BAHA on youtube.com

This three minute video is a neat overview of the BAHA. Warning: There is a tiny bit of an actual surgery at the end (2:45).

3/2 – A day at Children’s clinics

Here is the run-down of our day:

 

Taking a nap / hiding while waiting for the Doc

Taking a nap / hiding while waiting for the Doc

 With Willie partaking in our day of doctors, it was filled with humor. Here, Jordan waits to meet the oral surgeon. Followed by a check throughout his mouth, Dr. Eggbert checked the chart and shared with us that the dentist who Jordan had seen a couple weeks ago was recommending not the removal of 2 teeth (B & I) as we were told before we left the last appointment, but SEVEN! It was recommended that all of Jordan’s remaining baby teeth be removed during a combo case with a cleaning and dental sealants. This has been set for May 19th and will be an outpatient surgery.

With this appointment finished we had about an hour and a half before the audiology appointment so we grabbed some lunch at our favorite U. Village terriyaki place: Nasai Terriyaki. (On the rare occasion, ten years ago, that we got to pick a place for dinner between the hospital and home, we would grab yummy terriyaki here and either take it home or to the hospital for dinner with Jordan.) Our next stop was Barnes and Noble for a little hang out time before heading back to the hospital.

Snapping the BAHA together

Snapping the BAHA together

 Arriving at Audiology, we were greeted by super-audiologist, Julie Kinsman. Julie is the hearing-aid specialist and provided us with great information on the aid she was recommending for Jordan, the BAHA. Short for ‘bone-anchored hearing aid’, the BAHA uses bone conduction to give the wearer the impression of hearing from both sides. As a trial a small external box, attached to a headband, was set over the mastoid bone behind Jordan’s deaf left ear. The true test was when we asked Jordan to plug his good ear and I said words out of his sight and into his ‘bad’ ear. He could repeat them and answer questions perfectly!! What a moment. We then turned the aid off and did the same thing: “Huh?” was the response this time. It was truly amazing and just what we needed to make a decision on this ‘elective’ surgery.

What this means: 1) Two surgeries. 2) Within a year, Jordan will be able to hear us no matter what side of him we are on. Because we typically hold Jordan’s neglected left hand when we walk with him, he is never able to hear us speak to him while we walk. This will be changing!

The surgeries involve the implantation of the “osteo-integrated post” (two actually, to make sure at least one of them takes) and then the “soft tissue work” in which the external abutment is placed along with the removal of the hair surrounding the post. Both are out-patient surgeries and although they can be done as one surgery, due to Jordan’s history of cranial radiation treatment his chances of delayed healing make it necessary to do the surgeries in separate stages.

In these pictures, he is snapping the abutment to the hearing aid box.

He got it!

He got it!

 

Dr. Sie examines Jordan's left ear under the microscope

Dr. Sie examines Jordan's left ear under the microscope

 Next, we headed to otolaryngology. Dr. Sie is one of the head doctor’s of this clinic, and it is easy to see why. Very rarely do I leave a day of appointments with a smile on my face, but Dr. Sie just has that effect. She is so personable and someone I’d probably enjoy hanging out with outside of the hospital. Willie pointed out that she actually makes eye contact with both the parents and the child. She is a breath of fresh air. Now, we love Children’s Hospital, but still there are doctors of different calibre there. 

These pictures show a couple procedures Jordan endured during our time with Dr. Sie. First, his ‘bad ear’ was looked at under the microscope just to see if there was anything glaring as irregular. He may have some fluid in the ear but she didn’t think that was the cause of his hearing loss (more for the resident’s benefit than ours). She recommended a CT scan be conducted prior to the surgery so she could get a good look at Jordan’s ear.

 

Flexible microscope up the nose...

Flexible microscope up the nose...

 Next, a new room where Jordan sat on my lap for an endoscopy. Luckily for Jordan, he has no sensation in his left nostril so this was much more pleasant for him than nearly all other kids who have it done! Dr. Sie wanted to take a look at both his airway and his vocal cords to see if there was anything glaring that could address his sleep issues (he still won’t sleep with the machine). His adenoids – taken out 10 years ago – were still small. His second set of tonsils (who knew?!) at the base of his tongue were large but she said removing these is extremely painful and she wouldn’t do that to her worst enemy. Vocal cords? Same report: the right moves briskly and the left is sluggish. We’ve heard that report since 2000. The only option to improve his airway? A trach. And in Dr. Sie’s words, “You guys have already been there”. We’ll live with what we’ve got and improve what is reasonable and acceptable while evaluating Jordan’s and our quality of life. 

...and down into the throat to look at the vocal cords. Yep, that'd be the gag reflex.

...and down into the throat to look at the vocal cords. Yep, that'd be the gag reflex.

A model patient, but he still has sensation in his throat!

We’re still waiting for the ENT surgeries to be scheduled, but will keep you updated! Thanks for your continued prayers.

April snow showers bring… dead plants?

Tulips under an 8\We have gotten a freak snow storm today. Not just flurries, but an honest to goodness storm. I don’t think we got this much snow combined all winter. As of 11PM, we had 8 inches on the ground!
I wasn’t far from home this evening – only in Edmonds – but my friend’s power went out! Must have been the heavy snow on the lines. Cars were everywhere, and I even had to leave my van there and have Willie come pick me up! It was just too slick to try to get it out of their driveway. Oh well, a little excitement in mid-April is entertaining.
Jordan had a couple doctor’s appointments this morning to try to evaluate his vestibular (inner ear blanance) system. The testing was challenging for him. Here’s a picture (taken with my phone) Goggles for VNG testof him in the goggles. Willie called him “Bugman”. We’ll follow-up with a well-known therapist whenever I can get an appt. scheduled with her. Currently, Jordan is in Auburn at a camp. He’s called twice wanting to come home – within 5 hours of leaving. Hopefully he’ll make it through the night. It’s been a long and busy day. He must be exhausted.
I helped with final costume fittings for Suessical: The Musical today. It is going to be great.
Bekah’s the only kiddo home tonight – Jordan’s at camp and Ashley’s at Summer’s. Tomorrow, depending on the snow, I guess, we’ll have to go back and pick up my van. I’m hoping to make it to Cindy’s stamp party tomorrow, and then see Jordan before I head off with 9 girlfriends for our Girls’ Night Out – dinner and comedian Anita Renfroe! Fun stuff!