Another Great Week at School

The letter "C" was the focus this week, and Nolan had a blast. His Universal Pre-K class is very creative with projects: the kids made cats from cups, glued cotton to a big letter "C," and sang C songs (The Color Train and Color Farm).

The longer-term theme is apples - so the class read about Johnny Appleseed and made a Johnny Appleseed puppet. They made applesauce in class and tasted some cider*, along with creating apple prints from halved apples. Nolan comes home exuberant from all these activities. He just loves them!

Next week is going to be even more fun: the class is going on a field trip to a local cider mill. Nolan is so excited he can hardly wait!


*While Nolan is normally not allowed apples due to dietary restrictions, we allow him to partake in classroom activities with these foods - we just reduce the volume of cider, etc. 

In Which Nolan Gets to Skip All the Screening Tests

The beginning of school has brought a full load of screening tests for every child in Universal Pre-K. First came the speech screening. I noted that he was already receiving services for an articulation delay secondary to his hearing loss. They went ahead and talked to him briefly, and simply noted "we understand he is already receiving services - he is a talkative little guy!" Basically, he got to opt out of the screening process and play with toys.

Next week is the vision screening by the Lion's Club. Since we found his vision issues last year, he gets to opt out of this one, too.

I'm waiting for the hearing screening form to come home - we should really just get a big form at the beginning of the year that says, "Um, yup - Nolan has everything you are going to be screening for. Screening tests not needed, thank you!"

Nolan doesn't mind skipping these screening tests - I suppose the one upshot of having speech/hearing/vision issues is that you get a little more time to play at the Lego table while your friends are getting tested!

September ENT Visit

I took Nolan in for his routine ENT visit. Of course, with Nolan, there is almost never anything "routine" since he has a plethora of ENT problems.

Fundoplication vs. C-Pap

We discussed putting off the fundoplication indefinitely, though I realize we may have to revisit the issue again in the future. Our ENT feels that Nolan's "awful August" was directly caused by the C-Pap - he started C-Pap therapy in August and became very, very ill with retching, choking, and exacerbated reflux symptoms. Apparently, they've seen this reaction in the other kiddos with severe acid reflux. On the other hand, Nolan is doing extremely well this month, and seems to be tolerating the full-face mask much better than the nasal masks. Either he has adjusted or we're just having a great month. Time will tell, but I have every finger and toe crossed that the full-face mask is simply negating some of the issues of the nasal mask (the nasal mask forced air directly into his nose, whereas the full-face mask simply pressurizes the air around his entire face).

Balance Issues 

Nolan was quite wibbly-wobbly in the office and fell a couple of times. We've seen this at home a lot, but it is the first time he's done it in a doctor's office. We've been attributing it to his sometimes wonky gait or to his amblyopia (both of which can cause "clumsiness"), but she thinks he has something vestibular going on. It would make sense since he has had a progressive hearing loss, but we'll see. She wants to do some sort of test in a spinning chair, but I don't really see the point. If it is vestibular, it isn't like we can do anything about it. She does want him to avoid contact sports that might result in a blow to the head because of the balance and hearing issues - which is strange, because he doesn't have enlarged vestibular aqueducts (these are the precautions usually given to kids with that "issue" who still have residual hearing). I'm letting it go - he's a little clumsy now and then, but it isn't the end of the world (and it isn't really a "fixable" thing, anyway).

Sinus Issues

His sinuses are horrible, of course, but they have been horrible for the past three years. With his form of acid reflux, the acid shoots past the esophagus and hits the nasal passages and airways. She ordered a CT scan of his sinus cavities to see how much damage has been done: cue episode 547 of "Reflux Sucks." Since he is a C-Pap user, he may require intervention with his sinus cavities, since they are chronically infected and he can no longer breathe through his nose. Another thing that I'm not too worried about, but we'll see what the CT scan shows.

The Dreaded Earwax

He had wax in his left ear, so we had to take a walk to the procedure room and use the Papoose Board of Doom. Since he has long-term tubes in his ears, we can't use DeBrox or any of the other over-the-counter wax  removal products. We're stuck with the ENT's metal earwax removal device, which Nolan loathes. Actually, loathes might be too kind of a word. He completely flipped out once we went into the procedure room - he remembers this room and hates it with an unparalleled passion. I can't say as I blame the kid.

A Reward for a Difficult Day at the Doctor's Office

After the wax removal, Nolan's ear hurt too much to put the hearing aid back in place. He was rather unhappy with all of us, so I tried to cheer him up with a trip to McDonald's. We don't go very often, but I looked up a McDonald's with a great indoor playground, which happens to be right next to the ENT's office. They had eating booths that looked like trains and a massive indoor playground. Nolan was happy by the time we left (thank goodness).

We will have the CT scan performed (outpatient, no sedation required) and return in early November to discuss the results with the ENT.

At least October is nearly doctor free!

Mr. Hungry

Whatever caused Nolan's problems in August seems to be gone, and I am SO very happy that his tummy seems to be working again. He has been absolutely ravenous lately, which is so wonderful I could literally do a happy dance.

The sleep neurologist said that one of the ways we could tell if the C-Pap was working was by Nolan's growth. He should experience a big growth spurt over the next few months. Judging by his appetite this week, I'd say we may be seeing one sooner rather than later. With the full-face mask, Nolan is actually starting to get some benefit from the C-Pap machine. We can still hear stridor (that comes with the laryngomalacia territory), but I think he is actually getting some quality sleep for the first time in his young life. Last night, he kept the mask on until 4:00am. This means he got 8 complete hours of sleep. For the first time, ever.

Yesterday, he ate breakfast, lunch, dinner, a string cheese, a pear, and 8 cookies.*

Grow, Nolan, grow!

In other news, still no word on the microarray results. This doesn't really mean anything one way or another - some cells just take longer to grow to obtain results. I did leave a message with genetics today to see if they'll call me back with some news (any news).

Nolan has an ENT appointment on Monday, and we are going to put off discussion of a fundoplication indefinitely. Despite our initial reservations and the horrible month of August, Nolan seems to be doing just fine on C-Pap and I can't see any reason to have a permanent, irreversible surgery performed on him when less invasive methods are working.

Here's to a happy, hungry kid!

*He wasn't exactly given permission to eat eight cookies. They were within reach and Nolan figured it was better to ask for forgiveness than ask for permission. I'm still in shock that he could down 8 of them!

Still Waiting

Nolan's micro-array (oligonucleotide array) results should be coming back soon. We don't expect to "find" anything on this test, but there is still some anxiety during the waiting period. I have no idea why I am anxious - the results will likely be ambiguous. A micro-array is only useful when a deletion or duplication is actually found, with known significance. Micro-arrays don't detect point mutations or frameshift mutations (small changes to actual genes): they only detect the addition or removal of chromosomal segments. The chances of Nolan having a deletion or duplication are pretty low.

Anyhow, the possible results (and their ramifications) are:

Normal Microarray: No detected deletions or duplications. This means that we will know nothing more about the cause of the various medical issues. They could still be genetic, but not detectable on this particular test. On the other hand, we will have ruled out a lot of other syndromes. Essentially, we'll be in the same place we are now - watching and waiting to make sure nothing new pops up, and not knowing what to expect.

Variation of Unknown Significance: They may find a deletion or duplication which is not currently catalogued. Like Tigger, "he's the only one!" Some deletions or duplications may be harmless - to determine the likelihood of this scenario, we would be tested alongside Nolan if this situation occurs. If we also carry the deletion or duplication, it is likely harmless (because we don't have the health issues). If we don't carry the deletion or duplication, then it is more likely to be the cause of his issues. The geneticist would have to research all the genes affected in the region of duplication or deletion. This finding is a real gray area.

Known Deletion/Duplication Found: A known, catalogued deletion or duplication is found. If this occurs, then we will have a name and a cause for everything. This is unlikely, because Nolan doesn't have many of the features of known microdeletion syndromes. On the other hand, there is wide variance and there are a LOT of microdeletions/microduplications known to cause multiple health issues.

The geneticist said it would take a week to 2 weeks to get the results back. Tomorrow is the 2 week mark, so every time the phone rings, we are on pins and needles.

New C-Pap Mask and a Happy September

We finally managed to get the full-face mask for Nolan to try out. While the Sleep Neurologist wasn't keen on the full-face mask option (many children swallow air with these masks), we thought it was worth a shot. If Nolan started swallowing air, the effects would be obvious pretty quickly - he would develop a distended belly, belch, or get sick. The other night, we put the new mask on and it was wonderful.

There was no air blowing into his eyes, to pressure marks around his flat nasal bridge, and the whole thing was fairly comfortable. This mask is also great when he is congested and needs to breathe through his mouth. The only negative is that he can't scratch is face, or wipe away tears if he needs to (he often has melt downs at bedtime, and having to put on a C-Pap mask at night certainly doesn't help with the evening tantrums).

Still, this mask is the best of the lot so far. He insisted on a nasal mask last night, and we let him have it since he is not congested. He made it to about 2:00am, but with multiple air leaks around his eyes. We're going to give the full-face mask another shot tonight.

I have to admit, I am much relieved that Nolan is doing better this month. August was simply awful. His reflux was at an insane level, he was cranky every single day, and the congestion/gagging/choking were terrible. This month seems to be MUCH better. His reflux is back down to its 'normal' level (if having severe reflux is ever normal) and he is eating, playing, and laughing again. He comes off the school bus with a bounce and is always excited to talk about his day. Today was show and tell, and thankfully we did not have to go in search of a Giant Frog this morning. He took in an airplane and wore his flight jacket to school.

Today is his first day of a Creative Arts class that he will be taking on Fridays. He'll be drawing with charcoal and learning about black-and-white art. I love having a happy boy who is thriving alongside his peers!

Sleep Center Appointment

Nolan is quite the nature boy these days. This is mildly surprising, since he used to have a very strong fear of plants. He has been spending quite a bit of time on the edge of the woods, searching for newts and frogs - though he's a bit nervous about venturing deeper into the forest. That suits me just fine - a little healthy caution is never a bad thing!

He came home from school this morning with one "dead" hearing aid - his battery died at preschool. I asked him why he didn't tell his teacher (she has extra batteries), and he simply said, "I don't care if I can't hear with one ear." Sigh....

I'm going to start replacing his batteries every five days to prevent the batteries from dying on him during class. They used to last about 8 days (without the FM system running). With the FM system in school, the batteries last about six days. I figure if I change them every five days, then we should be able to avoid any problems during the school day.

I also found out that Nolan is changing his hearing aid program. He came home from preschool the other day and it was set to the regular hearing aid program (not FM). I told him to leave his program buttons alone, and he said, "I don't want to listen to my teacher all the time."

I think I have found his super power - he really does have the power of selective hearing! Stinker.

We went to the sleep center today, and he had his actual appointment. His lungs sound a little junky, but nothing too serious. The back of his throat looks good, and his weight is fine. I was relieved when the sleep center doc told us that 4-6 hours per night was absolutely fine for C-Pap use. Nolan may never get in a full night's sleep with the C-Pap, but most growth hormone is secreted during the first 4 hours of sleep. If he gets "quality" sleep during those first four hours, then that is "good enough." He is still very fatigued and has a hoarse voice- that is what we will live with since he has such severe reflux.

I did ask about getting a full-face mask, and he recommended against using one. Apparently, a lot of little kids are "aerophagic" (seriously, I learn a new word every day with this kid). If a full-face mask is used, Nolan could swallow air all night long and end up vomiting into the mask. Or he could just end up belching a lot with a distended stomach. On the other hand, he can't really use the nasal mask when he is congested. And with the airway reflux, he is congested all. the. time.

The respiratory therapist called me and said she does have a sample of the full-face mask in stock. We could try it - if he is "aerophagic," then we'll know right away. If not, then it may be a good solution for him. I'm happy they have one in stock - it lets us try before we buy. I'll pick it up tomorrow when both boys are at school.

Next week is entirely doctor free, so we are going to enjoy the down-time!

September the Eleventh

Ten years ago, I woke up to a news announcement on my alarm clock. I was thoroughly confused: why was Peter Jennings talking about the Twin Towers? My mind couldn't make sense of it, but my first thought was they were discussing the 1993 bombing of the towers, and it must be some sort of anniversary. As I woke up, I realized this was not an anniversary of the 1993 bombing, but something entirely (and horribly) new.

I switched the TV on to watch the first tower fall. The shock was intense - and I called family as I got ready for work. As it turns out, my dad happened to be on a plane that day. And we didn't know where he was. At the time, we only knew of the three planes, and the worry was sickening as we learned of a fourth, unidentified plane that had been hijacked. A while later, we learned that my father's plane was grounded in Las Vegas - I was relieved that he was safe, but profoundly sad for all those who lost their lives that day. I spent much of my day at work going from the conference room where someone had rigged up a TV for news coverage, to the lab where we were making a product.

Ten years later, I remember that day vividly. The silence of the skies, with no airplanes in sight. Waiting for my dad to make his way home from Las Vegas (via rental car). Watching the news reports roll in with more and more horrible news.

My boys are far too young to have any knowledge of that day, and I envy them their innocence. When they learn about that day in school, it will be an event that "happened a long time ago." For now, I am glad that they live in a secure and free country, with access to healthcare, education, and the safety to express their opinions and beliefs freely.

We went to Nolan's preschool open house today. We are sending him to a second preschool, on Monday and Friday afternoons. This particular preschool has a wonderful program on Mondays called the X-Cel program, aimed at higher academic standards. Since Nolan's TOD is working with him on basic rhyming and reading concepts, this class will reinforce those ideas. On Fridays, he will attend the Creative Arts class - they do things like draw with charcoal, make mosaics, and paint on real canvasses. He starts this program tomorrow, and I am sure he will get a lot out of it. Matthew also attended this preschool, and it really helped him develop some artistic skills (and exposed him to some higher academic concepts like even and odd numbers/sight words/weights and measurements).

I am very glad that this September the Eleventh involved preschools, happy children, and nothing eventful in the news. My heart goes out to those who mourn and grieve friends and family lost on that fateful day ten years ago.

Updates and Some Good News

It has been a rather long week. Matt started going to school full-time this week, which means he boards the bus at 8:15am and gets home at 4:10pm. His days are very long, and he is only five years old, which means he is one tired little boy by the time bedtime arrives! Nolan's days are definitely more manageable (8:15am-11:35am), but we've had several appointments this week.

Monday was supposed to be his sleep clinic appointment (yes, the person scheduled it for Labor Day). Unfortunately, the entire office was out from September 5-September 13 and failed to notify us of the cancellation. I tried to call to confirm the appointment prior to making the drive up to Dunkirk, but their office phone simply rang (no one had heard of an answering machine, I suppose). We ended up driving to Dunkirk and finding a note pinned to the window stating the office was closed for the entire week. There's nothing like spending 2 hours in the car for no reason! We're going back to the sleep clinic on Tuesday the 13th.

Tuesday was the Cleveland Clinic appointment, which went well and we obtained some direction regarding the fundoplication decision. On Wednesday, Nolan started his weekly visits with a Teacher of the Deaf (TOD) to help with identifying any gaps in his langauge development. Nolan is able to rhyme and is working on "A" level reading worksheets (a kindergarten level), so we aren't really too worried about his progress. He does have some random vocabulary gaps, though, so we are working to fill those in.

Thursday was the ophthalmology appointment in Erie - we weren't sure if we would have to patch or not. With his falling issues lately, I was concerned that his vision might not be improving well enough. As it turns out, he is doing VERY well with his glasses. He is not correcting to 20/20 yet, but the improvement is continuing and he is gaining a line of vision at every appointment. As long as he continues this trend, we don't have to patch. This is great news!

I also mentioned a connective tissue disorder that had been casually mentioned by the geneticist. I wanted to make absolutely sure that Nolan's eyes didn't carry the "vitreous changes" that occur with that disorder, and we reviewed his records. His eye jelly looks great, so there is no way he could have that particular issue. To absolutely rule it out, they are going to do a full eye exam at his next appointment in December. It is good to absolutely rule it out, because that particular disorder can result in blindness if certain preventive measures aren't taken. I am relieved to rule this one out, but also concerned at the continuing development of new issues over time. Sometimes, it would be nice to have a name (and a prognosis) for all the apparently random developments.

It is now Friday, and the boys are decompressing after a long week at school. Nolan's classroom is doing a caterpillar unit, and hearing him say "chrysalis" is about the cutest thing on the planet. They have been sequencing the caterpillar life cycle, reading the Very Hungry Caterpillar with props and puppets, and they had a music class today, where Nolan's favorite Slipper Fish song was sung. Show and Tell was also today: he decided to bring a Giant Frog. There was some stress this morning, as finding a Giant Frog at the last minute is a rather difficult task. We finally settled on a large stuffed animal given to him by his beloved SLP last Christmas. He talked about his frog and told the class that it can "hop hop hop." He absolutely loves Pre-K. His teacher is absolutely fabulous.

Next week is much less busy, with school and only one doctor appointment. Thank goodness!

Update From Our Cleveland Clinic Trip: Genetics

We are back from the Cleveland Clinic - an absolutely amazing medical center. Nolan was amazed by the fountains and the landscaping everywhere - there's a reason they call this place "Medical Disneyland." The top-notch doctors make this place truly wonderful.

We saw the geneticist and the genetic counselor, who looked at Nolan's (extensive) medical history and at Nolan himself. I will say up front: there is no "Eureka! We found it!" moment coming up here - so this will be a long post detailing the general thoughts and impressions from the team at the Clinic.

First off, Nolan is definitely medically complex. There are a lot of things going on, obviously, and some things can be considered "birth defects" (the posterior urethral valves and the hearing loss) and some can be considered progressive (the acid reflux with increasing intensity, the laryngomalacia, the hearing loss, the vision). Some things are entirely new to us. Both the geneticist and the pediatric resident heard a distinctive heart murmur.

Nolan's echocardiogram a year ago was declared "normal." No one has ever detected a murmur before. It is likely he has developed a new issue, but the geneticist is requesting his echocardiogram from last year to confirm that this is a new development. If it is a murmur, the location of the murmur suggests that it is a mitral valve prolapse. This is generally a fairly benign murmur that doesn't need surgical correction, but it will need monitoring. We'll see where this one goes.

Hanging out in genetics

The geneticist went over Nolan's issues. Some "separate" issues are really linked together, because one issue causes the other. The truly separate issues are:

1. Hearing Loss

2. Myopia, Astigmatism, and Anisometropic Amblyopia (vision)

3. Severe reflux -Laryngomalacia - Obstructive Sleep Apnea - Chronic ear infections/upper respiratory infections

4. Posterior Urethral Valves

5. Heart Murmur, probably mitral valve prolapse (new)

6. Hyperextensible joints with mild hypotonia

Obviously, this many issues isn't exactly coincidence. On the other hand, there is no comprehensive diagnosis that fits his issues. The geneticist did feel that he should have a genetic microarray done, to rule out minor chromosomal deletions and additions that can cause issues for some kids.

She did warn us that the test will probably come back as "normal," however, because the majority of chromosomal rearrangements and deletions cause cognitive and developmental issues. Nolan has no cognitive issues, which makes a chromosomal problem less likely. We do need to run the test, though, because other things cannot be considered until this test is done and his chromosomes have been checked out.

The microarray was drawn this afternoon and we should have the results in about 2 weeks.

She did say that Nolan was doing well developmentally, so while he is medically complex, he is also very "normal." Which is wonderful to hear... though we do wish there was a way to treat the medical problems he does have (and stop new ones from cropping up)! Essentially, we will have to monitor him on an annual basis and see if new issues keep cropping up.

Heading out: happy to get to the car!

As for the reflux, we have no idea why it continues to increase in severity. We asked her opinion on the fundoplication, and there really isn't a right or wrong answer. If his lungs are definitely affected, we should do it. If it is just the apnea, we should probably stick with C-Pap and try to make it work. If he starts having difficulty maintaining weight, we should do it. Since he has re-gained his weight back to 32.4 pounds (woot!), we might consider holding off.

She did tell us to consider the following very carefully: with Nolan's history, we should be prepared for a fundoplication to completely fail in its goal to eliminate apnea. While it may work, there is no guarantee that it will be successful in controlling the apnea. We could very well do a fundoplication, and then still need to use a C-Pap for Nolan. And we will always have to use anti-reflux meds for him. So really, if the reflux starts attacking his lungs, voice, or ability to grow... we should do the fundoplication. If the reflux is just causing the apnea, we would be better off controlling that with the C-Pap. It will be an ever-evolving judgment call: with progressively worse reflux, our decision to hold off on the fundoplication may have to be reversed as new complications arise.

She also said that his fatigue and stomach pain is an inescapable component of his condition. He has apnea - he is going to be tired until it is well controlled. Controlling apnea with severe reflux is difficult, so he will likely struggle with fatigue. While a little depressing, it is realistic: he has a chronic condition that we will have to cope with, because it is unlikely that it can be "fixed."

His stomach pain comes with the acid-reflux territory. His gut doesn't work right, and he's going to hurt a lot. Again, he will have to develop coping mechanisms for this, and we'll have to try to keep on top of the anti-reflux meds as we have always done. A fundoplication will not fix the mysterious stomach pain (which is likely due to delayed gastric emptying).

Her input was valuable. For now, we will probably hold off on the fundoplication and work harder to make the C-Pap work for Nolan. But our decision may change, based on what the reflux does to his little body.

As for now, we just wait for 2 more weeks to see what the microarray shows.

Such a Turkey

Today has been a long day. One of those days. Nolan has been pushing nearly every limit known to man. All. Day. Long.

Fortunately, bedtime is coming very soon. Hopefully tomorrow will be a more cooperative day!

I may not get much of a chance to update in the coming week, because we have a few appointments in different cities (and three different states). Tomorrow (on Labor Day), we have an appointment with the sleep clinic in the fabulous city of Dunkirk, NY. This is the closest doctor to our house (45 minutes away), but I am a tad concerned that they scheduled the appointment on a holiday. I will definitely call before we take the drive up there!

On Tuesday, we have our appointment with the geneticist at the Cleveland Clinic (in Cleveland, of course). I'm not sure what to expect from the appointment, but we are hoping for some direction, at least. And for some insight into some of Nolan's fatigue and stomach issues, which constantly plague us.

Fatigue, Nolan-Style

Wednesday is free of doctors, but Nolan has his speech-language-pathologist in his classroom and will return to school for the first time in four days. He also has his Teacher of the Deaf (TOD) coming in the afternoon.

Thursday is a visit to the Pediatric Ophthalmologist (PO) in Erie, PA. This is the appointment that will dictate whether or not we have to patch Nolan's good eye.

On Friday, the kids *just* have school and I think I may take a long nap.

Thank goodness for weekends!

Fall Down Go Boom

Nolan decided to take a trip into the TV stand on Friday. I could tell the gouge was deep enough to require attention, so I bundled him off to the pediatrician. Fortunately, the cut was on the forehead and they could glue it back together.

I am SO very glad for modern medical inventions. The glue was SO much less stressful than stitches: no shots, no need to come back to have the stitches removed. A few passes with a tube of medical-grade super glue, and our boy was patched up quite nicely. The cut looks MUCH smaller now that it is glued together (it was about 1/4" wide when we went in), and it should heal nicely with only a small scar.

The glue should come off in about 7 days, and he'll be good to go. He still wasn't a happy camper about the whole thing, but I was just grateful we didn't have to hold him down for stitches!

Nolan has been falling a lot lately, and complaining that his glasses are blurry. This is mildly concerning to me since:

1) His glasses are clean.
2) His vision went from normal to amblyopia in the space of 1 year. He has a history of rapidly changing vision... so it isn't out of the range of possibility that he's having issues because of his eyes.

We have an ophthalmology appointment on Thursday, so hopefully we can rule vision out as a cause to his recent clumsiness. Hopefully it is just "normal" incoordination, though!


Of course, Nolan is forever coming up with new ideas, and his latest is the glasses-as-money-holder. He's been walking around with coins stashed in his glasses ("for the library parking meters"). Fortunately, we've been able to convince him that his pockets are a better location for his spare change!

An excellent place to store spare coins

Honestly, It Couldn't Get Any Better

I am so very glad we live in our specific school district. The Universal Pre-K program at our school is simply fantastic. Nolan's teacher is beyond fantastic. Things are just going beautifully at school.

Nolan's teacher sends home a letter at the end of each week, detailing what they learned and what they are going to learn the following week. This is vital information for us - and for Nolan's Teacher of the Deaf (TOD) and Speech Language Pathologist (SLP) - because it allows us to pre-teach some material and vocabulary.

This week, Nolan's class:

• Read stories about starting school
• Sang familiar songs (like Twinkle Twinkle and the Wheels on the Bus)
• Met the classroom puppet (dubbed Lola the Lamb)
• Talked about the calendar and weather at circle time
• Explored the classroom and played at centers
• Practiced walking in a line
• Practiced fire drill procedures.

Honestly, this is so wonderful. The kids are familiarizing themselves with the routine, and reinforcing the concepts by helping Lola the Lamb prepare for Pre-Kindergarten. They are practicing fire drill routines so that no one freaks out and screams like a banshee everyone knows what to do when the alarm goes off.

His teacher is using his FM system and that is working out VERY well. I have been setting the program on Nolan's hearing aids and connecting the receivers, then placing the FM unit in its case in Nolan's back pack (microphone on mute). The teacher just has to pull it out and un-mute the microphone, and voila - the FM is "on." This does mean that Nolan's program slightly mutes sound on the bus, but he can still hear his friends if they are in close proximity. It is the best trade-off at this time, since he doesn't have a TOD to set the system up every morning at school.

Next week they are studying Monarch caterpillars.

Nolan will miss Tuesday's class because of our trip to the Cleveland Clinic, but he'll get back into the swing of things very quickly on Wednesday.

Matt is also feeling better today. He broke out in a sweat last night and the fever disappeared. He seemed right as rain this morning, so I sent him off to school. He should get off his bus in about 45 minutes - I love seeing my boys after their exciting days at school!

School is Fun

In Nolan's words, this is how his first day went:

"I sat on the rug. There was a story about doggies in the school. We sang Twinkle Twinkle Star. We didn't get to play outside. R----* is in my class! I played with the space toy."

It was a great day, and his teacher even called from home later in the afternoon to ask a few questions and to see how his day had gone. Did I mention how awesome Nolan's teacher is? She is beyond amazing. Nolan did have some stomach pain today, but sat on the rug and got through it.

Matthew also started school today. My big boy is in Kindergarten. Next week he will begin attending school from 8:45am - 3:15pm (he will board the bus at 8:15am and won't be home until 4:00pm). He's going to be a little tired while adjusting to the longer schedule.


And my little guy, who couldn't speak until he was three, was full of words about his day:

"We got to sit on the floor and listen to two stories, then we went to see the specials. We got to see the gym, but we weren't allowed to go in because the door was shut. We also got to see the art room, and it is right next door to our classroom! And then we got to see the music room and the cafeteria! They called it a TOUR! And, Mom? We got to play. Not outside or in the big room, but we got to play. And I saw K---* standing in a straight line. And then we got on the bus and A-----* was on the bus and now I'm home!"

Both boys are absolutely exhausted and fast asleep. Tomorrow is another half-day for Matt, which is good because he is really tired! He was also running 100.7 tonight... I'm hoping that is from being so tired and not from an impending virus!


*Names omitted for privacy.

The First Day of School

I thought I was handling the whole going-to-big-boy-school thing really well. Until 3:00am, when lightning flashed and thunder crashed. I woke up with a start, and thought:

OMG. It is going to rain. I didn't think about rain. Nolan's hearing aids will get wet. A hat? Do we have a hat that will fit? OMG what am I going to do? I'll drive him. No... wait... UMBRELLAS! Yes. He can take an umbrella!

You can see that my mind does not function well in the middle of the night.

Of course, my next thought was,

Do they let them take umbrellas to school? Can they take them on the bus, or would they consider them a "weapon" or "projectile?" What if he can't take an umbrella? They didn't mention umbrellas at the parent information meeting and I FORGOT TO ASK ABOUT UMBRELLAS!!

I am pretty sure I was up from 3:00am until about 6:00am, worrying about whether or not it would be all right to send Nolan to school with an umbrella. Then it was time to get up. My brain grew rational once more. I gave Nolan his meds, fed the boys, got them dressed, set up the FM system and cleaned his glasses, and took them outside for first-day-of-school pictures.

Ready for Pre-K

Then I drove down to the bus stop (still threatening rain) and we waited for the bus - with umbrellas. The boys boarded the bus, and are probably just finishing up with circle time as I write this.

Matt has a half day today, so he'll be home shortly after Nolan's "Turtle" bus drops him off.

VERY excited about the bus!

Waiting... WITH umbrellas

In the mean time, I am going to resume my frantic house cleaning as a way to stave off tears.

I can't wait for the bus to bring my babies back home.

Please bring my babies back home SOON!