A Plan for Decan -- Originally Published March 5, 2008

Hey, y'all. We're taking a quick break from Michael's travel log to bring you some medical news. We took a trip to see Dr. B________ today. Dr. B is the pediatric ENT that Michael sees for trach-related monitoring, and he was the next step on the process of eventually getting this trach tube out of our little man.

Well, good news. Dr. B sees no reason why Michael can't be tested for decanulation ("getting the trach out"). The current plan we are working toward is to have Michael checked into the hospital PICU (pediatric intensive care unit) for a couple of days in April. While there, he will have a bronchoscopy and have his trach capped all day and night (possibly for two days) to see whether he can handle it without problems with his 02 levels or his CO2 levels.

Anyway, Dr. B sees no reason not to proceed. It was really a quick and uneventful visit, with no big issues. Ultimately, the decision is Dr. Pulm's, but Dr. B's attitude was "He has to bite the bullet and do it sometime." He also told us we were in great hands with Dr. Pulm, which we already knew. We discussed for a few seconds intermediate steps like downsizing or something, but again, the approach seemed to be to just "go for it" and give the little man a chance to prove to us what he can do. Tongue control may still be an issue during sleep, as Michael's airway is still small, but Dr. B says that it is amazing what the body will know how to do to protect itself.

Interestingly enough, Dr. B says that there may be a possibility of doing the test by removing Alex's trach altogether rather than capping. As he pointed out (and we have pointed out many times), it's hard to breath with a small airway and a big ol' tube down your throat. Per Dr. B, "if there is a problem, just put the trach tube back in." We have a funny feeling that Dr. Pulm won't go for that idea, but we'll see. We go back to him next week.

Finally, on the medical note, Dr. B took a look at what we think might be a small fistula (hole) at the part of the mouth where the hard palate meets the soft palate. Like us, he isn't sure. There is a dimple there, but no one can tell if it goes the whole way through or is just a dimple. Either way, he isn't worried about it (and neither are we). It is what it is, as we figured he would say.

And, on the food note, Michael keeps eating more and more solid foods daily. What a champ. He has actually eaten a whole jar in one sitting, and he is getting better every day. This is one thing we are GLAD didn't stay in Vegas.

More from Michael's travel journal tomorrow.

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The Vacation According to Michael, Part 4

Originally published March 4, 2008

Before we get to today's travel update, I just wanted to let you know that we have been re-approved for night nurses until March 12th. Oh, and Michael continues to eat more every day. Also, tomorrow we go see Dr. B________ as the first step in determining whether Michael will be allowed to take a sleep study next month and maybe get his trach out. As always, thanks for your support. Now, back to the program.

Michael's Travel Log, Day 5, Wednesday, transcribed on this, the following Tuesday:

Well, the O2 monitor is everyone’s least favorite piece of equipment. When I sleep, it always says I’m not breathing well, but the doctors say its lying. Dad hates it, and our friend threatened to throw it into the pool. It was going off about 4x an hour, and at least 1x an hour, someone has to get up and fix the cord, or empty the water from my hose, or re-attach the sensor on another spot. Well, finally on Tuesday I had a great night – my levels were 97 or above all night long (where they probably always are, just the dumb monitor can’t figure it out). I think Mom and Dad finally SLEPT, which is a good thing because I like it when they are well rested and happy. They play a lot more that way.

I got to stay at the unit today with our friend for the afternoon, yay!!!! I like that. Mom and Dad and Grandma went off to have some fun. Our friend told me all about the exhibits she had seen that morning, and it sounded really cool … medical dissection, the Titanic … wish I had gone. (Or maybe not – I’m not sure I understand it all.)

I understand that Mom had a good day at the slot machines in Treasure Island today. I had a good day in the hammock with our friend and all by myself. It was my very first hammock. Our friend has such neat ideas.

Thursday:

Today we went to Circus Circus, a kid friendly casino. I liked it, but I slept, so Mom and Dad said, “what’s the point?” and went to the Bellaggio. We had to cut things short because Mom and Dad and our friend were going to see “O” and I got to stay with Grandma. From my perspective, this is getting routine. Up in the morning; off to see more shining lights; funny restaurants; home to sleep. Our friend had a big day, though, hitting a couple hundred dollars on the slot machines, lucky dog. Wish I was allowed near those slot machines. I would bang those buttons something fierce!

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The Vacation According to Michael, Part 3

Originally published March 3, 2008

Michael's Travel Log, Day 3, Monday 2/25, transcribed on this, the following Monday:

The morning started out slowly – it took awhile to get going today, what with still trying to figure out where Mom packed everything. Somehow her cell phone got lost from the old hotel to this new time share, and she wasn’t very happy about it. She was also using her Blackberry to talk to folks at work (I thought we left them behind at home!!!!) She decided to have a “conference call” at 9AM, so Dad and I had a nebulizer and had some breakfast. I ate better than any breakfast before. Then all the big people took me to another breakfast at IHOP, where Mom and Grandma split two breakfasts, and there was so much food on the table. At least, that is what Grandma said when she asked someone to roll her out of the restaurant, but I don’t know. I just slept through the whole thing. Next we went to the grocery store to pick up some necessary stuff (like soda and baby food and napkins and donuts), and while Mom and Grandma were in the store, Daddy and our friend made me try my PMV in the van. HEY! I thought we were on vacation! This thing is a lot easier when I can watch the bunnies of Bunnytown (and Miss Pinky Pinkerton, the Super Silly Sportscaster on Bunnytown – she’s so pretty I have to smile every time I see her.)

After all that, Mom, Dad, Grandma and I went to Venice. I mean, we went to the Venetian. It LOOKED like Venice. I got to walk around all the canal stores with first Daddy, then Mommy. Daddy kept telling me that he was going to figure out a way to get my picture taken with a showgirl – whatever that is. That sounds okay to me – I’ve been flirting with lots of girls on this trip.

We went on a boat ride outside in the canal. Mom and Dad thoroughly embarrassed me by changing me and making me moon the strip before getting into the boat, but that was happening to a lot of babies all around Las Vegas, so I just decided to smile and go with it. The boat driver sang to me – I didn’t like it the first time, but the second song was pretty cool and I tapped my feet and grinned at everybody.

Finally, after a big day, I got to go home and hang out with our friend. (Whew!) Mom and Dad and Grandma all went out to dinner with some friends and I wasn’t allowed to go. But that is okay, because I got a chance to play games and sleep after skipping all my naps.

Michael's Travel Log -- Day 4, Tuesday:

Today I had it. We all went to Excalibur and had brunch at a cafe. Mom kept looking at that Blackberry thing again. She did that for a little while at the Venetian, too, darn her. And, she fed me at the cafe while I was hungry, but it took her a long time to figure out that I didn't want what she was feeding me -- I wanted the other jar. I wanted to eat green today, not orange. How could she not know?

Later the grownups kept taking turns playing the slots and playing with me. When it was Mom's turn, I decided to take matters into my own hands. She was burping me on her shoulder, and I spotted the Blackberry. It was in the chest pocket, right below me. So I went for it. BLAAAAHHHHH right down the pocket. I soaked it good, and it STOPPED WORKING for awhile, even after Mom and Dad took it apart to dry it off. YAY! Score one for the baby!

After that Mom bought a new shirt and jacket, then we went to New York, New York, where I got scared by the screams from the roller coaster. Then our friend got to go to a basketball game, but she wouldn't take me. I wanted to wait up to see who won the game, but I was too tired.

Monday night was better but not great. My alarm went off about 4x an hour, even on the lower setting Dad programmed, but more on this later. Mom says stop, I talk too much.

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The Vacation According to Michael, Part 2

Originally Published February 29, 2008

Michael's Travel Journal -- Day 2: Sunday (Transcribed on this, the following Friday)

Well, it seems that nobody but me got any sleep Saturday night. I heard Mom and Dad say to Grandma and our friend that they had to adjust my humidifier settings last night, including turning it up and turning on the heater. There is something about the dry desert air and we will have to be sure not to skip any more nebulizers no matter what.

We had to check out of the hotel to get to our time share today, so Mom and Dad packed; our friend went to get breakfast for the big people, and Grandma tried to feed me my breakfast in the car seat. Hehe -- I wouldn't eat. She'll learn. It took a long time -- we had a lot of bags and most of them were mine. Mom keeps saying we'll have fewer bags when we leave, but I'm not sure. The first thing Dad did at lunch was buy something called "Klingon Blood Wine" and it looked heavy to me.

So, round about lunch time we went to someplace called "Quarks" (and Dad bought the wine next door). We didn't yet have a stroller, so I got to ride in the Baby Bjorn with Daddy. It was nicer than trotting along in the car seat yesterday. Anyway, while the big people were talking, someone named "Roggle" who called himself a "Ferengi" came to see me. He said he knew all about tracheostomies and that they had them sometimes on Ferengenar too. He let me take my picture with him. But then, something weird happened. Mom and Dad didn't feed me on time. And they weren't just a little bit late either. They were a lot late, according to my stomach. I tried to tell them, but no one listened. Not Mom, Dad, Grandma, or our friend. I didn't know what to do! Finally, Mom looked at me and said, "are you hungry?" And then she opened a jar of sweet potatoes. Sweet potatoes? By mouth? Where was my tube of formula? Well, my tummy was so empty I figured this would do until they found out where the forumla was packed, so I opened my mouth. Strangely enough, it wasn't so bad this time, and it did make my tummy feel better. So I ate 1/2 a jar. Then Mom and Dad and Grandma went upstairs to someplace called "Star Trek" and our friend and I walked around. I liked the flashing lights a lot. But then something weird happened again. They still didn't feed me. After a few hours, we went back to Quarks and I asked to eat again, and I almost finished the jar. Everyone seemed very impressed, but then they FINALLY gave me my formula.

Then some lady called a "Klingon" came around and asked if she was my first "interspecies communication." Dad said no, I had already talked to a Ferengi, and she made some rude remarks about that. But we took our picture together anyway.

Then Dad and Mom and I went upstairs to the bridge of the Enterprise D while Grandma and our friend played the slots. I got my picture taken in the Captain's chair, and it was fun. Everyone said I was so cute.

Something else was happening in Vegas -- every where I went, I seemed to attract some admirers. I thought everyone would want to talk to me, so I smiled all the time, and sure enough, everyone wants to talk to ME! (And why not, right?)

I was also keeping a secret from everybody. My bottom two teeth had come in, and no one knew. Grandma suspected on the plane when I bit on her finger, but it was my secret, and I did it without ever crying. (Although when Mom hit my tooth at Quarks with the spoon I cried.) Now Dad says I have to learn not to bet my teeth. I'm not sure what that means, but I'd better not do it.

After that, we went to the time share. It was a bit smaller than they'd hoped, but it seemed nice. Mom and Dad went to the store, and I had a bath. Then I cried for my parents. They came back, and Mom said I was wired for sound. I told her I wasn't going to go to sleep at all, no sir, not at ... don't rock me ... help ... zzzzzzzzzzzzzzz.

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Michael's Travel Journal, or The Vacation According to Michael

Originally Published February 28, 2008

Michael's travel Journal, Day 1: Saturday (transcribed on this the following Thursday).

Mom and Dad got me up REALLY early on Saturday. It seems like the very first time that I got up AFTER Mom and Dad. To make it even weirder, they didn't even change me out of my PJs. The last time this happened, we ended up at the hospital, and it HURT. But this time, the car turned the other way, and we went someplace called the "airport". Mom and Dad seemed a bit anxious about what was going to happen to all those bags we were taking with us (there were so many), but a nice lady at the counter took them and said there was no problem. We had to walk through some funny place where they took my carseat and Daddy had to carry me, and they asked a lot of questions about my suction machine, but we had no problems. They took Grandma away for awhile to look at something with her metal knees, but they didn't take Mom away and ask her about her metal spine, so that was good.

In the airport, I finished my tube feed, then quickly threw up. On the airplane (we got to board first) I slept and refused to eat and generally acted like my good sweet self. Mom had me out of the chair for awhile, and you wouldn't believe how many people were on the plane -- more people than I think I've ever seen before. There was a nice man next to Mom who talked to me and talked to Mom about my trach tube. It was fun, but it was NOTHING compared to the airport where we landed. I've never SEEN such colors and people and signs and there were these SOUNDS. I couldn't figure out where to look first. Look at that, Dad! Look here! What's that? WOW! Mom and Nanny Tracie got our bags, then Dad and Nanny Tracie got the van and came back to pick up Mom, me and Grandma. Mom said I was HEAVY because Dad took the carseat with him and took forever to come back. But, I wore my cool sunglasses, and everyone smiled at me.

Things got a little rougher at our hotel that night. We got the formula delivered just fine, and we picked up extra diapers and stuff, and I was so tired when we went out to dinner. We tried to go to Mom and Dad's favorite mexican restaurant in the Luxor, but it closed two weeks ago. So we walked around the floor, and the COLORS -- once again, I hardly knew where to look. But I was so TIRED. I would sleep for five minutes, but then I'd wake up to look around. So, Mom and Dad and Grandma and Tracie took me to someplace called the Miracle Mile at Planet Hollywood where there was another mexican place. This place served the fastest food you'd ever want to see.

Once again, I fooled around with my food and wouldn't eat, but I had so much fun looking around. By the time we got home to the hotel, it was well after midnight, I know. Strangely enough, Mom kept saying it was only 9PM. I just know she was wrong about that. B y the time we got there, I was so wired that I refused to sleep and told Mom I was NOT going to go to slezzzzzzzzzzzzz. (5 seconds flat)

But, the night was pretty bad. I had a lot of coughing spells and my O2 monitor was going nuts (as usual), so Mom and Dad were up most of the night with nebulizers and holding me and just watching the monitor insist that my O2 levels were only 85. (But when we reset the monitor, it would say 97 for a few seconds, like magic, it just wouldn't stay that way.)

I tried to get up when my tummy said "breakfast" but it was still dark, and I was still tired. It was confusing, but Mom came over and said, "Go back to sleep; it isn't morning yet." So I did, and that was the end of my first day of vacation.

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It's Vegas, Baby!

Originally Published February 26, 2008

Greetings from Vegas! We tried to download pictures, but Michael left the camera cable in Virginia, so no luck there. Michael wants to show you his pictures of him with the Ferengi, and him with the Klingon, with him on the bridge of the Enterprise in the captain's chair, and him in the Venice canal, but not today.

Michael has adjusted well to the time difference, after only one 3AM hunger attack on our first night here. In fact, Michael is having an UNBELIEVABLE trip. I don't know if it's the dry desert air, or if it's the fact that everything is new, but he is like a whole new kid. The baby that viewed every meal as a boxing match is now chowing stage 2 baby food like it's going out of style. Instead of struggling to get in one pack on his very best day, he's now eating almost one every meal (other than breakfast, which is dramatically improved, but still lags behind the rest of the meals). We've not been pushing the bottle, because we are so thrilled with his desire to eat that we are taking all victories without question. This is day 3 of Michael demanding (and being allowed to refuse) solid food.

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More Coverage Problems -- Originally Published February 21, 2008

When it rains, it pours. Adam and I were just beginning to decide that this feeding issue is getting a bit out of hand, and we need more professional help then we are currently finding ... with all the time, expenses and potential heartbreak that could bring ... when out of the blue the insurance company calls. Our night nurses have not been recertified, and as of 2/26, we are on our own.

Well, not exactly. We've finally been approved for a nursing program on Medicaid, but Medicaid wages are a fraction of the insurance payments. The nursing agency has some serious doubts about whether they will be able to staff Michael's nights on Medicaid wages, so we might, or might not, be on our own. Obviously we need to appeal this decision, but it is hard to think about that again. One can hope that the nurses will come anyway, but who can blame them for going where they will be paid the most? And, if we don't appeal, aren't we giving up in the face of a significant injustice?

Let's just hope that we really are only 2 months away from trach removal, and that this is a short time problem. I know I've said to many of you that I refuse to get my hopes up, only to be crushed in April if they say, "No," but it is hard not to wish, and hope, and dream that the end is in sight.

Well, we're off to Vegas on Saturday, before the sun rises, if the weather holds. (Great lyrics from the song by the Indigo Girls, "Wood Song".) Wish us well.

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More Good News/Bad News -- Originally Published February 16, 2008

So many people ask me every day, "How is Michael. Is he getting better?" We often find ourselves at a loss on how to answer that question, because ... well, because its COMPLICATED! It really is "two steps forward, one step back." Or, as we like to laugh about it, "Good news, bad news." Let me give you a snapshot.

Good news -- Michael has learned to sit up all by himself.
Bad news -- we have pretty much confirmed that he has a small, pinhead size fistula (hole) in his palate where the soft and hard palates transition.

Good news -- Michael now loves his bottle and wants to suck on it all the time.
Bad news -- Michael still won't swallow, and all the milk runs down the front of him.

Good news -- we've got meal times down to "about an hour."
Bad news -- Michael tries to throw up at least twice at every meal.

Good news -- Michael is learning sign language. He said, "Daddy" today, one day after we first showed him the sign.
Bad news -- Michael developed his own sign first. We think it means, "help me I can't breathe." Or possibly, "Get this (*&^ Passy-Muir Valve OFF me!" (He uses it in both cases.)

Good news -- Michael loves the cats and the cats tolerate Michael.
Bad news -- the cats are so desperate for attention that they will allow Michael to pound on their heads and kick them because it is the closest thing to a good pet they've seen in weeks.

Good news -- Michael is up to half an hour on his PMV, with regularity.
Bad news -- he only does it when Bunnytown is on.

Good news -- Bunnytown is the least offensive children's show on TV.
Bad news -- there are only 8 episodes.

Good news -- Michael has started "helping" getting his clothes on.
Bad news -- Michael likes to put both legs in the same side of the pants.

Good news -- Michael likes to help wipe his face off at meals.
Bad news -- he doesn't use a cloth.

Good news -- Michael loves to talk and make sounds.
Bad news -- he won't do it when the PMV is on.

Good news -- Michael's O2 levels are very good when he is on his PMV.
Bad news -- Michael doesn't seem to be able to breathe during the few seconds his trach is removed when we change it each week.

Good news -- our insurance company is very generous in the amount of "HME" valves it lets us have each month (the covers for his trach that let him be free from his friend "blue hose").
Bad news -- our medical supply company is chronically backordered, so we no longer get what we order.

Good news -- Michael is really smart and has decided that he is going to focus on learning to talk.
Bad news -- he still has that trach, and we wish he would have focused on learning to crawl first!

Good news -- Michael is so focused on communication that he needs to learn sign language before he invents his own language.
Bad news -- our favorite sign language for kids book focuses on food as a motivating factor. (Don't worry, we're working around that just fine.)

Now, to wrap up some long overdue things. The surprise "special thanks" this week goes to ... Aunt Eve. (I can here it now. "Me, what did I do? I haven't even spoken to them since Christmas!) Well, Christmas it was, Aunt Eve. The farm you and the Uncle bought has proven to be this month's most-favorite toy. I think of you every time the "spotted cow goes moo, and horse is brown and neighs." But, it isn't about me, any more then it was about my sister Kim when I sent her kids drums for Christmas. It's about the kids.

As soon as we get back from Las Vegas, we have PLANS that we haven't told anybody (even the people who need to know). We think Michael made great strides when he met friend his little friend who is a few months older, so we are hoping to schedule some play dates with thatfriend again, and with another little boy "N" who also has a trach (now that neither "N" or Michael have any tests planned for March!)

Last -- best wishes to friend "N" on getting good sleep test results back. We're pulling for ya, kid!

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Is This Real Progress? -- Originally Published February 13, 2008

Well, cross your fingers. Michael seems to be making some real steps forward in the past few days. As is almost always the case, some of these will prove to be false alarms (which we are sadly getting used to), but some of them are surely real.

In the evenings, with Daddy (and sometimes Mommy), Michael can get up to 1/2 an hour with his PMV. He is seldom happy, and often cries, but we were evaluated by a different speech therapist with experience in the area, with good news. She had planned (after hearing our struggles) to come in and tell us that he needed to put the valve AWAY and not use it for a few months (hard, given that he needs practice in anticipation of maybe having a cap soon for a decannulation test in April ...) BUT, after having seen him, she decided that he needs to wear the valve MORE, not less. He does struggle with it, and tenses up, and isn't happy, but he isn't suffering any physical harm. Hopefully he will soon calm down to engage with us when he wears the valve. Currently, he only calms down to Bunnytown or similar distraction. Maybe soon he will even take a sip or eat a spoonful with the valve, which hopefully will help with his swallowing difficulty.

Which brings us to eating. The ever-present struggle. This tube feeding is in many ways a bigger handicap then the trach is because it interferes with being able to take Michael out in the world in a normal way. We always have to plan around this huge obstacle about how to FEED him while we are out. So, we don't go out much, and we come back quickly.

I mentioned last time that meals were taking up to two hours. Well, we figured out how to hook up the feeding tube to a bag (a bag that came with the food pump that makes him throw up) that we hang on an IV pole, and it drips into Michael's stomach. While that is going on, we can try to feed Michael a bottle and his baby food, so he gets the association between eating by mouth and a full stomach. Plus -- Michael can't kick the tube anymore, we have our hands free, and the whole thing takes a lot less time. Minus -- the bag doesn't have an outlet for air like the tube does, and gassy Michael can back up the system until it runs out his nose if we don't watch him carefully enough. (So pleasant.)

BUT, it looks like the effort may be working. Michael was really fussy last night and couldn't stay asleep as his last meal time was approaching. (We often feed him in his sleep.) He threw his pacifier on the ground (forcefully) twice and started crying, while making "hungry" faces. So, in the spirit of infinite optimism, I grabbed a bottle and offered it to him. Amidst the tears, he grabbed it from my hand and shoved it in his mouth and began sucking. Now, he didn't do a very good job at it, and more than a little bit of it dripped out his mouth, but he wouldn't let me take it away until Daddy managed to drip enough food into his tube that the owies in his tummy went away. It looks like we are FINALLY beginning to make some strides.

I don't really think there will be huge strides in eating until the trach is gone, at which time either Michael will figure out this swallowing thing when the air pressure in his throat is restored, or ... he will increasingly get his calories from solid food, as will be age appropriate for him by then. I think this is still a long road, as we have seen Michael grab for bottles before to have it amount to nothing after one small burst of fun. But, having him ask for a bottle when he was clearly hungry -- now that sounds like real progress.

Well, out of space again. Love to you all.

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Not Much Has Changed -- Originally Published February 11, 2008

I know it has been awhile since we last posted anything. You can file this under the "not much has happened" category. We're still trying new ways every week to get Michael to eat. Mealtimes have begun taking up to two hours -- 1/2 an hour to fight over the bottle or cup, 1/2 an hour for solid foods, and then (approximately) an hour to get the milk into his stomach by tube when he just wants to go (play/sleep, etc.) (Tube feeding only works when the recipient is calm and relaxed!) When you consider that he eats roughly every 4 hours during the daytime, it doesn't leave much time for anything else.

Nonetheless, he is a champion sitter, now, so long as he isn't on the couch. He thinks Daddy is the single coolest person in the entire Universe. Sam the cat and Michael are fast becoming best buddies, and even cool Chip came up and head-butted Michael when he was crying the other day. Dolly still sleeps in his room all the time. (Not sure if she is watching the baby or wishing it was still HER room!)

He's looking bigger, but not much else has changed.

Oh -- PS -- apparently, per my email, I have just been named the beneficiary in a will and will receive over $9 million, AND I have won 850,000 pound sterling in an on-line email lottery. Ain't email grand? ((What's on YOUR email this morning?))

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A Little Under the Weather -- Originally Published January 26, 2008

Well, I promised an update, so here it is. We were re-certified for 8 hours of nursing care for the next month. Between that and the nanny ... I think we're going to be okay. It is a credit to Michael that the doctor thinks he is well enough to get along without a licensed nursing caregiver during the days.

In the meantime, Michael is not feeling well today. He's running a fever and has an upset stomach. This makes a 100% record -- if Adam goes out of town for a weekend, Michael gets sick. Actually, I don't think he is sick, per se. I think he is reacting to yesterday's flu vaccine (which was the worst thing in the world ever, according to Mr. Drama). I actually saw signs of "remembered pain" in Michael yesterday, which was fun to see, even though the overall experience was not fun. The shot was long over, and Michael kept touching his leg, turning to me, and THEN turning on the waterworks. A plea for attention? Possibly. Remembering the owie? I think so. (It doesn't help that Michael figured out what was coming before they even gave him the shot, and he was trying to squirm off the table and kick the nurse away when the needle went into his leg.)

Last Thursday, Michael went to the "follow along clinic" at the hospital so they could "evaluate" him. I've canceled this appointment before, and I had grave doubts as to whether it was worth anyone's time. We already know where Michael is developmentally because of Early Intervention and the pediatrician. He's basically fine -- a little ahead in some areas, and slightly behind in his muscle tone. We've been told on several fronts that there is nothing of concern. So, Adam and Nanny take Michael .... the hospital folks throw some toys on the table, set him in Nanny's lap, and have him facing at least three people he doesn't know, and expect him to play. He basically refused and clung to Nanny. He is, after all, 7 months old and is developing stranger-anxiety. They then put him on the floor and told him to roll over. He said "No thanks, I'm fine where I am." They were pleased by the way he can prop himself up on his arms, but in general they were "very concerned" about his developmental delay. He doesn't, they say, grab toys or play with his feet, and he is quite behind. Hah! Adam and Nanny said -- you should see him at the house!

I don't mean to disparage the nice folks at the hospital, but where is the accomodation for stranger-anxiety -- a normal stage of development? If they can't find a way to control for that, how will any child test "normal"? Needless to say, we don't believe a word of it. I was thinking, this morning when Micahel was shoving his foot near his mouth in the high chair, that it sure was a shame he didn't know where his foot was ... and when he grabbed Tigger and bit his nose, I was thinking it was a shame that Michael never grabbed toys. Oh well, c'est la vie, y'all.

Anyway, we're sitting around watching a little Mickey Mouse Clubhouse this morning, and we don't have energy for much more. Even playing with the super-cool singing stage is half hearted. I'm sure we'll get some more playing time in, but it will probably be a low-key day. His secretions are up today, too, so it is hard to get anything else done with all the suctioning. Heck of a way to celebrate our first official day when no day nurses are required, eh? (Did I mention that Michael always picks the weekends where there are no nurses to get sick? He'd better stop that now!)

Well, that's about it. Gotta go suction out Mr. Gurgles.

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Keep Your Fingers Crossed -- Originally Published January 25, 2008

Well, keep your fingers crossed. Today is our last day of nursing care under the current certification. The doctor has indicated that the dayshift nurses are no longer necessary, but then he apparently wrote an order for 8 hours, AND and order for 16 hours, to the insurance company. They are telling us that because of the two orders, and the difficulty of reaching the doctor live (he was on call at the hospital this week), we have no answer on recertification. We have no idea what will happen tomorrow, or even tonight for that matter.

We will be applying for a new Medicaid program that should help us in the event that we get into this situation again, but right now ... we wait. In the meantime, Adam has flown to St. Louis for his grandfather's funeral, and Michael and I are on our own this weekend. We have friends standing by to help, and some of my family are planning to drive down Saturday evening just in case, because the doctor has confirmed that we are still supposed to keep an eye on Michael all night long. We thought we would be able to use our new oxygen monitor so we could sleep, but this one seems to be worse than the old one. It says his O2 levels are between 80 and 92 almost all night long, but that clearly isn't right. When you look at him, he is pink and fine.

Well, the best we can do is assume the worst and move on. We know you are pulling for us.

Love, Megan, Adam and Michael

PS -- we'll keep you posted as best as we can.

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Another Daddy Update -- Originally Published January 21, 2008

Greetings all!! This is another Daddy update. Since Daddy updates are always sponsored by letters, this one is brought to you by the letter Y as in why oh why oh why. The last week has been very eventful. Since Michael is healing so wonderfully the pediatrician has set up a schedule to get Michael back on track for his 6 month vaccinations (Michael looovvvves needles).
Michael also got his first feel of snow while out for a doctor’s appointment. Michael does not like snow one bit. He thinks that snow is just too cold and doesn’t like how it oozes on him as it melts. After a few seconds Michael was giving serious consideration of going to live with Grandma and Grandpa in Florida until it warms up here in Virginia.

Michael also had an appointment with the million-dollars-an-hour speech therapist. She had requested that we bring all the feeding stuff with us so that she could see what Michael is and is not capable of. When we got there she wanted to start Michael off with some stage one baby food. He took to this right away. He ate about 4 spoonfuls and was just smiling like he was having the time of his life. The therapist then wanted to go the thickened formula by bottle. Again Michael took to this like a champ. He did so well that the therapist wanted to see how well he did with a normal bottle. Dad thought this was just going to throw Michael over the edge, as it has been virtually impossible to get Michael to take anything. Well….. He did just fine. He drank about 1 ounce for the therapist. During the bottle feedings the therapist noted that Michael could suck just fine but he did have some problems with the swallowing. From the brief evaluation she could not determine exactly why Michael had difficulty swallowing but she did say that it was not something to become overly worried about. To test his swallowing, the therapist took an open cup and basically poured half an ounce down Michael's throat. Michael loved this and drank all of he was given and smiled at the therapist and asked for more. The therapist said that Michael was doing wonderfully and that it would be a good idea to get him started on a sippy cup. Daddy was very glad to hear this and was excited that we had something to work towards. At the next meal Daddy tried to feed Michael like the therapist had done. Michael would have none of it and cried all the way through his next feeding. Why oh Why oh Why. Over the course of the next couple of days Michael has started to eat more but has still not eaten like he did for the therapist

Well that is the highlights from last week. We can only hope that things continue to progress and Michael continues to eat better in the days to come.

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The Sound of a Child-- Originally Published January 13, 2008

I try not to post two entries over the weekend because I know a lot of you check only on weekdays. But, this is worth an entry, so if you are reading this on Monday morning, be sure to start with yesterday's entry and read all the exciting things that have been happening!

Today was a great day. Not only did Michael get to go to a store for the first time (Toys R Us, of course!), but he also made a breakthrough on his passy-muir valve. We actually heard Michael's voice today (he was crying). It didn't last long, but it did happen.

Special thanks today go to Melissa P for her advice on the valve. Melissa -- because of your suggestions on waiting for the coughing spell to end, we actually took a big step forward this afternoon.

Nothing is so beautiful as the sound of a child -- no matter what they are saying.

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A Plan, A Plan! -- Originally Published January 12, 2008

A lot has happened since our last posting. It's hard to know where to begin.

On Thursday, we went to see Dr. Pulmonologist. He took a look at Michael's palate, asked a lot of questions, and pronounced himself, "very pleased" at Michael's condition and progress. The next step is working toward decannulation. (Decannulation = getting the trach tube out.) Yep. That's right. We have a plan. It's a fuzzy one, and a lot depends on Michael, but we have a plan.

Basically, we go back to see Dr. Pulm in March, and we have to see the pediatric ENT. We already had one scope of Alex's airway (remember the tiny camera that attacked Michael and Big Bird the day of his trach upsize? That was it.) Nothing abnormal appeared on that test, so what is left is for a bronchoscopy at the hospital, and a 24-48 hour hospital stay to observe Michael's breathing when his trach is plugged. Then, if all goes well (O2 levels stay up, CO2 levels stay down), the tube comes out. But, in order to get to those two tests done, two things have to happen. First, RSV season needs to end because they don't want to put Michael into the hospital with a bunch of really sick and contagious kids (like the ones in the PICU right now). Second, Michael needs to show Dr. Pulm that he can tolerate having his trach capped, by using his Passy-Muir valve (aka speaking and swallowing valve). The current goal is to have Michael in the hospital sometime in April.

Right now, Michael is not tolerant of the valve at all, although he no longer gets mad when we come near him with it. It's a tough thing to learn -- breathe in through your trach, and out through your mouth. A lot of things have to go right, including conscious thought and sufficient airway. Michael can already do quite a bit of babbling when he really tries, so the airway should be sufficient. Now the question is how do we get this kid on the valve? Well, any way we can, I suppose.

If things don't work well with the valve, we may have some other options. It is often the case that kids get smaller trachs as part of the weaning process, but with Michael's copious secretions, a smaller trach seems like a bad idea all around, everyone thinks.

As you know, a trach is a tube stuck in an airway, so for a kid to breath *anyway* with that thing in the way, is a tough job. He actually has to work harder than any of us would without the tube, in order to get the tube taken out. This is not an easy thing we are asking him to do, but we really think he will find a way.

Also, we are cleared to take Michael on vacation at the end of February. (Las Vegas, here we come!!!!!!!!) The doc had no objection ... if you can believe it! It's going to be a blast to actually be able to do something that feels a little like a normal family. (Or as normal as you can get with two medical bags, a feeding tube, and a handicapped parking sticker.) With Michael's luck (both the good luck kind and his tendency to have super-rare syndromes and super-rare surgical complications to trach tube surgery) we should have him play a slot machine or too. We could win mighty big....

As far as feeding -- Michael is doing a fabulous job with baby foods. He loves green beans, sweet peas, and squash. He even asked for more peas at dinner tonight. He hates thickened formula, though, no matter how thick it is. when you spoon it in. Super-thick formula mixed with squash -- that's okay by spoon. Squash watered down and put in a bottle -- that's ... sort of ... maybe ... possibly ... okay if it has to be ... if you don't pay attention to the temper tantrum. But, it's temper, not fear like it is with the formula. He managed about an ounce today by bottle ... with a lot of struggle. Tomorrow we try squash watered down with formula. Then we go to the store, because we are out of squash!

And, we are out of space! Until next time ... us three.

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Eating is Such a Natural Thing, You'd Think -- Originally Published January 8, 2008

Yesterday's posting was chock full of frustration. I guess that was obvious. Believe me, your suggestions are welcome, and I hope I didn’t imply otherwise. Eating is such a natural thing for most of us, that it is hard for me to believe that we might not win this fight, and I imagine that it is hard for you to believe that as well.

Michael continues to be a champion sweet pea eater, although he still wishes we wouldn’t. He’s agreed to take the bottle back in his mouth, but he is wary and afraid that it will squirt liquid at him. We’ve tried thickening the formula, but we’re having a hard time getting the consistency right to the point where he will swallow but it still comes through the bottle. (Pharmacy sold us the wrong concentration of thickener, and we’re having to work that out, too. Hopefully they will take it back, but it is now an open box ….) The bottle itself still seems to be a success, as far as Michael's preferences, but he can’t use it well sitting upright, as it gets in the way of his trach. I hate to make too many changes on him, but we might need to switch him up again.

Not much is new since yesterday. We’ll keep you posted.

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Running Out of Ideas -- Originally Published January 7, 2008

Nothing new to report. We thought we had a bit of a breakthrough, but we let our hearts rule our heads, and things are now worse then they were before. But, in response to the many questions we have received in the past week, we thought you might appreciate a bit more information on Michael's feeding problems. We do like hearing suggestions from everyone, so we've also discussed some of the more common suggestions below and how they have worked for us. That way we can all be on the same page with our creativity.

1. Michael has almost no sense of smell, which dramatically affects his ability to taste. While it might seem as if we just gave Michael something "good to taste" he would be motivated. But, try this for one meal: eat the entire meal while breathing through your mouth. Even better, have someone prepare food without telling you what it is, then eat the first few bites with your eyes closed. Hard to tell what you are eating, isn't it? We had a minor breakthrough with Michael by switching bottles, to the point where we could struggle to get Michael through 1/2 an ounce over 1/2 an hour without spitting it out. Then we broke down and tried juice in case we were wrong about Michael's tasting ability. The juice was an unmitigated disaster -- it terrified him because it was so thin and hard to control. Taste was a non-issue. And now, consequently, we are not even sure if Michael will continue to allow that successful bottle in his mouth anymore.

2. Hunger is an obstacle, not a motivator. As hard as it is to believe, kids with physiological feeding issues (such as swallowing problems or an inability to coordinate "suck, swallow, breathe) are capable of starving themselves to death. Tube fed babies also have issues because the connection between swallowing and a full belly is broken, and instinct no longer functions properly.

3. Yes, we have forced him. We aren't proud of this, and we have been advised against doing it, but we have done it anyway. We have cradled him in our arms, immobilized his head, arms, and legs, and forced the bottle into his mouth. Simply forcing him to swallow once or twice has not improved the situation one iota.

4. Yes, we know about the cheek stroke and neck stroke. No help.

5. Michael will eat green beans and sweet peas now, and he is getting better at it every day, and we are very, very pleased with this. At least we know that Michael will not have the tube for the rest of his life. Once he is old enough to get all his nutrition from solid foods, we should be able to get rid of the tube.

6. As shocking as it is to learn, some babies never gain the ability to drink from a bottle. If Michael had had more success before surgery, we might have more certainty that he will be able to drink a bottle at some time. However, we do need to accept that there is a possibility he will be one of the babies that never takes a bottle.

7. Our current instructions from the doctor are that Michael will have his feeding tube for a minimum of 6 months. Our current worst-case scenario is that Michael will have his feeding tube until 6 months after his trach tube is removed. And, no, we have no idea when that will be either.

Well, gotta run. Until next time.

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Good News/Bad News -- Originally Published January 3, 2008

Slowly we crawl, millimeter by millimeter, back from the abyss.

As you might have guessed, we are talking about Michael's eating ability. This is one of those good news/bad news scenarios.

Good news: Michael can suck. Bad news: He doesn't want to and gets really pissed off when he accidentally does.

Good news: Michael can eat green beans. Bad news: Michael has to eat green beans whether he wants to or not. Other than his monumental temper and his desire to not eat ANYTHING, Michael seems fairly typical in his green-bean-eating ability.

Good news: Michael can swallow. Bad news: Michael only swallows his own saliva and sometimes milk injected with a syringe into his mouth. Heaven help us all if the bottle squirts into his mouth or if he pukes and gets a mouthful.

Good news: Michael has a trach and the world is happy that we cannot hear his temper tantrums. Bad news: Same as good news.

Not much to report, other than we do have a STUBBORN child. This too shall pass.

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Celebration Time, Come on! -- Originally Published December 28, 2007

JINGLE BELLS, JINGLE BELLS, JINGLE ALL THE WAY! OH WHAT FUN TO CELEBRATE OUR PALATE REPAIR TODAY!

We went to see Dr. Plastic Surgeon today, and Michael is doing fabulously! His repair looks beautiful, and Dr. Plastic Surgeon think the chances of fistulas (holes) developing is very low. The best part of all, says Michael, is that the restraints are gone. Michael can suck his thumb again and jam anything he can reach into his mouth! Yay!

We're allowed to start oral feedings, and Michael has no more restrictions. He can even puke again, if he wants. (ha, ha.) This means we can work our way back to the old, old feeding schedule that Michael liked, which will make him very happy.

HAPPY NEW YEAR! I know we'll be having one. We're off to celebrate now.

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Merry Christmas! -- Originally Published December 26, 2007

MERRY CHRISTMAS! Michael has had a great Christmas, but first we'll finish the story of the hospital.

One interesting thing about the oxygen monitor in the hospital -- once we were in the ward, it seemed to go nuts. It kept sounding off, and we couldn't get his O2 levels up. In the PACU we were holding him upright with his head on our shoulder so the blood would drain out, not back. In the ward, though, he seemed to breathe better on the bed. Even the resident came in and checked out Michael to make sure he was okay. This made no sense that it changed, and if it didn't fix itself, we weren't leaving on Friday ... so Mom did something she didn't have the nerve to do the last time we were in the hospital. She pulled off the O2 monitor, reversed it, put it back on, and put on a sock. Suddenly the O2 levels increased by at least 5 points and we didn't have a problem for the rest of the night.

Long story short, the night was long and hard. At 6 AM, Michael woke up from a short nap and seemed happier. He was thinking of grinning, and he even managed a small smile when Mommy tickled him. As one of Mommy's old friends said, "the tide always changes." For Michael, the tide changed at 6, and he began to improve from there. We were elegible for discharge by 8 AM, when Dr. Plastic Surgeon came by to take a look. We hung around because the doctor wrote an order for us to see the GI doc so we could be sure to get our feeding pump. (Unfortunately, the order was not specific, (written as a "consult") and the GI doc didn't know what we needed and it took a long time (5.5 hours) to get resolved. We ended the scenario by telling the social worker we were leaving and she had ten minutes to explain to us the consequences of our decision to take Michael out of the hospital without the discharge paperwork. Fortunately, they agreed and had everything wrapped up and the doctor over in ten minutes.) The pump was ordered and arrived the following Monday. In the meantime, we fed Michael over an hour by gravity. Now he gets his food over an hour by pump. (Oddly enough, the only two pukes he has had since surgery have been after pump feedings. Huh?)

Now, about Christmas -- Michael had a great time. He slept through most of the presents because we got a later start than he wanted, but he sure had a great time opening the gifts. The paper was a big hit, and he could rip it even with the arm restraints. When the fun got too much, the Bunnytown bunnies were there to help (thanks to a made from tv DVD that was a Christmas present from his cousin!) (Thank you!!!!!!)

We had the good fortune of Christmas lasting several days -- Saturday we exchanged presents with an aunt, uncle and some cousins, and on Christmas day with another uncle, and a grandma and a grandpa (and we had some fun gifts from the great-aunts and uncles and great-grandma, too!)

wanted to take a few lines to express our deepest thanks to everyone for your thoughts, prayers, and well-wishes during this hopeful yet difficult time. It seemed that every time we stumbled, there was a helping hand, and this has been going on for months. The past week has been a challenge, but there have been so many people on deck to make it easier. We had food from neighbors, and cooking from family, and company from the church, and blessings from everywhere. We could not ask for more in our wildest dreams. Special thanks to Michael's grandparents and to Pastor H___ for staying with us in the waiting room while the surgeons cut into our son (again). Special thanks to each of you for your notes on this carepage. And, perhaps most poignantly of all, special thanks to the parents of other children who have had this surgery -- all across the country -- who have counseled us and encouraged us and prepared us. We cannot imagine how to be prepared without you.

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