Happy 6th Hearing Birthday

Nolan's sixth hearing birthday was yesterday. I would have posted a blog then.. but, truth be told, I completely forgot. I didn't remember until the audiologist called to confirm his appointment on the 14th, when I suddenly realized - hey, it is January 10th! Yesterday was the anniversary of when he first heard sound!

He has grown a lot since those first moments with his hearing aids. I'll never forget the day before he received his first hearing aids. It was a sunny day in January, and I was so anxious about the future. How would we communicate? Would he lose more hearing? Was anything else wrong with our precious baby? Would he talk? What would his life be like?

The next day, his ears were born. He could hear something without hearing aids at this point in his life. He had a moderate hearing loss, but all speech sounded like Charlie Brown's teachers. Hearing aids would bring those blurry sounds into focus - allowing him to hear all the sounds of speech.


My bobble-headed baby boy loved sound, and was a mere four months of age when we turned on his ears. Over time, answers came to my questions.

Would he lose more hearing? Yes. Nolan now has a moderately severe to severe hearing loss. He is likely to continue to lose hearing (albeit slowly). With technology, however, this isn't as much of a worry - he will always have access to sound, even if we have to change the technology down the road.

As for how we would communicate - well, we often have to tell Nolan to take a five minute break from talking. He is the most verbal person in our family. His receptive and expressive language is off the charts. He talks. He sings. He plays the piano. And sometimes the pipe organ.



He is one of the top readers in his class. I used to worry that he would need help with his reading - as it turns out, he is pulled out for a special reading group. This reading group, however, is for the advanced readers in the first grade.

Was anything else wrong with him? That question unfolded over the years. For several terrifying years, we agonized over what was going on with our little boy. The inability to grow, breathing difficulties, constant ear and sinus infections, amblyopia... every new symptom caused a wave of panic. Now that we have some answers, we are able to help him and avoid the vomiting attacks and other problems that come with dysautonomia (one of the unfortunate conditions that often comes along with Ehlers Danlos Syndrome). He is growing. His vision is now correcting to 20/30, and we have stopped the sinus and ear infections. Some things aren't "fixable," but he is stable and we know how to help him. I finally feel like we have a handle on things.

And as for what his life would be like.. well, it is simply regular. He goes to a regular first grade class. He plays on a soccer team in the summer. He is a bit of a daredevil and rides roller coasters that I will never, ever dare to ride. He calls himself the "green bullet" when he darts down the ski hill. He is a confident, articulate, rambunctious six year old boy.

Life is good.

New Hearing Aids and Glasses

We haven't picked them up yet, but Nolan's new hearing aids are on order. We will drive up to Buffalo on January 14th to pick them up - we chose the Bolero Q70 SP model. These hearing aids have 16 channels (as opposed to the eight channels Nolan currently has) and are water-resistant. They also have an integrated FM receiver.

The integrated FM is a huge plus. Nolan's personal FM system has not been working properly since he started school in September. He has a Phonak Inspiro, and it has had multiple issues. First, the transmitter was sent to Phonak and they did some basic maintenance... but the transmitter would not work once it was sent back to the school. Phonak replaced the transmitter when it was sent in for the second time, as there was a faulty circuit board. Then it was sent in for a third time because it wouldn't work. Now, one hearing aid won't register the FM signal - but this time, we think it is the hearing aid and not the FM system. Hopefully getting Phonak aids (instead of the Unitron aids he currently has) will help solve our FM problems. While his teachers are so happy to state that he "compensates well," lip reading and filling-in-the-blanks is not the same as actual hearing. He misses a lot.

He is also getting new glasses, which will be picked up the day after getting his new hearing aids. I am excited for his soon-to-be improved vision and hearing!

In other news, the windchill has caused our school to cancel for two days in a row (-30 Fahrenheit with the windchill, -12F as the "regular" temperature). It is warming up tonight, and will actually rain on Saturday. The kids are getting a bit antsy, as the weather has been too cold to play outside and there is a lot of pent-up energy here!

Ear Infection (Again)

Nolan had a fantastic time the week of his birthday. He went tubing on the lake, went to a water park, and we took a trip to Toronto.

Unfortunately, all the heat/humidity/water activities  resulted in a raging ear infection in his right ear. I was able to acquire more Ciprodex drops and started treating it quickly, but Nolan had to start first grade with only one ear.

Thankfully, his new teacher of the deaf (TOD) is beyond fantastic. She actually trained at the Clarke School (an auditory-verbal program) and is thrilled to see Nolan is reading at an advanced level. He is having significant problems hearing, so his desk has been moved to the front of the teacher's desk, and he has daily pull-outs to work on the curriculum in a 1:1 environment. He is adjusting to first grade well, and loves his teacher(s).

His ear took about a week to clear up. Hopefully we won't see another ear infection for a while!

Kindergarten Artwork

If Nolan hatched an egg, he would find a "snowy bird." Or a Nowy bird, as the case may be!

Report Card Time

Despite our concerns about Nolan's hearing levels, the boy is doing wonderfully in school. He is pulled out every day by his TOD (teacher of the deaf, also known as a D/HH teacher, depending on where you live). He also gets pulled out twice in a six day cycle for speech therapy. His TOD works a lot on his language and reading skills, so he gets an extra boost in this area.

The school district performs standardized testing (aren't our schools all about the standardized testing these days?) to determine which children might need help with certain skills. Nolan did wonderfully on the Aimes-Web assessment:

If you aren't familiar with the format of the test results, an explanation follows:

The dark line under the gray rectangle is the "benchmark." They expect all students to perform at or above this line. Children who perform under the benchmark (target) line are referred for extra help with reading.

The gray rectangles depict the average range for children in Kindergarten. "KF" denotes "Kindergarten - Fall" and "KW" denotes "Kindergarten - Winter." This shows the individual growth of a child from one quarter to the next.

The dot is Nolan. He's sitting on top of the long pole on a few of the measures. This means that he is outranking his normal hearing peers by a considerable distance. Yes, this is bragging. Shameless, shameless bragging.

• They test letter naming fluency (LNF) - how many letters the child can name in a minute. Nolan scored 100%.

• He did very well for letter sound fluency (LSF), too. He's in the average range for this skill. He had to provide the sound each letter makes within a certain time period. 

• He's also in the average range for the PSF (phoneme segmentation fluency). In this test, the child is given a word (orally), and the child has to break down the word into individual phonemes. If given the word "named," for example, the child would break it down into "n - a - m - d." 

• The last test is nonsense word fluency (NWF) and Nolan rocks at this skill. They give the child fake words, like "wib" and "kuf" to see if they can read the word using the rules of phonics. Nolan is awesome at sounding out words.

Nolan is starting to read anything and everything - I find him reading quietly upstairs after school. I love it.

The only areas of "developing" status have to do with his fine motor skills, which have always been on the radar. He doesn't really qualify for OT yet, but we're monitoring it and working with him at home. Hopefully his hand strength and coordination will improve with age (he's an August birthday, so a "younger" five year old in the Kindergarten class).

Writing sample, 5 years, 5 months. Not too shabby!

As far as his "special services," we have noticed some regression with certain speech sounds and sound discrimination. He may have lost more hearing, and if his FM isn't on, he can't hear (he is FM dependent, particularly at school).

His TOD has the following notes:

• Nolan's ability to produce /ch/ and /j/ has decreased, and we have discussed that being, in part, a possible function of a decrease in hearing. 
• I have him walk ahead of me and give him random words and phrases to repeat and he can do this with his FM on in a very quiet setting. 
• He cannot perform this task if his FM is not on. 
• Nolan is struggling with determining whether two words rhyme (he used to have no difficulty with rhyming words).
• Overall language skills are good considering level of hearing loss.
• Grammar errors such as "I have saw it before," "He didn't want to get caughten," and "He runned away."
• Overgeneralizes plurals - adds /s/ to everything: snowmens, foots, ghostus, etc.
• Vocabulary holes for many basic words, including needle, broom, pot, and vase (examples).
• Difficulty with directional activities including "behind" and "beside."
• Difficulty with 2-step direction coloring task (would reach for each color as soon as she said the word so he wouldn't have to store the information in his auditory memory).

His speech language pathologist has the following notes:

• Nolan sometimes has a slushy, lateral "z" or a whistling "s" when in therapy. These sounds are usually slushy when used spontaneously. 
• Discrimination of correct vs. error sounds varies from session to session and is tied to his hearing.
• Some word specific errors such as, "renember," "meed" (for need).
• Inconsistent /ch/ and /l/ sound.

Overall, Nolan is doing really well. Some of his errors are probably typical for any 5 year old child (using "runned" instead of "ran," for instance). Some are obviously tied to his hearing, particularly sounds that he used to have and has now lost (he had a crystal clear /s/ sound at the age of 2, and it is now very slushy, for example). 

I am anxious to get his hearing test done on the 13th, as that may provide some insight into some of his recent difficulties. He is academically on target and his reading skills are fantastic for a child of his age, so I can't complain!

Total Brag Post

Nolan is doing really well in Kindergarten. Really, really well - he is in the "100 club," which includes the 8 children in his class that can count to 100. He knows all of his letters and letter sounds, and is starting to read. Over the past month, he has started to take off with his reading skills. Instead of drawing a picture response on his classwork, he is now writing his answers.

If you can't read "kindergarten," his answer says, "My favorite thing about my house is TV."

He is reading, writing, and excelling in his mainstream kindergarten classroom. I wish I could send this paper back in time to that worried mother, sitting in an armchair with her baby and learning he couldn't hear very well.

I guess we can stop worrying about whether he'll be able to read as well as his hearing peers. It appears he'll read better than his age-matched peers.

Awesome.

Kindergarten: The First Few Weeks

Nolan loves Kindergarten. "Loves" might be an understatement. He is absolutely thrilled to go to school each day. He loves his teacher and he loves his TOD (teacher of the deaf). He's doing really, really well.

He is getting some help from the Occupational Therapist. His fine motor skills are lagging and his hyperflexible joints/hypotonia in his hands does create a few minor issues. It is something we're monitoring and we haven't written the OT into his IEP yet, but that is on the table. Hopefully a few sessions with the OT will help him develop some coping skills for his weak(er) hands.

He knows all of his letters (except for G, which he has apparently forgotten over summer vacation). He knows most of his letter sounds, with the exception of E, L, U, X, and Y. Not too shabby, though I'm a little bummed that he forgot a few of his sounds over the summer. We did work on them, but we also had a lot of other experiences (like fossil digging and swimming) that I feel are equally important to creating a well-rounded child. We'll work on the forgotten letter sounds and he'll have them down pat soon.

His FM system is working wonderfully. He came home today and recited the following poem to me:

"I am mother circle, round like a pie.
I am baby triangle, three sides have I.
I am papa square, my sides are four.
I'm cousin rectangle, shaped like a door."

This thrills me for a lot of reasons. Firstly, he is hearing his teacher very well. Secondly, his auditory memory is excellent to remember the entire poem. His hearing aid batteries died at school last Friday, and his teacher changed them without incident. I love her.

His eating is hit-or-miss at school. He often only eats a couple bites of his sandwich at lunch, a Go-Gurt and a small clementine. Sometimes he manages to eat more of his sandwich. He does eat all of his snack in the afternoon. On the days he doesn't eat well, he'll often come home and eat a large after school snack - which then impacts dinner. We're not too worried about it - if he's hungry, we give him food. If he is bloated or simply "too full," we just let it go. We can always make it up at night.

I can't wait to see him blossom throughout the year. He absolutely loves everything about Kindergarten, and is happy to be participating in gym again. Now that things have quieted down on the medical front, we can relax and enjoy the school year!

Still Waiting for a Button

I really, really miss Nolan's "button." His Mic-Key button is so much better than the old-fashioned PEG tubes. He is currently sitting out gym at school because we're worried the PEG will get caught on something. The button is so tiny and doesn't require tape or ACE bandages to keep it in place. The PEG, however, does.

I did make a "pocket" out of some 4x4 pads, but the PEG keps falling out of the pocket. It was a good idea at first, but the ACE bandages work better. A mom on the LTBM Australia board* sent me information on how to make a wiggly bag, which is a bag that hangs around the neck and holds the PEG so it doesn't flop all over the place.

Through a few online contacts, I managed to find a mom who has an extra 12 french, 1.2cm Mic-key on her hands. This is the size Nolan needs, so I'm going to pay shipping and she'll send me the extra button (her child is now in a bigger size and no longer requires that particular button).

In the meantime, I get to play Fight the Insurance Company for his formula and replacement button. I did order one online because there was a sale ($114), but the buttons normally cost around $300 - so we do want insurance to cover them.

Nolan loves Kindergarten and ate really well on Friday at school. This is a big relief! His TOD followed him all day and monitored his hearing in different environments. He doesn't hear at all in background noise, and is extremely reserved and quiet at school. Fortunately, there is one child in his class from last year, and he has been paired up with that child to facilitate socialization. He'll warm up in a few weeks, but the noise of a classroom is a bit overwhelming for him at first.

As a side note, the boy has really taken a liking to sweater vests. His fashion sense cracks me up.

*The LTBM Australia Facebook group is excellent for parents with children who have severe laryngomalacia, TOF/TEF, laryngeal clefts, tracheomalacia, bronchomalacia, etc. It's the only group I have found where there are older children with the more severe complications of these conditions.

First Day of School

Kindergarten. I can't believe my baby is in Kindergarten. Class of 2025, here he comes!

Kindergarten Open House

We went to visit Nolan's classroom this evening. His classroom is very colorful, with lots of centers. It is a great contrast to Matt's Kindergarten classroom, which was very sterile in many respects (and had few centers).

Nolan's teacher plays the piano and has one in her classroom. I really love the inclusion of music and center time into the kindergarten day. I didn't get a lot of pictures of his classroom, because I was talking to his Teacher of the Deaf. She had his new FM system set up and waiting.

I will have to return the county-provided FM system, which is sort of a bummer. On the other hand, the school district is allowing me to take his FM system home, so I consider this a big WIN.

We can still use it at home, and I will set it up each morning and take him to school with it on, just as I did last year. This worked well for us last year, so we'll keep doing it again this year.

I did tell his TOD that his reporting skills were hit-or-miss. If both hearing aid batteries die, he will always say something. Since he is functionally deaf without hearing aids, two dead batteries really impact him. If one battery dies, however, he won't say anything. As long as he can hear something, he figures he's still good to go. If the FM isn't working, he'll often insist that it is - until you fix it and turn it on, when he'll declare, "I can hear you now!"

Fortunately, he has hearing aids so his occasional failure to report malfunctioning equipment can be checked - we can listen through his hearing aid/FM combination to be sure it is set correctly.

School starts on September 5 - we're all excited for a great year!

Back to School Shopping

In less than two weeks, school starts. Nolan's kindergarten information packet has arrived, we have his teacher assignment (Mrs. H) and his supply list. His teacher seems pretty wonderful and has already called to see how things are going for us.

Instead of worrying about how we're going to keep Nolan fed in school, I buried myself in retail therapy today. I took the kids to Erie, PA and we went to Target in a quest to find backpacks, lunchboxes, and school supplies. Apparently, kids in Pennsylvania start school before kids in New York, because the backpack section was wiped out and they were not re-stocking. I did manage to get everything else, though, so I'm calling a huge WIN on the shopping trip.

After the necessary supply shopping, I took the boys to the mall to find the Crazy 8 store. For those who aren't aware, the store is owned by Gymboree and the clothes are adorable and low-cost. I managed to get several really cute outfits for both boys - the shirts were about $4 each and the jeans were $7 for Nolan.

The shirts run big at Crazy 8, so I picked up some 3 year old size shirts (Nolan normally wears a 4T). I absolutely love this dinosaur outfit:

Nolan's Giant Tummy of Bloat is a bit better today than yesterday. His surgeon already wrote me back and asked if the bloating was from air (he asked if he had been crying a lot, if he liked the milk, etc). I told him that he hadn't been crying and simply got too full - he likes the "mighty milk" taste. The surgeon suggested venting him if he bloats and draining off the excess so that he remains comfortable. Even though we might lose some of the calories by doing this, we can't have him in such distress.

Sorry for the details, but this blog is as much a way for me to keep records as it is for keeping friends and family up-to-date. Stop reading now if you don't want a blow-by-blow account of What Nolan Ate. It's dreadfully boring.

Instead of making waffles for breakfast this morning, I gave him some dry cereal with the mighty milk on the side. This let him get in his 8 oz. without too much discomfort, since he had an empty stomach. We drove to Erie and ate lunch at Panera Bread - he didn't eat his macaroni and cheese at all, and only ate a tube of yogurt. We went shopping and came home - he had a little bit of bread, but really hadn't eaten anything since breakfast.

He did eat dinner well -one stuffed shell, some green beans, and a small clementine. He drank the last 8oz. of mighty milk and then had some orange juice. He was bloated and uncomfortable, so I vented off some air and a small amount of fluid.

We're looking forward to the weekend and Nolan's birthday on Monday. I can't believe my baby is five!

First and Last

It always amazes me how much they change over the course of a year. Today is Nolan's last day of Pre-K.

He went from wearing 3T clothes to wearing 4T clothes. He's gained 2 inches in height and lost a pound, and his face has changed so much! His little toddler face is gone and his "school boy" face has developed.

Matt has changed a lot, too - he looks much more like a first grader than a Kindergartener!

Matt has gone from wearing size 5T clothes to wearing size 6 pants and size 7 shirts! He's lost two teeth, learned to read, add, and subtract, and loves the Magic Treehouse books.

Here's to a fabulous summer!

(Not) Saying Goodbye

Nolan's school year is rapidly coming to a close. His Pre-K teacher celebrates the kids' summer birthdays throughout the month of June - Nolan was ecstatic to bring home his little birthday bag and wear his 5 year old birthday hat.

Since he is going to full-day kindergarten next year, he will start receiving services from the school district's teacher of the deaf (TOD) and speech-language pathologist (SLP). This means that we must say goodbye to his current TOD and SLP, who are through the county.

Except, of course, we are not really saying goodbye. We joke that his SLP is his "other mother," as she has been with our family since Nolan was 8 months old. She held him as a baby, cheered on his first steps, and gave him a voice. She helped transition his entry into preschool, and is passing the baton as he enters kindergarten. She is more family than therapist, and there is no way we could truly say, "goodbye." She might not be providing therapy services anymore, but she will always be a part of our lives.

What in the world can you give to someone who has given both of your children a voice? There is really nothing that can compare to that gift. I did find a neat little locket on Etsy (from Punky Jane's jewelry) that fit the bill.

It is hand-stamped and the inside says, "Thank you for my voice, Love Nolan."

We had our last home visit yesterday. We refused to say goodbye, since it really isn't a goodbye. It is more of a transition to an exciting Something New.

But still, the tears are flowing.

CSE Transition Meeting

When students transition from the preschool age group setting to the school-age setting, a special education transition meeting must be held, since the service providers change from the county to the school district. Nolan's transition meeting was today, and he moved from CPSE (the Committee for Preschool Special Education) to CSE (the Committee for Special Education).

One of the hard things is determining exactly what Nolan needs. He's quite bright and developmentally on track. He technically qualifies for an IEP in two different ways: the first being "hard of hearing" and the second being "other health impairment." His primary disability is the hearing loss (this affects his education the most), so this is his classification in the school district.

Our elementary school is fantastic and has a Teacher of the Deaf (TOD) on campus. Nolan has some vocabulary gaps and some language processing issues (some of this is due to his fluctuating hearing loss, which has been known to cause central auditory processing disorder - CAPD - in children). In children who are deaf or hard of hearing, this problem isn't referred to as CAPD, but is simply considered an effect of the hearing loss. Nolan needs some pre-teaching and some work on processing phrases, multiple step directions, and auditory discrimination skills in the classroom. The team decided that 30 minute daily sessions with the TOD would be appropriate - these sessions may be push-in or pull-out. "Push-in" means that the TOD will go into the classroom with Nolan, and "pull-out" means that Nolan would be pulled out of the classroom for a one-to-one session.

The biggest debate was speech. Nolan has some speech errors, but the majority are developmental in nature. He has W for L, misses S occasionally, and has the normal speech errors of a four year old (difficulty with R and TH). He does sometimes miss the D sound in words, and will confuse M for N. These errors are related to his hearing, and can fluctuate with his hearing level. Some weeks he has a solid D sound, other weeks it nearly disappears.

In the end, we decided to keep speech therapy, at least for Kindergarten. If the developmental errors disappear and his articulation becomes clearer, then we can always drop it. We'd rather not get behind the 8-ball with his speech, as it is easier to prevent a problem than to remediate one. He'll get speech twice per week at 30 minutes per session, which may be in (very) small groups or individually, as the speech language pathologist sees fit.

There are also a few "alerts" put into his IEP - things his kindergarten teacher should monitor. Nolan's gross motor skills are borderline, and his fine motor skills have come along nicely. Still, we want to watch for fatigue and make sure he is able to develop age-appropriate skills. He still can't hop on one leg like his peers can (or throw a ball well), but that may change over the summer (hint: Mommy Boot Camp is in session this summer).

The meeting went very well, and I am so thankful that we live in the best school district in the area for kids with disabilities. The team at our school really ensures that every child is given what they need to excel!

Kindergarten Round Up

I'm not quite sure how my baby turned into a Kindergartener, but somehow time flew by and he is going through the readiness testing at school. Kindergarten Round Up is next week.

Word on the street says that he scored highly on his readiness tests.

Very highly.

The staff administering the test didn't even realize he has a hearing loss (I'm not sure how they missed those hearing aids on his ears, but they must not have noticed).


Also?

It stopped snowing.


I love Happy News Days.

Report Card Time

The kids in our universal Pre-K program get report cards every semester. We just received Nolan's first report card, and the little guy is doing very well academically.

He knows all of his shapes, all of his colors, and can count accurately up to 16.

He knows 24 out of 26 upper case letters (he missed P and U). He called "P" a "B" and couldn't recall the U.

He knows 22 out of 26 lower case letters (he missed d, l, q, and u). He named the d and the q as b and p, which makes sense since those letters are rather confusing, anyway. He called the lower case l an I, which also makes sense (a capital I and a lower case l look very similar)!

He knows his days of the week and most of the months of the year, in song format. He doesn't know his phone number or address, so we need to work with him on that. And he can't tie shoes, but neither can Matthew. That's my bad - I need to ditch the velcro!

For his fine motor development, he is "improving" on his pencil grip - he can hold the pencil the proper way at first, but doesn't have the strength to maintain a proper grip and reverts to a fist-hold for most writing activities. He can draw a circle and a square, but not a triangle. He cannot snap a snap, but he can button - again, a problem with muscle strength in his hands. The button takes coordination and not strength, so he can do it. The snap takes physical force to snap closed, so Nolan can't do it. Not the end of the world, but something we're keeping an eye on as it may hinder his ability to write in kindergarten. It also hinders his ability to snap his own pants after using the bathroom - something that might be embarrassing as he gets older.

Scooter-riding skills should be on report cards.

His "weakest" area is gross motor, something that didn't really used to be a problem. It isn't so much that he's regressed, but that his peers are surging ahead and he's not. He can't skip, though that is a hard skill and  I am sure a few kids in the class can't skip. He has difficulty throwing a ball and catching a beanbag. Last year, he could hop on one leg for a short period of time. He can't do that anymore, at all. I don't think it is a balance issue, as he is "proficient" at standing on one leg - he just doesn't have the strength to hop on it. He's completely lost that ability - not sure what to make of it, but we're keeping an eye on his motor skills, too. I think it is a muscle weakness issue more than anything else. He can run and kick a ball, which is good! His teacher noted that they will work on a lot of hopping during play time - we need to strengthen those muscles.

My favorite portion of the report card was the "listening and language development" section. I love looking at his "grades" in the mainstream classroom. His grades were:

Speaks in whole sentences: Proficient
Participates in circle time: Proficient
Attentive for stories: Proficient (thank you, FM system)
Follows multi-step directions: Improving
Expresses thoughts freely: Skill needs work
Rhymes words: Improving
Produces opposites: Proficient
Uses appropriate voice level: Improving (too quiet)

He is proficient in nearly all of the social skill areas, which makes my heart sing. His pre-math skills are solid - he can sort objects by size, color, and shape. He is improving on extending a simple pattern.

Basically, he is rocking mainstream Pre-K. We need to work on some muscle strengthening exercises, but the academics are easy for him!

Tennis Boy

Nolan started his "Tot Tennis" class this morning. He was so excited to start the program that he was literally dancing as he waited for class to start. He's definitely the smallest kid in the class, but he is having a blast. The program is really perfect for the smallest kids: they learn some skills and do a lot of running and play various ball-throwing games.

I went to his parent-teacher conference at the elementary school yesterday, and he is doing really great in class. Academically, he's doing very, very well. Motor-skill wise, he is lagging a bit. We're continuing to monitor and he may need OT at some point. On the other hand, a lot of the coordination and fine motor skills could simply be developmental (there's a pretty big range of normal at the age of four). We'll see how he progresses as the year goes on!

Nolan's hearing is definitely not quite up to par. He is asking "what?" fairly frequently and is still missing a few Ling sounds during listening checks. His right ear seems to be particularly troublesome - he was holding a large jingle bell to his ear and was shaking it, and started crying because his bell was broken.

Unfortunately, the bell is perfectly fine... his right ear, not so much. He has a CT scan on Wednesday for his sinuses (suspected damage caused by acid reflux), and then we will schedule a follow-up with the ENT. I'll ask her to take a look at his tubes and his ears at that appointment, just to be sure there isn't some sort of infection brewing. I know his left ear has a clogged tube, so we may end up back in the OR before Christmas to replace those tubes.

We also have a sleep center appointment next week, so we'll be fairly busy with trips to Buffalo. Before the crazy week of travel and appointments starts, we are enjoying the snow (yes, snow) and a quiet weekend at home.

The Case of the Missing FM

We've had a rather busy week - Nolan's gut seems to be doing well, though his missing "s" sounds haven't returned. No sign of an ear infection is present, so I suspect we'll see another drop in those high frequencies when his hearing is tested again.

On Wednesday, Nolan came home and I had a few errands to run. No big deal, but I didn't check his backpack until 4:00pm, when I discovered that his FM transmitter and its case were missing. After some questioning, I discovered Nolan had had a substitute teacher for the day.

I figured it had been left in the classroom - the only problem would be the following day, when the battery in the unit would be discharged. I was also a wee bit concerned that Nolan had taken the unit out of his backpack and tossed it somewhere... you never know what to expect with a four year old!

Fortunately, his teacher was back to school on Thursday and we quickly located the FM transmitter and case. The Phonak Inspiro only takes about 10 minutes to fully charge, and I had the unit set up and running by the start of class. I have a feeling we'll be playing "hide and seek" with the FM system every time there is a substitute, so I'll be sure to check his backpack immediately after school each day. It wouldn't have helped much in this case, though, because the unit was actually located on top of an 8-foot high cabinet.. I would never have found it while searching after school!

Nolan has been quite full of stories lately, too. He told me that it was "G" week and the teacher surprised them by bringing in Golden Retrievers. According to Nolan, there were three puppies and a mommy dog in a large crate, and the children got to take turns holding and petting the puppies.

I told his teacher how awesome she was for bringing in puppies for the letter of the week, and she simply said, "Puppies?"

Hmm... as it turns out, there were no puppies, but we do have a four year old boy with quite the imagination! Perhaps he's just trying to plant some ideas for when "G" week rolls around!

What a Week!

Nolan is doing great. His energy levels remain high (sometimes a little too high) and his reflux has been fairly manageable the past week or so. His school bus brings home a very happy boy, who simply loves all of the activities his teacher comes up with. Last week was "fire week" and they did the letter "F" and fire safety drills. He also made the really cute dalmatian hat in the picture. This week is pumpkin week - they have been determining if pumpkins will float (they will), carving pumpkins, and learning about the life cycle of pumpkins.

I, on the other hand, have been having a really... "interesting" week.

On Monday, just before Nolan's school bus arrived, I let the dog inside. I went upstairs to clean up the kitchen, then walked downstairs. Something squished. And then something crunched. Looking down, I saw what could only be described as The Massacre of The Squirrels. Somehow Casey had smuggled his prey inside, and it was now all over the living room.

To prevent the trauma of a young preschool aged boy, I had to dispose of said squirrel parts quickly. We had no paper towels (and paper towels were not up to this job), so I ran for the shovel. And carpet cleaner. Fortunately, I managed to fling the bulk of the squirrel into the woods before Nolan's bus arrived. Unfortunately, I have bad aim and the squirrel ended up hanging from a tree. When Nolan came home, I fed him lunch upstairs and rushed him off to his X-Cel class, to prevent him from seeing squirrel-parts-in-a-tree and squirrel-remnants-on-the-carpet.

I was extremely thankful that he was safely ensconced in preschool as I worked to clean up the heavily stained carpet. It was horrid. After shampooing the carpet twice, I figured I would hit the main level of our house. Might as well, since I already had the equipment out.

As I shampooed the upper level, I realized the dirty water container was full. I unlatched it from the machine, and carried it to the kitchen. That's when the lid fell off, causing the contents of the bucket to spill all over the tile, carpet, and walls. There's nothing like squirrel water splattered all over the house to make the day a little brighter! Since it was time to pick up Nolan, I simply threw bath towels over the whole mess and ran to the preschool.

Once home, I picked up Matt from his bus and then picked up Dennis from work (we were down to one car). Dinner was at Friendly's that night, because Squirrel Water = dinner out. It's a simple equation.

Tuesday morning brought a flood of activity to the house - literally. We woke up to a very flooded basement - about a foot of water was standing in the room. The water line to our ice maker had become detached in the night, and the water pump continually pumped the water onto the tile floor (which dripped right down into the basement). Those things can produce an amazing amount of water. The majority of Tuesday was spent with a shop vac and a sump pump. On the plus side, this water did not contain any traces of squirrel.

The rest was spent in the Walmart vision center - we took Nolan's bent frames in to get them straightened out, but the lab tech broke them when he tried to straighten them. Nolan walked out of the store with a brand new pair of glasses, after we convinced them that they really needed to be replaced immediately since he has amblyopia and we don't want to risk the vision in his right eye.

Wednesday has been sedate so far. No squirrel massacres, no flooded house, and all vision/hearing equipment is intact.

The week can only get better!

Loving School

Nolan has been doing wonderfully this week. Other than an incident at 4:00am when the C-Pap machine went crashing to the floor (inspiring a brief panic over a possibly-broken machine), the week has been entirely uneventful and Nolan has been full of energy.

He adores school. Absolutely adores it. Every morning, he takes off running for the school bus with a smile on his face, and he comes home every day with stories of his adventures. Here's a sampling:

"I played in sand today. I didn't play with C---- because he wasn't there. I don't like L------ because she hits me. She goes in time out. I like Loghan because she is nice to me. We like to play."

"We paint today. We make a fire truck."

"There is a book in my backpack. Everybody make it. B---- likes pink apples. I like green apples."

I absolutely love these days. Matt is enjoying school, too. I did have a bit of a panic attack/mama bear moment when this came home in his backpack:

The bright red "Not Acceptable!" caused deep concern. There was no explanation for the bad mark, and since Matt is only five years old and can't read "long" words like acceptable, the note had to be meant for the parents. I wasn't sure if Matt's coloring in the circled objects was the issue, since the written directions simply say to circle the like objects. I felt it was a little harsh to criticize a five year old child for some extra doodling.

Then I wrote to the teacher and got the rest of the story.

Apparently, the verbal instructions were to circle the similar objects and then color the pictures with their best work. Matt decided to take the slacker route and scribbled quickly to get the assignment over with.

The teacher had discussed "not doing his best work" and they both decided the work was "not acceptable" prior to writing it on the paper. Matt has been doing his "best work" ever since, so this was a good lesson for him. I do wish I had had the explanation before the mama bear claws came out, though!

We are dealing with a bit of a conundrum with Matt. He's very "able" in the academic realm. By "able," I mean he came to me the other day and said, "Mom,  3 + 3 + 4 is TEN!" His next sentence was, "I think 9 plus 10 is nineteen - is that right?" His emotional and maturity level is at the kindergarten stage, but he needs more academic stimulation. Fortunately, his teacher is willing to provide it. He was able to do the "circle the like objects" thing at the age of two, so these worksheets are more "busy work" for him than anything else. He really needs first grade level math worksheets, so we're working on getting him more appropriate work.

Matt absolutely loves his class, and particularly loves gym. I had forgotten about games like Steal the Bacon. It is so fun to hear him talk about these things. I wish I could have foreseen this talkative, bright boy when he was so speech delayed at the age of three. It would have relieved a lot of worry!