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Monday, August 17, 2009 1:37 PM CDT

Anthony seems to be doing well after the second surgery. He seems to have more stamina/endurance. He is a monkey bar wiz now something he struggled with in the past. He also is a bike riding fiend. He will ride anywhere we let him. Two weeks after the sugery he rode 3/4 the way around the lake to a park, played, took a walk in the woods, and rode all the way home. He still requires training wheels, but he does not seem to care. He just likes to go.

We took a brief National Lampoon vacation the begining of last week to Duluth and Two Harbors. Anthony loved the train ride in Duluth, skipping rocks into Superior, playing in the pool, and catching bugs. Bugs are his current craze. He would chase bugs all day if he could. His favorite are grasshoppers. Thankfully they are easy to find. He has had a variety of beetles and small butterflies for variety. His mom spied a nice black beetle with long antena before lunch in Two Harbors. It kept Anthony occupied through most of our meal.

Some Anthonyisms of late include:

He will see girls about his age, and almost always say "hi there little girl". They have no idea who he is so he gets plenty of looks. One father in the Duluth train museum felt compelled to let Anthony know "...hey that's my daughter...".

Upon failing to make a rock skip "...awe I blewed it."

He often tells us "...it's time to go!", Anthony speak for let's get out of this house, now! We ask where, and lately he wants to "...catch bugs".

This weekend when he was told daddy was going back to work, he announced "... Monday, we will go nowhere fast".

Monday, July 20, 2009 3:46 PM CDT

We dodged the reconstruction bullet yet again. The doc did dilataion and laser, just like last time. It seemed to take a little longer, but it was probably just perspective - we were expecting a long surgery last month and it was short. This time we were expecting short and it didn't seem as short.

His airway is still healing from the last surgery (as expected) and most importantly the dilatation held. This dilatation and laster is giving him a considerably larger diameter "breathing straw." Bottom line is we hope to see more positive results over the next several months as the airway heals completely.

I'm also pleased to report that induction (the start of anethstesia) went much easier this time. Pre-op didn't have a wagon available for the ride to surgery waiting so Anthony rode on the "cart" as they call it (we'd call it a hospital bed). When it was time to go to the OR I rode on the bed with him. He was quite anxious but I was better able to get a good grip on him. The legs and feet came up to kick anyone, anything. Then his doctor - a very familiar face - came over to tell him the story of the firt moon landing and how the astronauts wore masks, etc. and he stared at her while the stinky gas took effect. For the first time ever I didn't leave the OR in tears over my complicity in the torture.

Anthony's also more receptive to the Versed given pre-op. The first time we had to corner him to give it. This time he lifted his PJ top and opened the button. He was feeling quite mellow by the time the doc came for the surgery paperwork. Anthony looked at her, all dressed in surgical scrubs, and said in his sweet, soft voice, "I don't need you." That gave us all a good laugh and smile.

Anthony and I are spending the night in PICU. We agreed to manage the post-surgcial swelling without Decadron this time in hopes of avoiding the insane agitation that we had for three days last time. We're going straight for prelone this time.

The plan at this point is to go by clinical observation to decide what, if anything to do next. The doc has no plans to bronch him just to see how things look - she needs a reason to go back in. Hopefully he won't give her one!

Monday, July 20, 2009 8:38 AM CDT

Anthony passed his pre-op physical on Thurs (he studied hard). We leave for St. Paul Kid's in about 90 minutes.

Today's trip to the OR is to find out if the June dilatation held. If it did, then we should be home later today or tomorrow. If it didn't hold, we're in for trachea reconstruction. After the way things went in June, we don't know what to expect, or even what we should hope for.

Anthony is definitely sleeping better and has more strength. He's doing monkey bars and rings that he's never been able to do before. The only thing is there's no weight gain yet (but he is taller).

We'll try for an update as soon as practical, sometime late afternoon.

Thank you for your prayers for us and for Anthony's medical team.

Wednesday, June 24, 2009 7:29 PM CDT

Anthony had a good night's sleep Monday, but he was the only one. PICU is a very noisy place. It took awhile to get Anthony comfortable though. After a 2nd dose of Decadron (an IV steroidal anti-inflammatory) he became agitated. He started retracting quite heavily in his upper airway and we could hear gunk that he needed to cough or clear.

Respiratory was called to hurry up with the Pulmicort neb he was scheduled for. It didn't help much. So, even though his O2 sats and heart rate were fine the doctor ordered an epinephrine neb. That neb didn't help his mood any, but did help clear the junk a bit. The doc also ordered a chest x-ray just to make sure there weren't any air leaks or areas of collapse -- the x-ray was fine. I was discussing various sleep aid options with the doctor when Anthony finally gave in and fell asleep.

He was scheduled for another dose of Deadron at 1 am and we decided to give a dose of Versed with it to either keep him down or help him go back to sleep; he stayed asleep.

We were given the ok to go home in the 7am hour Tuesday but had to wait for rounds to finish before the discharge orders were completed. Anthony was so anxious to get out of there that he was actually saying, "Doctor! Come here, come here!" which was the opposite of all day Monday, where everyone was a doctor and he told them "You go now!" We stopped to pick up a couple of scripts (and two matchbox airplanes), getting us home around noon.

The 'roid rage was pretty severe all day yesterday. Lots of screaming and yelling, hitting and throwing. Even though we wanted him to have a bath in the worst way, it wouldn't have been safe.

At one point he came upstairs to find someone to yell at. I was the lucky one. (Actually, it was my turn as Mark took the brunt of it in the afternoon while I napped my way to from zombie to subhuman.) He knows he's not to hit me so he took my hand spread my fingers apart, turned my palm toward my face and pushed my hand into my face. I couldn't help but laugh at his creativity - he didn't hit me, I hit myself!

He finally wore himself out with the help of some melatonin. He slept quite well but was up for the day at 5:15am. The 'roid rage was fairly bad in the morning, but it has settled down considerably. His pediatrician said Decadron can stay with you for 48-72 hours. The only thing we can do is keep things as calm as possible around here. That means we're pretty much staying in the house with the TV down (unless it's a video of Anthony's choosing) and the lights out. I'm also thinking his ears are ringing because he's talking so loudly (when he isn't screaming).

Hopefully things will be settled enough by tomorrow night that he'll want to go to baseball practice. That has been a bright spot in his summer so far.

Wednesday, June 24, 2009 5:38 PM CDT

We got home Tuesday around noon. We were given the ok to go home in the 7am hour but had to wait for rounds to finish before the discharge orders were completed. Anthony was so anxious to get out of there that he was actually saying, "Doctor! Come here!" Then we had to stop to pick up a couple of scripts (and two matchbox airplanes).

Anthony had a good night's sleep Monday, but he was the only one. PICU is a very noisy place. It took awhile to get Anthony comfortable though. After a 2nd dose of Decadron (an IV steroidal anti-inflammatory) he became quite agitated. He started retracting quite heavily in his upper airway and we could hear gunk that he needed to cough or clear. Respiratory was called anyway to hurry up with the Pulmicort neb he was scheduled for. It didn't help much so His O2 sats and heart rate were fine

more later...

Monday, June 22, 2009 2:59 PM CDT

Wow. For once we have a pleasant surprise. The plan always was to start with the bronchosopy and the doc would come out to tell us where we were going from there, either more lasering then home or trachea reconstruction w/ ~two weeks in PICU. So imagine our surprise when a third option was presented out of the blue - enlarge the airway using a new procedure.

We were stunned. The procedure is angioplasty-like: insert a catheter, inflate a balloon to open the telescoping trachea cartilage, deflate the balloon, remove the catheter. She and her surgical partner decided Anthony was a good candidate after what they saw with the bronchoscopy. This procedure was all the buzz at a recent ENT conference. After brief discussion we said yes and Anthony was done 30 minutes later.

Our hesitation was a) it's a new procedure, but she's done them before and b) he will need reconstruction if it doesn't "take." The doc wants an office visit two weeks from now and we're coming back in four weeks for a follow-up bronch where we may end up doing the trachea reconstruction anyway. We decided it was worth a try.

As for pre-op events, Anthony was so very well behaved and happy all the way until we took the left turn into the OR. Then I guess the best description is to say he went all Kung Foo Panda on our asses, fighting us to the floor until we could get the mask on him. I feel like the worst mother in the world, being complicit in such torture (especially since I thought he was going to be "down" for a week), but his fight is what's kept him alive this long and it's abundantly normal to be entirely sick of all of this, especailly for the 25th time.

We are spending one night in PICU and should be discharged tomorrow. Un-freak'n-real.

Right now Anthony is happy enough to be in a room, watching videos on TV and construction cranes from the window.

There's no doubt in my mind that prayers for the medical staff helped today. And if this dilatation takes, he won't need the reconstruction. So, thanks for all the prayers, and KEEP 'EM COMING!

Monday, June 22, 2009 9:58 AM CDT

We're getting read to leave for the hospital. Anthony slept really well last night and is in a great mood (so far) today. He came into our room and snuggled with me at 5:15am. It was awesome.

He's been watching Kung Fu Panda all morning and insisted on wearing his "Tiger" t-shirt. It's a shirt that has a Chinese dragon on it so it reminds him of the movie. Too cute.

Obviously he passed his physical on Friday or we wouldn't be headed to Children's this morning.

The surgery is scheduled for 12:15 and is expected to take over 2 hours, so it will be a while before we update his website again.

It's hard to believe that after all he's been through in his 8 short/long years that he's about to go through the most complicated surgery to yet.

We appreciate the prayers and add some for his surgical and medical staff over the next couple of weeks as well!

Monday, May 18, 2009 2:09 PM CDT

Anthony is 8 years old!!! He is making progress at school, and as a little boy in general. He loves to be outdoors, and is getting pretty good on his razor. He likes to ride it down the little hill the driveway provides and intentionally crash into the grass on the other side. When bored with that he hops on his bike and does the same. If we don't keep a close eye on him he will take the jogging stroller up on the hill along the drive way, he then climbs in and rides it down the hill across the drive way and up the hill on the other side. In the house he likes to play with planes trains and automobiles. As with most things in his life, Anthony prefers to operate "off track and hands on". That means he prefers to push trains around loose on the floor, not on the track. RC cars, he prefers to push by hand, no need for a remote.

As the end of the school year fast approaches Anthony is demonstrating a lot of independance. He prefers to do things himself (or at least try to). One exception to this is eating. Shannon has him feeding himself. He will eat yougurt, or pudding himself, and hook up his tube and pour in the formula on his own. There are accidents with both, but he is getting much better. He often asks for help with feedings as he prefers to read a book, drive a car or train, or fly a plane while being fed. Having to do the feeding himself does not allow him to play. He has been known to scream if he does not get to play it his way.

Anthony is playing coach pitch baseball this year. Some of his class mates are on his team, the Mariners. He complains about going, but seems to have fun once there.

June 1 Anthony has a sleep study. An attempt to see if his sleep is too restless to allow growth.

June 22nd Anthony is schduled for a DL broch and lazer or reconstruction surgery. It is looking like he will end up with the airway reconstruction. He is not putting on weight. His lungs appear to be "okay" so the belief is that the blocked airway is causing the problems this time.

Tuesday, January 20, 2009 6:21 AM CST

Yesterday Anthony spent the holiday at Children's St. Paul. He endured his 24th sedated procedure. This time he was in for a DL Bronch and Dental cleaning. His ENT Dr. performed the DL Bronch to see how he has healed following the previous two laser surgeries. She also was reserving the right to laser some more if all looked well. Turns out she did laser some more. She made sure he could still have his dental work done too. His airway started out about 50% blocked before the surgeries. Now after this third surgery his airway is about 30% blocked. All of these laser surgeries are being done in the hope that he will not need reconstruction of his airway.

The dental checkup was fine. No cavities, no extractions, just a good deep cleaning. Only one of his molars was in. That one was sealed.

Anthony was less cooperative this time. In the past he has fought hard in the OR when they try to put the mask on him. This time he stared in the short stay area. He refused to allow the blood pressure cuff to be put on him. They let him slide on that. This was the second time we have tried sedating him prior to going into the OR. It has not helped much in OR, but it has helped in the recovery area, as he is much more mellow when he comes too.

After the rough morning we all went home and vegged. He watched his airplane videos. While we napped. Though these trips are almost routine for us, they seem to be getting harder for all three of us to take.

Tuesday, October 21, 2008 6:35 PM CDT

Anthony is making very good progress with the crumbs. He no longer gags when he touches them. He's let puff corn crumbs melt on his tongue. Today he crunched pringle chips with his teeth and let a fairly large crumb in his mouth. He then calmly worked it out of his mouth with his tongue and fingers. It's an important step to let him know he's in control: he lets something into his mouth and he can get it out and he does it without frenzied raking it out of his mouth. Even when he gags he's learned to "talk" himself out of it by making funny noises with his mouth or breathing through his nose. And, best of all, he goes back for more. The SLP tells us that's a great sign of motivation and of a very hard worker - which isn't news to us!

That was today.

Yesterday he had a MMM - Monday Morning Meltdown. It's common for these kiddos to not want to get back to work after a fun/therapy-free weekend. His was a delayed reaction however. He got through the morning food session and OT, but refused to participate in Recreation Therapy. He was at one corner of the gym and the therapist was at the other. He finally let us join him, one by one, in his corner to play with Jell-O Jigglers and power tools.

Seven days down, three to go, but who's counting!

Saturday, October 18, 2008 8:13 PM CDT

We're nearing the end of our Chantilly, VA visit then head back to Charlottesville tomorrow afternoon for the last week of feeding boot camp. Mark and I are going to miss the super-comfy hotel bed and Anthony's going to miss the pool.

We spent all day today at the Steven Uday-Hazy portion of the National Air & Space museum. Anthony just loved it and did really well. He only wished he could have climbed in and around the airplanes rather than just look from a distance. But that didn't stop him from trying several times. Luckily we caught him before security did (and security at this museum packs heat for some reason.)

Other than the morning meal, Anthony took all his calories by mouth today up until bedtime. He was such a trooper for it but it did help we had full view of approach to Dulles for entertainment. Unfortunately all the calories were pudding - chocolate, vanilla, and tapioca, but it's a foundation. Less than a week ago eating 5 oz of pudding a sitting in less than 10 min was a pipe dream. Now it's Anthony's reality.

Thanks so much for all the support! The guestbook entries are awesome!

Thursday, October 16, 2008 12:35 AM CDT

We have one feeding session left to go today. The first three went quite well, really. He's letting chocolate melt in his mouth and actually sipped some chocolate milk off of a spoon.
He's getting much better at licking oreo crumbs off an oreo, which is a far cry for gagging at the sight of crumbs. Sometimes we have to work pretty hard to keep his hands out of his mouth as he tries to dig the crumbs off of his tongue. Oreo crumbs aren't sharp, so that helps him deal with it easier. Only a couple of gags and it didn't stop him from continuing his work.


He ate 4 oz of vanilla pudding with 1 Tb of cream cheese filling in it for lunch. We could tell he found it very filling (and I was thrilled to learn you can buy cream cheese filling by the tub).

His biggest breakthrough today was to get some rather large tastes of spray cheese. He licked some off his finger and licked some off of his "art work" duruing recreation therapy. He got braver with the cheese at snack time. And then, at lunch, he took such a large bite of cheese off a spoon using his teeth that the SPL got so excited that she forgot to reign in her cheer. Anthony simply looked at her and said "Shhh."

We're working our way to the spoon over the NUK brush, to the point where we hope to retire it SOON.

We see the developmental pediatrician today at 2:30 to discuss his meds schedule. And he has a weight check tomorrow.

Every chance he gets, Anthony reminds us that we are leaving tomorrow for a "car adventure" and a swimming pool after our work tomorrow. From what I understand we'll get a feeding schedule for the weekend to implement while we're on our field trip to the Air & Space museum at Dulles International. It will be an interesting shopping list: mini oreos, special dark chocolate, yogurt, spray cheese, puff corn, and pudding pudding pudding pudding.

Wednesday, October 15, 2008 7:05 PM CDT

It is Wednesday night. Anthony and Shannon are down the hall using the tub in the unit. He needs a bath, the quickie showers in our "White House" room was not cutting it.

Our little trooper is working realy hard, but today he fought back some. By lunch time he was not excited to see Dr. Polly. He had a minor melt down throwing what for him was a pretty good fit. It carried into his session, but he settled down and did fairly well. He is consuming about 4 ounces of pudding, or yogurt each session. This is the last part of each meal session. He starts putting some type of solid food in his teeth. He did pretty well with the chocolate chunks today. Actually putting them in his teeth on his own. He still freaks a little when chunks get in his mouth.

After lunch he threw a bit of a fit at school, but settled down after a while and made a nice boa constrictor (realted to the story they read in school).

After he was done for the day it was time for a park, our reward to him for working so hard all day. Unfortunately the park stop tonight was at an elementary school. A very nice play structure, but it was not open until 6pm. We arrived about 5:10pm. The after school care kids were using the equipment, which is why we had to wait till 6. Anthony had already ran to, and was on the equipment by the time we read the sign. He blew a major head gasket when we took him back to the car. We attempted to explain we would go get food for mom and dad, then come back at 6. Ummm, well, he was not buying it. Three days of frustrations came out. He calmed some during the 20 minute ride to get food. We were back to the school at 6:10, and he played for about an hour (till dark).

More another day.

Tuesday, October 14, 2008 12:41 AM CDT

This is toward the end of day 2. We're all wiped and Anthony is working VERY hard. He's in school right now, after eating 5 oz of pudding - vanilla w/ a little butterscotch.

He actually asks for pudding because he's hungry for his meal. So, in order to push him, the SPL (speech & language pathologist) has him do two other things first, involving holding hard food (cookie, candy) in his teeth then touching it to his tongue.

He also will "slurp" pudding off the spoon or nuk brush. And, remarkably, he's pulling his whole tongue in his mouth then swallowing the pudding. His tongue is down and out of his way, and his mouth is open for pudding time.

One more snack session this afternoon then our little warrior is free for the day and will get some well deserved play time at a park.

Yesterday was kind of an assessment day (although not all the assessments are done). The SPL spent the three available snack times figuring out far she could lead (i.e. push) him. Anthony was very upset that she was making cereal "dust" - crushing it. Then, with the slightest hint of it in his mouth he had a severe gag. This morning he had a similar gag just touching candy dust.

The nutrition eval has us feeding him a small breakfast (and giving his meds, of course). Then with each eating session we are to subract his total intake from the calories needed for his next tube feeding (formula/water combo). And he's been eating so well that his tube feedings so far these two days have been mostly water.

The weather and scenery are beautiful; our room stinks (literally) has a hostel/barracks feel to it.

The SPL said these first few days her patients are so "afraid" of her that she is able to push them quite a bit then the honeymoon is over. She expects some rebelling toward the end of next week. But she is very impressed at how well his SPL sessions this summer readied him and at how hard he works. Willingness to work is often an indicator for future success.

Monday, September 22, 2008 3:19 PM CDT

Anthony did well with his bronchoscopy. Scar tissue didn't regrow significantly in the areas lasered on Aug 27 so the Dr lasered more scar tissue on the other side. The area of collapse (the telescoping cartilage) is still there but it’s taking up less room – she didn’t laser that area because there’s only so much cartilage to remove….

The versed experiment had mixed results.

He stayed calmer longer, and in fact got pretty loopy by the time we went to the OR; he was tripping watching his oximeter. However, it didn’t make the time in the OR any easier. He still fought tooth and nail with me, the nurses and a Dr or two to get the mask on his face.

The versed helped him to wake up more calmly, but 90 min after moving to short stay, he’s still too wobbly to go home.

Follow-up w/ ENT in two weeks, before we head to VA for feeding boot camp.

Wednesday, August 27, 2008 4:46 PM CDT

Anthony came through his procedure today in good shape. There were only two issues. First our little man started the day early. He arrived at our bedside at 2:40am. He said "it hurts" but would not tell us what "it" was. He went back to sleep, but none of us were ready to get up at 6am. Despite the rain we arrived on time at 7:30am.

The second issue was on the way into surgery. Once through the doors, he knew what was coming, and he screamed, cried, and fought. It took 6 adults to put him under. Very upsetting for all.

The procedure itself held no surprises, except to the extent of his airway blockage. It was described to us by his ENT Dr. as about 50% blocked. Yes that is a lot! No wonder Anthony struggles to keep up with little kids. Because of the severity of the blockage it was only partially opened today. It is very likely that Anthony will need to endure this same procedure again in about 6-7 weeks. Ugh.

Anthony was a little slower to recover today. He was not unhappy when we got back downstairs, but was very low key, and just laid and watched TV. He picked up steam and seemed his old self when we decided to go home. We stopped to get a bite to eat, and feed him a little. He was a trooper through the meal, but was quite tired when we got back in the car.

Here at home he has still been quiet, for him, but all in all seems to be doing well under the circumstances. We expect him to be back to normal come tomorrow.

A bonus of the procedure is that a loose tooth was taken out. They don't want them to fall out while they are working in, and around the mouth, so they removed it before starting. We took the tooth home for the tooth fairy. They gave it to us in a zip lock bag with a few dollars in it, and said the tooth fairy stopped by the OR. A very sweet gesture from one of the nurses. Anthony was just coming around, and really did not pick up on it. He will be excited when he wakes up to find the P-38 Lockheed Lightning the tooth fairy gives him. The tooth fairy has had this tucked away for several months waiting for this tooth to come out on it's own. When the child does not eat, and keeps all things away from his mouth, loose teeth just hang, on, and on, and on....

Take care.

Thursday, August 21, 2008 10:42 PM CDT

Our adventure last weekend to Omaha NE for the Offutt AFB Air Show was a grand success. Grandma and Grandpa Dufresne were able to join us - for added fun and added help (plus I had someone to talk to after 9pm when my boys went to sleep).

Anthony has been consistently telling us that the twin beech demo was his favorite. He logged quite a lot of swimming pool time too. He was an angel through the air show, the trips around town, and especially the flights to and from Omaha. We had some pretty good turbulence on the way down and Anthony, always helpful and smiling, told everyone to hang on tight!

We are getting ready for back to school, which so far has included a meeting with the teacher. He was apprehensive but did fine once he got into the room and finally believed me that we were only going to be there for a short time.

Anthony's next big event is a bronchoscopy and laser surgery on Wed., Aug 27th. An airway fluoroscopy (basically a live x-ray) showed a narrowing up to 50% in his airway, probably near the tracheostomy site. It is likely scar tissue and it's not unusual for it to develop as he grows.

He's had many bronchoscopies before, and most of them involved lasering scar tissue in his airway. However, just because it's Anthony's 20-something OR procedure it doesn't make it any easier. Nor do we ever take general anesthesia lightly.

Monday, July 7, 2008 7:57 AM CDT

A quick summer update. Anthony is working on eating this summer. He has therapy twice a week. He has been eating vanilla pudding at therapy. Each session he is given a goal, and once he achieves that goal he gets to go home. Last week he ate an entire ounce! He is gearing up for a tripe to the Kluge Child Rehabilitation Clinic in October where he will be given a crash course in eating by mouth.

For summer fun Anthony has been spending lots of quality time in the lake. He loves the water, and is becoming very brave. He will jump off the dock, and yesterday used the ladder to climb in off the pontoon anchored out in the deep water. He really seemed to like floating in the life jacket, but was not comfortable floating too far from the boat. Next thing we know he will be brave enough to go under water.

When not in the water he is happy to play on the deck, or take his bike, trike, wagon, stroller around the driveway. He has even ridden his bike to the park a couple times.

For indoor activities, Anthony still loves his planes, videos, cars/trucks. Lately he is turning into a DJ playing samples on his drum machine, and then reaching over to run the circular saw, or drill on his Bob the Builder work bench. He is also big into singing and dancing along with videos (provided mom and/or dad do not join in). If we try to participate we are greeted with his favorite cartoon quip "Safety Violation"! Now when we tell him something he likes, he will say "Right on Mom/Dad".

In the past coulpe of weeks he insisted we get him each and every character from the McDonald's Happy Meal collection for the movie "Kung Foo Panda". He now has them all. Unfortunately he still refuses to go see the movie. We are sure he would like it, but he will not go. We think the movie theater experience was just too loud for him.

Anthony loves summer vacation, and will not be eager to head back to school. Anthony will be spending another year with his K-1 teacher. We feel he will benefit from being exposed to the material again, now that he is being treated for his ADHD. His teacher, para, and others agreed, as he made tremendous strides the second half of last year.

That is all for now. Take Care.

Wednesday, January 23, 2008 5:38 PM CST

Here is a long overdue update. Anthony is doing well. He had a bit of a bug after Christmas, but only missed a few days of school. School has been so so for our little man this year. He is reading some, but has not liked going some days. He often starts in with a chant of "stay home" "stay home" the night before, and often tries it again the next morning. He usually is fine by the time the bus arrives. There have been a few days when he did not come around, but not many.

He has been less weepy this year at school. Shannon has been staying away. Last year she was volunteering at the school, and he would have trouble on day's he saw her there.

Anthony still is not eating. The latest from the feeding clinic is to have him see a Psychologist to work on some of his behaviors related to eating. He is much better about having food near his mouth, but still really does not like getting any in his mouth. We have just started with the psychologist, and will be ramping up as we head into 2008.

We also took Anthony to a Neuro Psychologist to have some developmental evaluations done. These were his first tests after all the physical impediments had been removed (no vent, no trach). The tests attempt to determine Anthony's developmental age for various things, and to determine how his brain is working, and functioning. The evaluation included long questionaires filled out by us, and his teacher as well as tests for Anthony. The results were not unexpected, Anthony is still considerably delayed. The Neuro Psychologist feels the results likely were not very accurate because of Anthony's attention span. He gave Anthony an ADHD (Attention Deficit Hyperactivity Disorder) diagnosis, and a "working hypothesis" of PDD - NOS (Pervasive Developmental Delay - Not Otherwise Specified). We have started Anthony on Meds for the ADHD. We have not noticed a huge difference in him, but his teachers picked up on it right away. We did not tell them for two days as we did not want to influence the way they looked at/interacted with Anthony.

The "working hypothesis" for PDD is due mostly to the fact the neuropsych felt the ADHD was interfering so much that Anthony could not show what he knows. We are to treat the ADHD, and see where that takes our little man. The NOS component reflects Anthony's significant medical history. If the treatment of the ADHD does not begin to rectify the delays then they would look to identify other causes.

The test results would indicate that Anthony is about a 3.5 year old in many respects. It also put him as mildly retarded for some categories. It was the neuropsychs opinion that Anthony clearly is not mildly retarded, but the testing gives no leeway for objective observations. The score is the score.

With treatment of the ADHD, and possibly the re-presentation of schooling he may have been too distracted to absorb, Anthony would likely perform better.

We have a half year of school left, and will be taking a long look at where Anthony is come spring. If he has not progressed well enough we will look at keeping him in first grade a second year. This will be his only opportunity to be held back.

Now for good news. Anthony still loves airplanes, birds, and other critters. He is a regular frequent flier. After the Duluth test flight, and the Fargo flight for the air show, Anthony added a trip to Phoenix. This weekend we plan to take him to Rapid City. He will get to fly on an "RJ" regional jet for this little trip. It should be great fun. We will not leave the hotel/water park, but Anthony won't care.

Saturday, September 8, 2007 8:45 AM CDT

First grade has started for Anthony, and it is off to a great start. Two weeks before school Anthony was to come in so his teacher could see him, and evaluate any summer progress. Our little man pitched the fit of all fits. He did not want to be there. As a result she had us bring him back later in the week for some more one on one time to see if he would do better. He still was unhappy about being there, but did somewhat better. These trips had us fearing the first day of school. We started a daily count down towards the first day of school, and the bus ride.

For what ever reason Anthony did great, and had a super week. He actually displayed boundless energy, and an extremely happy mood all week. Being back in school seems to have energized him. What a relief.

We think he may not have had a great experience at summer school, and likely will not send him next year, unless it is a different set up.

Tuesday, July 31, 2007 9:13 AM CDT

Summer School is winding down. Just 3 more days this week. It is really hard to tell how Anthony is doing, we don't quite get the daily feed back like we do during the regular school year.

In his spare time Anthony has been going to many parks, playing in the sprinkler, and playing with toys in the house. The hot humid weather is really hard on him, and slows him down noticably so he has had too much house time lately. We like to take him to indoor parks during the really hot stretches.

At the parks we can see how Anthony had gotten stronger. Most of his strength is in his legs. He likes to climb up on platforms and jump, or hang from rings or bars and drop. His arms still lack the strength/coordination to pull himself up like other kids much younger. We know in time he will catch up.

Monday, July 9, 2007 8:24 AM CDT

Anthony attended his first movie theater movie yesterday. He saw Ratatouille. It was a little long and slow at times for his short attention span. He went from the little boy eating seat to mom's lap, to dad's lap, to the restroom. He did seem to enjoy it though. Several times he was startled, and let out loud squeels, and jumped from his seat, but always with a big smile on his face. Only a couple times at the begining did he cover his ears. We were sure the loud sound would have him headed for the exits, but that was not the case.

Shortly before we left for the show he came up from the basement wailing. He had bitten his lower lip with his new big permanent tooth. He as usual recoverred quickly, and allowed a cold wet rag be place on the lip. We always know if Anthony is really hurt becasue he never complains for minor scrapes, or cuts. He has been through so much he has a remakably high threshold for pain, and seldom do we hear him complain.

Wednesday, June 27, 2007 8:21 AM CDT

Just a quick note. We spent the day at Children's St. Paul yesterday for Anthony's dental appointment. At last writing Anthony had lost one front tooth, and one was barely hanging on. Last Friday morning that second tooth came out. The dental appointment was to clean his teeth, and possibly pull the bottom baby teeth. Apparently those usually come out first, but there has been no sign that those baby teeth were at all loose. The dentist thought the permanent teeth were likely coming in behind the baby teeth, and thus not disolving the roots. Since Anthony was going to be in and sedated, another heart echo was also scheduled to verify that his pulmonary hypertension has not returned after the trach removal.

Anthony was his happy pleasant self most of the morning. He put on some drama for the blood pressure cuff, but was cooperative for everything else. That is until he and mom headed into the OR. He started crying, and Shannon reports that he fought the mask very very hard. Shannon was in tears when she returned to the waiting area.

Anthony was in OR/recovery for close to 2 hours. The dentist had to work pretty hard to clean his teeth. She also pulled 4 bottom teeth. The permanents were coming in behind, and are big enough to fill the space left by the four pulled teeth.

As hard as the trip into the OR was, Anthony came out of recovery in pretty good shape. I carried him down to the short stay area where we had to stay for one hour of post op observation. Anthony lounged on Shannon watching a video. He really did not complain about anything, and was happy to head to the car. Once home Shannon and I were ready to nap, and he was ready to tear the house apart. By 6pm he was standing on his head, and doing summersaults on the couch, just like normal.

Knowing the tooth fairy would be visiting again, he was awake at 4:15 this morning playing with his F117 stealth fighter.

Tuesday, June 19, 2007 1:29 PM CDT

Anthony lost his first baby tooth last Wednesday evening. His two front teeth have been on the move for some time, but did not seem to want to come out. During a tickle fest Anthony started to gag big time. His tooth had come out and dropped to the back of his throat. It could have gone either direction, but he managed to get it out of his mouth. He as usual took it in stride. There was a little blood, but that did phase him. We put the tooth out for the tooth fairy which he understood meant he would get a present. Unfortunately we were leaving Thursday morning for an adventure to the great white (wet in this case) north (more on this later). We had to wake Anthony from a very sound sleep Thursday morning, so it took him a little while, and some prodding to see what the tooth fairy left him. Once he saw the three new cars from "Cars" he was wide awake and ready to play. He was quick to point out that he was still needing the "DJ" car to complete his set. We attempted to use the tooth fairy as bait to get at that second snaggle tooth, but it is not quite ready to come out. Anthony is scheduled to see the dentist again on the 26th. He did not let her in his mouth at the last visit, and will meet her at Children's in a sedated state. This tooth being out means 1 less for her to pull. She may pull the other snaggle tooth, and the two bottom front teeth depending on what x-rays show during the appointment. She could have sedated him in her office last time, but the sedative she has there is also a respiratory depressant, and that may not work so well with Anthony's lungs. Thus the meeting at the hospital.


Now for the adventure. We took Anthony on a vacation to mark the end of kindergarten, and his break before summer school started (that was today). We flew up to Fargo (woo-hoo!) to let him swim in the hotel pool, and take in the Fargo air show featuring the Blue Angels. Only Anthony's second plane trip, but he behaved like a wily veteran. He was not happy to wait in the TSA line, and we used the Special Needs line which greatly reduced his wait time. He needs to work on his patience. Once through security he was delighted by all the planes. He marched right on the plane this time, and chattered the whole time on the ground because he had a window from which he could see many planes. Despite a 45 minute delay, he did quite well. Once in Fargo we stopped in the airport to eat, but he was not pleased about that as he knew a pool awaited him at the hotel. Our goal was to let his food settle before he hit the pool. His impatience was rewared while we waited for the hotel shuttle. He got to see four of the six Blue Angel jets take off in formation to start their practice for the air show. The ride to the hotel though short was a series of Blue Angel sightings as they buzzed the city. Once in the room Anthony was again able to see them occaisionally from the room. He came to expect them outside his window. Anthony loved the pool, a Pirate ship replica with several slides. It took him some time to gain courage for the biggest slide, but eventually used them all. Our goal was to have Anthony pooled out by Saturday, so he would go to the air show without complaint. It helped that he saw the Angels flying from time to time as we had convinced him he would want to go to the show.

Once at the show he had to wait too long for the main attraction. He was ready to go shortly after the first jet kicked off the show. We convinced him to stay by moving back by a hangar that provided some shade for a couple hours. We think he enjoyed the show, but it was a long afternoon for him.

We had been told the Blue Angel's crew, and pilots were in our hotel. I did spy a pilot in the restaurant Friday morning as I left to pick up a rental car. Shannon made several passes through the lobby to see if they were around, but never saw them. We headed to the lobby after we checked out to wait for the shuttle to the airport, and there they all were, sitting and waiting for their rides to the Sunday show. Shannon brought Anthony over, and they all stood up to greet him. They asked him his name to which he said "It's me, Anthony!". They told him they had an Anthony in their group. Then they asked him if he wanted some stickers, and posters. Anthony saw the first picture, and told them "It's Fat Albert" the name of the C130 support plane that is part of the show. They pointed at the one gentleman who was not in a blue jump suit, and told Anthony he was the pilot of Fat Albert. It was a brief meeting, but was fun for Anthony.

We jumped in the shuttle, and Anthony was able to watch the opening Jet, and stunt plane of the air show from the airport while we waited for our plane. Anthony impressed one of the other passengers by identifying the mustangs that were taxiing into position while we waited. Anthony was happy to get into the plane, and enjoyed returning to "Anthony's airport" where there were many more planes for him to watch.

Today was the first day of "extended school year" (or summer school). The bus was 20 minutes late, but Anthony did not seem upset about going. Shannon followed the bus, and checked in with the new set of teachers, aids, nurses, and saw Anthony was happily playing before she left.

Monday, May 14, 2007 1:26 AM CDT

Anthony's Birthday party was on Mother's Day. He wanted to open every present, including my Mother's Day present as soon as he saw it. In fact, he emptied a gift bag we had for him the instant our backs were turned.

Thanks to the "age-appropriate" level of patience our 6-year-old was displaying, we opened presents as soon as the guests arrived. The smaller or bulkier the present, the better: he knew those rectangular boxes were clothes. It was easy to make Anthony happy with anything that had wings, propellers, wheels, sound or any combination of the above. Swag from the movie Cars was a big hit and he declared the PT Cruiser his favorite - of the day anyway. Yesterday a Tonka fire chief's truck and it's accompanying DVD was his favorite.

As soon as the last box was opened and gift bag emptied he said to all, "Thanks! See you later." as if to say, "You can go now that I have my loot." That got a good laugh. He was too shy and/or overwhelmed for hugs, but everyone got a "Thank You" head butt, even the grandmas!

Anthony wanted no part of candles or singing so I had to take the cakes to the basement where he had retreated to watch Peter Pan by himself (he didn't give a rip about The Player's Championship) just so I could get a picture of Anthony and Mark with his squadron of B2 Stealth Bomber cakes.

In other news, Anthony drank about 45cc of milk for me on Saturday, a record. It took about 15 min., also a record. He attempted several spoonfuls of chocolate malt at DQ to earn the coins for the Children's Miracle Network Rube Goldberg coin collector. Progress, sure and simple!

My first Mother's Day landed on the 13th that year, 2001. It was also the day I was discharged from the hospital after a three week nerve-wracking stay and three days after a mind-numbing birth. It was a surreal Mother's day: There were no leaves on the trees and no green grass the last time I was outside. Now I was at the house with a Mother's Day carnation, but without our son. Everything, and I mean everything, was so different. I was feeling everything and nothing. Yet again we found ourselves at the top of the roller coaster hill waiting for some sort of plunge, waiting to exhale.

Now, seven Mother's Days later I'll let myself feel unabandoned, limitless love for the past and the future. It was a truly wonderful Mother's Day, to be surrounded with and remembered by the most important people in our lives, the ones who have been our rock when we were on quicksand, our light through the darkest nights, true advocates when we didn't know what to pray for. Survival isn't always of the fittest. Sometimes it's a team sport and there's little doubt we have a league-leading team on our side.

Enjoy the new pictures.

Wednesday, May 9, 2007 2:14 PM CDT

Anthony is 6 years old tomorrow May 10. WOW! HAPPY BIRTHDAY!

Anthony's class put on a musical last Friday. His mother and grand parents were in attendance. Advanced reports were that Anthony was really into it, and did was expected to do really well. We were not sure as he had not stuck with the program in the past when confronted with a sizable audience. Well he did do really well. He sang all the songs and at times was the loudest voice though maybe not the best voice. Antonhy was one of the Army Ants and was dressed head to toe in cammo attire while his group sang the Army Ant song and marched (in place) and saluted. A definate sign of progress.

There have been no potty accidents since the last update. Our little man has this all figured out.

Our home has two individual garage doors one for each stall. One of the wall mounted openers is much lower than the other. For the first time earlier this week Anthony was able to push the higher one if he stood on his tippy toes, and stretched as far as he could. He is still quite small compared to his school mates, but he is getting bigger.

Monday, April 30, 2007 6:27 AM CDT

Another milestone for Anthony. He is fully potty trained. With three trips in a row over the weekend to go number 2 all by himself we are confident he has this all figured out.

For the third week in a row we were able to sit in the main congregation at church. Anthony did get sad at one point this time, and we took him out, but he had been fine up till then.

After church has been DQ for dinner. Anthony likes to put coins in the Children's Miracle Network bin. When he ran out of coins this time a little girl (2 ish) came up with a coin and Anthony decided to help her, by taking it away from her. Shannon caught him before he could put it in, and made him give it back to her. She then gave him another coin, and had him give that to her as well.

The last two weeks Shannon has had Anthony lick her cone once for each pennies worth of coins he puts in the bin. For a quarter he does 25 licks. We have been amazed at his willingness. He will lick five to 10 times, then grab a napkin to wipe his tounge, but he does get a little anyway.

Anthony should have lost his first tooth by now. The permanent tooth cam in behind the baby tooth and has pushed the baby tooth forward so it sticks out kind of funny. He was in to the dentist "Dr. Soggy" (Saki), but he would not let her do much more than look around in his mouth. He is going to have to go into the OR to be put under for the work. He very likely will have all four front teeth pulled while he is in there as the Dr. feels his bottom teeth should have been out by now too. The Dr. will clean, and X-ray his teeth too. There was talk of doing this in her office, but the anethesia she would use there represses the respiratory system, and that would not work well for Anthony, so the OR is required.

School is winding down for Anthony. He has strung together a coulpe of pretty good weeks. Seems the spring break help him recharge his batteries. He still gets sad on the days he sees his mom there helping with centers. Speculation is that he is getting sad thinking he will get out of some work. He was scolded last week, and stopped crying. We are on to his game.

Sunday, March 25, 2007 5:49 AM CDT

It has been too long since the last entry. Anthony has been doing very well. Too often we only seem to update all of you when Anthony has been ill. This time we have only good/fun news.

Anthony continues to do very well in school. He is starting to read, and really seems to enjoy reading his books. Sometimes he prefers to tell his version of the story as opposed to actually reading the words, but when he does read the words he amazes us. The school year does seem to be wearing on him a little. It is all day kindergarten and he has developed a system of knowing when a school day is coming. If "daddy has to go to work" then he knows he has to go to school. When tired he has been known to show a little Dufresne temper.

Anthony continues to make slow progress with food, but he is making progress. He actually takes food and puts it in his mouth now. He will crunch it in his teeth. Any food that makes it in his mouth he still wants to get out, but he seldom gags now when it is in there. He will even put apple sauce in his mouth, and we know he can't get all of that out.

Anthony has been losing a tooth for over a month. The tooth has moved and is kinda sticking straight out, but has not fallen out. We encourage him to wiggle it with his thumb which he very willingly will do. It does not appear read to come out yet. This weekend we for the first time can see the permanent tooth breaking through the gums.

Now for the BIGGEST news. We hope to take Anthony on a summer vacation this year. Our plan is to go to Fargo to see the Blue Angels, and let him swim in a pool. He loves to do that. Our plan is to fly him up there. On Friday we took him on a test flight to Duluth. Short flights, fairly empty planes. He repeatedly said he would not get on an airplane, but he loves to go to the airport to watch planes. Not a single plane in the sky avoids Anthony's eagle eyes. He loves to rattle of what type of plane it is too, though sometimes he just makes up a name. Ahh, I digress. This trip to Duluth was a "day trip". Our plan was to ride up on an A319, get off, and get right back on the same A319 to come home. If it went really poorly we would rent a car and drive home. None of us slept well the night before, and Anthony knowing "daddy was not going to work" was up at 4:50am and showing Hels' stubbornness refused to go back to sleep. We took off early for the airport got in line to go through security. Anthony did not like waiting in the line, and took off under the rope at one point. Shannon caught him quickly. Anthony did well going through the metal detector, and was delighted when we got to the gate, and could watch planes.

When it was time to board he marched right into line, and down the jetway. When he turned the corner and saw the door to the plane he stepped back, sat down, and started saying "no way, no way...". We convinced him he could see the other airplanes from this planes window. His curiosity got him onto the plane. Once in the seat, and buckled he started in with "time to get off", and was making a little bit of a fuss. He quickly learned how to undo the seat belt, and was prepared to walk off the plane. Shannon and I were pretty close to letting him off. He moved to the middle seat away from the window. One of the flight attendants came over and talked to him, and that took his mind off things for a little while. The flight attendant came back with a "first flight" certificate, a card for an A319, and Anthony's first flight wings. Anthony was unimpressed. Shannon asked how long the drive was to Fargo about that point.

They announced were would have about a 15 minute delay before departing, and that extra time helped us calm him. The plane at the next gate pushed back, and we got Anthony back to the window seat to watch. He could then more easily see other planes taxi by, and take off, which helped a lot. By the time we pushed back he had calmed considerably. He got a little nervous when the engines rev'ed for take off, and got really wide eyed as we left the ground. It was clear he did not know what to think about that. He started saying "we fly really fast, and then we land and get off". We told him yes we will land at Duluth, and we will get off the plane and right back on. We will fly back to Anthony's airport. He did well the rest of the way.

When we got off in Duluth we had to leave the secure area, something we did not plan on. I kind of had to run to get our boarding cards so we could go back through security. Shannon took Anthony into a snack area where he saw a C130 Hercules ("Herky Jerk")take off. We were in the gate just in time for the boarding all rows announcement. No thanks to TSA. The older gentleman running the scanner said we had too much formula along. Four 8 oz cans, or one day's worth of food. He told us we should have only one can, and that the next airport would surely take it from us, but he did not take it. To avoid a fight we would lose we did not bother to tell him that TSA in Minneapolis/St. Paul did not bat an eye at the ammount earlier in the day. Anthony marched right on the plane, and did not complain about anything. He even fell asleep on the short flight home. We had to tell him we flew right over Grandma Marge's house and lake.

We stayed in the secure area when we returned to MSP so we could feed him, as he was over due. He loved watching the planes, the "bullet train", the "golf cart cars". He enjoyed riding the city bus, the tram/train, the escalators, the moving sidewalks. Most of all he like watching all the planes, the "C130 herky jerks", the "Saab turbo props taking off" (also called "another red guy taking off"), and all the 757's, A319's, A320's, DC9's....taking off, and "folding their tires". After the rough start the day went very very well!

Thursday, February 1, 2007 8:13 AM CST

Ahh it is Ground Hog Day eve, and Anthony gets to sleep in. There is a late start for school today. Anthony missed 2.5 weeks of school and finally went back yesterday. He seemed to do very well. He also had therapy yesterday afternoon which also went well. We thought he would be tired and a little cranky by the time therapy came along, but he amazed us once again.

The school absence was due to an illness of course. It started as pink eye, and as is always the case for our boy with bad lungs, it became something respiratory. We maybe let that go a little longer this time hoping he could start fighting some bugs on his own. It turned into a sinus infection which had to be treated with antibiotics.

Anthony has progressed with his "eating". Now he will put chips and "creetos" (Fritos) in his mouth, sort of crunch them, and "...spit it out." At therapy he will allow Dr. Jean to scrape a creeto across his molars and he does not even gag.

Progress has been very slow to be sure, but he really is moving forward. He has come from fighting any attempts near his face, to willingly placing things in his mouth. Yes, even things he shouldn't. Last night during a feeding he picked up a piece of fuzz off the floor and put it to his lips. His intent was to puff it out. It was just interesting to see him pick something up and go to his mouth with it like that. He has also been spotted mining for gold in his nose, and of course putting that treasure in his mouth.

Such a little boy.

Tuesday, January 2, 2007 10:31 AM CST

Anthony enjoyed a busy holiday season. The only blemish was a brief battle with a virus that led to laryngitis for a few days last week. He was over that and ready for school to start again this morning.

Anthony split Christmas Eve between Grandma Marge's and Grandpa and Grandma Dufresne's. He had a lot of fun at both places, and was more than happy to open many gifts. He is really into the gift opening. He found a wrapped box of chocolates on a table in the basement yesterday, and opened it dumping it's contents on the floor. Apparently he was unimpressed as none had wheels.

Cars the movie has been his favorite of many favorite toys. He has watched it many many times. He often recites his favorite phrases as he roams the house.

Yesterday Anthony was able to get out and sled for the first time this winter. He had a great time. The neighbor girls invited him over to slide on their hill, and he really liked sliding with them.

This past year was really big for Anthony, and with continued good health 2007 looks to be even better!!!

Tuesday, December 19, 2006 7:57 AM CST

Anthony has turned the corner, and has been feeling pretty well lately. He is back in the swing of school, and is making progress. If only his mom and dad were coming around like he has.

Over the weekend we were invited to join his friends Christa and Ryan at a hotel in downtown Minneapolis. Anthony had much fun in the cold pool. We then went to an early dinner. Anthony was not as happy about this part of the trip. Following dinner we watched the Holidazzle parade. The balmy weather made it easy to hang outside while waiting for the parade. Anthony did not like the wait, but he did seem to enjoy the parade. Once back home he told us the snowman was his favorite part of the parade.

Tuesday, December 12, 2006 1:22 PM CST

Anthony is back in school. He was tired and crabby when he got home yesterday, but made it through school okay. He has not been as enthused to go to school lately. It seems he got used to being home, and playing. He always is happy when the bus comes though. Today he was happy to play in the rain puddles while waiting for the bus to arrive.

It was so nice this past weekend that we were able to take him down to the lake to skate both Saturday, and Sunday. He really liked it, and was able to walk/skate himself a little on Sunday. He has mastered getting back up after he falls. Unfortunately he falls on purpose sometimes, as at his young age that can seem fun. We took one of his kites down as well, and he was able to fly that a little too.

Because we have all been sick a lot lately we have not been into the Christmas spirt. We need to get a few things out so he can start getting excited about it.

Monday, December 4, 2006 7:41 AM CST

Well I spoke too soon. Anthony got sick again and missed four more days of school last week. He was better, but had a horrible/painful cough. We took him in on Saturday, and he was put on antibiotics for a possible sinus infection. It will be a 21 day course. He is not contagious, and can go to school, so we plan to send him today.

The whole house has been ill for the second time in about 3 weeks. Shannon also has a sinus infection, and started her antibiotics about 12 hours before Anthony. I have just had another virus/cold, and seem better today, though not 100%.

Despite the illness Anthony has been his happy energetic self most days. Sure he yelps occaisionally, but all in all he handles the pain/discomfort quite well. He was happy to mock his mom last night during a feeding. She sneezed. Anthony then faked a sneeze, and said "god bless you Anthony".

Wednesday, November 22, 2006 8:05 AM CST

Anthony has weathered his first Kindergarten illness fairly well. He did miss 4 days of school, but returned for the 3 days this week. For the first time in a couple months of school he has been really tired when he gets home from school. This is partly due to the lingering effects of the illness, and partly due to the fact he has been getting up way too early. He was up again today at 5:30am ready to party.

Maybe we can get him back on track over the long holiday weekend.

The steroid burst ended yesterday. They have had Anthony wired for sound for several days. He moves quickly most of the time, but it has been quite noticable the last few days. He played with his Whack-a-Mole game Monday night for about a half hour at a break neck pace. He was all but pounding those poor moles throught the floor, and then when it said "you win" he would fly out to the stero cabinet which he uses as a mirror, and say "Anthony! You win!" "Way to go Anthony!" "You are the best Whack-a-Moler!". He was quite proud of himself.

Monday, November 13, 2006 10:09 AM CST

Anthony got through just over two months of school before getting his first bug. He has had a little cough for a few weeks, but this weekend it finally caught up with him. We started a steroid burst last night, and have been throwing extra nebs at him.

He had coughing fits that woke him Saturday and Sunday night. The Sunday fit dropped his O2 saturation to unhealthy levels, so Shannon gave him oxygen. We are pretty sure the steroid burst will do the trick, but only time will tell.

Anthony though he does not eat was very excited for Halloween this year. He was dressed as Murray Wiggle, of the Wiggles obviously. Most thought he was a rock star as few of our neighbors know the Wiggles.

He was not really up on saying trick or treat before we went out, so we got him singing a Halloween song from his favorite cartoon, Little Einsteins. He quickly mastered the song. Once we got him to stop trying to enter ever house he did a great job. He gladly sang at every house he visited. He was doing such a great job with the song he was rewarded with lots of extra candy. Not that he cared. He had a great time which is nice as historically Halloween has not been his best "holiday".

His tune was:

"We are here to trick or treat, trick or treat, trick or treat. We are here to trick or treat, Happy Halloween!"

This was sung to a tune from some famous composer, Edvard Greig, I think.

Thursday, October 26, 2006 1:04 AM CDT

FYI: We just passed the one year decannulation anniversary! Yeah! It seems like a lifetime and a half ago, so much has happened.

He's a lot taller, 50% for height and 25% for weight.

He's in school full-time and LOVES it.

He's working the OT/feeding stuff like crazy. Slow but noticable progress.

He's potty trained, but he puts a pull-up on himself for #2.

He's starting to read and write.

He sings whenever he wants. Hey Diddle Diddle and the National Anthem are current favorites.

He's still not a morning person.

Friday, October 6, 2006 10:30 AM CDT

School continues to go well for Anthony. By all reports he is doing great. So he has avoided illness which is our biggest worry. He has had a cough the last week or so, that is only seems to bother him in the morning, or over night if he wakes. We have been giving him an extra neb in the evening to see if that will help.

So far Anthony has only had a couple evenings in which he was really tired. He has not let that slow him down on those nights, he has just been a little crabby.

While the weather is still nice we have been trying to get him to a park in the evenings to let him work on his strength. He is making strides in what he can do, and what he is daring enough to do. He likes to hang from monkey bars, or rings, and swing. Often he will bring his toes up to his head. Thankfully he is still showing a healthy respect for heights.

We were headed to a park in Stillwater last evening, and noticed two hot air ballons along 36. We detoured to another park close to the ballons, and Anthony got to watch one try to land in the park. It ran out of room, and went back up, and they both landed somewhere on the other side of the highway. It was a nice night, and that was a nice surprise for Anthony.

When we got home he sang a birthday balloon song to grandpa on the phone. It was something he made up at the time, and was really cute.

Wednesday, September 13, 2006 8:08 PM CDT

Ahh, where have we been since the last update...???

Anthony started all day kindergarten on September 5th. He started in true Anthony style too. He was awake at 3:30am raring to go! He was back to sleep about 4:30, and was fighting mad when Shannon woke him at 6:30 to catch his 8am bus.

Yes 6:30 seems early, but Anthony's morning routine is a little different than most 5 year olds. After his nebs he needs some therapy and to be fed. After the feeding his tummy needs time to settle so he has a chance of keeping his breakfast down.

Despite the rough morning Anthony did great, but we were sure we would have a tired cranky little boy return home that evening. Shannon reported that he came bouncing off the bus and was ready to play. He was so happy and fired up that we took him to the park to wear him down. He did sleep well that first night!

Anthony has repeated that early start a couple of times since, but always does well at school anyway. The teacher and staff are amazed at how well he is doing. His class is K-1, so half the kids are kindergarteners, and half are first graders. Today at story time the teacher was going through the spelling of one of the characters names, and asking the kids what letters come next. Anthony turned heads at one point when he correctly stated before anyone else in the class that the next two letters were "LL". He does not always appear to be paying attention, but time and again he demonstrates that his is taking it all in.

Enjoy the new pictures of our little boy!

Tuesday, August 22, 2006 7:25 AM CDT

It has been a busy summer for Anthony. He has been in school, going to therapy, going to swim lessons, parks, and just being a busy growing little boy.

He was sick a couple of weeks back with a little bug that turned into a mild case of pneumonia. A couple courses of antibiotics, and he is now better. His voice was a little hoarse during the illness which delighted him greatly. He would squeal in front of the mirror as if he could not believe the sounds were coming out of his mouth.

At the tail end of the illness we were brave enough to take him on his second adventure away from home. We took him to Duluth for a night. It went so well we stayed two nights. Anthony likes to travel, and likes hotel rooms. He seemed less enthused with the ships (he got to see several come in). He really disliked the horns. He enjoyed throwing rocks into the lake, but really wanted to jump into the lake. His highlight was probably the pool. It was warm, and he eventually was brave enough to bounce around in the shallow end (3ft) without grabbing one of us.

Hard to beleive, but Anthony will be starting kindergarten two weeks from today. Though he has been in preschool for 3 years it still seems like a big step to send him to kindergarten. Had he been born on time (Sept) he likely would not be eligible to start kindergarten this year. Lately he has been looking as though he really is ready.

Thursday, April 27, 2006 0:26 AM CDT

Anthony chose a VERY visible color for his cast. The yellow option was really rather dull, so it was a good choice.

He was quite good for the entire process even though his arm is even more sore than it was Monday or Tuesday.

He got a good scrubbing in the bathtub before we left for the appointment, but the good news is he'll only have to suffer 4 weeks of sponge baths....We go back in four weeks to have the cast removed. More x-rays are taken and the doc said kids *usually* go home without a cast with this kind of break.

Let's hope our bell-curve pushing little darling is well within the bell curve on this one.

Tuesday, April 25, 2006 1:22 AM CDT

So, you ask, why is there a picture posted of Anthony from two years ago when he had a purple cast on his right arm? It’s to let you know that tomorrow or Thurs we’ll be posting a picture of a new cast, this time on Anthony’s left arm.

That is correct: Anthony has another broken arm.

The break is just above the elbow so the next cast will be from shoulder to hand. My guess is it will be yellow, if that’s available, because it’s his new favorite color.

I only heard the fall, I didn’t see it. It’s not uncommon to hear Anthony go “thump” but it’s usually a toy or a book and if it’s him, he picks himself up and goes on. This time he cried like a banshee so I knew he was hurt. He didn’t want to move his arm and I noticed swelling above the elbow on the bicep side. His pediatrician said it’s probably broken so take him to the ER.

He was quite calm for the ride to the hospital, thanks to semis and construction equipment on and along the road. The large amount of swelling around his elbow got us sent to the cast room right a way. The x-rays didn’t show any breaks obvious to us “civilians” but the pediatric orthopedic surgeon said the humerous has a split at the elbow. She ordered a comparison x-ray of his right arm to determine whether or not surgery was needed. Turns out she liked what she saw and feels the break can be managed conservatively with a cast. All of this was relayed throught the ER doc. We never spoke with or saw the orthopod. The nurse put a splint cast on his arm, put his arm in a sling and they sent us home with a narcotic for (Anthony’s) pain.

We see the orthopod Wednesday afternoon for the permanent cast. By then the swelling should be down, if not gone, and the pain subsided a bit. Surgery is still a possibility, but we’ll know more after another round of x-rays on Wed.

He’s been VERY brave through all of this, needing a minimum of OTC pain meds. Right now, he’s sleeping quite comfortably. Let’s hope that lasts for several more hours.

Monday, March 13, 2006 11:27 PM CST

Anthony is doing a bunch of big boy things now that he feels better (despite a couple of nights w/ a little oxygen).

First, he finally is getting the hang of this potty business. We've gone several days now - including a couple of trips outside the house - without any accidents. We know he's done something somewhere when we find him running around half naked, so it's a matter of figuring out where the diaper or underwear is and what's in it. Much to our surprise and delight, we usually find what we're supposed to find in the porcelain or plastic potty. He's keeping his big boy pants dry and even pooped in the potty chair on his own. He still needs a pull-up at night because of the drip feeding, sometimes prefers to poop in the pull-ups and dump it in the toilet, and doesn’t like anyone to flush the toilet, but this is real progress. And using 1-2 pull-ups is quite the pay raise compared to 6-8 a day!

On Saturday he decided to sit in a swing like he’s supposed to. He still needed to use the bucket swing on our last trip to the park this fall because he doesn’t hang on with both hands and didn’t balance right on the regular swing. I was shocked and amazed when I went downstairs and found Mark pushing our son higher and higher on the swing he has in the basement - a birthday present last year. He doesn’t yet have the coordination for pumping his legs but he tries by pumping them pretty much constantly, so he simply asks for what he can’t do, to go higher and faster. I made the mistake of asking him if he wanted to go for a walk while he was swinging. He said yes and wanted to go in mid-swing, figuring out the hard way that he needs us to stop the swing for him in order to avoid a painful dismount. He could swing for hours at a time. He asks to go downstairs several times a day, even after feedings. His code phrase for this is to ask to count the stairs, thinking we’ll be a sucker for something so educational.

Also on Saturday, we ate at DQ for dinner. I got some French fries so Anthony could play with them (what an excuse, huh?!) He likes to hold a hot, salty fry against his lips and sometimes lick the salt. He does this until he smashes or pulls the fry apart. Then it’s broken and he wants a new one. On a whim, Mark asked him to take a bite of the fry and he did. He simply broke it with his teeth and nothing went in his mouth, but he did it without gagging or freaking. Doesn’t sound like much, but it’s actually quite impressive.

Tuesday, February 21, 2006 7:02 AM CST

Anthony continues to make very slow progress from this latest month long illness. He is now off of oxygen for parts of his day. If he runs too much his SATs drop, but he is showing he can recover on his own some. He has been is a great mood the last few days indicating that he is feeling much better. Non stop talking, telling big stories, laughing, and saying "that's silly" or "oh yeah".

He has also turned into a Price is Right junkie. He will holler "come on down" or "brand new car". He was exited when some kid won a "big red car" a "wiggles car" the other day. Seems he needs to get of the oxygen completely so he can go back to school.

His mother is also struggling to shake whatever it is/was. Shannon was put on another round of antibiotics over the weekend, and is still miserable.

Maybe one more week and this illness will be all behind us.

Friday, February 17, 2006 1:41 PM CST

Anthony has had a pretty good week. He has slept better, and has needed less oxygen. Though he continues to try, he is still unable to get rid of the oxygen support. More and more each day he will remove the nasal cannula, thus declaring he does not need it anymore. We check him within a few minutes, and the red numbers prove to him, yes, you still do need O2.

His spirits have improved tremendously, as has his energy level. He is not back to full strength yet, but is running from room to room which he was not doing during the height of this illness. He is very very happy though. So happy that be gave his mom a very personal birthday present. He took great pride in "Cookie Monstering" about a dozen heart shaped sugar cookies his mom had just frosted. While mom was on the phone in the office our little angel was in the kitchen making quite the mess. He had a pile of crumbs on the floor, and the bench seat. His nice dark hair looked blond there were so many crumbs in it. Mom was not real happy with the present, but sure delighted in telling the story of how naughty Anthony had been.

Anthony took a nap yesterday for the first time this week. His mother likes to point out, "It is a lot of work being so naughty".

Monday, February 13, 2006 7:33 AM CST

Anthony had a little better weekend. He was happier, and had enough energy to wander the house a little. Sunday morning he seemed as though he might be going down hill again, but by late afternoon was feeling good enough to try going without oxygen. He twice removed the nasal cannula, and both times we proved to him he still needed the O2. We are able to do this now using the oximeter to show him that his blood SATs are below 90 (red numbers). Though he does not want it back on, he nolonger fights us when we show him the red numbers.

Anthony again was asleep early, but due to the full moon, or feeling better, or who knows what, he was up from 1:30 to about 4:30am. He was happy as a clam, so maybe he is turning the corner on this latest series of set backs.

Wednesday, February 8, 2006 8:10 PM CST

The good news is we now know what Anthony has been battling this week. We were sure his right ear would be infected, but Anthony being Anthony has a left ear infection as well. Yes, and double ear infection. The assumption is that the sinus infection is also still in the mix. This news has earned our little boy his fourth and fifth courses of antibiotics. He has started on Augmentin for 3 weeks, and in five days he will get another 5 day course of Zithromax. He looked slightly better tonight, but is already in bed for the night. For the third night in a row he is down before 8pm. Poor little guy does not have the energy or strength to walk from one end of the house to the other.

His xray was negative for pneumonia as we expected. He had to stand for the xray. This was new for him. The only way they pulled this off was because he did not have the energy to do much more than yell his displeasure.

Wednesday, February 8, 2006 7:13 AM CST

Anthony continues to struggle with some type of virus. He is on his third brand of antibiotics, and seems to be getting worse, not better. To top things off Shannon is miserably sick. It has been a very tough stretch. Anthony is going to see his pediatrician today for yet another chest xray. We doubt he has pneumonia, but have to be sure. It seems the sinus infection, and ear infection are both back based on Anthony's behavior.

Usually the grandma's are able to kick in an help when the going gets tough like this. Sharon was helping, but is now sick her self. Marge wanted to come, but we told her to stay away for her own health, and now she is having a problem with a rib, and is heading to the doctor today if not feeling better.

Grandpa has now been called into help, and we are fearing he and I will be next to get the bug.

Anthony made it to two days of school in the last few weeks, and will be lucky to be back before March at this rate. Poor little guy needs to be at school.

Friday, January 27, 2006 10:49 AM CST

Winter may seem over, but Anthony's cold continues. The omnicef seemed slow to ease the sinus infection symptoms. Anthony started showing signs of having an ear infection on Sunday. After a few calls to doctors the plan was to use a decongestant to ease Anthony's pain. The docs thought the omnicef would clear any ear infection, and what we were seeing was Anthony's reaction to sinus pressure. Yesterday Shannon brought him in to his pediatrician. She confirmed the ear infection, and had us switch his antibiotic to augmentin, and start another round of steroids.

Anthony was delighted to be out and about yesterday. He was a little angel for his doctor. His great mood carried into the evening. He was so wild it was hard to believe he was sick, and still needed oxygen.

This morning he is happy, but definately looks ill. Sick or not he may get a ride in the car just for the change of scenery. It picks up his spirits.

Shannon after 5 long years is finally off on a vacation. She left this morning for Vegas with a friend. It was hard for her to leave, but can you think of any mom that really needs a break??!! She called twice from the airport, the second time from the plane, (an Airbus "A319-20" as Anthony would say) I think she stayed on the plane and is actually on her way.

The grandma's will be helping with Anthony this weekend, so Shannon will worry less.

New photos shortly...

Monday, January 23, 2006 6:57 AM CST

The cold that never ends....

Anthony went in to see his ENT doctor Tuewsday for a follow up for the stoma closure, and was diagnosed with a sinus infection. He was put on antibiotics, and has gone down hill ever since. Tuesday his preschool teacher had to run him into the class room from outside as she had never seen him quite so blue. He was given a neb, and sent home with grandma and grandpa while Shannon and I stayed behind for his IEP (individual education plan) meeting.

Anthony continued to get worse as the week went on, and needed oxygen. Shannon brought him to ER on Friday when none of his other doctors could work him in, and Pulmonology said to take him to ER). They did an X-ray and ruled out pneumonia. They did not test for RSV saying they would not treat him any differently if they knew it was RSV. We were sent home with another order for steroids, and double nebs every 3 hours.

The nebs seemed to help a little, but by yesterday he was hollering pretty good, and pulling on an ear. We called Pulmonology and were told the antibiotic he is on would clear up an ear infection, if he had developed one, but that the sinus infection would be slower to leave. Anthony's pain and discomfort seem to be due to the gunk we can hear in there. We were told we could use plain Children's Sudafed to help break up the gunk. Of course we could not find any plain sudafed, as they don't make it anymore because it was too often used to make meth. A few phone calls later we were cleared to use sudafed with a cough supressant.

It was a long weekend with a sick little boy. Every night we think he will turn the corner, but each night he wakes up several times with discomfort. The last two nihgts were slightly better, but he still needs oxygen, and lots of meds. Apparently he wants to make his mother worry this week knowing she leaves for her company's trip to Vegas.

Monday, January 16, 2006 3:32 PM CST

Anthony is off the steroid burst, but his cough persists. He was up in the wee hours again this morning coughing. We were able to get him back to sleep without too much trouble.

We took Anthony to see a Toy Train exhibit in Oakdale yesterday. Anthony was entertained for 15-20 minutes, then he was off exploring the building. He quickly became fasinated with the restrooms when grandma used them. He was bound and determined to check them out, and resorted to his first real sit on the ground temper tantrum when we continued to steer him away.

We picked him up, and gave him a choice of watching the trains, or going home (spelling out that attempts to see the restrooms meant going home). True to his nature we were on our way home shortly after he was set down.

The car ride was probably more fun for all of us anyway as Anthony spied a "sever-four-seven jet airplane", some redtail hawks "flying wAAAAAAAAy into the sky", and delighted in stating the light would turn yellow next, then red, then green.........

Wednesday, January 11, 2006 6:42 AM CST

Anthony has been battling a cold since the holiday's it seems. We finally resorted to a steroid burst. Today should be the third and final day for that. With the steroids we have a very active boy on our hands. He usually moves about the house at high speed, but with roids on board he really flies!

Even with the extra energy he has needed long naps after school this week. After the naps he thinks he should be up all night.

We took him out skating last weekend. All the grand parents were able to come watch. Anthony was under whelmed. That is until the tractor came out on the other rink. I carried him over there, and he stood in the snow bank happily watching the "green tractor", "a John Deere" as it brushed the rink clear. For what it is worth, Anthony was able to stand himself up a few times, but moving after that was a challenge (probably because the ice was not very good).

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