Being sick really stinks!

I suppose that may be all I have to say when writing a post at 2:53 AM…

I’m so congested I can hardly breathe and my throat and lungs are on fire with any sort of cough. I dosed up on Sudafed, Ibuprofen, and stood over the hot sink with a towel on my head to try to open things up with steam.  My ‘best laid plans’ for Halloween tomorrow are looking iffy… But at least Bekah’s dress is done, now I have to see if I can actually get the bonnet finished tomorrow.


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.


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.

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!!

Back to School

New rules: The bus won’t come down the driveway.

Jordan’s not so excited to go back…

But cranks out a smile for the camera

It’s been a bit of a rocky start to the 2008-09 school year. Jordan’s first day was 9/2 and he cried the night before, the morning of, and a couple times during the day. Then, he came home with his throat sounding all scratchy. It was also pretty red. After a chat with the doc, it was off to Children’s evening/weekend clinic for another strep test. Thankfully, this one was negative. However, Jordan was out the next 3 days. Today was the 5th day of school, but only Jordan’s 2nd – but at least he went back today. He’s still having trouble with going to school; he’d much rather be home. But Willie figured out that Jordan wanted some ‘Mom-time” when he got home and that got him through the day. We then headed out to Game Stop once he was home. A much better day!

I wish every home school day looked like this

The girls have also had a staggering sort of start. We’ve been waiting for weeks for our books and other materials to get here and now that it is the official first day of school, books have finally arrived. However, we are still missing 6 boxes worth of stuff! I am pleased though that the girls got through all their lessons today and even worked on art together, studying animals that they could draw realistically or using their imaginations. Despite the 6 year age span and no one at home between them, I’d like to have the ‘olders teaching the youngers’ a little more this year. It seems to make a positive difference in the entire household.

For the 3rd year, the girls and I started off the year at the Maltby Cafe about 25 minutes east of here. It’s a fantastic place for brunch and has become a fun little tradition where we can talk about the upcoming year. Today we discussed our morning schedule and goals, as well as enjoyed great food. – I’m so bummed that I forgot to take pictures! So here’s last year’s…

Maltby Cafe 2007

Strep again?!

Amoxicillin this time...

Amoxicillin this time...

After finishing his last dose of Clindamycin antibiotics on Thursday, Jordan enjoyed a couple of good days before his voice started sounding funny and the spots returned to the back of his throat. A trip to the evening-weekend clinic at Children’s and a rapid strep test brought back the diagnosis of strep throat. Ten more days of antibiotics – but at least there is no 4 AM dose!

Feeling better!

Having fun
Having fun
Nice follow-through!
Nice follow-through!

Made it out for basketball today!

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