ENT Post-Op Visit

I haven't quite decided whether its a good or bad thing when you don't have to sign in at the doctor's office because the office staff all recognizes you...

The ENT had a look at Nolan's previously-leaky left ear. Turns out there is still a decent amount of fluid and she wasn't happy about that. We got to take a fun trip to the procedure room and have his ear suctioned out (turns out he dislikes this even more than having his eyes dilated)! She added some Ciprodex drops. We were on our last day of Oflaxacin drops (day 7), so tomorrow we start the Ciprodex and continue that for seven more days. The Ciprodex has to be given 3x per day, so that ought to be loads of fun! Darn those leaky ears.

We go back in three more weeks to check on his ear and to schedule an MRI. I haven't consulted Dr. Google yet as to why they run an MRI vs. CT scan, but I'm sure there are reasons. I do know that MRI's can visualize the soft tissue structures of the inner ear and the CT scan (fancy X-ray) gets the osseous structures. For a quick recap, his CT scan was totally normal and he is negative for Connexin 26, Connexin 30, and the common mitochondrial mutations.

So we find ourselves questioning how much longer we will pursue the cause of his hearing loss. I don't want to put him through countless medical procedures for no real gain. On the other hand, if we missed some syndrome because we weren't vigilant... I can't even imagine how I would feel. We will proceed with the MRI and any additional genetics work that might be valuable, but we are also preparing for the possibility (probability) that we will never know the cause.

I did manage to remember the necessary prescription for his booth test on the 15th of May. I'm rather fortunate that my friend has the day off and can watch Matthew on that day.

Laurie tagged me for a meme, unfortunately Christian's Mommy tagged me first! I'll just post the link to my original response here, since I'm not that interesting and little changes in a few weeks, lol. I like reading blogs by adults who are hard of hearing or deaf, since they give insight to what it is like to have hearing loss.

Eye Exam Results

Being the rather impatient (and anxious) mother that I am, I signed Nolan up for the free InfantSEE vision screening program at our local optometrist's office. He'll have a visit with a pediatric ophthamologist as a toddler, but the screen is free and has the great potential of letting us relax about his vision.

The actual exam was mostly fun for Nolan- they had him follow a pen light with a toy on top, looked at his eyes through prisms, and did a lot of dancing. The dancing was because he kept pulling his hearing aids out and he couldn't hear the really neat rattling toy in the distance- so the assistant had to dance to get his attention. Hey, whatever works!

We did find out that the only thing Nolan hates more than ear drops are eye drops. No fun with the dilation of his pupils, but it was over quickly and they checked his overall vision.

He does have mild myopia, but no other eye problems at the time. Thank goodness! His right eye is -1.00 diopters and his left eye is -1.50 diopters (no astigmatism). They don't correct for mild myopia in babies (he doesn't need to see the blackboard), so we're good as far as his eyes are concerned. He may need glasses in kindergarten or preschool, though.

When he sees the opthamologist as a toddler they'll do an ERG (electroretinography). I'm not too worried about Usher's Syndrome, though, since his hearing loss doesn't fit the profile. We'll still have him evaluated at the proper time, of course.

I am much relieved to know his eyes look great. Vision was the last "medical" thing we had to check with regard to his hearing loss.

The other good news is that we scheduled his first booth test for May 15. We can finally settle the question of his not responding to us: is it age or a drop in hearing level? I have a feeling it is the former, but it is always good to be sure. Its been six months since his diagnostic ABR, so it is time to verify hearing level.

Blech.

The good news? Spring has arrived- in earnest! The bad news? So have all the viruses!

Nolan has has a cold for the past 3 weeks (with a fever for five days), and checking in with the pediatrician simply informed us that he had a "virus." He seemed to be turning the corner, and then I took out his hearing aids yesterday. The left ear has developed a chronic yellow crust from drainage. That CANNOT be good. Off to call the pediatrician to see if we can get in before our trip to Buffalo today!


We pick up earmolds today (set number 8??) at BHSC. Nolan's growth finally seems to be slowing, so hopefully the earmold trips will slow accordingly! The end of April seems to be rather busy for us. Earmolds today, InfantSEE exam tomorrow, ASL lessons on Monday (part of my obsession with learning about EVERY option for deaf/hoh kids), and the post-operative exam for the tymp. tubes on the 30th of April. With rising fuel prices, we're trying to keep those trips to Buffalo to a minimum.


In the meantime, we are trying to spend every waking hour out of doors in the glorious sun. Nolan has taken to the park quite nicely, though he mostly watches Matthew from the sidelines. I am in the midst of planning a summer full of activities for both boys. The Herschell Carrousel Museum looks interesting, as does the Strong Museum of Play in Rochester. Good weather rocks!

Sending Happy Thoughts

Christian is beginning his journey to sound today. Our thoughts and prayers are with this most amazing family!

Deja Vu All Over Again

So, Nolan's SLP tested him AGAIN with the PLS-4. This time, he came out ahead with expressive langauge (he babbles with four consonants and that puts him at an 8 month old level) and a bit "behind" with receptive language (because he won't interrupt an activity when his name is called and doesn't understand the word "no"- this puts him at a six month old level).

She gave me the scores today and wanted to reduce his sessions to twice per month. Haven't we been here before?? I told her I wasn't comfortable with that, and she suggested once per week for monitoring purposes. Since Matt sees her twice per week, she'd be here for him, anyway.

I called our EI coordinator and asked her about switching Nolan to a Speech Language Pathologist who has worked with deaf and hard of hearing kids before. I obtained her name from our local audiologist, who has been very supportive of us. The EI coordinator surprised me and said there is a new TOD who works with Buffalo Hearing and Speech Center, and the TOD might be available. If the TOD is available and able to come this far, we'll take her! If not, we'll switch to the SLP who was recommended by the audiologist.

Either way, I won't be left constantly fighting for Nolan to retain services, and I won't have to worry about a SLP who really isn't familiar with the needs of deaf and hard of hearing kids. Granted, Nolan's loss is moderate and not severe or profound, but reducing services before he is really talking seems premature. Matt, my HEARING kid, babbled just fine at seven/eight months of age. He quit babbling at 15 months and didn't start talking again until after he turned two! I'm a little "on edge" when it comes to losing services, since my hearing kid doesn't talk all that well! Sheesh.

Off to get some tea and a bagel. And some Advil (from banging my head against the wall)....

Playing Tag

I got tagged by Christian's Mommy, so let's see if I can answer anything coherently with my recent lack of sleep (yes, by seven months Nolan SHOULD be sleeping through the night. Key word: SHOULD).

1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.


What was I doing 10 years ago:

I was a junior at UC Irvine. I vaguely remember dating some guy I met on the beach. And a guy who had a jacked-up truck and a gun rack. That one lasted all of 2 dates- I really couldn't see myself in redneck-ville! And then I ended up moving to a rather rural area... go figure.

Five Snacks I enjoy:
1. Blueberry bagels.
2. Laughing Cow cheese-spread on crackers.
3. Carr's Rosemary crackers (see above).
4. Mint-Ting-A-Ling ice cream from "The Shack"
5. Hershey's Special Dark Chocolate

Things I would do if I were a billionaire:
1. Move back to Southern California, buy a house in the Ventura foothills, and be close to family again.
2. Set up a charity to assist with education in countries with low literacy rates.
3. Take the family and visit places around the world we've always longed to see: New Zealand, Thailand, Japan, Australia, Costa Rica... the list goes on and on.

Five jobs that I have had:
1. Activities Assistant at a skilled nursing facility (i.e. nursing home)
2. Classified Advertising at the Riverside Press Enterprise
3. Manufacturing Chemist at Biopool International (no longer in operation)
4. Project Coordinator/Product Integrity Team Leader/Product Support Assistant Manager at Trinity Biotech. There was no "manager," so I'm not quite sure who I was assisting!
5. Stay-at-Home Mommy

Three of my habits:
1. Eddie Bauer
2. Cheesecake.
3. Coffee with french vanilla creamer. A Starbucks recently opened here- I'm afraid to get addicted!

Five place I have lived:
1. Riverside, CA
2. Oxnard, CA
3. Bray, Ireland (for one year- we had greencards)!
4. Lakewood, NY
5. Jamestown, NY

Add one new part (I am totally copying the question from Tina who copied it from Abbie):What do you want others to get from your blog?:

I set this up as a way of keeping family and friends (most of them live in CA) updated as to Nolan's hearing situation. After finding a plethora of other families in the same (or almost the same) boat, I hope that families of newly diagnosed kiddos would find comfort in the fact that they are not alone!

Five People I Want to Get to Know Better: (a nice way of saying TAG!) But don't feel obligated!

Ethan's Mommy
"Buzz's" Mommy
Drew's Mommy
Luca's Mommy
The Loudest House on the Block Mommy

InfantSEE

Hey, it's free.... so why not? I was at the optometrist's office picking up a new set of contact lenses, and saw the InfantSEE brochure. InfantSEE is a free program offering vision screening to babies between the ages of six to twelve months of age.

Of course, Nolan will have an appointment with a pediatric ophthamologist when he is a toddler (routine for all kids with hearing loss), but it would be reassuring to have a vision screen now. They check for myopia, far-sightedness, astigmatism, glaucoma, and cataracts. I made an appointment for the 25th of this month- I have to go back for a contact lens check anyway, so I figured we might as well kill two birds with one stone.

More Babbling

We've noticed an uptick in Nolan's babbling since he had his tubes placed. This is rather reassuring, since we had noticed his response to sound wasn't where it should be with his level of loss. Since the tubes were placed, he's turning to his name again and is making a bit more noise. So far, we have heard the following consonants out of the boy:

Dadadada
Nananana
Babababa
Mamama

I'm still working on getting him to sign "more." He claps his hands, so he should be able to pick up that sign fairly quickly. Some other kids learned to sign "more" at the age of seven months, so it is possible!

Matthew is adding new words daily. Some are clear and some still sound like he's speaking Klingon. Airplane is "thleeee," for example. On the other hand, he ran to the window and said, "I see deer" yesterday. Go figure!