Wordless Wednesday: The Littlest Tagger

Mommy Summer School

We have been having a very crafty week, doing different activities with a picnic theme. Both of our boys have weak fine motor skills, so we have been doing a lot of cutting and coloring lately.

First, we wove placemats. Matt did his by himself, cutting out the strips and weaving them. I did supply the small cut-out shapes, upon his request. I did an example alongside his version, so he could see what to do next. Nolan glued the little hearts and stars on the sample - in the meantime, he was cutting freehand from a supply of construction paper. Nolan isn't quite ready to cut on a line yet, so we just give him a pair of scissors and let him cut paper into bits.

Next, we made picnic baskets. Matt cut his out by himself, and I stapled on the handle. I'm working on the short vowel sounds with Matt right now, so he cut out an apple, egg, insect, olive, and umbrella- almost entirely by himself! I cut out the umbrella's handle, since that was a little more difficult for him, but he cut out the triangle portion of the shape. His ability to cut on a line has really improved, and cutting on a line is an important pre-writing skill.

I cut Nolan's shapes out for him while he cut more "shapes" out of construction paper. Both boys colored their picnic baskets and enjoyed pretending to go on a picnic. I'm not sure what our project will be tomorrow, but it might include gluing little tiny seeds on a paper watermelon (more fine motor skill work)!

Sleep(less) Study #2

It started raining on our drive up to Buffalo Children's yesterday evening. Sleeping in one's clothes is never a comfortable business, but sleeping in damp clothes is rather unpleasant. Ugh.

We checked in at 8:00pm and were old pros at getting hooked up- Nolan got into his jammies and we started applying the 6 quatrillion leads and wires to his body. Two leads on each leg, a few on his chest, several on his head (including under his eyes and on his chin), two belts around his chest, and a nasal cannula for monitoring CO2 on his face. And the pulse-ox, too. We can't forget about the pulse-ox.

Nolan was generally a good sport, though he did get anxious from time to time and declared, "These stickers hurt me!" They didn't really hurt, of course, but Nolan was worried the would start to hurt, or were harbingers of worse to come. The pulse-ox brought more tears, and we gave him the option of wearing it on his toe or his finger. Through sobs, he announced, "ON MY FINGER!" The nasal cannula was the coup de grâce, causing general shrieks and outrage. He settled down fairly easily, however, and was soon only whimpering about getting the "tubie" off.

I promised him that if he went to sleep, that we would take everything off in the morning. He looked at me and said, "Sun come up, take tubie off. Take stickers off." This seemed to calm him down greatly, though he was still anxious. The pulse-ox on his finger was of considerable concern. He decided he'd rather have it on his toe, or better: he'd rather have it taken off entirely.

A flash of brilliance entered my mommy brain. "It's a light saber. You're a Jedi." Adding in some detailed accounts of how jealous his brother would be to have a light-saber-finger sealed the deal. Nolan started battling "light sabers" with his fingers, and fell asleep in short order.

I stayed awake for a while to watch his CO2 monitor (his respiration rate and CO2 concentration are the only monitors in the sleep study room). I'm pretty sure he had some apneas, but we won't know for sure until we get the report back from the neurology center on August 19th. In any case, he slept better than he did for the last sleep study, giving us a good deal of sleep time to monitor his breathing.

I happened to wake up at 5:00am, which was good because the Sleep Study center comes in to wake everyone at this time. The technician came in and we unhooked Nolan from his myriad tubes and wires. The EEG goo left his hair looking rather disgusting, so I washed some of it out in the sink. I just got his temples, but it was enough to allow him to wear his hearing aids again! It was a relief to get to the parking garage, because we looked like zombies- covered in splotches of goop with a bad case of bed-head.

70 miles later, Nolan fell asleep again. This was rather convenient, because I placed him on the couch and brewed the Biggest Pot of Coffee That Ever Existed.

I'm going to end this post now, because the coffee is calling. Here's to a good report, with no future sleep studies required!

Creepiest Experience Book Ever

I thought I'd make an experience book for Nolan's sleep study tonight. It is a useful way to discuss the test and help him understand what will happen (and also, a way to reassure him that nothing will hurt during the test).

Since I don't have any photographs of Nolan's last sleep study experience, I had to draw the pictures. This is where the creepy comes in- I do not have any artistic talent. So my attempt to illustrate the process of putting the "stickers" on (EEG leads) is rather frightening:

Not only does Nolan lack hair, but it appears that his head has been taken over by a many-tentacled monster. Also, the technician looks a little too happy to place the leads on Nolan's noggin. I probably should have used clip-art, but there is no clip-art for sleep-study pictures. My horrifying rendition of the sequence of events is all I have, so I thought I would ditch the book before Nolan could see the seriously freaky images I drew.

Unfortunately, Nolan found it before I could toss it. And guess what? He loves it. He wanted me to read it about four times in a row, even with the creepy pictures. In my defense, not all of the pictures are creepy- some are even cute. Who can resist a gauze-headed cartoon Nolan?

I think the next experience book will feature photographs, though. Otherwise, we'll have to start investing for his future therapy bills!

Of Birthdays, Preschool, and Sleep Studies

Yesterday, I received Nolan's preschool registration papers in the mail. On one hand I can't believe my baby is ready to head out with a tiny backpack and join a class of other children-the time from his birth to now seems far too short to produce a three year old child. On the other hand, Nolan is incredibly ready for the extra enrichment that a preschool program provides, and I am thrilled that he will be in a class with many of his friends.

His birthday is at the end of this month, and I want to throw a small birthday party for him. One with only a few children, of course- owing to his age and to his general dislike of noisy situations. I don't have anything put together yet, but it will consist of dinosaurs (Nolan's favorite animal), cake, and possibly a pinata.

Before preschool and birthday parties can commence, however, we have one last medical hurdle to clear. Nolan's sleep study is on Monday night, and I am praying with every fervent bone in my body that the central sleep apnea will disappear. If it disappears, then it means all of the apnea was caused by his acid reflux (reflux inflames the tonsils, which then causes obstructive apnea, and long-standing obstructive apnea can induce central apnea spells). If it doesn't, then he has a separate neurological issue causing the apnea, and we will have to begin bi-pap trials.

Here's to a successful sleep study, completed birthday party planning, and a great year in his three-year-old preschool class!

On Conductive Hearing Losses

In many cases, conductive hearing losses are caused by earwax or fluid in the ears. This condition is both temporary and easily remedied (with wax removal or pressure-equalization tubes to allow the fluid to drain).

Since Nolan was discovered to have a large conductive component to his hearing loss (the frequencies from 250Hz-1000Hz have a large air-bone gap), I have been trying to figure out what could cause this component. It is not caused by fluid, infection, or any other temporary situation. It has been there since birth, and has not improved with the insertion of PE tubes. In fact, it has only gotten worse or fluctuated over time. In addition, he has had several hearing tests with type A tympanograms (no fluid), which demonstrate a hearing loss with a clear middle ear space.

With some research via Dr. Google, I have found a few causes for air-bone gaps (conductive hearing losses) in children. They include:

• Ossicular malformations (the middle ear bones are malformed). Nolan's CT scan at the age of six months states: "Bony ossicles are well formed. Middle ear cavities and mastoid air cells are clear." The CT scan rules out any malformation of the middle ear bones.
• Atresia. This means the external ear canal is not formed and prevents the transmission of sound to the eardrum. Nolan does not have atresia.
• Congenital cholesteatoma. The MRI and the CT scan did not indicate any cholesteatomas present.
• Fixed stapes or malleus (middle ear bones). Usually identified on CT scan- Nolan's CT scan was unremarkable.
  

Of course, Nolan doesn't just have a conductive loss. He has a moderate sensorineural hearing loss from 2000-4000Hz. So, what could cause a congenital hearing loss consisting of both sensorineural and conductive components, which fluctuates over time?

• Enlarged vestibular aqueducts: there is often a low frequency air-bone gap in children with EVA. Nolan's CT scan report states, however: "Vestibular aqueducts are unremarkable." So it is probably not that.
• X-Linked Stapes with Perilymphatic Gusher. This occurs only in boys and causes a fixed stapes, which cannot be repaired because a "stapes gusher" will occur and the ear will lose all hearing. This is a mixed hearing loss profile, but is typically severe-profound (Nolan is moderately severe).
• Otosclerosis. This is rarely encountered in children, and is extremely rare in congenital form. This is also visible on CT scan, and Nolan's CT scan was normal.
  

I can't really find anything else that would cause Nolan's hearing loss profile. In any case, we either have an idiopathic conductive hearing loss and an idiopathic sensorineural hearing loss, or the two are related and Nolan's CT scan or MRI failed to show the problem.

I plotted his thresholds over time, excluding any tests with middle ear pathology (all scores below are with either type A tympanograms or patent PE tubes). Anyhow, you can see the fluctuation in his air conduction scores over time- something our ENT and audiologist have never really paid attention to:

Left Ear

Right Ear

IEP Meeting: A Complete Success

Team Nolan

We had Nolan's Individualized Educational Plan (IEP) meeting this morning with the Committee for Preschool Special Education (CPSE). It was a resounding success!

We went over Nolan's history and current hearing situation, under-amplification, and desired goals/accommodations. We had placed a picture of Nolan on the front of the report to help make the meeting more personal. I couldn't find childcare for Nolan this morning, so the picture was a moot point since he was sitting at the table. Still, it put a face to all of the nameless data in the reports.

A draft of his psychological testing was present, and he is functioning above age level with regard to cognition. This is great news: while it is always wonderful to hear you have a bright kid, it also means that any delays Nolan is experiencing are a direct result of his hearing loss and not any other cognitive issue.

It was decided that Nolan's speech and language services would continue, with a mixture of services provided in the home and at the preschool. In addition, his need for an FM system was written into the IEP under "assistive technology."

We did hit a roadblock when we mentioned the FM system, with regard to funding. We managed to bring the conversation back to the point by reminding everyone that we simply need to place the fact that he needs an FM on the IEP now. We're worried about the "what," not the "how." The school district and county can determine the funding for the FM system at a later date.

We also obtained consultations services from a Teacher of the Deaf (TOD), for one hour per month. This is primarily to monitor Nolan's progress in both the social and language arenas.

We did discuss Nolan's potential sensory integration issues and problems dealing with large groups and noise. One fortunate aspect of his attendance at the meeting was that he had a meltdown from the noise/people- demonstrating behaviors we see when he is overwhelmed. Seeing as how there were only six adults in the room and not the sixteen children he will have in his preschool class, it was easy to see why we are concerned.

After watching his behavior and inconsolable nature, then mentioning that he has (very) mild hypotonia in his hands/arms, the team thought an evaluation by an occupational therapist (OT) would be a good idea. I doubt Nolan really needs services in this area, but an evaluation can't hurt. We added the OT evaluation into his IEP at the end of the meeting.

Everything is signed, and Nolan will have all of the services he needs to excel.

Today is a good day!