family photo. This one was taken by my brother, Johnny. Here, Eleanor is trying to choose between money (for wealth and prosperity), a spool of thread (for a long and healthy life), a pencil (for scholastic achievement), a reflex hammer (a nod to her father's profession), and a copy of Shakespeare's Hamlet (a nod to mom's profession). She chose the money. For Andrew, we rigged it a bit and chose for him the spool of thread. This is also the only photo from the party of Andrew smiling.

Two days after the party, Andrew was–yet again–hospitalized for another EEG to monitor whether or not the Vigabitrin was working. While on Vigabitrin, Andrew has been the happiest and most comfortable he has ever been in his life. There was no improvement in vision or physical development. But he was happy! And responsive to sound and touch! Smiling! Cooing! Taking regular naps during the day! Taking 2-3 meals of solids a day instead of one or none at all! He even stopped holding his breath and passing out all the time! We were so sure that his EEG would correspond to these positive developments. Nope. They did not. The EEG turned out to be exactly the same–horrendous and hypsarrythmic–as it was pre-Vigabitrin. So now we’re weaning him off of Vigabitrin and starting him on seizure drug #4: Depakote. Why not just keep him on it if he’s so happy and comfortable? Well, if you let hypsarrythmia EEG patterns go on for too long… bad, bad things happen. Andrew has already experienced much of its consequences. Hopefully, as we continue to wean Andrew off of the Vigabitrin, his baby happiness and comfort will remain preserved.

Cuddling with a stuffed sheep that makes whale noises, a gift from one of Andrew's awesome therapists.