A morning at Children’s ENT clinic…

I am frustrated.

Following Jordan’s 3rd bout with strep throat in 7 weeks, I began wondering about any correlation between Jordan being tired/fatigued and these illnesses. I also began making a more conscious effort to pay attention to Jordan’s sleeping. He snores, stops breathing, uses 3 pillows at night, and is frequently tired in the morning.

I recalled that at Jordan’s last blood draw he was slightly anemic, so I called the long-term follow-up clinic (neuro-oncology) to inquire about a sleep study. I also mentioned that he’d gotten strep again. This got me an immediate referral to ENT (ear, nose and throat). So, today’s visit with ENT rolls around and what comes of the visit with the attending doctor is that since he doesn’t have his tonsils there is nothing they can do surgically and there best course of action was to write prescriptions for all of the family members to take antibiotics “just in case” any of us had underlying strep and were passing it back and forth – despite the fact that no one is at all symptomatic. I left with 5 prescriptions and concerns about taking antibiotics ‘just in case”. (Turns out “the plan” changed once I called the pediatrician for a second opinion. We’re going to try to boost Jordan’s normal bacteria rather than knocking everyone down.)

However, during the course of the appointment, the resident who did the chatting with me prior to the attending doc coming in asked me if Jordan had ever had any type of amplification system. Oh, an FM system in the classroom? I responded. He asked if there was anything for hearing aid-like that we’d used. WHAT?! In all the times we’ve seen audiology, and any other number of specialists at that hospital, no one has ever given us any suggestion that Jordan’s hearing could be improved. He has a unilateral loss and that’s just kind of the way it is. Well, apparently it’s not.

Jordan is significantly impacted by his inability to hear out of his left ear. He can’t hear us when we sit on his left side, can’t locate sounds to save his life, and the classroom is a nightmare to try to function when different students are called on around the room to talk. And, now, after having the loss for nearly 9 years, we find out that there are at least 2 options that would allow him to “hear” out of his left ear.

While this is super exciting, I also find it incredibly frustrating. I’ve worried about him being hit by a car for years now because he is unable to tell where noises originate from. He can’t find me in a crowded room if I call him. We’ve made accomodations in his seating at school for years. His own sisters know they have to talk to his ‘good ear’ if they want him to hear them. Why? And, how? Why has the Lord allowed this to go on for so long before having this basically useless appointment that yet yielded potentially life-changing words? And, how can a kid be treated in ONE hospital for his whole life, receive all of his audiology appts. there and this never be mentioned? I have grabbed info on hearing aids (cochlear implants and such) when we’ve been in offices because I’ve wondered, but they had to have known. I just don’t get it.

So, at any rate, Willie did find a link to some information about the Baha system which is one of the options that we’ll discuss at our Audiology consult appt. now scheduled for Monday the 6th. From the Maryland Hearing and Balance website:

Baha for Unilateral Deafness

One ear does not provide adequate hearing in many situations. Patients with severe hearing loss on one side, but normal hearing in the other ear have difficulty understanding speech in background noise (such as group conversations and restaurants) and determining which direction sound comes from. Unilateral deafness can result from viral infections, trauma, acoustic neuromas and other ear tumors and ear surgery.

Until recently, the best available approach for providing help in this situation has been the CROS (contralateral routing of offside signal) hearing aid. This technique utilized hearing aid microphones worn in both ears and routed sound from the deaf ear to the hearing ear. Unfortunately, most patients were unsatisfied with this system. Common complaints include the cosmetic appearance and discomfort of the headband, and the use of a hearing aid mold in the good ear. Most patients felt the benefit from the device is not worth the disadvantages.

The Baha, now an FDA cleared solution for unilateral deafness, provides a completely unique benefit. The Baha device is placed on the side of the deaf ear, transfers sound through bone conduction, and stimulates the cochlea of the normal hearing ear. The Baha effectively transmits sounds from the bad side to the normal ear and ultimately results in a sensation of hearing from a deaf ear. Stereo hearing results in improved understanding of speech, especially in background noise and aids in the localization of sound.

The Baha offers significant advantages to the traditional CROS hearing aid. The device is placed behind the ear leaving the canal open. It is worn under the hair and is not perceptible to others. Because it is held in place by a clip and directly integrated with the skull bone, there is no need for a head band and pressure against the skin of the head. In recent clinical trials patients prefer the sound and speech clarity achieved with the Baha verses the CROS and verses the unaided condition.

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I am thankful that something may be possible. What a gift that would be. I’m also thankful that we only have to wait until Monday for the appt.!

Now, to get the sleep study and outstanding feeding eval scheduled…

10 years ago… 9/29/98

12 hours after we'd prayerfully handed him over

Tuesday, September 29, 1998, at less than 8 months of age, Jordan had brain surgery to remove a golf ball sized tumor sitting right near his brain stem. The surgery was performed by Dr. Richard Ellenbogen, Chief of Pediatric Neurosurgery expert on Choroid Plexus tumors. Originally, due to the location, the doctors had told us they thought the tumor was an ependymoma. But Dr. Ellenbogen’s gut was proved correct once they reached the tumor and testing could be performed on it. It was indeed a very rare Choroid Plexus Carcinoma (CPC). As I looked around online this evening I found some more info about this tumor. For one, I never knew what “grade” it was. On a scale of 4, the World Health Organization gives the CPC a grade 3. Choroid plexus tumors (carcinoma and papilloma) account for 0.4% to 0.6% of all brain tumors, 2% to 4% of brain tumors in children, and 10% to 20% of brain tumors manifesting in the first year of life. On average, there is a 40% survival rate at 5 years. Jordan has made it 10! And he had some considerable complications along the way! Just last month, the neuro-oncologist (Dr. Geyer) ‘cut Jordan loose’, saying he didn’t see any reason to continue scanning him every year. Wow, that’s weird.

We are so thankful that the Lord has given us all these years with Jordan. Surely, He has something very special for this boy who has defied the odds.

Ten years ago today…

Jordan David - September 25, 1998

Jordan David - September 25, 1998

This is a picture I took of Jordan at Children’s Hospital as we waited for his turn in the CT scanner.

In our hearts, Willie and I already knew that God had a special plan for Jordan and we were just moments away from the ‘phone call that changed our lives’.

I have recently started Bible Study Fellowship and this year we are studying the Life of Moses. One of our questions this week was concerning Moses’ mother, Jocheved. It asked what Jocheved must have seen in Moses, since he is described as a “fine child” and “no ordinary child”. To many, this seems weird. Did he have a ‘glow’ or something? In our discussion group, I was able to share my personal experience with this kind of thing.

I described it to a friend of mine in an email earlier this evening:

The day I found out I was pregnant with a boy (he was the only one we found out on), I KNEW there was something special about him. It was a very memorable day, I even remember the date, Sept. 17, 1998. After Jordan was born and we were bringing him home from the hospital, Willie and I both expressed surprise that he was even coming home with us. Medically, he was fine, healthy. Birth didn’t go fantastic (APGARs of 1 and 9 – heart was beating at 60 BPM and that was all he got points for on a scale of 0-10), but he rebounded and did very well from 5 minutes on. But it wasn’t just my feeling, Willie expressed one, too. Just after 4 months, we found a lump on his leg. We thought, “This is it.” It was actually a reaction from an immunization. So, if that wasn’t it, then what would it be? Then, this day 10 years ago came along, and before his scans were even read, I knew what it was. (Granted, I thought it’d be 5-7 days in the hospital then out and singing the Lord’s praises, not over 57 days with surgeries, chemo, radiation, and numerous complications… I avoided oncology like the plague in nursing school so I had no idea what was to come in that department!)

God had given me a special impression that this child was set apart. I laid him on the alter several times, turning him over to God, months before he was diagnosed. I videotaped him nearly every day (it’s kind of eerie to look back on). He had a personality that was described by our pastor’s wife as a “velcro baby” – you could stick him on the wall and he’d stay there completely content.

What is still to come? Only God knows. He’s the only one that has known all along. But, I am honored and priviledged to be a part of this child’s life.

Today’s bounty

Willie got home from work today and headed out to the garden. This is what he came in with after about 20 minutes…

Strep again?! Again?

Yes, another trip to the doc following a simple “my throat is hurting” comment by Jordan resulted in another rapid strep test and another positive diagnosis for strep throat. Amazing. That’s 3 times in the last month and a half.

Another round of antibiotics (cefzil this time) for 10 days and then we’ll re-test him. The doc said that after 6 times in a year they start to look and see if someone in the house is a “carrier”. But 3 times in less than 2 months is definitely not ok. I’m glad that she agreed with me!

At least it’s a day off of school and he should be ready to go back to school Monday.

It’s funny. I heard on the radio yesterday that “If you have tickets for the Steven Curtis Chapman & Michael W. Smith concert on Saturday”, which we do, “expect something to come up, because it is going to be one amazing worship experience.” I am so thankful I heard that (I rarely hear anything on the radio even if it’s on!) because then I had perspective as soon as Jordan said “My throat hurts”. The Enemy never sleeps; but thankfully our more powerful Lord never does either!!

Sporting Firsts for Bekah and Jordan

Bekah had her first day of gymnastics on Tuesday, 9/9, and she had a BLAST! Her home school friends Carolina, Genna, and Sadie are in her class which makes it that much better. Her first question when she finished was “When is my next gymnastics?!”

You’d think Genna & Bekah were the only kids in class, not 2 of about 14! Gotta be first!

 

My name is Bekah

Following floor and beam, the girls went and worked on the bars (Bekah is one of two girls on bars – on left)

Jordan then began his ‘career’ with Special Olympics later that day at the local bowling alley. There were 3 other young boys on his lane and it was so fun! The kids are great, of varying ages, and very nice. The only bummer is that Jordan is so used to 1) playing with the bumpers up and 2) playing Wii bowling, that it was a bit disappointing for him when he kept getting zeros – oh well. We have lots of time (each Tuesday) to practice until the tournament the 9th of Nov.

It wasn’t until the 8th frame that we finally got a ramp and Jordan could bowl more independently.

Another gutter ball…

Bekah’s first diorama

We picked up a fossil dig kit a while back and stuck it in what we call the “bored box”. Last week, Bekah declared herself bored and headed to the box. Although I had plenty of other things to be doing, I couldn’t resist digging bones out of the clay with her.

Digging away the clay

Brushing the dust away

Look what I did!

Then, it seemed like the perfect excuse to create her first diorama. And since I have recently started saving all sorts of things ‘just in case’, I had a shoe box just waiting for this sort of day.

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