revisit on Foster parents

Tonight at dinner we started taking down all the holiday cards that are on the wall by the kitchen table. Most have photographs of the families, and some are of photographs of the children that shared the orphanage with the Little Man.

It was interesting to see who he would pick out of the family photos, but there is still a "chinese" connection. I asked him if he remember the orphanage or his foster family, and he looked at me like I was from another planet. Honesttly, the kids give me that look often and I presume it is about me, not them. I reminded him that he lived with another mommy until he could come join me. When I pulled out the photo, he studied it. I asked who is that, which he pointed out himself and then said "I don't know" and "a man" to the people whom he first called 'mama' and 'baba'.

Amazingly, this shocked me as much as the first time when he saw the photo and immediately pointed out mama and baba. Is he forgetting? Is it that he's been socialized into accepting us and not them? We'll never know. And it comes at an interesting time.

This week for the first time he asked me "what's that" about the scare on his lip. I explained he was born with a hole in his mouth, but the doctors fixed it and that's the scar. (check out the book special smile at http://www.aspecialsmile.com/ if you need fodder for conversation with your children, feel free to tell her I sent you). Tonight I showed him a photo pre surgery with his foster mom. He pointed to his lip and siad "no more hole". Amazing. But while I've brought cleft lip/palette up on occasion with the boys, this was the first time The Little Man brought it up, and he brought it up when it was just me and him. Tonight we all talked about it.

This was also a week when his biological mom flashed through my mind on occasion. Not staying heavily, I always dismiss the thoughts of her saying to myself, "I'll send her all the energy I can muster on her big holiday" which is Chinese New Year. Interestingly this year, Chinese New Year falls on Valentine's Day. I don't think the Chinese observe Valentine's day (any one who knows better than I is most welcome to educate me on this subject). But this week I thought more about his foster family. They were in it to help kids, and likely the income as well. But they knew they were a transit stop, not home. I'm not sure I'm a big enough person to do that. If I had to, if a child fell into my lap, and needed the transit stop, I would be there. But would I willingly raise my hand for that role? Wow, not right now. I'm just not the person ready for that role at the moment. So the foster family had been on my thoughts although I said nothing to anyone about it.

The shock of his not recognizing them is weird. Has he moved on? He left them before he was two, so how much should he remember? But leaving them couldn't have been easy. I guess I won't know until he is much, much older if even then. again no great conclusion. Just sharing the moment, the thoughts.

On the train, The Smile Train

I'm like Groucho Marx, I really am suspicious of any organization that wants me to join. This feeling of suspicion is further supported by the con artists pitching all sorts of "services" that I MUST have as a new business which I generally find unnecessary, expensive, and sometimes ridiculous. Now add on to this that I approached a few charities asking them if it was 'ok' that I tell the world that I'm going to give part of my toy company proceeds to them. You guessed it, even when I'm trying to give money away I received mixed reactions on being supported by a "farting elephant" let alone one called Norman PhartEphant.

Today, I went to visit the worldwide headquarters of The Smile Train in New York. They invited me. They gave me approval to use their name before I even launched, they heard I launched and actually wanted to hear about it. I got to tell you there is something great going on there.

They are a very small team (less than 50 total employees), run mostly on volunteer power and donations. The Smile Train not only provide surgeons to the world, they have those surgeons teach while they are on the road. Then The Smile Train provide the funding for the local clinic to continue the treatment and care of kids with cleft lip/palette.

Being in their offices was cool. They have amazing photographs of kids on the walls. The people are young and energetic. There really is nothing terribly elaborate about the place. I was there with Norman, Norman PhartEphant. They all wanted to squeeze his tail and share stories of what word they used for 'fart' when growing up; toot, puff, squiggles, barking spider, etc.

Interestingly, they do try to track kids that have gone through their system. Frankly, we are talking a lot of third world activity, many orphans, many assumed names. We searched for my Little Man but found nothing. It doesn't mean they didn't help him, just the information was not easy to find today. They do have a clinic in his home region.

After collecting a bit of literature on their operations I left. While eating a burger in mid-town, reading the literature, again I was struck by how tremendously crippling a cleft lip/palette is in many parts of the world. It is 'bad luck', it is 'ugly' and maybe worse of all, even for the families that love, care and keep their children, they may not have the skills to feed the baby or the money to ever correct the lip/palette surgically.

There are families around the globe that will walk for 3 weeks, sell all their possessions on the way to fund the trip and then beg for existence on arrive in hopes of finding a Smile Train sponsored clinic that will give their child a new life. Of course, there are those that choose to kill their child instead. One of the in between parental choices is abandonment; a message I interpret as "we love you too much to kill you, we hope someone helps you, but were going to leave it to the cosmos (or God, or karma) for the outcome". And considering the children that are killed, that are abandoned because the parents have no hope, is one of the many reasons why I want to support The Smile Train. The more kids they reach, the more the world understands that therapy is available, the fewer children marginalized. And that is a worthy effort, without even considering the lips, palette, children and lives in which they actually have the opportunity to help.

So, I am the kind of person that can sit in business attire in a mid-town burger joint and cry. Ok, sob. It is not bad tears, it is not good tears. It is tears of overwhelm; look what we can do if we try and overwhelm that too often we may be too busy to remember to try. So, I'm impassioned today! I will sell Normans for Smile Train! No organization is perfect, but I'm going to support their attempt.

Ears Have It

Just a quick update. DS2 and I went to the ENT (Ears, Nose and Throat) doctor today and it went well. I really liked the guy, he is with NYU, so if anyone needs a recommendation in NYC, give me a holler.

The good news, and bad news. DS2 is hearing "normally" meaning volume or decibels. He hears to 30 decibels and really should be hearing down to 15, but for a cleft kid this is normal. However, his ears are full of water, which the doctors sees as having no ventilation, which means this has been a problem for more than a year. This wasn't diagnosed by the pediatrician as they couldn't see past the wax which was removed today - about 1/2 inch in each ear. Again the Dr. said this had been there for years and I wouldn't have reached it in normal cleaning. DS2 was a trooper about removal. He sat in my lap very still and seemed relieved when it all came out. I think it relieved some pressure. He liked it so much he asked the doctor to look in his nose too.

The Dr. says the water has to come out. While he can hear sounds, the water stops the differentiation of sounds. For example, it is unlikely he can hear the difference between "p", "b", and "d". So speech acquisition is clearly affected. To remove the water, we are putting in ear tubes. About 95% of all cleft palette kids need this during childhood. It is an operation, but a quicky. The doctor says it takes 12 minutes, but DS2 still has to be fully sedated, in recovery for an hour post, and then loopy for the rest of the day. We are scheduled for December 30th.

The Dr. also thought he hasn't had chronic infections as the canal was not particularly swollen or irritated. This is all good. But everyone (meaning those who get paid) are nervous about the insurance coverage, because now I'm moving temporarily to COBRA. Should be a fun game on this one.

This coming Monday I have the "hearing" on what type of therapy and how many sessions a week DS2 is going to receive from early intervention. It is good he tested poorly upfront, as this means he may get more rather than less. With therapy coming on board, at the same time as ear tubes go in, I'm rather hopeful that we can have enough speech progression to know how he's doing by March 2009 when I have to put in the reservation for preschool. Amazing how it all goes together!

bumbs and scrapes, Dentist

So an update on scrapes, bumps, teeth and DS2's dental appointment.

On DS1, his bandage is now starting to come off. The bump was a good inch and a half, and I love the super glue they use at the ER.  If the wound is not in a highly flexible joint, i.e., hand, elbow, knee, I totally recommend asking for "the glue" rather than stitches.  The thing is that stitches on a preschooler's head never work, the kid just kicks and screams.  But with the glue four people hold him down and then they put the glue, pull the skin close, then glue the bandage right on top.  This was bandage really only starts to come off as the skin grows, shedding the outer layers.  As the bandage gets loose, I trim around the edges, but leave the rest in tact.  

Ok, yes this morning I laid him down, put my legs over him and pinned him to the ground to trim half the bandage off before it got ripped off by a sweater or jacket at preschool.  I think this means I'm as strong as four people in the emergency room department!  Years ago I had a kitty that had to have stitches removed.  That was easier, I wrapped her in a towel, shoved her in a cowboy boot and removed the stitches from the exposed part.  Done in 30 seconds and one short howl. Quick.  With a toddler there's the whole "this isn't going to hurt" chat first.  But last time I had to take stitches out of DH, we had to have that chat along with alcohol and him turning his head as well.  But they all have survived. 

I have two boys, really three if you include DH.  I anticipate going to the ER every six months and feel comfortable with the minor stuff.  I figure at some point we'll have a broken limb in the household, as well as one of them will eventually catch the couch on fire.  I'm the one who will eventually light a pan on fire. When it was confirmed with the pregnancy of DS1 that he was a boy, these are the things I just came to assume.  If I had girls, I don't know, I don't have girls.

I am constantly amazed at the placebo, or more specifically, the power of kisses.  Tears, tears, streaming down the cheeks.  Scraps, bumps, falls, all leading to tears.  However, a couple kisses and they are good to go.  If only that continued through adulthood!

On to dental, DS2 had his first dental appointment. Yes, 3 months into our new lives and I'm just getting to this stuff.  It didn't seem fair to freak him out with sorts of different doctor appointments up front.  As DH said, he hasn't likely seen a dentist so no loss on a month or two now.  Anyway... no problem.  He liked the office, the dentist, the staff, and cried when it was time to go.  They didn't even put him in the chair, he just played on the floor, ran around and when he came by DH the dentist would peek into his mouth.  After a couple peeks, he let the dentist poke around.  He is missing one tooth on the top, by count.  We think it is the one in the cleft, but there is no break in actual teeth; he has a full bite, an under bite.  We'll have to do x-rays down the road to see if the missing tooth is coming in;  in the wrong place, or at all.  

The dentist did a "fluoride treatment".  This goes in the nod your head and say , "yeah, right" category in my book.  He brushed some stuff on his teeth, that I have no doubt DS2 licked off within 30 seconds.  Anyway, the boys are good about brushing their teeth.  Honestly, I was having a tough time getting DS1 to brush his teeth.  But the first time I handed DS2 a toothbrush, he knew what it was for and put it right in his mouth, no complaints.  This was observed by DS2 and he stopped complaining.  Now they both brush their teeth, or as I say "tickle all their teeth" in the bath tub each night.  Ok, I wasn't a stickler about actually using toothpaste.  I was happy they were brushing.  But now 2 months into brushing, the dentist introduced flavored toothpaste with a cartoon character on the tube, which makes it all that more effective.

So anyway, when did you start seeing a dentist?  I really thought about this the other night.  I don't have many childhood memories.  I moved when I was 9 years old from Indiana to Idaho, so I know which memories are pre-nine years old.  I don't remember seeing a dentist before I was nine.  I was thinking about this because I let the boys brush my teeth if they want, after I finish off brushing their teeth.  DS1 asked why I had so much gold in my mouth. Aha, mommie had sooooooo many cavities.  She had three root canals before age 15.  Yeah, you can guess my flossing habits.  And no, I don't remember having tons of candy or juice, so I think weak teeth are a genetic thing.

Again, anyway, my early memories was that when I had a loose baby tooth, my dad pulled it with the pliers.   This wasn't done in haste or anger, but just the way we did it.  We weren't really poor, that was later,  I think it was just the way we did it.  Other kids bit apples, or carmel candy.  I hope to NEVER pull my kids teeth with the pliers.  However, if push comes to shove, I know how to do it.  

So their you go, deep thoughts on bumps, placebos, teeth and dentists.

Good news, Bizarre Times

Good news, we went to visit the surgeon yesterday and DS2 checked out great!

The surgeon thought the lip looked "pretty good", which I wanted to smack him as the lip looks great! But when we tipped DS2 and got into his mouth, the surgeon was totally surprised, I could see the shock on his face, he thought it was an awesome job. He thinks its American technique, whether it was done by the Chinese or Americans (think Smile train), we'll never know. Upshot is no surgeries until he's a bone graft stage, around 8 years old. There is a chance the the back of the palette may need a touch of work at around age 4, but as the little guy is already saying the "b" sounds, we are hopeful to skip this revision.

Now today I start setting appointments with the Speech Pathologist who will lead us tot he speech therapy and early intervention, the orthodontists, and the ENT (Ears, Nose and Throat) doctor to evaluate hearing and look at the need for ear tubes. But the first biggie is off the list!

On my way back to the office the complexity and bizarre events surrounding my daily life really hit me. I had skipped lunch so I was standing in front of my office building waiting in line to buy a fruit smoothie. For those Non-NYer readers, there are lots of vendors in NY that hang out in the business areas to sell quick foods like, hot dogs, felafels, kabobs, fruit smoothies, fancy coffee, and of course donuts. Well, the guy at the fruit smoothie place is cool, Jimmy, we are friendly.
He says, "hey you are late today."
me, "yeah, I had an appointment out this morning"
him, " so how's the market today,up or down?"
me, " I actually don't know, I'm just coming in"
him, " oh, this means you were out for the boys, are they good?"
me, smile, "yes, just came from the doctor and everything looks good."
him, great, "see you tomorrow".
Jimmy is an immigrant from Vietnam. He knows about both my boys and has met the older guy. He was very excited about DS2 and we talk on occasion about keeping the exposure to Chinese language up. He laments to me that his nieces and nephews understand everything he says to them in Vietnamese, but always respond in English. I tell him to just keep talking to them.

Here's the juxtaposition to this scene. While I'm standing there chatting with a member of my daily life, friends/family circle, I'm 40 yards from the New York Stock Exchange (NYSE) watching the protesters, tourist, and riot police dance. Earlier this week three protesters in black suits, white ghost like mask, carrying signs saying "greed kills" started walking up and down the street. I kind of like this trio but, in my opinion they got the expression wrong. On the Street we say, "bulls and bears make money but pigs get slaughtered." Nonetheless, same sentiment.

Yesterday another group of about 4-5 protesters have joined the mix. These folks are wearing suits and cowboy hats and carrying signs protesting the bail out. There were two guys running around with full face mask dressed like Obama and McCain, but they weren't getting much attention without having signs! Now in the middle of this are the riot police - only a handful - just watching and waiting, with their dog. OF course tourist everywhere, it is easy to hear 4-5 languages in the groups passing by. The kicker, was yesterday was also the second day of Rosh Hashanah (a Jewish holiday) and their was an older fellow, dressed traditional garb, coming out onto one of the taller steps and blowing on a large sheep horn for the Holiday every once in a while (I don't know the tradition, but he seemed serious about his blowing).

Every once in a while I sit back and think, wow, NY is CRAZY. But I still love this city.

Looking forward to the weekend

It's totally a catch-22. I love being back at work, but I love my boys, and I miss them. While its good to have routine and structure (i.e the job), and truly great to have adult things to work on and think about (i.e., work and colleagues), I'm ready to hangout this weekend in toddler land!

It is supposed to rain all weekend, which creates the challenge of what to do, but this too should be fun. I'm thinking tents and forts, baking, stacking blocks, maybe the train set can come out. Of course there will be laundry, dishes and sorting the mess from the week, but yeah, I finally am looking forward to that too.

DS2 this week has started saying "more" instead of just signing it, and saying "high five" when he gives them. These are the things I'm missing out on, that I want to see. His first four words with consistent use has been; mama, DS1's name, bye bye, and sausage. DS1 tells me about preschool at night, but I know he wants to talk about it more and is missing the family play time. Last night he said he wanted to go to work with me, or better, I should go to school with him. I agreed that sounds like fun, but we compromised that we'll play this weekend.

DS2 had a doctors visit, he gained 1 and 1/2 lbs this month!! yeah!! It is amazing, but great. He is a good eater and focused on protein and fat. he's not interested at all in rice or bread, but will do any form of pasta. To gain weight is actually a lot of food intake. First he's more active, so that's burning calories. Also the brain is growing big time which takes a lot of calories, then the extra goes to the weight gain. So far he is very healthy, but we had to take more blood to re due his titer checks on Hep B and Polio vaccines, as they came back negative although his vaccine records report multiple immunizations. However what he was given may have been old/defunct, so better to check now.

I'm starting to get anxious to get him to the surgeons office, but that visit isn't until early October! But the language development has totally surprised me and I take it as a good sign. I'm sure speech therapy is in our future, but getting scheduled for all the appointments takes longer than I would have guessed. But, honestly, I'm not rushing it too much, as he appears to be doing well and I'm constantly testing his hearing to make sure that is solid. (Note; CL/CP kids often get fluid in their ears due to the muscle that helps drain the ears being in the affected part of the palette. When the ears hold too much fluid they have hearing loss; which is totally fixable, but also generally leads to inserting ear tubes).

Historically, I'm not a vaccine fan. As a family we have not had flue shots in years. However, the doctor brought this up. She thinks DS2 will likely need it this year because he's going to be exposed to so many new viruses here. Also, DS1 having started preschool is in prime petri-dish environment. So those moms that have been there, done that, let me know your experience with the flu vaccines.

Have a great weekend!

8/7/08 - good peds visit

The last couple days have been an emotional roller coaster. Today I got my period. Thank god, the drama can stop. I didn't realize I was due, but it totally makes sense. Enough about me.

Ds2 was a trooper at the doctor's office today. Happy and playful for the first hour. The second hour was the physical examination, including blood draw and shots. Well, he's officially 22lbs. Doc would prefer a couple pounds, but to bring it on by food, not junk and not formula. He's not officially anemic, but at the very low end of the "acceptable" range, so we are starting a supplement, but no shot. His white blood cell count is slightly up, which means he is mounting a slight immune response. This makes total sense to me giving he is eating things he's never had, breathing different air, and sleep patterns are off. I just hope my immune system is doing the same! Doctor is cool with stopping formula and going to whole fat milk. This is a step I skipped with ds1 who gave up milk at the age of one; he prefers yogurt, cheese, butter, sour cream, and ice cream. His head is flat, flat, flat in the back, but too fused to do anything about it. That is ok, I like his head.

The blood draws were for a variety of stuff; titers to see if the vaccines he was given took, basic neonatal test required by NY state like HIV, Hep B & C, skin test for tuberculosis, because of the low iron, a Asian specific iron test for kids that might have allergies to fave beans (ok, I'm not making this one up, but it is something close to that, imagine having to avoid fave beans for the rest of your life, yep, not a biggie), and now I'm waiting to collect a stool sample for parasites that goes off to a very special tropical disease lab. All this stuff will take weeks to come back.

But there were tears, followed by screams and sweating bullets during the tears and screams. But hey, that was just me. No really, felt bad for him, but he was fine within minutes following the ceasing of poking. He's a bit pissed with me, but by bath time it seems that I had been forgiven.

On the cleft - report from peds says looks great and can't believe how much he is babbling. Told me to start getting speech therapy involved now although agreed that the first surgery isn't likely to be until around the age of four. Also get to dentist, due to the increased nutrition in the last two weeks, new teeth are poking through - yes, you guessed it those lovely two year molars that support the drool production!

Things I didn't know - many Asians have a dry powdery ear wax versus our Caucasian gooey yellow stuff. Almost all babies from Asian countries and Guatemala have big birthmarks on their butts, called Mongolian Spots. While these are purple and very noticeable, they typically disappear before puberty. DS2 only pees when I take his diaper off at home, not at the doctors office.

I'm exhausted, long day, but things I'll hit on in coming days:
mommie vs. me time competes with daddy time as well
hating/loving anyone your child smiles at

On Cleft Lip and Palatte

Honestly, I've been dreading this post. It has been building for a few days. I need to talk about cleft lip and palette in honest terms for those considering adopting a child with this "need". Also check out the Yahoo group for cl/cp, medical websites and seek out other parents/adults dealing with the issue.

Everyone says it is "fixable", its just a surgery. These statements are correct ,but incomplete. it is fixable with work, time and multiple surgeries. I'm not a physician or a speech therapist, so I'm going to talk in simple terms with the incomplete knowledge I have at this time. I encourage parents with greater experience to add comments to this post!! And if I present any errors, I will edit over time.

Here it goes. The palate in simple terms is the roof of the mouth. In kids with cleft palate, the palate has not formed completely, meaning that the roof of the mouth opens freely with the nose cavity; defacto the roof of the mouth is the top of the nose cavity. This creates the ability to shoot food out your nose. Which seems highly functional and fixable. However, in closing the palate, it also creates the ability to stop air movement as well as food movement. This stopping of air is necessary to create sounds like "b", "p" and "ch" among other sounds. If the palette is connected but a lot of scar tissue is formed, the palette may become stiff making it difficult to make some sounds. Unfortunately, we won't know how strong and how flexible the palette is until our son starts speaking and we can evaluate the sound.

The muscles and palate involved in creating sound developer according to a variety of stimuli, including sucking, eating and talking. But guess what, kids from orphanages often have been bottle propped, which means they may not know how to suck. Furthermore the older kids are likely ate traditional Chinese baby/toddler food, congee, which is very soft, so soft they haven't learned to chew. Children in an orphanage are unlikely to have great one-on-one interaction to create the ability to mimic speech. Finally, English is very different than Chinese in which parts of the mouth are used in speaking. In totally, the muscles involved in speech and the palate are unlikely to have been exercised in the manner necessary for English.

Now lets talk about what happens today when a child in the US is born with cleft lip and palate (cl/cp). First a plastic device s fitted in the gum gap to close it. Then surgery occurs to close the lip, gum and palette, all well before the age of one. Well before the time the child starts talking, the muscles and palette are complete. There may need to be revisions for cosmetic or scar tissue type reasons. When the baby teeth a vigilant what on the teeth pattern/placement begins. Is the bum line holding? If not more surgery when the adult teeth start to show on the x-rays. A bone graph from the hip may be necessary. Orthodontist work is likely necessary, braces will be tough to avoid. bone graphs are usually done around ages 6-9. A bit of hip bone is put into the gum line so the permanent teeth have a place to anchor. Finally, after all the facial bones are done growing (think 16-18 years old) the final revisions are possible. From the extreme end this may include breaking the jaw to correct an overbite, or on the more mild end just a bit more cosmetic work.

Now lets note what's happening in China. The lip is corrected, sometimes the main palette is corrected, but almost never is the gum line corrected. The lip around a year, the palette anytime between 14 months and 5 years. The desire in China to do big surgeries on little babies is lower. Due to the lack of gum line correction, there may be a slight hole at the gum line. The gum is unlikely to be repaired until closer to 4 year old, when the complement of teeth are in. Due to the lack of early intervention on the gum line the surgery at age 6-9 to bring in bone is an almost certainty. The correction for overbite in the teen years is still hit or miss depending on the specific child's development.

So, yes, everything is fixable and correctable. But the reality is this is a 4+ surgical process that won't be complete until the kids are 18 or so years old. As a prospective parent, this means you must have the means to pay for surgery and/or the long term prospects for good insurance. It means early intervention (from the beginning) on speech therapy, that may continue for many years.

I don't want to scare prospective parents off, but cl/cp is not a birthmark that once removed, the process is completed.

I have a very dear friend, who is the age of my parents. When I told him I was adopting, he was over the moon. I went on to explain the child was a boy, with cl/cp, my friend went silent. Over the last 11 years of our relationship he had never mentioned that his currently 25 year old son was born with sever cl/cp. My friend simply said, "do you know what you are getting into?" I explained what I knew. He agreed, its all correctable. Then set up dinner for me with his son. His son is a typical 25 year old. The scar really is not noticable. Frankly, he thought it was amusing that I even wanted to chat about his perception of life with cl/cp. He knew no other life and the cl/cp stopped him from nothing except for sports for six weeks each time he had to have a surgery. This young man had severe case with the overbit revision at 16. Even at 25 he still has a slight hole in the back of his palete, but no real speach impetament. At the end of dinner, I knew it was fixable, but its not simple, it takes time and energy, over many years.

Frankly, I believe we all have issues that take many years to resolve. I prefer knowing what one of the big issues is form the start, i.e., cl/cp. But, this will not be the only issue. Like all parents, we'll have to figure out how to deal with peer pressure, teen hormones, drugs, sex and educations, let alone potty mouths and potty training. It seems to me like cl/cp is more straight forward than any of the others. This is why when the referal came in I said "yes, this is a challenge we can address".