An Attempt at Being Crafty...

It's an elephant, if you can't tell. I've never used waste canvas before and my stitches are horrible! Oh, well- I may get better with time. I think the next "craft" will be using iron on decals- much easier and I certainly can't mess that up! Or can I???

This and That

I went to pick up Nolan's new earmolds yesterday (impressions made on January 9) and they were too already too small! At least they don't fall out of his ears like the previous set, but there are gaps at the edges. Our audiologist took new impressions and is airmailing the earmolds with another baby's. We go back on Friday to pick them up- these ones should fit for a little while (I hope)!

Along with outgrowing earmolds like crazy, I think I need to buy the next size up in pilot caps. He was in the XS size, and he definitely needs a small now. I'm going to see if I can cross-stitch something onto the hat. I'm definitely not a crafty person, but I can cross-stitch. I'm not sure what I want to put on the hat, though. My husband is lobbying for a Red Wings design, but I don't have a pattern for that!

Early Intervention also came by to set up the evaluation for Matthew's speech. I should have a date soon- I just hope he qualifies this time. He has about eight unclear words. In most states he would qualify for a speech delay, but NY state does a "total language" score. This means that even if the kid never talks, he may not qualify because he understands so much. He wasn't even babbling by 17 months and didn't qualify because his receptive language was that of a 26 month old. We'll see what happens this time around- he just learned to say "mama" at 2 years of age (and can't always say that), but he understands what it means to "gain altitude." If he doesn't qualify for speech therapy, we will just continue on with sign language for him. All I really care about is communication, but it would be nice if we could get some help on the speech front.

Speaking of sign language, I've been wanting to take an ASL class at our local community college. I can't for the time being because the husband is in Sweden for half of every month, which means I have no place to leave the kids while I take a class. There is a lady (ASL interpreter) who goes to my church, and she gave me a certificate for 5 one hour ASL sessions in our home. AWESOME! That should get me started, and the one-on-one will allow me to focus on vocabulary and phrases for communicating with my little guys. J.K., I am forever in your debt!

Things That Really, Really Make Your Blood Boil

Imagine you want a couple of milkshakes. No problem, right? Just go to a local fast food drive through... say a local Steak and Shake... and order a couple. Now pretend that you have difficulty hearing. The speaker at a drive through is impossible to hear through, so you'll have to drive up to the window to place your order- the only reasonable accomodation. Right? Wrong...

Karen, a mother extraordinaire (who also happens to be deaf) drove around to the window to place her order and was denied service- unless she placed her order through the speaker. Which she can't do. Luckily Karen has the patience of a saint and didn't go insane at that moment, which is what I probably would have done. All she really wants is for some sensitivity training and education of the employees who work for Steak and Shake, who obviously have no clue about complying with current ADA laws.

Her local ABC affiliate has picked up the story at: http://abclocal.go.com/wls/story?section=news/local&id=5912924

When I think of something like that happening to MY kid, who also won't be able to hear things through a drive through speaker, my inner Mama bear becomes angered.

I'll be buying my shakes from another establishment in the future!

What Happens When..

People have extra hearing aids, lots of playdough, and WAYYY too much free time on their hands:

Ear Gear vs. Pilot Caps

In the never ending search for items which will keep hearing aids on my almost-5 month old son's head AND will keep them free of drool and rice cereal, I decided to order some Ear Gear. Now, for a comparison between the efficacy of Ear Gear and Pilot Caps:

Ear Gear:

Pros:

• Comes in a variety of cool colors, so you can change the look of the aids over time.



• Covers the actual hearing aid, reducing moisture and dirt damage. This could become important as Nolan learns how to turn his hearing aids into a tasty snack.



• Reduces the chance that small parts might fall off of the hearing aid (again because it covers the aid).


• The cord prevents the hearing aids from becoming lost, if they fall from the child's ears.
• Acoustically transparent.

Cons:

• Costs $25 for one set.


• The cord is too long for a small infant, leaving a lot of "dangle" room.


• The extra cloth over the hearing aid adds bulk, and pushes a baby's ears out (see squashed ear in the picture above). This also makes the aids more prone to falling off (though the handy-dandy cord will keep them from getting lost).

Pilot Caps:

Pros:

• Cost $8 each; $7 each if you buy 2 at a time.


• Keeps older brother from noticing and playing with hearing aids.


• Don't add bulk to the actual hearing aid.
• Covers the entire ear to prevent contamination with dirt and moisture.
• Keeps hearing aids from flopping off when rolling around on the floor.
• The are "so freakin' adorable!"

Cons:

• If a hearing aid does fall off, you might not notice it until you remove the cap.
• If a hearing aid does fall off, there is nothing to keep it attached to the baby.
• People ask why you won't take your kid's hat off.
• Harder to turn the hearing aid on/off if Nolan has fallen asleep- there is a big chance I'll wake him up by untying the pilot cap!

Conclusion:

Pilot caps are definitely better for a smaller baby- they keep the aids on well for a baby who is too young to remove his or her own aids. Ear Gear are probably better for older babies and children, who might remove/mouth aids or get them dirty. Ear Gear makes the aids too big for a baby's small ears and the cord is too long. This wouldn't be a problem with a toddler/child with bigger ears. Pilot caps would begin to lose effectiveness when the kid could just reach underneath the hat to remove the hearing aids. Let's hope Nolan's ears grow enough for the Ear Gear before he learns any new tricks!

I Love Pilot Caps

Oh, to extoll the virtues of pilot caps! I received Nolan's in the mail on Thursday, and it has made hearing aid life much easier! Despite the use of toupee tape, the hearing aids would still flop off when Nolan rolled over. Plus, toupee tape didn't stop my curious toddler from investigating the hearing aids! Now I have fewer worries that rice cereal will get flung into an aid and ruin a rather expensive device.

Plus, this cap matches his eyes! The only negative: his head is growing so fast I'm going to have to order the next size soon.

Back to Square One

I received the approval letter in the mail for Nolan's CT scan. This would normally be a happy event (since it took some argument from the ENT's office to get it covered). Unfortunately, I looked at the dates of coverage: January through March 10, 2008. Nolan's CT isn't scheduled until March 18!

I called our lovely insurance company to get an extension, and was told that the ENT's office would have to reapply for a coverage extension. Essentially, we're back to square one. I have to call the ENT's office (once they're back from lunch) to get them to apply for the extension.

The hospital only does CT scans under general anaesthesia once per month, so we don't have a choice as to the scan date. I just hope this doesn't push us back to April (especially with the frontal bossing).

I am full of ire toward insurance companies at the moment.

In other (good) news, the microphone covers arrived in the mail today. That was fast! I love Buffalo Hearing and Speech Center- the audiologists are WONDERFUL and they have cutting-edge equipment.

No Vacuuming Allowed!

I got to place our first call to the audiologist today for a missing part. We're only six days in and we've already lost something! Yikes. There is a little rubber strip with a filter that goes on top of the microphone section of Nolan's aids. I was adjusting his left aid and noticed it was GONE. The right one, luckily, is still in place.

I have been combing our carpet (gray, just like the little rubber strip) with no success. We went outside today, but Nolan stayed in his infant carrier, so it couldn't have been lost out there. Argh!

Luckily the audiologist just called and said she would mail me some extra covers and the tool to put one back in. Thank goodness! I really can't wait until the ear gear gets here- it will help prevent anything from popping off of the hearing aid case.

Finally got around to doing a montage...

Make photo slide shows at www.OneTrueMedia.com

Since "School" is Cancelled Today...

I thought I'd post some pictures!





The SLP is sick so we have today off. This is probably good since I really needed to vacuum!

Head X-ray Results

The pediatrician's office called and Nolan's head X-rays were normal. This greatly reduces the chance of craniosynostosis (a head CT is required for confirmation). This is good/bad news- good news because it means that we probably don't have major surgery in the near future. Bad news because it means we have no idea what is causing the frontal bossing. I guess the CT scans and the trip to the geneticist will set us on the path to find out more. I am really glad we were able to get into the geneticist so quickly. I REALLY don't handle waiting very well- when you are worried about your baby, you want to know what it is, and you want to know NOW!

Still waiting for news from the ENT on the approval/denial of the temporal CT and the scheduling dates for both the head and temporal bone CT scans...

UPDATE: The ENT's office called and insurance has approved the temporal bone CT! This means we will only have to sedate once for both scans. Buffalo Children's should call next week to set up the date for the CT scans.

And the Marathon Continues...

I thought I'd post an update from the ENT visit yesterday. We've been on a bit of a medical marathon this week, and I will be glad when Saturday arrives and we get a break from all the doctors' offices!

The ENT told us the EKG and urinalysis were normal (which I already knew, but was glad to hear again). She noted Nolan had fluid in his right ear, so we have to go back to her office at the end of February to check on that ear. She was also quite concerned about the frontal bossing(unlike the pediatrician) and is sending us in to see a geneticist and to get a full head and temporal bone CT scan.

I took Nolan down for his head X-rays this morning. I should hear back from the pediatrician on Friday or Monday. X-rays are not the diagnostic standard for craniosynostosis, but are a good first step. We're getting a full head CT anyway, so that will definitely let us know if his sutures are closing prematurely.

The geneticist called and we have an appointment for February 8. I'm glad we got in so quickly! We'll start the process of looking for syndromes associated with hearing loss and frontal bossing.

The bad news is that our insurance company is balking at the temporal bone CT. This is a standard part of the diagnostic process for kids with hearing loss- to visualize the cochlea and vestibular system. Oddly enough, they don't require approval for the full head CT. Because of the difference in what they are willing to cover, we may have to do two separate CT scans. This means Nolan will have to be sedated twice, which is frustrating at best. The ENT's office is currently arguing with the insurance company to get them to cover the temporal bone CT. If the ENT's office doesn't prevail, we'll go ahead with the CT scan and begin the appeal process to get the temporal bone CT covered. Insurance companies can be quite terrible to deal with. They're great if you never need medical coverage, but if you have any medical issues be prepared for many fights!

Anyway, we should know by tomorrow whether or not we get to fight Univera for coverage of the temporal bone CT. It's a necessary part of Nolan's diagnostic process. Sheesh.

New Hearing Aids!

He has his aids!

This video is pretty bad- I was holding him and taking video at the same time. At the very end of the video the audiologist comes in and claps her hands- he looks up to the sound, which was a sound so soft he would never have noticed it before!

Frustration!

Besides the car breaking down (which is now fixed, thank goodness), I've been wild-goose chasing with the various doctors who see Nolan. Monday night, I received an automated appointment confirmation call from the ENT. I confirmed the appointment and was glad to be all set in that area.

Caller ID told me the ENT was on the phone this morning. The office person there asked if we had any of the tests performed since our previous visit. Our last visit was when Nolan was 8 weeks old, and I had done every test she ordered.

"Did you do the EKG?" asks the office person.
"Yep. In early November. It's done."
"We don't have any record of it. I'll have to call the hospital to get a record."\
"OK- it was done. I haven't heard anything back."
"Did you do the urinalysis?"
"Yep. At the pediatrician's office in early November."
"No record of that, either. We'll call and get it."

Then she asks about the hearing exams:
"Did you ever do the diagnostic ABR?"
"You have no record of that?"
"No. They never sent us anything."
"I have all the records- I'm picking up aids tomorrow so I can get extra copies."
"Great- bring copies. We'll put them in his files. Did you do the CT scan?"

Now this is where I get frustrated!

"No, the ENT never ordered the CT scan."
"Oh, do you still want to come in? We can't do anything without the CT scan!"
"Yes, I still want to come in. She said we'd do the CT scan at the next visit, and this is the next visit."

There was more hullaballoo about needing insurance approval and the feeling that I would be wasting the ENT's time, but I don't care. I need someone else to look at Nolan's head and if I cancel this appointment, I have a feeling MORE things will get lost and put off.

The most fabulous moms (and dads) at listen-up.org suggested I create a binder with all of Nolan's medical reports, since lack of communication between the physicians is common. I have all of his hearing related things, but none of his medical things. I'll make sure to get some copies at this next appointment!

Pediatrician's Visit

I had Nolan's 4 month well-baby visit today. I was extemely anxious for this visit because of my concerns for the shape of his forehead. She took a look at his head and felt for the soft spots, and said that craniosynostosis is unlikely because his soft spot is still open. The "front bossing" of his forehead is more likely his natural head shape. In other words, he probably just has a funny lookin' noggin.

"If it would make you feel better," she said, "I will write an order for some films to make sure his head is OK."

Long ago I learned to trust mommy-instinct over anything (or anyone) else, and so I requested an order for head X-rays. An hour and a half later (she forgot about the order the second she left the examining room), I left the pediatrician's office with the order for X-rays.

In other news, he is 13 pounds, 10 ounces (a lightweight) and 26 inches long at four months old. Looks like he's going to be a long and lean little man!

This week is absolutely BOOKED with appointments. Hubby left for Sweden two days after we got back from California, and the car decided to break shortly after his departure. After the pediatrician's appointment, the boys and I spent several fun hours waiting in the mechanic's waiting room. Turns out the bolt holding on the right rear shock has been severed. They ordered the replacement part and it should be in by noon tomorrow. I'm taking the car back tomorrow at 1:00 to get it fixed before we go to Buffalo on Wednesday. That car better run smoothly, because I have some hearing aids to pick up!

I'll probably do the head X-rays on Thursday and then we have our first day of "school" on Friday with the speech-language pathologist. I'm looking forward to Saturday- we might have a day free of appointments by then!!!

Worried About Syndromes

Dealing with hearing loss can be difficult in and of itself, but there are several syndromes which have hearing loss as a symptom. From birth, we've been a bit concerned about Nolan's forehead shape, which seemed to have "corners" and was flat in the front. The pediatrician and ENT never noticed it, so we thought perhaps he would grow out of it, or that it was a minor thing that didn't merit attention.

As he's grown, a silent terror has grown inside of me that something else is wrong with our little boy. We are in the beginning stages of the diagnostic hurdles, and have many doctor appointments scheduled in the coming week. On Monday, I will discuss my concerns about head shape with his pediatrician. Instead of becoming less noticeable, Nolan's forehead is protruding more. I am concerned about craniosynostosis, which can be found with hearing loss. Most of the syndromes including hearing loss and craniosynostosis have other features (such as webbed fingers and/or toes), but I am concerned nonetheless. I have a first cousin who had craniosynostosis as a baby (surgery corrected it at one month of age). This condition is usually dominant, though, and neither Dennis or I ever had it as infants.

Here is a picture of Nolan with his Grandpa on Christmas Day- you can see how elongated his head is becomming:



We will have to wait and see what the pediatrician says on the 7th, and/or what the ENT says on the 9th. He has to have a CT scan for the hearing loss, anyway, so I am hoping they do a cranial X-Ray to make sure the sutures in his head haven't prematurely fused.

My heart will skip a few beats until we get a few more answers. Knowing is always better than not knowing. And I fear for my little guy.