Busy, Busy, Busy

This week has been fairly busy. Not in a "lots of crazy medical appointments" sort of way, but in the normal preschool-program-playground-visiting loveliness that comes with May.

Nolan did break the nose pad on his glasses, so we took a trip to Walmart to get the nose pad replaced. His glasses have a saddle-nose bridge piece, which does help the glasses to stay up on his face.


Unfortunately, the glasses still sit pretty low and he spends most of his day looking over the top of the glasses. With amblyopia, this is a very bad thing: he needs to look through the lenses to get his brain to recognize the presence of the weak eye. We return to the ophthalmologist in June, and I have a suspicion Nolan will be going Pirate-style with an eye patch this summer.


Matt has decided to give us a run for our money, too. He is, overall, very healthy. Unfortunately, he has never been dry during the day. Now, at five-and-a-half, this is becoming an issue. We go through an incredible amount of laundry, and obviously we don't want him to start kindergarten with an embarrassing continence issue. We see the pediatrician next week to address this: the first course of action is to try a drug called DDAVP to see if that helps him become dry during the day. We may also have to do some tests, since Nolan has a urology problem that can be seen in brothers (the posterior urethral valves). It is highly unlikely that Matt has the issue, since it only occurs in 1/8000 male births, but the consequences can be devastating if it isn't corrected. I'm really hoping the DDAVP is all he needs, because then all we need to do is "watch and wait" for his bladder to mature.

I'm also still waiting on Nolan's sleep study results. They are probably already in at the Pediatrician's office, but I will wait until next week's appointment to pick them up. In the meantime, we're just praying that the apnea is gone.

Nolan's Urgent Message

"Mom! Mom! My glasses are DIRTY!"

Yes, son. That would happen when you color on them with crayon.

Sigh...

Approved

Growing: Nolan is now 38" tall!

After our insurance sent the denial letter for Nolan's Nexium, our ENT's office sent another request to have the medication approved. While there is a possibility that the Prilosec will work adequately to control the reflux, the effects of it not working would be disastrous.

We received the approval letter in the mail today.

If the Prilosec worked, life would have been OK. If it failed, we would have been faced with more airway surgery and more complications down the road. In addition, the Prilosec package insert says that the 20mg pills does not have the same bioavailability when emptied into applesauce (a requirement for children too young to swallow pills): "PRILOSEC Delayed-Release Capsule 20 mg was not bioequivalent when administered with and without applesauce. When administered with applesauce, a mean 25% reduction in Cmax was observed without a significant change in AUC for PRILOSEC Delayed-Release Capsule 20 mg."

The Nexium comes in a 20mg oral suspension, which does not affect the bioavailability of the drug at that strength.

I am greatly relieved that the insurance company approved the Nexium. Nolan's acid reflux affects his airway, which makes monkeying with the effectiveness of his medication quite scary.

We can take a deep sigh of relief and know that his medication approval is secure for the time being.

Hashing Out IEP Goals

Spring is here, and certain parents know what that means: IEP season has arrived. For those that don't know what an "IEP" is, it is an "individualized educational plan" written for children who need educational supports or other specialized education.

For Nolan, the IEP is put in place because of his hearing loss. This is an interesting dynamic, because Nolan's language tests as age-appropriate, and he has no delays. If he were older, we would consider placing him on a 504 plan (this provides physical accommodations for children with physical handicaps).

Nolan is, however, only three years old. We want him to have a "running start" into kindergarten, to strengthen pre-literacy skills, and to have coping skills for situations where his hearing will inevitably be impacted by background noise.

His IEP meeting is on May 25, and we have to hash out some goals for the little guy. There are some areas which need some work, so we have come up with the following goals:

• Nolan will initiate peer interactions. Currently, Nolan will only initiate interactions with adults. In the classroom, he will only partake in parallel play unless aided by another adult. He will never initiate social contact with another child. He's come a l-o-n-g way, but socialization is very important, so we will place this goal into his IEP.
• Proper use of pronouns. Everyone is a "he" or a "him," which makes sense. Our household is almost entirely male! For some reason, Nolan has also reverted back to referring to himself in the third person nearly all of the time. I'm not quite sure where "my," "me," and "I" have gone!
• Articulation. Most of Nolan's articulation errors are age-appropriate (like fronting: using a /t/ for /k/and his use of /w/ for /l/), but he has some related to his hearing loss (confusing M and N). Most of the time, he is intelligible to a stranger, like any other child his age. Occasionally, the articulation errors compound in a single word. "Nilt" is "milk" - a stranger may not understand this word out of context.

Anyhow, I am looking for goals appropriate for a child turning five years old. The IEP will be in place next year (when Nolan is four- going- on- five years old), so I need great goal ideas for a child getting ready to enter kindergarten! Hearing loss mamas out there, do you have any great pre-literacy goals/auditory goals/self-advocacy goals? We are trying to keep the number of goals down on the overall IEP (easier to chart and track), but ideas are most welcome from those of you who have been-there-done-that!

Sleep Study #3

Chilling on the couch after a long night!

Last night went really well, all things considered. Nolan watched his portable DVD player all the way up to Buffalo, and seemed to be in a rather good mood. We checked into the 9th floor sleep study unit - Nolan recognized the floor as the same-day surgery unit, and was upset because we didn't go to the playroom.

Our regular sleep study technician is no longer working there, which was a bit of a bummer since he knows us by name. The new technician was really wonderful, though, and had Nolan attach all the wires and leads. He fussed for a minute about the nasal cannula, but didn't seem to care after a few more minutes. We had 'lights out' by 9:00pm, so the hook-up went really fast!

He was probably out by 9:45pm, and I could hear him breathing with his typical stridor. It wasn't as "heavy" as it is sometimes, but it was definitely present. This doesn't necessarily mean anything, because kids with laryngomalacia will often continue to have stridor, even if the apnea is gone. I did watch the CO2 monitor for a while and saw some spikes to 55mm Hg along with a reduction in respiratory rate (normal is under 45mm Hg) - this might be indicative of some hypopneas or apneas. The alarm went off on the CO2 monitor in the morning, due to condensation in his nasal cannula. The sleep study was almost over, so the technician disconnected the in-room unit so we wouldn't have to hear the constant alarming. We won't know until we get the sleep study back in two weeks.

The sleep study technician was optimistic - "He's been through enough! Let's pass this one, little guy!" At 4:45am (wake-up time), she noted, "He did really well. He slept on his back a lot last night!" She's not allowed to tell us how the sleep study went.

Of course, now I'm trying to read meaning into her statement. "He did really well!" could mean that his apnea is gone. Or it could mean that he was a real trooper and did a great job with cooperating. Does sleeping on his back indicate that he is breathing better?

I have to stop it, because we simply won't know anything until we get the official report back. Of course, this means that in 10 days, I will begin calling the pediatrician's office to see if the official report is in - the stress of waiting for test results can be quite annoying at times.

Nolan did get an "award" for cooperating so well - he was quite pleased with the Lightning McQueen stickers. This technician was really wonderful with kids - she gave him a Lightning McQueen blanket and a Lightning McQueen pillow to sleep with. Our former technician never gave us cool stuff to sleep with! She also gave Nolan some crayons and a Batman notebook. Batman is Nolan's second favorite superhero (Spiderman > Batman > Superman). He was quite pleased with his spoils - he has already drawn a "rocket ship that can't go because a little fly is sitting on it" in his notebook.


This nurse was really amazing - she won't remove any of the stickers in the sleep lab, because she doesn't want the kids to associate sleep studies with any "ouchies." She gave me some adhesive removal wipes and we went home with the stickers still attached. Unfortunately, Nolan regards these things as his "powers" and wouldn't let me take them off. I finally convinced him to let me take off the ones on his face - he is still sporting the EKG leads and the leads on his legs.

We did give him a shower to get the goop out of his hair, and then he proceeded to run around the house like the energizer bunny hyped up on speed. It is 9:30am now, and he has crashed on the family room sofa, while watching Signing Time.

Now we just have to sit back and wait for the test results!

Let the Exhaustion Marathon Begin!

Nolan has his third sleep study tonight. Basically, this is a test of how long Mommy can survive without sleep: we will leave our home at 6:00pm to make the two hour drive to Buffalo. We check in to Buffalo Children's at 8:00pm, and the hook-up begins shortly thereafter. The hook-up involves many different electrodes, wires, and belts - usually the process is complete by 9:30 or 10:00pm. Then the technician turns the lights off, and leaves.

Nolan usually falls asleep in less than an hour. I, on the other hand, stare at the CO2 monitor and watch his breathing. Since Nolan is connected by so many wires and tubes, they get tangled frequently - which requires the sleep technician to come in and disentangle the mess of wires. I would guess that I manage to sleep about 3 hours during the sleep study - the lights come on at 5:00am, and I drag a goopy-headed Nolan to the car for a 2 hour drive home. Thankfully, Dennis is going to take Matthew to school in the morning: this means I get to take a shower before doing Nolan's speech therapy and doing the afternoon routine. Matt has a school program tomorrow, so I will be going from the Pre-K pick-up spot to drop Nolan off at the babysitter's house, then to Matthew's "Mommy and Me Tea."

I suspect I might be a zombie by Wednesday evening - just in time for swimming lessons!

All kidding aside, I truly hope Nolan passes this sleep study. On the one hand, it would be really nice to ditch these tests. On the other hand, we really don't want to have to do a revision supraglottoplasty for his laryngomalacia. If he passes the obstructive apnea portion, we should be free and clear. The central apnea was markedly reduced at the sleep study in August, so I have all of my fingers and toes crossed that this sleep study shows a clear airway and no apneas.

Swimming Lessons Are Fun

I wasn't quite sure how swimming lessons were going to proceed with Nolan. He certainly loves the water, and he is convinced he already knows how to swim. Matthew, being the sage, older brother, advised him: "No, Nolan. This is different. You can't touch the bottom in this pool." His words were said with a hint of dread, because Matthew is a wee bit terrified of water.

I was extremely relieved and happy to see the coordinator arrive. She was Matthew's infant swim teacher, and is aware of some of the medical hullabaloo we've gone through with Nolan, including the minor "he can't hear" issue. I talked to her for a second, explaining that he can hear within a distance of about 5 feet in a quiet environment, but that you have to shout if you get outside of that range. I had no idea how he would fare in the poor acoustic environment of the indoor pool.

The coordinator called down a second life guard to get into the pool with Nolan. This turned out to be a very good idea, since it is hard for people to remember that he can't hear. The practical implications of this become very obvious when the teacher tells the class to get their float packs. Nolan didn't hear the instruction, so he just started walking down the side of the pool with another class. The second life guard realized he was wandering off, and told him to stop (which Nolan couldn't hear). Fortunately, the guard realized this fairly quickly, and went to physically stop him and help him back to the rack containing the flotation backpacks.

This happened a few times - Nolan ended up sitting with the wrong class or wandering off in the wrong direction at the beginning of the class. Once he was sitting on the edge of the pool (and facing his teachers at all times) things got a little easier.

I am going to make up a set of simple sign-language flashcards, because it is quite apparent that Nolan can't hear anything in the pool area. He did really well, despite not hearing, because he absolutely loves the water. He was squealing with delight and splashing at the water as he took his turn swimming in the water with his appointed life guard.

I was worried about how he would cope without his hearing during swimming lessons, but the YMCA has bent over backwards to make sure he is (1) safe, and (2) getting an appropriate level of instruction by adding in a second teacher to the class.

You can see how much fun the little guy is having during class - if you can see his face in the video below, he is all smiles!



[There is no audio/speech in the video, just background noise from the pool environment]