A Joey Update

Joey saw his pediatrician today. This was his last appointment for August...and for the next 3 months!!!!!

In 3 months he is supposed to see the pediatrician, and the audiologist again. In 6 months he will see both of those people again, and the hematologist.

This is huge when you think that he has had so many appointments every month of his life to this point.

The Dr walked in today and said, "oh my, it is a Saint Bernard puppy!" then explained that is what he calls drooling teething babies. (Think the Beethoven movie...drool flying everywhere).

So, the info we got today is that he is growing well, and his motor/speech skills are at the level of a 5 1/2 month old. This is not quite as good as most 7 1/2 month olds, but considering that he has been through so much, and is still developing with leaps and bounds, it is ok. The Dr said he would be worried if Joey had hit a plateau and stopped learning to do new things, but right now, as long as he keeps improving at a reasonable rate, we are ok. And considering that he was deaf for at least 5 months, a 2 month speech delay is not a big deal either.

So, seems like a lot of encouraging/good news for Joey! He is my Little Tiger...quite a fighter and got a growl to match!

Responding to Life's Storms

People say I'm amazingly calm or respond better than they'd expect in these tough times. Or they ask how I can handle things. I've pondered this a few days to be able to try to give an answer...

8-25-2010

I was thinking today, I don't see my responses to situations as being great or especially calm. But, when I think on it... it is just another indication of God working in/through me. What I do see when I try to "analyze" it (which I tend to), is that it is much easier to lean on God's strong arm and let HIM carry me through the tough times in life. I know it is not easy at first to "let go and let God" but trusting HIM is easier than fighting through on my own.

This does not mean that I won't be "weathered by the storms of life" or that I have fewer storms or they are not as bad. It doesn't mean that I'm detached or less emotional.

It does mean that I'm less stressed (not unstressed) because I'm not wearing myself out fighting what I can't help/fix anyway.

It is God in me, but He allows me to choose to rest in HIM...this is the peace people see.

8-27-2010

I think this sums up what I feel...

Psalm 91:1 & 2

1 He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty.

2 I will say of the LORD, He is my refuge and my fortress: my God; in him will I trust.

I have found the secret place, I trust in HIM, and rest in the sheltering shadow of the Almighty...in HIS arms. HE is my refuge and my fortress (safety).

I find that my frustrations and stresses now are more about the things I should be able to fix (a cleaner house, better behaved kids, etc.) And not so much about things I can't fix (waiting on the loan to go through so we can move, dealing with Joey's health, hearing, & Dr's.)

If I can't fix it, then all I can do is trust. Why wear myself out worrying or fighting something I can't do anything about anyway? It is much better to rest in HIS strength and safety.

Also, it is important to realize that HIS “safety” is not always the same as our idea of “safety”, just as HIS will is not always our will. But, when we learn to trust HIM to do what is best, we can accept HIS will even when we don't see the “good” at first. Again, we can't fix it, why fight it?

8-29-2010

The rest of that chapter in Psalms is comforting too. Verse 15 also speaks to me...

15 He shall call upon me, and I will answer him: I will be with him in trouble; I will deliver him, and honour him.

This is the key...Call on the LORD! Then trust HIM with the outcome.

Another of my long time favorite verses:

Jeremiah 29:11

"For I know the thoughts that I think toward you, saith the LORD, thoughts of peace, and not of evil, to give you an expected end."

God has a plan, there is an “expected end” nothing surprises HIM. He wants peace for me, not evil.

When will this happen? What can I do to bring peace? Not a thing, but call on HIM, seek Him...and trust...

Jeremiah 29: 12 & 13

12 Then shall ye call upon me, and ye shall go and pray unto me, and I will hearken unto you.

13 And ye shall seek me, and find me, when ye shall search for me with all your heart.

My hope is that by sharing a piece of the "Peace" that I've found, I can encourage someone else, as well as remind myself in days to come where to turn for strength.

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