Prayer Quilt

So many people have been praying for Joey. I've decided to make a Prayer Quilt for him. This will be made of colored paper, laminated, and put up on one of our walls (maybe his room). So, if you would like your name, location, or comment put on Joey's "quilt", please send them to me. I plan to also posts a list of locations on the blog, but won't put names up there. If you wish to you may email me by clicking HERE rather than leaving a comment.

I think it will be really neat to see where the prayers are coming from....I know already, from many different countries!

Thank you for your prayers, and your interest in this project.

God is still God and prayer still works!

Joey's hearing history:

1-14-2010 Born...apparently hearing.

1-23-2010 Newborn hearing screening...passed left ear, but not able to get reading on right ear...tried several more times over the next week...not able to get readings (both ears). Referred for hearing testing.

3-15-2010 first hearing test...got nothing in the right ear, and 2 Frequencies @ 95-100dB, possible AN (auditory neuropathy)...told he was deaf, learn ASL, consider hearing aids and CI's

4-08-2010 absent OAE's and no mobility in right ear. Possible AN.

4-28-2010 3 frequencies @ 90dB, 1 @ 100dB, 1 @ 110dB all left ear. Severe sensorineural hearing loss in left ear, with AN component. No responses on Right ear, absent OAE's

6-24-2010 sound booth with hearing aids: 1 @ 70dB, 1 @75dB, 2 @ 80dB all left side responses.

8-16-2010 sound booth test no hearing aids...frequent responses to sound and voice @ 50dB (no voice responses before this in any of the tests...tho tried a couple times.)

8-17-2010 ABR testing both ears to 15-25dB on almost all frequencies...just a couple frequencies w/o responses.

Yesterday, they said his right ear still looked a little yucky. They planned to put tubes in today. They said he would need them, because he has has “chronic fluid on the right ear since birth”.

Today, they went in to do tubes, and said he didn't need them, his ears were fine! This is the 1^st time in his life anyone has looked in his ears and not seen “something” wrong. I've never seen a Dr. back down from doing tubes once his mind was made up that they were needed, and the kid was already sedated in the OR ...I've never seen a kid go from yucky ears to perfect ears over night w/o intervention. I've never seen a kid go from “almost stone deaf” to “almost normal hearing”. No one really understands why he has had so many “profound hearing loss” tests, and patterns for AN, and now he is testing “almost normal” with no AN.

We watched him not respond to sound...we watched as he seemed to get sound at times, but not always....
Causes:
Maybe stress from all he went through
Maybe fluid that was always in his right ear
Cure:
Maybe time and love healed the stress
Maybe the ear infection 3 weeks ago ( w/temps up to 104.4 even when on Advil...I gave Tylenol too, and it came down...) melted loose whatever was keeping his right ear from draining.

I believe there are some questions about Joey that we may never have all the answers to. The Dr's just shrug. They don't have answers either. If they answer it is to say, “we don't have those answers, and probably never will, all we can do is move on from today.”

But, this I know, God is still God, and prayer still works!
Joey could not hear, now his hearing is near normal... That is God!
Why have we gone through all this? That remains to be seen...but God is still good...

Even busy with 2 days of Dr stuff, we enjoyed spending time with Joey. He is such a sweet happy boy. He charms all the nurses, and even most of the Dr's.

Daddy got to go this time and see Joey respond to sounds in the sound booth...that was really cool! I'd seen it a little @ 70dB, but this was good, really responding to sound, responses, still not every sound, but more than we had seen before, and without hearing aids!

I don't know about tomorrow;

I just live from day to day.

I don't borrow from its sunshine

For its skies may turn to grey.

I don't worry o'er the future,

For I know what Jesus said.

And today I'll walk beside Him,

For He knows what lies ahead.

Many things about tomorrow

I don't seem to understand

But I know who holds tomorrow

And I know who holds my hand.

A movie to share...enjoy!

I got this movie in an email today. I thought it was really good. We are like old barns...the weathering of life is what makes us beautiful to God...

I went on youtube to find it, so I would not infringe on anyone's copyright...

So, I hope you enjoy: Old Barns and Old People

God is good...All the time

I haven't posted in a while, but I was doing some writing this morning, and I just want to say:

I'm so glad God has dealt gently w/ me the last couple years! He almost always gives me a little glimpse of the "good" in a situation that I don't understand, or doesn't seem good...that helps me trust HIM through the situation. And when Joey was so sick, and I didn't see the "good", I had HIS assurance that HE had a plan, and I could trust that. It doesn't make the bad things seem less bad, doesn't make the hurt go away, but it does give PEACE and the strength to get through...'cause "I know WHO holds the future, and I know WHO holds my hand..."

In other news:

Joey goes to NC for more testing in a couple weeks. This is all about his ears. I'll try to update when we get back. Hopefully we will have more info about if, what, and how he is hearing...and what to expect in the future.

Joey's Sound Test

I took Joey in for a sound field test today. His HA's are almost max-ed out. They tested several frequencies (250 up to 4000)

results: (all left ear... no right ear responses)

250Hz=NR

500Hz=75dB

750Hz=NR

1000Hz=80dB

2000Hz=70dB

3000Hz=80dB

4000Hz=NR

"He did not respond at 80dB speech stimuli."

This still leaves him in the range of severe hearing loss even w/ HA's. We did turn the HA's up a little more, but they really started him out loud to begin with. Before adjusting they said "almost max-ed out" after adjusting they said "pretty much max-ed out."

His next scheduled Ear Appointment is in August @ UNC.

Interesting tidbit:

Sounds Joey can hear are 10 million times louder than what a normal person can hear.... see this note from http://www.hearinglosshelp.com/articles/decibelsvspercent.htm

"Here is another example. I have a 70 dB loss. This is not equal to a 70 percent loss by any means. In actual fact it means that the softest sound I can hear needs to be 10,000,000 times louder than the softest sound a person with normal hearing can hear. One out of ten million is definitely not a 70 per cent loss but would be a loss of 99.9999999%! Quite a difference, isn't it? Now you can see why we must never use percentages when talking about our hearing losses. They just do not equate. They are absolutely meaningless!"

Normal hearing is -10 to 15 dB

Joey hears almost nothing at 70dB

6-10-2010 Mommy's Little Helper

I had told Carrie that she should do a scrapbook page about helping with Joey's shots. I expected her to say more about the technical stuff, cleaning the skin, pinching up a spot, etc. (She can't decide if she wants to be a nurse or a teacher when she grows up...)

She surprised me with what she wrote, but I thought it was really sweet. "I help mommy with Joey all the time. Even if it is hard to do, I still help. I give Joey his shot, and it makes it so much easier for mommy."

For those of you who are wondering why a 7 year old is giving shots...Joey has gotten wiggly enough that it takes 4 hands...2 to hold him still (so you don't have to stick twice) and 2 to give the shot. Carrie tried to hold him still, but that didn't work. She watched and learned how to give the shots, and is super careful with it (and I am watching carefully too).

Anyway, we are all glad not to have to do that any more!

I added our scrapbook page. The credit for the quickpage goes to Soto Creations. The text is Carrie's. The Pics, Med Elements, and captions are mine...

6-09-2010 Good News!

Joey had 3 appointments today.

First was his hearing aid check-up. We were supposed to do a sound booth visit, but the appointment was not long enough, and his ear-molds were already too small. So he got new impressions made, and when we pick up the new ear-molds, in a couple weeks, we will do a sound booth test as well.

Second was Lab.

Between having his ears messed with and poked at, and getting stuck to have his labs drawn, he got really cranky. So most of the day he was fussy, with short happy spells. Normally, it is the other way around most of the time he is so happy, and almost never fussy.

Third was his Hematology appointment. After his MRI in May, they said the blood clots were gone, but as a precaution, they wanted him to stay on the blood thinners until the 6 months was up. I started to ask them about that today, because I didn't want to continue shots twice a day if it was not really needed. Before I finished asking, the Dr. said, "Already wrote the orders" and showed me the note that said "Stop Lovenox". Is that great or what?!? It is so nice not to have to stick him any more!!!

Joey will be 5 months old on Monday, he has been on Lovenox twice a day, since he was 8 days old...that is 4 1/2 months of shots! He doesn't know what it is to not get stuck at least 2x's a day (more if it is a lab day). In fact, there have only been 4 days in his life when he has not been stuck. So no shot tonight, and starting tomorrow ... NO STICKS!!!! (can you tell I'm excited?) I call that "good news".