This blog is a chronology of our story and should not be used as the basis for medical treatment or diagnosis. From time to time, you will find links to other websites that we have found helpful, however we offer no guarantees as to the accuracy of these websites. At all times, please use your own good judgment and the advice of qualified medical physicians and specialists.

Here We Go -- Originally Published December 20, 2007

Wednesday, June 30, 2010

4:54 AM:

Here we go. We'll update when we can.

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Tomorrow is Surgery Day -- Originally Published December 19, 2007

Tuesday, June 29, 2010

Tomorrow is the big day -- surgery at 8AM. Michael is keeping things interesting as usual. Yesterday we confirmed that he was coughing up yellow mucous after every long sleep, including this morning. And, he threw up this morning, more than usual. A quick call to the doctor this morning was in order, and so far there is nothing to stop surgery. We are on watch for more thick mucous and for fevers, but so far so good. Michael is taking so many nebulizers and antibiotics right now that I can't imagine what kind of infection he could be brewing that has survived all this.

The hospital will call today at 1:30 for pre-op check-in stuff. It looks like things are really going to happen.

By this time tomorrow, Michael's wait should be over -- ours, however, will just be beginning. :-)

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Mom Knows Best -- Originally Published December 15, 2007

Monday, June 28, 2010

Today is the first day of the pre-op antibiotics. Last Thursday we saw the pulmonologist for our pre-op checkup with them. On Tuesday, we start pre-op nebulizers. I guess we really are going forward -- it is starting to feel pretty real.

We also had an interesting discussion with the pulmonologist last Thursday, too. We were discussing pre-op preparation (medicines, etc.), and they wanted to have Michael on a low-stress dose of steriods by the anesthesiologist "because he has had systemic steroids before." He has? I didn't remember that, and neither did Daddy. We grilled the doctor -- "which medicines were steroids?" He mentioned a few I KNOW Michael had never had. He was sure Michael had had them -- we were sure he hadn't. The closest we got to steroids was a discussion about what happened if Michael didn't kick the last infection on antibiotics alone. But, it was never necessary. They checked and checked the records. They checked his last hospital stay, too, but nothing. We get the feeling that they had him confused with another baby -- which is interesting because it means that despite being sick all of November, Michael was not as sick as they had remembered him being and in fact was substantially better off. (We even think that until their recollection was refreshed, they had thought Michael's stay in the hospital overnight for observation had been lung related and had been longer then the overnight that it was.)

None of this is very important except that it is encouraging to know that Michael is stronger than expected and has handled his infections better than the doctors' recollections or expectations. It is nice to know when things are going well. And, it is a good warning to us that if we want Michael's airway to be measured in the winter, we will need to remind them of all the reasons we think he is a good candidate for winter testing despite the greater risks of infection. (One of his doctors is not in favor of testing until spring, but the others have not said, "no" yet.) As tempting as it is to think that our kid is so cute and special that everyone remembers everything, he really is one of hundreds they see every week.

Michael continues to play the nap game. He will nap for some nurses and absolutely refuses to for the rookies. He plays them like a fiddle and tries to convince them he really isn't tired. He cries, they pick him up .... you know. For mom, at least, he tries a different tack. He beats himself on the head to stay awake -- crazy kid!

Anyway, in truth, Michael is not relaxed around some of the nurses, and it doesn't matter whether I am in the room or not. If he gives in to sleep, he jerks himself awake at the slightest sound or movement, which is exactly the opposite of what he does with the experienced nurses or in the evenings with us. It makes me think that post-op might be a napping nightmare if Michael's anxiety kicks in. We will all have a lot of work to do to keep him calm, cool and collected. We've asked his favorite nurse from home to stop by the hospital on Friday to say hi if she can. Maybe seeing her will make things better. And, there is a small chance that one of Michael's favorite NICU nurses will be his post-op nurse in the PICU. We're actually hoping so, but we'll have to see if the scheduling works out.

Well, all we can do is wait and hope that no illness gets in the way between now and Thursday!

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Revolving Nurses and Missed Medicine -- Originally Published December 10, 2007

Sunday, June 27, 2010

Just a quick note today. Michael had a great day -- he even took some nice long naps. A lot of this has to do with his favorite nurse, A____, who still works with us on Mondays. She is still by far his favorite, and he relaxes so much when she is in the house. He is generally a happy and patient baby, who likes to play with anyone, but the revolving door of nurses since A____ had to leave has left Michael a bit adrift. He no longer keeps to any particular schedule, and he refuses to stay asleep for long unless A____is in the room.

Today Michael accidentally missed a dose of his tummy medicine, and boy did we notice a difference. His stomach took forever to empty (don't ask how I know that), and he was burping back food immediately after he ate -- something he hasn't done in several days. I guess we know that the medicine is working! Now we just need to be sure he gets it before every big meal. While we are on the medicine, Michael can have almost all of his daytime meals on his old schedule, with only a little bit left over for a snack two hours later. (Without the medicine, the meals and the snacks were roughly the same size.)

I guess when the pre-op antibiotics start, we will be able to see how much of an issue they present to Michael's tummy. (Hopefully none!)

We're very late with our special thanks list. So, here goes -- special thanks to Megan's family who spent Thanksgiving with us (our first at our own home). It was a nice adventure, and we appreciate y'all finding your way around our kitchen to make all that great food. Special thanks, too, to Debbie C for bringing Maggianos for dinner last week (yum!). And last but not least, special thanks to the B____s for helping us get our very first live Christmas tree this weekend.

We can hardly wait to see everyone in the New Year!

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Getting Prepared -- Originally Published December 8, 2007

Saturday, June 26, 2010

We saw the doctor yesterday. Here is the result:

We will have pre-operative antiobiotics to help prevent Michael getting sick again. It will take about a week for Michael's stitches to heal, and after that, Michael can start a bottle. In the meantime, the surgeon will be working with our GI specialist to keep Michael's reflux under control. The good news is that one small upchuck a day is not a big deal (but a small upchuck for every meal is a big deal). AND, Michael can keep his pacifier immediately post-op. (Yay!!!!) He can keep it because it isn't too long and doesn't go far back in his mouth -- the exact reasons why the speech folks do not prefer it. (Oh, the irony.)

He will not be in restraints, per se, but he will be in little arm pads that won't let him bend his elbows and get things into his mouth. This is supposed to last about a week.

We will be going in the hospital on Thursday morning (at about 6:30) for an 8 (or 8:30, I have to look that up) surgery, and we are scheduled to be discharged some time the following day. Discharge (morning or afternoon, or if we have to stay) will depend on how Michael recovers, and the surgeons will make rounds more than once a day if necessary. If we don't get out on Friday, they will discharge over the weekend as appropriate, so we won't be stuck there just because it is the weekend.

I think that about sums up everything from the doctor.

On the pacifier front, we are getting by right now with half a kleenex stuck in the depression, and so far no wetness and no sign that it will easily come out. I think we'll probably move to a small piece of cloth, but so far the idea seems to be working. Thanks to everyone for your suggestions -- if this doesn't work, we'll give some of the other suggestions a try. We got lots of wonderful ideas from y'all, and I am chagrined that we didn't think of some of them ourselves!

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Our Pacifier Is a Health Hazard -- Originally Published December 7, 2007

Friday, June 25, 2010

Well, today is our day to see Dr. Plastic Surgeon. We'll keep you posted on what he says. But, in the meantime, I thought you all might like to know that we have a new reason to hate the dumb green pacifier.

Now, I understand that it is more anatomically appropriate for Michael's physiology -- the shape is longer and reaches his tongue, forcing more correct sucking motions than his favorites, and it is closer to the shape of the nipples he will be using after surgery. So, we do try during meals, but he can't hold it in by suck and needs to use his hands, and he isn't as coordinated with it as he is with the other one (and when he is tired, only the favorite will do). BUT, Michael accidentally discovered another downside to the device. That hole in the back where a finger can slip in also fits snugly over a trach tube when mommy's back is turned.

YES, you read that right. Michael was playing with the pacifier during a meal. I turned away to get the suction machine, and he had put the depressed part right over top of his trach. I thought it was odd that he had stopped making the raspy sound he makes when he breathes, and he looked scared but not yet panicking, so it took me a few more moments to react. After a few more heartbeats, I grabbed the pacifier and pulled it away from him, and he began gasping for air and sobbing. Poor little guy -- it was just like a passy-muir valve test! He really frightened himself. And the new lesson of the day -- NEVER LEAVE THE BABY ALONE WITH A GREEN PACIFIER!

And, the puzzle for the day for all of you with "fix it" brains, is this: how can I plug that hole without using something that will be unsafe? I could tape it, but Michael drools like a champ, and tape will not likely hold. The pacifier is rubbery-plastic, so there is no sewing anything to it. Staples are out of the question. What haven't I thought of?

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Rollovers -- Originally Published December 6, 2007

Thursday, June 24, 2010

We have no nurse today, so I need to make this quick. Michael's reflux seems to be in better control these days, but he is refusing to take a morning nap that is longer than 20 minutes. I'm beginning to suspect that it might be the new medication, but that seems a bit farfetched.

On the developmental side, Michael volitionally rolled himself from back to front yesterday morning, and he has recently learned "directional kicking". He thinks it is fun to make his feet hit things. And we thought feeding him through a tube was hard before!

Tomorrow is our pre-surgery appointment with the plastic surgeon, where we will hopefully learn the answer to questions about recovery time, new bottles, pacifiers, reflux and restraints.

One last request before the holidays -- Michael and I had to have two trees taken down because they were rotten. Unfortunately, after two weeks, we were only able to stack a portion of the wood on our woodpile, and much of it is still in the yard where the trees were cut down. If anyone has a teenager who would like a little extra cash or some pizza, we could use some help to get this task put to bed.

Best to all of you!

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When You Overinflate a Gtube -- Originally Published December 4, 2007

Wednesday, June 23, 2010

Well, a lot has happened since our last update.

First, we found what is probably a big contributing factor in Michael's reflux and puking. For reasons that are NO ONE's fault, Michael's G-button balloon was over-inflated. Let me explain what that is. The button in his stomach is held in place by a balloon that is filled with water. This balloon sits inside the stomach and so takes up space. It is supposed to have 5 cc's of water, and his had 7. Here is how we think it happened. Two Mondays ago, we checked the water in his balloon, and it was only 3 cc's. This was not the first time we had checked it, but it was the first time it read "light" on water. We checked it several times in a row to be sure we were getting the right result. (You check it by pushing a syringe into the end, which triggers a release of the water into the syringe. Sometimes the water doesn't want to come out, so you need to pull it. So it is always a good idea to release the water and put it back in a few times before adding any water.) Now we did this on the day we took him in to the doctor for his most recent illness, which is also about the time the reflux got worse.

The next Monday we (Mom and a different nurse) checked it again, with a 5 cc syringe, and 5 cc's of water came out. We lost a little bit putting it back because Michael started kicking.

Now yesterday we checked it again (Mom and the first nurse again). Again, only 3 ccs of water, but this time it was obvious that the syringe was sticking. We checked it three times, with the same answer. So, we added two ccs of water. But, neither of us felt quite right about it. To begin with, it seems odd to lose that much water in one week, and Michael cried when we put the water back in. So, we got a brand new 10 cc syringe, attached it, and 9 ccs of water came out along with some air. Yes, 9. We are probably lucky the balloon didn't rupture. Two ccs we had just put in, but that leaves 2 ccs of water unaccounted for unless we go back two weeks ... to about the time he got sick with his infection and started burping up more (from the antiobiotic and his infection). Was there an additional cause that we didn't know about because if the timing? It seems likely. This could explain the excess mucous and why the same amount of food used to fit in his stomach and now didn't.

We have not yet started the new tummy medication because we wanted to see if he would improve after the water in his balloon was set to the proper amount. So far, he has improved, but there are still problems. It could be that it will take time for irritation in his stomach to heal -- we're checking with the doctors on this to see when they want us to start the new medication, but we will eventually start it. In the meantime, Michael is still eating 10 times a day, but during the daytime half of the meals are larger (2/3 - 1/3). He feels better with this, but it is sometimes hard to get all the food into his stomach without irritating him on the bigger meals. There is still a lot of gas and burping, and some reflux, but 24 hours with no puking!

Today we also tried the passy-muir valve (speaking valve) with the speech therapist. Sorry to say that it didn't work. Michael tried to breathe but didn't seem to be able to at first. On subsequent attempts, he didn't turn red, but he was struggling to breathe. (His O2 levels were fine the entire time.) Each time, when we removed the valve, he gasped -- so we still have some issues to work through.

Now, for those of you reading to the END -- here is the BEST news of all. WE HAVE A NANNY! She seems like a perfect fit for our family -- right down to being part of the Big 10. Her name is Nanny, and she will be starting a few days before Michael's surgery. Thank you to everyone for your help and ideas.

Well, we are out of space on this update, so enjoy those holiday lights, everyone. They sure are pretty at night.

Megan, Adam and Michael.

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December 3, 2007

Tuesday, June 22, 2010

So far so good. Michael's emesis for the past 48 hours has only occurred when he coughs too hard and gags himself. There is nothing we can do about that -- it would happen to any of us. So, the good news is that we have found a feeding level that is successful in controlling the problem.

Bad news is that Michael still isn't taking too well to it. He won't sleep for more than 20 minutes at a time during the day because he isn't "full". We'll work on that this week and talk to the plastic surgeon on Friday to find out what the threshold really needs to be. What is considered "no puking" for a baby? How long after surgery will it take for the stitches to heal? We'll have answers soon.

In the meantime, Michael is off his Augmentin (antibiotic for his last bout of tracheitis). That should make him feel even better for awhile, but he will probably get it back in the week before surgery as a preventative. We'll have to check on that this Friday, too. Today he starts low doses of another antiobiotic that is supposed to help empty his stomach faster. vIt takes the place of the Grumpy Medicine. vWe'll have to see if it works, and if it does, is the cure worse than the disease?

We hope to have more good news to give you by the end of the week. vThanks to all of you for tuning in to the Michael-Saga. We miss and love all of you and cannot wait to see each of you in the New Year.

Megan, Adam, and Michael.

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December 2, 2007

Monday, June 21, 2010

Shortly after I posted the last update Michael gagged himself and threw up. So much for adjusting his food volume, eh? But, one emesis in 24 hours is better than 6, right? (Emesis = medical for "puke").

Thanks for all the video offers. Someone is out there looking for Bunnytown for us, but I have read my emails recently and have heard from a good authority that the show is too new to be on video yet. I hope our good authority figure is wrong, but she seldom is. Just to be clear, Bunnytown is truly MICHAEL's choice, not ours, but it is comparatively low on the parent-annoyance factor as far as kids programming goes. Mickey Mouse Playhouse isn't bad either, and Michael likes that one, too.
Does anyone have a Santa suit we could borrow? We're thinking that it would be fun to dress up Adam and take Michael's picture that way. That way we won't miss having his picture taken this year. If no one has one, we can rent one or probably buy one in the pre-Christmas sales. Buycostumes.com is a pretty good website, if y'all haven't checked it out yet.

For those of you who turned off the Washington/Hawaii game in the first quarter, you missed it. Hawaii is making a big comeback. Go 'Bows!

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December 1, 2007

Sunday, June 20, 2010

24 hours and no spit up. Good news. Michael hates the new feeding schedule. Bad news. He thinks he is hungry all the time. We're going to try to make every other meal a little bit bigger and the other meal a little smaller and see if that makes him happier.

Some of the nurses still seem to be a bit concerned that Michael was trying to eat too much, and the new food schedule is so much better. I couldn't disagree more. He is eating about as much food as he is supposed to have, based on his weight and based on he fact that he is eating higher-calorie food. The volume would be much, much greater if he were eating unfortified food. As far as eating every other hour goes, it really is not appropriate for his age. Plus, with the reflux, it is really limiting. He eats, which takes at least half an hour, and then he has to sit up (or stand) for at least half an hour. Then he gets at most an hour off before it all starts again.

It is frustrating for all of us, but AT LEAST we know that it possible to get him through a day with enough food and no puking. This means that we should be able to get a stable post-op situation for Michael. The wild cards that we haven't been able to work through so far are: what happens if he cries for an extended time and swallows a lot of air? What happens if he coughs a lot and gags himself? Both of these things happen to Michael with some frequency, and both could easily happen after surgery. Hopefully we can keep him calm and comfortable, but it will be a challenge.

The other challenge will be the arm restraints. We have read that they will be part of our lives nearly the entire day for 3 weeks. We still have to talk to the doctors about what they expect in this regard, so we don't know if what we are reading will apply to Michael's situation. Some kids can take their restraints off under close supervision, but it isn't likely that Michael will be able to. The kids that don't have to wear theirs are those that aren't likely to put things in their mouth. Michael, on the other hand, has his fist or one of his thumbs permanently inserted in mouth. He also chews his blankie. If he doesn't have artificial restraints, he will need parental ones.

Well, I need to wrap this up. Michael is thinking about waking up. He didn't take a morning nap, and his afternoon nap has been waaaaayyyy too long to bode well for a good bedtime. There is no nurse tonight, so we NEED a good sound sleep tonight (especially because we have to get up twice to feed him just for starters).

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November 30, 2007

Saturday, June 19, 2010

I know you all are curious, so here goes.

No more oral feeding. There is too much mucous and stuff going on, so no solid foods or bottles until after surgery.

No more Reglan/grumpy medicine/no sleep medicine. We talked it over with the doctor, and the little benefit it gives isn't worth the switch between Michael Jeckel and Baby Hyde. Poor Michael just cried himself to sleep a few minutes ago, and I hope by the time he wakes up tomorrow we have our smiling happy baby back. He laughed and played today, but it was laced with a lot of real tears and no nap worth mentioning. He dozed on the way to the doctor's office, and on the way home, but that is about it since this morning. He was so tired it was hard to watch, but he would not sleep. I had forgotten how much fun it was to rock him and feed him when he was on Reglan last time. It takes forever to get food into his stomach while he is crying and throwing himself around with fatigue. We'll try a new medicine on Monday, but that one might be just as bad. We'll have to see.

Speaking of feeding him, Michael is now eating ten times a day (up from five). Basically, this averages out to every two hours during the daytime and two times overnight. (Before it was four times during the day and once overnight.) We are venting his Gtube for a full five minutes before putting any liquid in the tube and we are feeding him half as much at each mealtime. Using this system we have reduced ourselves to only one liquid burp all day. (The one try at 150 ccs that I mentioned in the last posting was a failure in that it resulted in a post-meal spit up.)

It is frustrating, but necessary for the time being. Honestly, if Michael weren't going into surgery, this would be so much no big deal. As we discussed with the doctor, babies puke, and I can clean it up with the best of them. But, it is the surgery and the stitches we need to focus on now, and we need to have Michael demonstrate to us what his stomach tolerance is. Once we have this feeding schedule set and we go for awhile without spitups, we can try to increase his volume a bit and see what happens.

As far as the hospital goes, the GI doc and the Plastic Surgeon will be consulting. But, as far as we are understanding, Michael WILL be on a feeding pump immediately post-surgery, and we will be discharged with it. He will have to use it until the risk of damage to the cleft repair is over. We don't know what the settings will be -- it could be that the food is pushed in over 60 or 90 minutes a set number of times a day, or it could be what they call "continuous feeds" (meaning, I think, 3 hours on and 1 hour off the pump). Also, the continuous feed part could be at night only. At this point it is all up in the air.

The feel-good takeaway of this whole episode is that, per the doctors, we will have a whole different kid coming home from the hospital as far as eating and digestion is concerned. Everything is re-evaluated at that point. The pump is just a means to an end.

Surgery is the first step to progress and toward normalizing Michael's food intake. With a closed palate comes less air in the stomach and (at least eventually) the ability to eat by mouth. In the meantime, we are treading water and trying not to make waves all at the same time. This crazy feeding schedule is just a means to an end.

Oh, and thanks to y'all that have called and emailed about your baby videos/DVDs. We'll take 'em, with thanks! Michael may be off the grumpy medicine, but we are looking at a food pump, and there will be arm restraints after surgery. It's hard to play without your arms! Thank goodness he does seem to enjoy children's programming --at least some of it.

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November 30, 2007

Friday, June 18, 2010

Things are changing fast. We spoke to the GI doctor last night, and for the time being Michael is back on Reglan -- a drug we really hate. It makes him so grumpy and unable to sleep. Last time we were on this drug, Michael slept from evening to morning but did not sleep at all during the day. Already, with only two doses in him, the grumpies are coming out. He has been whining most of the morning and won't even fall asleep in Mom's lap. So far he is distractable by watching Mickey Mouse Clubhouse and Sesame Street, but I think the car ride to the doctor today will be a disaster.

The feeding every two hours has decreased the vomit, but it hasn't made Michael very happy. He thinks he is hungry all the time (and the Reglan doesn't help). The doctor has indicated that a feeding pump immediately post-op is likely. As I understand it, this means Michael will be on a machine 3 out of every 4 hours, which will be very hard for an active little guy. We'll learn more today. I have a feeling that Baby Einstein and Sesame Street will become a staple for awhile, since he won't be allowed to do much else. I keep thinking this will make post-op even harder than it would otherwise be, but we will do what we have to.

We also spoke to the Plastic Surgeon's office again. They are not going to cancel surgery at this point, even in the face of a daunting reflux problem, but we are all on notice that the success of the surgery is at risk and we need to do all we can to minimize the potential risk. It is a vicious circle -- the antibiotics are contributing to the stomach upset, but the antibiotics are necessary for surgery. The air in Michael stomach is causing some of the vomiting that is putting surgery at risk, but if we have the surgery, some of the air will go away because the palate will be closed and the air won't be able to go that way anymore. The G-tube is undoubtedly causing some irritation, but the first step to getting rid of the G-tube is getting Michael's swallow fixed, which means his palate has to be closed .... you see the nested circles.

We'll post more after we talk to Doctor GI. At the moment, we are about to try to feed Michael a full meal (instead of the 1/2 meals he has been getting since yesterday) to see if the Grumpy Medicine has had any affect.

Assuming, for the moment, that we will go down the road of keeping Michael on this Grumpy/No Sleep Medicine, and we have to have a feeding pump .... then MOM and DAD will need some help with TV programs that won't drive us NUTS to watch over and over. There is only so much of Elmo's friend Mr. Noodle that I can STAND in a given day. For awhile we can see if holiday cartoons will work, but if y'all have DVDs of fun TV shows you wouldn't mind lending us for a few weeks, I promise we'll give them back as soon as Michael is back to his usual smiling self.

More to come -- maybe even later today.

PS -- does anyone know if they sell videos or DVDs of "Bunnytown," one of the programs on Disney Playhouse? If someone has a few moments to search the internet for me, I would really appreciate it. Michael would like some DVDs of "Bunnytown" for Christmas.

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November 29, 2007

Thursday, June 17, 2010

Well, this one is up to you and the power that controls the universe. We've confirmed something that we had begun to suspect for the past few days: If we can't get Michael's reflux under control, there will be no surgery this coming month. The stitches are dissolvable, and stomach acid will dissolve them. You get the drift.

As you can imagine, this is hard news. We have tried all but the most desperate methods. Now, we are off to see the GI specialist again tomorrow, and in order to save the surgery date, we may have to put Michael on a feeding pump with an extra valve in it to let air out of Michael's stomach. We've talked about this before and said, "no" because it took us so long to get a fairly wireless kid, but now we may have no choice. In the meantime, we are trying to move Michael to eating every two hours instead of every four to see if even THAT helps. (Can you imagine feeding a 5 month old baby every two hours???) If it weren't for surgery, this would not be an issue because Michael is gaining weight like a champ. So, a problem that shouldn't be a problem now IS a problem. It figures.

At times like this, we try to remember the adage from one of our favorite fiction writers, "The world will go as it will, and not as you or I would have it." Acceptance, though, is hard, and if we do have to postpone surgery for a few months, we will be crushed.

Please pray for us.

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November 28, 2007

Wednesday, June 16, 2010

Actually, TODAY was the day Michael got his bigger trach. Dr. K___, the pulmonologist, decided to wait one day so that Dr. B, the pediatrict ENT could do it. (Not to be confused with Dr. ____, the regular ENT that will be doing Michael's ear tubes....) We think Dr. K_____ just wanted to make Dr. B the big meanie.

Well, it was a rough visit, and Michael is having a rough afternoon. First came a scope with a little camera down Michael's nose to see his trachea, then came a scope down Michael's trach tube. Michael was pretty mad at this point. It took a Daddy hug to keep him holding still, and a quick consult with Big Bird was necessary to make sure that they were both still okay. (They were.) (Big Bird has a trach, too, and he gets all the same shots and yuckies that Michael does, and they commiserate.)

Well, it didn't end there. We packed up, went to another room, and Michael got to try on a kiddy straight-jacket. He thought it was funny at first. They strapped down his little hands, and he grinned. They fastened his feet together and then began wrapping him in giant pads kinda like a straight-jacket (really!). He thought it was pretty funny until he realized he couldn't move, and Mommy and Daddy were on the other side of the room. Then the anxiety began. OH NO, ANOTHER PROCEDURE!!!

Out went the old trach, in went the bigger one, and then came all the coughing. And coughing. And coughing. And coughing and wheezing. We were told that increased secretions for the day are to be expected. (I find this hard to believe given that my child coughs up a plateful every 5 minutes!) And, we were told that the coughing and wheezing was "okay". (Glad they said that, because he sounded horrid!)

As if this indignity wasn't enough, we went back to the other room for another quick scope down the trach to take a look. Oh the suffering! This one was quick, but NOT quick enough for Michael! Mommy came and got him and snuggled him while he told her all about it. He cried for nearly half an hour, and Mom carried him to the car while Daddy carried the car seat. He thought about not crying, and then he would start up again for the sheer indignity (plus, the air conditioner wasn't working in the building, and it was HOT!) We finally stopped crying altogether when we got outside and the cool breeze drifted by, and we even had a smile for Mom by the time we got in the car.

(For those of you in the frozen north, it is still pleasant weather here ....)

So, Michael fell asleep on the ride home and is now home in his swing, having a meal and wheezing. Hopefully he will feel better soon. He does sound better, despite the wheezing, but the coughing is hard to listen to. Michael already had a nebulizer this afternoon, and we've decided to let Michael's friend "Blue Hose" be with him for the rest of the day to help moisterize his trach area and give him a break. Oral feeding is out of the question for the moment because of all the coughing. In fact, even the tube feeding isn't going well because of the coughing and the leftover air from crying, but we are getting it into him slowly. I think it could be a long afternoon for the M-man. But, as we keep telling him, tomorrow will be a better day, and this should help with all the secretions by making them more managable. (WE HOPE!)

Rough day. And still, the little man will smile.

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November 27, 2007

Tuesday, June 15, 2010

Well, today is the day Michael gets a bigger trach. We have mixed feelings about this, but it needs to be done. The remaining question is what kind of trach? Will it be one just like the one he has, but bigger, or will it be a much longer one that sticks out much further and has a spring on it? We will have to let you know. Again, we have mixed feelings. I have to admit, I'm pretty anxious.

It has been an interesting period of time for us, nursing wise. We are precertified through Christmas, but staffing hasn't been as easy as it was in November. We have a new day shift nurse who can come some days but not all, and our weekend night shift nurse is not allowed to work anymore (she's 8 months pregnant) so we have lots of new people coming in. And, Michael is now old enough to really notice and to object. We can't just let him wake up to a new face in his room without risking some serious tears and anxiety, poor little guy.

Our Saturday nurse couldn't come because her car wouldn't start. Our Sunday dayshift nurse couldn't come because of a prior commitment that she had overlooked when scheduling. Our Sunday night shift nurse couldn't come because she said she was getting sick. Our Monday dayshift nurse called in sick, but she was willing to come with a mask and gloves. We said no. Of all these, only the Monday nurse was able to be replaced. *sigh* MAdam ark and I learned that our hideabed couch is really VERY comfortable -- more so than some of our spare beds -- so you can't fool us anymore when you come to visit!! Anyway, we spent Sunday night in the family room so we could get up with Michael when the monitor rang every 15 or so minutes. Long night, but a lot easier than trying to stay up with him in shifts when there is only two of us around to split the shifts.

Couple that with Michael's ever increasing suctioning requirements (about 3 times in ten minutes when he is awake) and you can understand why we are looking forward to the HOSPITAL in December. Hopefully palate closure surgery will show some outward physical improvement in Michael's secretions and his ability to eat. It would be nice to feel like we were swimming laps again instead of treading water. (I have to work on these analogies -- if you swim laps, aren't you backtracking over the same spot again and again? I need to think these things through a bit better, I guess!)

On the flip side, we saw the Pedes yesterday for a checkup. Michael is great -- 13 1/2 pounds and 25 1/4 inches tall. The doctor watched him rolling around and said he has all the muscle strength and coordination to roll from back to front whenever he feels like it -- we just have to find something to motivate him appropriately. I forsee that his toys will be just out of his reach for awhile....

We are eagerly looking forward to the time when we can open our home to visitors again and begin taking Michael out into public. Poor kid has been sick almost all of November, and we just can't risk more contaigon. How about a nice Valentines Day party?

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November 25, 2007

Monday, June 14, 2010

In the spirit of Thanksgiving, we felt compelled to share with you some thoughts. This holiday season has been an emotional one for us, and it is sometimes very, very hard to keep focused on what we have to be thankful for. So, to help us remember, we offer these words:

We are thankful for our friends and family who love and pray for us. We are thankful that Michael has a future that is full of health and hope. We are thankful for our parents and Aunt Louise who have come to stay with us in the past months. We are thankful for your emails of hope and encouragement. We are thankful for the gifts and cards you have sent to Michael and to us. We are thankful for the E___ family who are tremendous role models. We are thankful to live in an area where Michael can have surgery so quickly. We are thankful to live so close to specialists who know how to treat Michael. We are thankful for our employers, who have been more understanding and supportive than you can possibly imagine. We are thankful for our friends who have more pain than we do who still have the strength to listen and advise. And most of all, we are thankful for all of you who watch and read our story and help carry us through the times when our hearts are heavy, our bodies are tired, and our will is flagging.

We wish we could have had a professional baby picture of Michael in the hospital. We wish we could take a picture of Michael crying on Santa’s lap. We wish we could give our son a bottle and have him drink it. We wish we didn’t have to have a joke about Michael's friend “blue tube” that follows him wherever he goes. We wish we knew what to write in his baby book on the pages that assume our child was healthy and whole and home in three days. But, we know that the tide will turn and that in the end we will all be healthy, whole, and stronger for these hard times.

Seeing kids in strollers at the shopping mall or grocery store causes pain. Hearing children laugh on holiday commercials on TV causes tears. But then, seeing Michael smile and giggle causes joy. Watching him explore his world brings smiles. Knowing that some day this will all be behind us keeps us getting out of bed every day.

In the meantime, our nanny situation is desperate, and if there is one thing we need more than anything else, it is an answer to this problem. If anyone knows a retired nurse or someone who wants to learn to care for Michael, please send us an email. In the end, the only job requirement is common sense. We don’t expect anything for free, and we will pay a salary with vacations and with all taxes withdrawn from the paycheck. Time is not on our side, and the only options left are painful and hard to contemplate.

Smile through the tears, and laugh through the pain because these things will always be with us. And, no matter how bad things are, they could always have been worse.

Happy Holidays, everyone. :-)

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November 21, 2007

Sunday, June 13, 2010

HAPPY THANKSGIVING EVERYONE! We hope your holiday is happy, healthy, and restful. We've got the "happy" part down, but "healthy" and "restful" seem a little bit out of reach today.

Hopefully today will be a better day .... Yesterday was pretty rough for all concerned. Poor Michael's tummy hurts from the antiobiotic and all the mucous draining. And, yesterday, the fates worked against his little stomach.

We knew we were going to have to rush to the pediatrician at some point to get Michael's Synagis shot as soon as they called to say it had arrived. It has been a long struggle to get the shot for Michael -- although this time it was not the insurance company's issue. We don't know WHAT it was. Synagis is an antibody drug that is given to kids that meet certain risk criteria so that they can have extra protection against RSV -- a deadly respiratory disease for fragile infants and toddlers. Michael does not meet the usual criteria (premie, below a certain weight, etc.) but he is a high risk baby and was approved for the drug without any problems. (The shots are, we understand, about $1000 a dose.) Unfortunately, his first shot should have been several weeks ago, but it was not sent from the pharmacy until yesterday. No one knows why it took so long, but as of Saturday the pharmacy was calling my work number for more information and asking me to call them back. With all due respect to my work colleagues, I am out of practice in checking my voicemail at work on a Saturday. By the time I got to it, it was Monday morning, and I was a bit annoyed. In addition to Michael needing this drug to help keep him safe, the doctors wanted two doses into him before his surgery, and the doses must be 28 days apart. As you can see, we were RUNNING OUT OF TIME! (The hospital is a great place to acquire RSV, as you can imagine!) So, long story short, we got the medication overnighted to the pedes office for Tuesday delivery. The office then called and said they could give Michael his shot if we came in between 11 and 12. Well, it was 11:00, and Michael had just finished eating. And having his antibiotic. And having his rather caustic vitamin. And having a stomach full of snot. (Sorry.) I knew this spelled disaster -- no time for burping, at least not enough! We got into the car, and sure enough, Michael threw up twice on the way to the doctor's office, and the second one was a BIG one. Then, while lying in his diaper in the doctor's office, he did it again. Again, BIG. So much for that meal. Poor kid was stuck on Pedialyte for awhile, then we worked up to one ounce of milk every half hour all night long. There doesn't seem to be any stomach virus -- just all that other "stuff". This morning we spread his breakfast out over a longer period, and so far so good....

The poor shots were no fun either. He had one shot in EACH leg, and they stung! There are moments (very rare) where the world is a little bit glad my son can't speak. If he could, you would have heard the screams in Fairbanks, poor little guy. But, he dozed a lot in mommy, daddy, and aunt Louise's laps throughout the evening in between suctionings, and he was still full of smiles and some giggles in between the coughs and tears. What a great spirit this kid has!

Hopefully today is a much better day, with less secretions, less coughing, less vomiting, and more SLEEP!

Hopefully our next entry looks less like a mother's blow by blow of her kid's puking! Sorry about that, but I know you all want to know how Michael is doing, and all he is doing these days is being sick.

HAPPY THANKSGIVING!

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November 19, 2007

Saturday, June 12, 2010

Hmmm. Michael's lingering cold has taken a turn for the worse, and we have another lung infection. We are treating it aggressively with antiobiotics, but if he doesn't improve we may move on to steroids. The goal is to get, and keep, him healthy for that looming surgery date! In the meantime, Michael is *smile*, *cough, cough, wheeze*, *smile!*. He is such a good natured baby.

We're still waiting for his first Synagis shot (antibodies against the dreaded RSV virus). The company that was to send the shot has not done so yet. It has been a nice game of phone tag and whisper down the lane to get this straightened out, but hopefully it is on the way toward being fixed. The shots need to be given 28 days apart, and the doctors want two shots in before surgery. I keep telling every clerk and nurse that I get my hands on that we NEED this shot in the next 48 HOURS to comply with the doctor's orders. *sigh*

As far as the Prevacid debacle goes -- I still have no idea why it was "confidential". The drug apparently requires a pre-approval. The pharmacy handled the pre-approval last time, but for some strange reason the insurance company refused to tell them what was wrong this time. I dare say it is more than I can figure out. I'm getting to know Michael's pharmacist "Doctor Bob" better than I intended!

Well, Michael says, "Hi" to everyone. He is having a ball of a time with Aunt Louise, who is staying with us for Thanksgiving. They have hit it off like old pals. She has been a trooper and wins the "special thanks" award of the week. (Who else but an aunt would clean off your dining room table from two feet of paper and crap when you ask????) And, she had her share of staying up with us when our wonderful weekend night nurse was admitted to the hospital on Saturday. (She's pregnant, and we hope everything is okay ....) Lucky Michael got to sleep on her lap during the middle-shift. He was coughing too hard to lay down after the midnight meal, and she made Michael's night by holding him for several hours. Lucky Michael!

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November 16, 2007

Friday, June 11, 2010

Well, it has been a day of good news and bad news and confusing news.

Good news: our nursing care has been extended to Christmas.

Confusing news: Michael's stomach medication has suddenly been declined by the insurance company for a "confidential" reason that they will not reveal to the pharmacy. I need to call someone on Monday to find out why. (?????????) Apparently the drug is not covered, but they won't say why, or why this is different from the refill we got two weeks ago. (This is Prevacid, for crying out loud.)

Bad news: We thought we had an agreement with a lady to be Michael's nanny, but we just got the contract returned in the mail with a note that she cannot accept our job offer. I really thought we had it this time, and once again we have to start over. We stopped interviewing because we had gone so far as to make an offer, but I guess we can't even do that. We'll have to keep interviewing until a signed contract comes back to us. The problem is that we are now under the gun for time, as the nanny really needed a good solid month in the house with Megan before sailing forth, and now that can't happen.

Well, as we have found so many times before in this past year, all we can do is hang on by our fingernails. Michael is not allowed in day care and cannot stay in a home without a care provider that is trained in care of a trach tube and emergency trach changing procedures. We will provide the training required, if only we can find the person willing to help.

Please -- if you have any ideas, we are open to them.

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November 12, 2007

Thursday, June 10, 2010

Well, today was the last day we see Nurse A___ for a whole week, as she is now working basically Mondays and some Saturdays. And, we have no nurse for the next two days during dayshift, along with some gaps toward the end of the month. Of course, A___ will be sorely missed, and Adam and I are once again reminded of how hard it is to get Micahel places without a nurse and how hard it is not knowing who is coming to help us on any given day. Hopefully the new nurse they are sending on Thursday will work out just fine -- or at least fine enough until A___ can come back in 6 weeks. (Let's not even think about what happens if we have no nursing care allowed by the insurance company in 6 weeks.) I'm not ashamed to admit that we said goodbye to A____ with some tears. She has really become part of our family, and we are very attached.

As far as the insurance goes, here are the facts: we are entering into the recertification period again. Our current precertification period ends on November 25th, and the recertification process begins in three days. I have some assurance from Michael's case manager that we will be covered through surgery, but of course that is just talk until the letter comes. Plus, after surgery is a whole new ballgame.

Now on to the proud parent story -- it isn't true that babies need lots of tummy time to figure out how to roll over. Michael barely had any since the "G-tube incident" because Mom was a bit fearful. But, today, he rolled front to back three times. He can only do it when his hands are put in front of him by Mom or Dad because he isn't quite coordinated to put his hands there by himself. But, he tried to roll over with his hands behind him in the "flying" position and got pretty frustrated when he couldn't make the rollover work that way.

Also, Michael did roll back to front once, two weeks ago, but it was purely by accident, and he has shown no sign of actually doing it again. (He makes it about 3/4 of the way and stops.)

Well, that's about it. Catch y'all later!

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November 9, 2007

Wednesday, June 9, 2010

Well, it is the last day of our last full week with A___ as our nurse. She'll be coming some days going forward, but not most of them. Now we have to break in a whole new person!!!!! And, of course, there are gaps in the schedule on dayshift while we get re-oriented. *sigh*

Michael is handling his cold reasonably well. On Wednesday he was better enough to leave the humidifier (blue hose) behind for most of the day, but then he was up for many hours on Wednesday night playing and coughing. Then on Thursday, he was super-super congested and feeling pretty awful. We're hoping today is a better day because Michael has a long car ride to PA this afternoon so we can see a vision specialist Saturday morning.

We had a visit from the new speech therapist last Tuesday. She is a bit baffled by Michael's lack of concern about eating and how to make him want to try despite his "uncoordinated swallow". She plans to bring by her mentors when she comes back next Tuesday. We'll have to see how that goes -- I don't get the sense that she works too much with babies.

We're still progressing toward surgery on the 20th of December. Michael will be having his palate closed, and we just confirmed that he will have tubes in his ears at the same time. Big day for the little guy. But, because of Michael's repeated illnesses, we will be limiting visitors in the month of December. I'm sure you all understand.

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November 6, 2007

Tuesday, June 8, 2010

Well, we're sick again. Yep. Again. That's three times since we came home, in case you were counting. This time its a "cold" so no antiobiotics. (I can't tell a cold from tracheitis, though -- they look like the same sick kid to me.)

We had to see Dr. O at the pulmonologist since our regular doctor was on call at the hospital. Dr. O was pleasantly surprised to see how well Michael was handling being sick, so that was good news. The better he handles illness, the less likely they are to want to wait to remove his trach if he is ready to remove it during winter (respiratory virus season). So, that is good news for us. The other plus about illness is that it brings out Michael's voice. (I have no idea why, but it does.) So, we're sitting around enjoying listening to Michael coo and whine at us. (Sounds horrible to say it that way, doesn't it?)

In the meantime, Michael is still struggling with swallowing. Sometimes he gets it, most of the time he doesn't. We have another speech appointment today, so we'll see what happens. I've been warned that this appointment is mostly "paperwork."

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November 2, 2007

Sunday, June 6, 2010

Well -- lots of little things. We learned from the interim speech therapist that Michael does NOT have an oral aversion. He wants to eat, but he really can't. He has an uncoordinated swallow because he lacks the correct muscles to pull things together. He managed it when he was smaller, but it gets harder to manage the bigger he is. So, now we have an elaborate mealtime routine to make him THINK he is eating, and he seems to be responding well to it. The good news on that front is that we should see a dramatic improvement after his palate surgery.

Funny thing ... we spent a few days trying to wean Michael from the "dumb green hospital pacifier" onto a more socially acceptable (Mickey Mouse) brand. Now the speech folks tell us that for Michael's unique physiology, the dumb green one is preferable. I hate the green one. (If you couldn't tell already.)

Adam and I also got training on Gtube replacements (!) (So now it will never happen again, right??) It turns out that the manufacturers recommend checking the water in the balloon that holds the Gtube in place about once a week. (So much I didn't know!) They checked it at the doctor's office earlier this week, and guess what -- it was only half full! Where did all the water go? Thankfully, they refilled it for us and it should be good to go for awhile again.

And, here is the blow of the week. Michael's regular day shift nurse has to take a training class for her other job, and she will be leaving us as the regular nurse starting two weeks from now. Michael, Adam and I are heartbroken and we don't know what we will do without her. Just when we feel like things are finally getting stabilized ....

Well, we need to roll with the punches and keep our chins up. What I can't figure out is why the little things feel like the heavy things. I think it is because the big things are too big to think about.

Thanks as always to all of you for keeping us in your thoughts and prayers.

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October 25. 2007

Saturday, June 5, 2010

WE HAVE A DATE! Keep your fingers crossed that we are all still healthy, but Michael is scheduled to be back under the knife on December 20th. What a great Christmas present -- a whole new palate!

It's funny, but this past weekend I found myself singing, "Because we need a little Christmas, right this very minute ...." How fitting.

So, the moral of the story is, if you are coming to visit Michael, PLEASE GET A FLU SHOT. Also, if there are sick folks in your house, we ask that you not visit. I realize this is a pain, but we must insist because we need to limit the things Michael is exposed to. With his open airway, it is way too easy for Michael to get sick.

On other news, we will be upsizing Michael's trach in a few weeks. He is switching from a Neo Bivona 3.0 to a Pediatric Bivona 3.5, for those of you that are curious. The "Neo" versus "Pediatric" tells you how long the trach is. The "Bivona" is a type of trach that Michael uses, and the "3.0" versus "3.5" tells you how big the airway is. According to the pulmonologist, Michael is doing great, and we will be starting experiments with the Passy-Muir speaking valve once the new trach is in. We'll have to keep you posted on that.

Thanks, all. Onward and upward.

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October 23, 2007

Friday, June 4, 2010

GOOD NEWS! Michael is heading for surgery soon! We are tentatively scheduled for palate closure in the first week of January, but it might be earlier. Michael is on the wait list for a spot on December 20, and we'll know by Thursday if the person already scheduled for that date will have to change it or will confirm it. And, Michael is also on the cancellation list to take any spot that opens up because another patient gets sick or whatever.

Basically, Dr D_____ thinks that Michael is big enough and strong enough that "there is no reason to wait." YAAAYYYYY!!!!! I'm sure we are the most excited parents to ever plan surgery for their kid! It will be a hard thing for Michael , but it really is the next step on his road to getting better. It will help his breathing, and it will really change the way he approaches eating. (And hopefully it will be a major improvement there, too, but we will have to see.)

We'll keep you posted!

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October 22, 2007

Thursday, June 3, 2010

I just wanted to let you all know that our nursing care has been extended for another month. This time, we got notice early enough that there should be no break in Michael's care. This is great news since we unfortunately had no help this past weekend. Sunday nurse had other committments, and our night nurse had an emergency and was not available. Thank goodness my Mom was here!

Michael and his parents had their pictures taken at Sears this Saturday, and he did very well. Better than we did, that is for sure!

This coming week is full of doctor visits -- four in fact, but hopefully we will have more progress to report after they are over. In the meantime, the kiddo refuses to drink by mouth, which is frustrating beyond belief. In an effort to stave off what seems to be a growing oral aversion, he is allowed tastes of baby bananas a few times a day, and he thinks they are GREAT! He is the first baby I've ever met who doesn't thrust his tongue out to reject solid (mush?) food. I swear, he doesn't even need a bib! Well, if it keeps him active in the mouth, we will do what we need to do. More on this as it progresses.

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October 16, 2007

Wednesday, June 2, 2010

Fun weekend! Michael had a great day at the craft fair. We met up with some of our friends that live in Front Royal, and Michael was the hit of the party.

One thing to think about is that this kid hardly ever goes outside, so this was a big deal on a lot of levels -- more than we quite realized, as Michael let us know. First, it was his longest car trip. Second, it was his first "cold" day outside, with a jacket and a hat! Third, it was his longest stint outside ever. (The world is bright, mommy!) In all, he took it like a champ.

The funny thing is, we've almost never taken Michael to a place where he wasn't the center of attention. When he went to the car dealer, his grandparents kept him entertained. When we went out to eat at Pizza Hut, everyone came over to "see the baby". You know the drill. But this time, there were lots of people walking by, and only a few of them came over to talk to him. He was sitting behind the booth, looking at all the people walking past, and doing his little "Hi, Michael!" wave. He does it regularly, but it is still a bit uncoordinated. Yet, he knows that is what you do to say, "Hi!" Problem is, no one was looking at him, and no one said, "Hi" back! He wasn't sure what was up with that, and he kept looking at me like, "What am I doing wrong, Mommy?" It was pretty cute.

There was one acquaintance of ours who did come up and talk and wave, and she kept saying, "It looks like he is waiving back at me." When we told her he was waving, she tried to tell us he was too young to do that. Obviously not!

Adam and Michael went to the pediatrician yesterday, and it still appears that Michael has had no ill effects from his trip to the ER last week or from the G-tube disaster. His stomach is looking great. Even better, the doctor doesn't think we will need the second round of antibiotics for the infection, but we need the pulmonology consult on that, too, before we decide. Way to go, Michael!

Next week is a busy one for us, with lots of doctor appointments, including the plastic surgeon, so we will keep you posted!

Finally, and best of all, Uncle Alan is breathing on his own now, up and around his hospital room, and back to his old rascally self. We are so thankful. I can't even bear to think about how close a call that was, and I have to confess that I was beginning to think we really were going to lose him. Thank heavens we didn't. Now we just have to focus on making sure that Lynn and Alan's adoption of little Catherine can be finalized and she can come home to her family.

OH -- PS -- I know there are some of you that want to know about kid-sweaters and other crafts for Christmas and birthdays but don't want to ask. As you might imagine, I have not had time to make a lot of new stuff, but Adam and I still have a fairly large inventory of things. If you are interested in anything in particular, give me a call or drop me an email and I'll call you. We would love to have the inventory moved out of our house, so you would be doing us a favor if we have anything you might want.

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October 12, 2007

Tuesday, June 1, 2010

Just a quick note today:

Michael is still recovering nicely from his illness. We have decided that, unless he takes a turn for the worse, we will try to visit Front Royal tomorrow. The nurse will be arriving here at 7:30 to help mom get all the "just in case" equipment in the car, along with the baby and all his usual stuff. Should be fun, although I will miss helping Adam at the booth. Hope it doesn't rain!

Anyway, Michael still goes through periods of loud vocal sounds. Yesterday he did it to nurse Angie while she was holding him and warming a bottle in the kitchen, and she was so surprised she almost dropped him! (She says she now understands why I was so alarmed last Friday -- it is unnerving to hear him the first few times.) He doesn't do it unless he is trying pretty hard, which generally means that he is upset, but he can do it.

Most of the time, though, Michael spends his day smiling and (I think) giggling. I do wish I could hear him, though. I'll bet it sounds pretty cute.

Thanks to all of you that have been sending gifts and cards and bringing food. As my sister says on her CarePage, there is so much comfort we get from your notes on the Message Board and your thoughtfulness. It really, really does make a difference.

I hope we'll see some of you tomorrow. Send your friends over so Adam doesn't have to pack too much stuff when he comes home!!

Best, Megan, Adam and Michael.

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