Friday, October 29, 2010

Pre-Literacy Skills? Sign Me Up!

Matthew had a flier in his backpack about a "Pacer" program through our local elementary school. Apparently, it is run through a grant with the local learning council, to increase the pre-literacy skills of the younger sibling(s) of the current Pre-K or Kindergarten student.

I called the leader of the program, and they took us into the program- Nolan is the "Pacer" student. They have been studying the children in the program, and they tend to have higher reading skills than the children who do not participate in the program. Since I'm all about being pro-active with regard to Nolan's communication and literacy skills, I was thrilled to participate in the program.

The Pacer leader comes to our house one time per month, leaving scads of materials (including free craft materials like construction paper, crayons, and glue sticks). She reads to the boys, has them act out stories, and does a craft with them. This month's craft was to make some dice out of a foam block and stickers, then to play a game with the dice. The boys would roll the dice, then select the proper number of blocks from a pile (one-to-one correspondence). They also did several puzzles with the Pacer teacher.

Nolan selects three blocks.

Both boys love the block game.

Before she left, she handed me two red bags filled with various activities to do with the boys over the next month. This program emphasizes the "Parents As Teachers" philosophy for very young children. Our activities include making apple cider (a kitchen craft in a bag activity- measuring and math skills), making an apple mosaic (tearing paper and gluing for fine motor skills), making a book with a very short story that Nolan can memorize, and several other preschool level activities.

She was impressed with Nolan's letter recognition skills and various other skills. This made me very happy, since this program is a mainstream pre-literacy program. I love hearing how well Nolan is doing, and when it comes from a mainstream teacher, it is all the better! We are attending a Pacer program picnic at the kindergarten next week, and I am excited to see what the kids are going to do. Everything about this program has been simply wonderful already, and I'm sure Nolan's pre-literacy skills are going to be awesome by the end of this year!

Tuesday, October 26, 2010

A Much Better Night

Nolan's nose is still a little runny, but he didn't have any difficulty breathing last night.* It was nice for us all to get some rest, and hopefully Sunday night was just a fluke.

In other news, we met with Nolan's new Teacher of the Deaf last Friday, and she is absolutely wonderful. It is nice to have someone who knows what "figure-ground" means (skills relating to hearing in background noise). She is going to bring us a pre-literacy hierarchy list and keep us headed in the right direction for Nolan's overall academic success. We have a once-per-month consultation with her, so we get regular guidance throughout the school year. Nolan's language skills are really great, but he does have some socialization and sensory integration issues (oddly enough, he is overly sensitive to lots of sound). By working on pre-literacy skills, we hope to give him a running start for kindergarten.

*Other than his typical breathing difficulty, that is. He still woke up and wandered around for an hour or so, but that is "normal" for Nolan!

Monday, October 25, 2010

Rough Night

'Tis the season for colds and other nasty viruses. We've been really fortunate this year, and Nolan hasn't been hit as hard as he usually is. Yesterday, the trademark red rings appeared under his eyes and he was a little crankier than usual.

At bathtime, he dunked his head under the water and came up screaming, clutching his left ear. The pain wore off and he seemed fine, so I wasn't too concerned. He went to bed fairly easily, which is a rarity for Nolan.

At 2:00am, what shall henceforth be called The Worst Night Ever began. He came into our room crying, and crawled onto our bed. He was struggling to breathe. His breath was making a "clicking" noise in addition to a slight wheeze. He started to fall asleep, but choked and woke up screaming. The rest of the night went as follows:

2:30am: I want go MY bed. Put me my bed! *I take him to his bed*
2:45am: I want go MOMMY'S bed! Waaaaahhhhhh! *I bring him back to our bed, gasping and wheezing.
3:00am: I want go MY bed. MY BED! MY BED!
3:20am: I want MOMMY'S BED! *chokes*
3:40am: I want go MY BED!

At this point, I made him stay in our bed. He was wheezing and gasping, and then if he adjusted himself correctly, he'd be OK for a few minutes. If he fell asleep, he'd start choking and gasping.

I'm really glad we didn't have a sleep study last night, because I'm pretty sure his oxygen saturation would have been terrible. I've never seen him do this before, so we are definitely mentioning it to the ENT. He fell asleep for good at about 6:00am.

When he woke, I thought we'd see a lot of congestion. He does have a slight runny nose, but nothing significant enough to cause that level of breathing difficulty. Hopefully he was just having an "off" night, because I don't think we can take another night of breathing issues coupled with no sleep.

I'm keeping an eye on his left ear (a little tender when I put in his hearing aid) and on his congestion/breathing. If he isn't any better tonight, then we're heading out to the pediatrician.

I really dislike germ season. Ugh.

Sunday, October 24, 2010

Our Language Experience Beats Your Language Experience

Sure, sure.. lots of kids visit the fire station. But how many get to drive the fire engine around town? We did!

Thanks to the Chautauqua County volunteer firefighters for this awesome opportunity!

This post brought to you by the letters: A-W-E-S-O-M-E.

Friday, October 22, 2010

Where Have All the Esses Gone?

If you are sitting right next to Nolan in a quiet environment and say the "S" sound in isolation, he can detect and reproduce it. The "S" sound within a word, however, is completely masked by the louder vowel sounds- and he can't hear the "S" sound if you are more than 3 feet away.

Why is "S" so important?

  • It denotes plurality: duck vs. ducks
  • It shows ownership: Bobby's toy
  • It stands in for a full word in contractions: She's going to the store.

To check how well Nolan is hearing across the speech frequency spectrum, we do daily "Ling Checks." If he can detect and discriminate these sounds, then we know he is hearing across the full speech spectrum for the English language. Here is an example of Nolan responding to the Ling sounds with his hearing aids on, from a distance of three feet.

He can't hear the "S" sound, even with his aids on. This is the problem of under-amplification. We are in the process of getting a "third site" hearing evaluation performed for Nolan, but I doubt they'll get an aided audiogram done at Buffalo Children's (I'm certainly asking for one).

One way to address the situation is the use of the FM System, which adds about 15dB to the sounds Nolan is receiving. It helps solve our "disappearing S" problem. Here is the same Ling test, using the FM System:

Using the FM System, Nolan can hear the "S" sound. This is not a perfect solution to his problem of under-amplification, but it will help him learn to detect and discriminate the sound within words. Once I can get the FM System set to the recommended 50/50 mix, he will be able to wear the FM system on a more regular basis and will (hopefully) begin spontaneously adding the "s" sound into his speech.

Thursday, October 21, 2010

The Object of Envy: FM Systems and Distance Hearing

Tuesday afternoon, the boys and I took a trip to Buffalo to get Nolan's hearing aids programmed to accept the input from his new FM System. It was a trying afternoon (lots of fighting in the audiologist's office and one child bit the other), but well worth it. The new FM System is working brilliantly, though it is taking Nolan some time to get used to the set-up.

FM Systems have three modes:

Off: Nolan hears through his hearing aid microphones only- the FM System is not activated.

FM only: Nolan hears through the FM System only, and does not hear any noise through his hearing aid microphones. This means he can hear the speaker's voice very clearly, even over a large distance or in the presence of loud background noise.

FM + Hearing Aid Microphone: Nolan does NOT have this feature activated yet, but we will ask his audiologist if it is possible to do a 50% mix of FM and Hearing Aid Microphone when we see her again. Sometimes, hearing aid and FM system incompatibility cause issues with doing a "mix." Hopefully Nolan's Unitron hearing aids can handle this type of program.

Nolan's first reaction to the FM System was to hate it. "It's OFF! I can't hear! Turn my hearing aids on!" This was rather disappointing. I had hoped he would love it straight away. He found the location of his program buttons and learned how to shut my voice off in 0.05 milliseconds. He far preferred hearing all of the sounds around him as opposed to hearing only my voice.

There is a learning curve for the FM System- for Nolan and for me. Since he has the "FM ONLY" option, we are learning the appropriate places to use the system. Using it during group activity times is not really appropriate, because he can't hear his peers. Using it for Circle Time, speech therapy, and for distance hearing is appropriate.

We stopped at McDonald's on the way home from the audiologist, and I turned the FM System on before releasing Nolan into that Habitrail for children known as Playland. The FM System was awesome: I called his name when it was time to leave, and he came right out. The other mothers stared with envy- I'm pretty sure they all wanted a direct radio-link with their children at that moment.

Of course, Nolan came out of the Playland, looked at me, and said, "I turn you OFF!" Then he turned and ran back into the play structure. Barring his ability to turn me off, the FM System is awesome.

We're using it for about an hour per day now, and Nolan is adjusting beautifully to wearing it when we are doing structured activities. His distance hearing is pretty shoddy, since he is underamplified. Three year olds tend to run like crazy and have no concept of danger. Since not getting squished by a car is pretty important, his ability to hear outside of a 15 foot distance is vital. Here's an example of Nolan's distance hearing without an FM System:

As you can see, he doesn't hear at all in this environment as distance increases. This is why my blood pressure is generally through the roof as he approaches our street on his tricycle, and can't hear me yelling at him to stop. There is a lot of panicked running with a hard-of-hearing preschooler who can't hear cars coming.

In contrast, here is his distance hearing with the FM system:

His ability to hear over distance with the FM System is nothing short of amazing. He can hear us calling for him to stop or to be careful. We plan on using it at the upcoming Zoo Boo trick-or-treating event, so he can hear us in the extremely noisy and crowded environment.

Next Up: The FM System and the Letter S!

Wednesday, October 20, 2010

38 Months: Speech Sample

Nolan is in a very "active" phase right now, so it is hard to get him to sit down for a chit-chat. I did manage to maintain his attention for a few minutes to get a good speech sample:

Thursday, October 14, 2010

A Long Day, Part II

Remember when I posted a video of Nolan snoring, a while back? When we first suspected that he might be waking in the night because of obstructive sleep apnea? The video is here- go watch it; I'll wait.

He's pretty loud, and we don't hear it all the time. The tonsillectomy and adenoidectomy didn't fix it. The reason the T&A didn't work is:

Nolan is NOT snoring.

That is the sound of his airway collapsing, just above his larynx (voice box). He has inspirational stridor, caused by a floppy airway.

He has laryngomalacia. Pronounced La-Ring-O-Malacia.

For my friends who have infants with laryngomalacia, keep in mind that this is generally a very benign condition of infancy, most children outgrow it, and most children have no other associated issues with oxygenation, growth, or other problems (other than noisy breathing). Almost all babies outgrow the laryngomalacia by the time they are two years old, and never look back.

Nolan does not have the "mild" (though loud) infantile laryngomalacia. In fact, he never had noisy breathing as an infant at all (other than the "snoring").

His breathing is obstructed, causing oxygen desaturation at night. He has severe GERD and mild delayed gastric emptying. He's finally on the charts, but he isn't exactly growing at a marvelous rate- we'll be lucky if he finally gets out of a size 2T by the time he's four.

Because his growth and health is affected, his ENT is recommending a procedure called a supraglottoplasty, which will remove the floppy tissue and cure the laryngomalacia. This will probably cure the obstructive sleep apnea, might cure the GERD, and should set him on the path to better growth. It will also stop the long-term health effects of obstructive sleep apnea, which includes rather nasty things like heart failure.

The supraglottoplasty is not an easy procedure. Should we elect to go this route, Nolan will be kept in the Pediatric Intensive Care Unit (PICU) on full ventilatory support for two days. His airway will be swollen after the procedure, so they will have to breathe for him until the swelling goes down. He will probably have trouble swallowing for a week or so.

We don't have very many options. They used to do tracheotomies for children with severe laryngomalacia, but since the advent of the supraglottoplasty, tracheotomies are very rare due to this condition (thank goodness).

The other options are to leave the situation alone and monitor, though his obstructive apnea (and laryngomalacia) have only gotten worse over time. The long term consequences include cor pulmonale and growth failure. C-Pap won't work, because the floppy airway will not be "kept open" by the air pressure (instead, it would just be pushed against the larynx, blocking his airway). The nasal steroids the sleep neurologist recommended would have been absolutely useless- the obstruction is not in his nose.

There is a very good likelihood that we will be undergoing this procedure, though Nolan has to undergo another 24 hour pH probe while on his Nexium, to prove that his GERD is under control. Laryngomalacia can recur in children who have uncontrolled acid reflux, so our first step in this little journey will be to get that reflux under control.If the GERD isn't under control, then we will have to do something to control it before embarking on the supraglottoplasty.

It looks like we're in for another very medical winter. We will see the ENT again on November 15th, where we'll get to watch a video of Nolan's laryngomalacia and make some decisions regarding his treatment.

If everything goes according to plan, he will be free of his laryngomalacia, obstructive sleep apnea, and possibly even his GERD by Spring.

Wednesday, October 13, 2010

A Long Day, Part I

Hanging out on the 9th floor of Buffalo Children's Hospital is generally a tense time for Nolan, especially now that he's getting older and understands what admission to the 9th floor means. He refused to stand on the scale to get his weight, so we had to get his weight while he was sitting and pouting on the scale. He refused to stand to take his height, so we sort of propped him up against the wall and got a close approximation (he's 28 pounds and 36.5 inches tall, for anyone that is interested).

We were very fortunate to be in the waiting area when a clown came in to entertain the children. We've never been on the same-day surgery unit when the "entertainment volunteers" were there. This took a great deal of stress off Nolan, and he really enjoyed interacting with the clown. He did a magic trick or two with her, and was able to keep the little police car from the magic trick. It is amazing how 10 minutes of fun makes the day so much more bearable.

Things actually moved rather quickly, and we were taken back to the surgical waiting area. Nolan refused to remove his shoes, so we left them on. I did have to take his hearing aids away just before he went into the OR, and he went ballistic. He equates the removing of his hearing aids with painful medical procedures, and screamed to keep them on. It was really tough handing him over to the nurse this time- it gets harder as he gets older and is aware of what is happening.

They used as little sedation as they could get away with, due to his central apnea. This is good, because it preserves his breathing. Unfortunately, it also means that he isn't as knocked out as a typical child would be, so his anxiety level is fairly high before and immediately after the procedure.

After the procedure, the ENT came to talk with me about what she found. His ears actually looked pretty good- the fluid we had seen a week ago had cleared up. She proceeded with the tube insertion since clear ears are a rarity for Nolan. I received Nolan's Floxin drops and pamphlet on the long-term care of PE tubes. Since this is his fourth set of tubes, we're old pros at taking care of them.

She then whipped out some pictures and talked to me about Nolan's laryngoscopy/bronchoscopy results. We have some answers, for at least one or two of his current issues. I'll save the details for Part II, but Nolan is going to have at least one or two more procedures in the near future. This finding could explain why he has such severe gastro-esophageal reflux disease, obstructive apnea, and poor weight gain/slowed height development.

I had a lot to digest, and went to comfort Nolan in the recovery room. He was beyond angry, screaming in his post-anesthesia rage. Once we got the all-clear to remove his I.V. and we were able to take him to the 9th floor recovery area, he was starting to calm down. I put his hearing aids back in, we gave him a Popsicle, and we let him watch Wow Wow Wubbzy on the hospital television. We were released at 2:00pm, and Nolan was quite happy to get buckled into his car seat for the ride home. When I pulled his earmolds out that night, they were coated with blood- the first time we've seen that side effect from tubes.

He is absolutely fine today, though he still hates the ear drops required after tubes are placed. His ears are clear and he's playing quite happily. We will return to the ENT on November 15 for our follow-up visit, so we will have a little break from the medical whirlwind. Goodness knows, we need it!

Monday, October 11, 2010


Sorry about the lack of posts, but the weather has been absolutely stunning here lately. After three weeks of solid rain, we had warm temperatures and crystal clear skies. We've been outside playing, visiting farms, and collecting leaves. The boys absolutely loved visiting our local Port Farms, to play in the corn box. I'm just grateful we didn't lose a hearing aid in all of that corn!

We are gearing up for Nolan's bronchoscopy and fourth set of tubes tomorrow. He knows he has to go to the hospital tomorrow to "fix his ear," though he insists his ear is Not Sick. His nose has been running off and on, so the chances of fluid behind his eardrum are pretty good (especially since he had fluid when we saw the ENT a couple of weeks ago).

Hopefully the bronchoscopy will shed some light on why Nolan has such severe obstructive sleep apnea, so we can address the problem with the right solution.

Even though we've done this particular surgical dog-and-pony show before, I'll be glad when it is over and we can get back to "regular life." Going through the preparation and waiting on the 9th floor of Buffalo Children's is extremely anxiety provoking for Nolan, so keep us in your thoughts tomorrow! Hopefully this will be the last procedure for a long, long time.

Tuesday, October 5, 2010

Well, That Was Underwhelming

The red-ringed eyes, the crankiness, and the slimy nose caused me to brace for the onslaught of a Very Bad Cold. When Nolan gets a cold, it is usually a protracted one- which results in the inevitable ear infection.

All I have to say is that someone said a very effective prayer, and Nolan's cold seems to have vanished into thin air. He is still rather cranky, but the nose has cleared up and he has no congestion. With surgery in seven days, I am much relieved.

We did receive Nolan's Occupational Therapy evaluation in the mail, which shows that he is above age level for "grasping" and only minimally delayed in visual-motor integration. Nolan has mild hypotonia (the reason for his long-standing head lag and weak hand strength), so it was good to see that he is developmentally appropriate in these areas. We had never suspected a delay, but it was nice to get the objective verification that his fine motor skills are hunky-dory, and he simply needs a few hand strengthening activities to help him along. I, for one, am thrilled he doesn't need any additional therapy. I far prefer spending our free time playing outside or doing crafts!

Sunday, October 3, 2010

Germs, Germs, Go Away

School started about a month ago, which means that the lovely back-to-school viruses have been making their rounds. I hate colds, because Nolan gets sick even when it isn't cold and flu season. And when he gets sick, he is usually sicker for longer than the rest of us.

I was pleasantly surprised that Nolan didn't catch the latest bug, and whispered a quiet prayer of thanks, since his surgery is fast approaching. Then he woke up this morning. To say he was cranky would be a vast understatement.

We survived shopping at Wegman's, with a screaming child throughout the store. Then I took a closer look at him and saw the red circles under his eyes. By the time we got home, his nose was running. He felt a little warm. He is still very, very cranky.

Dear Mr. Cold Virus,

Please be gone by October 12, and please do not cause another infection in Nolan's (tubeless) ears.

Thank you very much,

Nolan's Mommy.