5-02-2010 MRI - MRV in the morning ... Hearing aids soon!

Joey goes for an MRI - MRV in the morning (8:30 Monday). This is a fasting/sedation procedure, so if you think about us, please pray that he does well.

This is to check the blood clots in his head, to see if they have been reabsorbed yet. If they are gone, Joey can come off the Lovenox (1 shot in each leg, every day). If not, then we will continue the shots another 3 months, and do another MRI - MRV. We really want these shots done...this medicine stings, so Joey gets not just the stick of the shot, but the pain from the medicine ... twice a day.

We go to get Joey's hearing aids on the 20th! This should help him get some more sound. Even if He ends up getting CI's (cochlear implants), he has to do a 6 month trial with hearing aids first, to be sure he really needs surgery and implants to "hear".

The Audiologists that he saw Wednesday, were very impressed with his continued vocalization, as they had expected him to stop trying to talk, because he couldn't hear. They said his interest in speech will really help him with learning to talk and speech therapy.

Speech (and hearing) will be a challenge for him. He has AN (Auditory Neuropathy) which means what he does hear is "scrambled" (my understanding). He has to learn what he is hearing, what it means (unscrambling it), and how to say it, even tho he may not be hearing it the way it should sound.

Never a dull moment!

Joy

4-22-2010 We are getting closer...

I got the notice today that Joey has been approved for hearing aids by CRS. We knew he needed them, but had to wait for CRS to approve the funding. So, the next step is to get his ear-mold impressions. We will get those done on the 28th, after his next ABR and ENT appointments (long day, 3 appointments...). It normally takes 2-3 weeks for the ear-molds to come back, then we go in to get his hearing aids. So....in about 4 weeks, hopefully, Joey will be hearing a little more. This is not likely to give him full or clear hearing, but we are hoping it will help get more sound to his brain while it is developing the sound "areas". Also, a hearing aid trial is required before he can get implants, so it is at least 1 more step on our journey....

I got Joey a "Buddy Bear" that I hope he will enjoy taking through this journey with him. This is a washable bear, that I hope to find "demo" hearing aids for. Also, if/when Joey gets his implants, I will change the hearing aids on the bear into CI's, so the bear will be "like" Joey.

3-29-2010 Two Months

Joey came home from the hospital two months ago, today! It has been two good months... Busy, but good.

Joey still gets 2 shots a day, and Phenobarbital once a day, and Keppra twice a day (he is weaning from the Pheno to the Keppra).

There have been "bumps in the road". There have been lots of doctors' appointments. There have been things we wish could have been different (like the day we learned that Joey was deaf. He might can hear a subway train roaring past if he is within 10 ft of it...).

Yes, we have our share of yucky days... allergies seem to affect all of us. All the kids like to tease, so someone is usually feeling "picked-on". Nobody likes to do chores, so Momma also feels "picked-on" when they don't want to listen (we are working on that!). Even Daddy feels "picked-on" at times (messy house, laundry everywhere...)

Still, it has been a good two months. We are blessed with 7 healthy (mostly), happy (mostly) children. We are blessed with lots of smiles (from Joey), hugs and kisses (from the other 6). We are blessed to know that our strength comes from above. We are blessed in that we don't need to worry about the future, it is in God's hands...

Mat 6:34 Take therefore no thought for the morrow: for the morrow shall take thought for the things of itself. Sufficient unto the day is the evil thereof.

3-27-2010 EEG and Eggs

Joey is doing great. He had another EEG last week. Dr. H said this was the best she had seen on him yet. He is still having a few "sparks", so we will keep him on meds awhile longer to avoid him having seizures again. Tomorrow we start weaning him off the Phenobarbital, and start him on Keppra. This is better for "long term use" tho we are hoping only another 3 months or so.

I am adjusting to Joey not hearing me. Realizing it takes touch to sooth him, not just me calling his name. I can start to appreciate that he is hard to wake him up with noise (which there is plenty of with 6 other kids around!).

I took all 7 of them to the park today for a Easter egg hunt. Joey fell asleep almost as soon as I snuggled him in his carrier....and slept the whole time, even with all the excitement, hollering and yelling of all the kids in town!

Eric enjoyed showing the Easter bunny his spiderman backpack, which he borrowed from Freddie...because it zipped ad he wouldn't loose his eggs.

Evan found the silver egg, but tripped and dropped it, so someone else got the prize. Evan had a great attitude tho, and I was really proud of him!

So here is the egg count:

10 eggs- Eric -almost 2 yrs old

16 eggs- Kiffer -3 1/2 yrs old

31 eggs- Freddie -4 yrs old

32 eggs- Carrie -7 yrs old next week

24 eggs- Evan -almost 9 yrs old

46 eggs- Tina -10 yrs old

total=159 plastic eggs full of candy...and they wonder why they can't have it all today?!?!

3-18-2010 Hope This Helps

3-18-2010

Hope this helps

I wrote this Tuesday (See "A Momma's Heart" below.) I had no intention of posting it. This was between me and God. BUT, now I see as I'm online, searching out info to help Joey; that maybe my cry to God, and knowing that HE answers prayer, may be a help to some other hurting momma.

Yes, God does give us the strength to get through each day, one day at a time. We can go on doing what we need to do, if we don't borrow tomorrow's trouble, and trust HIM for today. With HIS help, taking one day at a time becomes a little easier each day. Not that we should not look ahead to make the best decisions we can for our child, but we should not dwell on the future to the point of worry.

I hope this helps someone....God knows who you are.

3-16-2010 A Momma's Heart

3-16-2010

A momma's heart.

Yesterday, I was shocked. Yesterday, I hurt. Yesterday, I knew Joey's hearing loss was part of God's plan. Yesterday, I didn't want to cry, but couldn't help it.

Today, I'm not so much in shock now. Today, yes, I really hurt! Today, I still know this is part of God's plan, and it is amazing! Joey has been through so much, and is so happy! But I still hurt! Today I want to cry. Today, I want to throw a pity party, to stomp my foot and cry, "I just want to know that he hears me say 'Momma loves you, Joey.' " I know he feels my love, I know there are so many ways to show love, but I just want him to hear me say it! I'm not mad, I just don't understand....and it hurts!

So, today, Lord, Please wrap your arms around me. Help me to trust, not just know. Give me your comfort to make it through the day. Give me your strength to go about the jobs you have for today. Help me to be the momma all my kids need today. Lord, please mend my broken heart!

3-15-2010 The Number Seven

The number seven is the number of perfection. Joey is my number seven. He is perfect because he is exactly who God designed him to be.

God's design is not always easy to understand with our very human minds, but I still believe God has a perfect plan for Joey's life.

Today's appointment did not go as I'd expected. We spent 3 hours in hearing testing. It appears that Joey has no hearing responses in his right ear, and almost no responses in his left ear. with several different decibels, and several different sounds, there were only 2 at the highest volume allowed by the test, that showed any response in his left ear.

This was a total shock, because he appears to respond normally to everything around him, but as I watched him today, I could see that his responses were actually to touch and sight rather than to sound.

The game plan:

Another appointment and test in 4-5 weeks.

Hearing aids....ASAP (this is because we want to stimulate the hearing sensors of his brain now...while they are still developing.)

Possibly Cochlear ear implants, depending on how things go, in about a year. (They can't do that surgery before he is a year old.)

He will be speech delayed as a result of not hearing well. So the next thing I can do is hunt up all my "Time for Signing" , "Talking Hands", and "Baby Sign" movies to help him communicate as well as possible, as soon as possible.

So, is God in control? Yes!

Do I understand? No!

Do I trust that this too is for our good? Yes!

Our Disappointments are God's appointments!

God has a plan, and Joey is still perfectly in that plan.....

P.S. Chris says Joey hears just as well as the other 6, so there shouldn't be any problem! They all hear the same ...nothing new if this one doesn't actually hear sounds!