Good deals

I have gotten two good online deals lately.

First: I signed up for Swagbucks. It is a search engine that pays you points for searching...these points can then be traded for cool things like Amazon gift cards! (and it does work...)

If you were to sign up using my referral link, I'd get points when you get points...and you get a referral link for others to search and you earn points too.

My link is: http://www.swagbucks.com/refer/joybell74

Second: I got a discount code from Diapers.com . If you use sposie diapers this is a great deal. It gives you 20% off your 1st order and gives me a $10 credit on my next order. They also offer free shipping on orders over $49. I usually order 2 cases of luvs and get the free shipping...and don't have to run to the store after diapers! The discount code is JXYB6592 and anyone can use it.

I did this to order Joey's Christmas...a crib. Also a friend of mine ordered her grandson a bunch of Carter's clothes, and got the discount too, so it works too. The only catch to this one is you have to use the code on your first order, or it doesn't work.

This works for me, because I'm earning or saving $ while doing something I'd be doing anyway!

Works for me...

I've really had an interesting struggle over the years. Some of my kids have either physical limitations that we have to overcome or lack of confidence which also has to be overcome. This is especially true in reading and math.
This year I decided to look at more of a Classical approach and check out books in the public domain (meaning older, free, download books).
These two books have been amazing!
First: Ray's Primary Arithmetic

When my oldest panicked because I said "multiply", this book was the key. It teaches problem solving, not just "memorize the time's tables and write all the answers over and over." It is a "new" (to us) way of thinking and looking at a problem. After about 2 months in this book (she is going through it fast, because she needs to get to the second book this year) I asked her how she felt about multiplying now...she said "fine". I did not have to drill and fight her to get her to understand. She took the book and learned it on her own! Now "multiply" and "divide" don't panic her!

Second: The See and Say Series Book One

My 4th child can't remember anything (or so it seems)! I have tried for 3 years to teach him letters and sounds. He does great "right now" but in 15 minutes he won't remember any of it, and by tomorrow we have to start all over! I started this book with him and his 2 younger brothers last week. After 1 page, they could all remember the "mmm" sound and show it to daddy at the end of the day without me telling them again. (For 3 years, I've had Freddie look at me and say, with a puzzled look "what does it say again?" It is so good to not hear that question all the time!

Now if I could find the perfect motivator to get all of them doing what they should when they should...

Yay! He did it!

Finally!

It seems like forever. I've been waiting for Joey to sit up on his own without toppling right over for about 3 months now. He should have been getting his "sit-up" balance at about 6 months old. He is 9 months old now, and he is finally sitting up long enough for me to get a picture before he falls over...actually I got several pics. At first he was tense, trying not to fall, after a while he relaxed and started to reach for the grass. After big brother came to check on him, he finally leaned forward and tried to eat the grass...

This was also his 1st pair of shoes and socks...that was interesting. At first he hollered because he couldn't wiggle his toes. Then he decided they looked interesting...

Home

Well, after several months of waiting and packing, and waiting and packing some more...

We are finally here! Actually we got here two and a half weeks ago. Now we are unpacking, and unpacking, and unpacking some more...

The kids are adjusting and looking forward to sledding in the snow. They already found the sled hill, and have been sledding without snow, so we know it is a good hill.

I'm glad to see some routine starting to take shape. Routine is something we never seemed to have before. We finally all get to sit at the table for supper every day. The 4 littlest ones are getting baths and going to bed after supper, so they are asleep most nights by 8:30 (used to always be 10 or later). And of course, we are all enjoying having Dad home every day. Especially since he moved up here 4 months before the rest of us were able to move.

Still a few wrinkles to iron out...a few things to work into our routine. Some more unpacking to do, and spaces to organize. BUT we are home, and it feels good!

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

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".

Joey likes his hearing aids!

Yes, I don't know how much or what quality, but he is definitely getting sound, and wanting it. I know ideally you should stimulate both ears at the same time, especially during the HA stage, but he can't lay on them or they squeal, and he doesn't want to calm down w/o them...until he is so exhausted he falls into a fretful sleep, SO I took out the one in his "bad ear" and laid him on that side, so he could still "hear" with his "good ear", and calm down much faster and better. I can't believe that only 3 days in, and this young, he is that possessive of his ears!!! It seems he is almost insecure with out them. (next time I'll try the other side, maybe that will tell if he is getting sound in his bad ear...)

Without HA's he has about 4 very high frequencies that he hears between 85-95 dB in his left ear, and nothing under 110dB in his right ear.

We saw his Ped yesterday...he said Joey is extra social for his age (maybe has something to do w/ 6 older siblings?). The Dr was really amazed that Joey was doing so well after having Kernicterus (jaundice toxicity). Aside from hearing loss, so far there are no other long term things showing up. (Tho it is still possible...)

Well, it looks like we have started our hearing journey, and Joey says "no turning back now, I want sound!"

I think that will make it easier for me if it appears he needs a CI...because he (even at 4 months old) has said he wants sound, so I will continue on the path to get him the best sound I can. Be that HA's, CI's or both.

5-21-2010 Joey got his hearing aids yesterday

Joey got his hearing aids yesterday...that will take some adjustment! Because of the Auditory Neuropathy, we don't know when he may be getting some sound, or the quality of the sound. Also, he hits Auditory overload easily, because he is not used to having sound all the time or at these volumes (and we still don't know how much it is helping). This is a bit overwhelming to me....and to Joey.

We also have window air units, which I learned put a constant "buzz" in his ear when he is wearing hearing aids. So he upsets easy with all that, I think we will turn off the hearing aids when the air is on...at least for now.

I did turn the air off for a while this morning, and he seemed to be ok with the hearing aids for awhile...until he got hungry and tired. He fussed and wiggled them off. It was getting warm, so we left them off and turned the air on. It is still hard to tell if they make any difference, because he is not yet turning when we speak, but he does seem more animated with them on....but he also has animated times with them off....I guess time will tell.

5-20-2010 Hearing Aids Today!

Joey gets his hearing aids today. These may or may not help. If they do, that is great. If not, it is one step closer to possible Cochlear Implants. He has to do a "trial period" with hearing aids before being considered for implants. I'm glad of this, because if the hearing aids are enough, I wouldn't want to do surgery and implants, but if the hearing aids are not enough, it is nice to know that the implants are a possibility.

So, We are about to take a new step on our "journey"!

I found clothes for "Buddy Bear" and this outfit had a bandanna that Paci-puppy can wear. As you can see, these are truly Joey's Buddies.

5-05-2010 Hematology Appointment...MRI-MRV Results

Monday, Joey had a MRI and a MRV (for a close look at veins) of his head and brain. This was done to follow up on the blood clots found on Jan. 23rd, and to see if we could find out how much longer he would need to get 2 shots a day of Lovenox (a blood thinner).

Because Joey was sedated, there was a Peds ICU Dr. in MRI with him. The Dr told me after the MRI, that he was not a Radiologist, but this scan did not really look different than the one in Jan. to him...So, I was trying not to get my hopes up. I anticipated that we would have at least 3 more months of shots, before they would scan again, to check on things.

Imagine my surprise when the Dr. today in Hematology met me with the Radiology report, and said everything looked normal!

They want to continue the shots for another month as a precaution, but it looks like the clots are gone. This would also indicate no sign of a stroke, which they were concerned about with these clots.

I knew that everything was "going to be OK", even if it took more time. God has had HIS hand on Joey through all this. But today was a special blessing.

Joey is growing well too...He weighs 14 pounds now, and is starting to roll over...not bad for a 3 1/2 month old who should have been "developmentally delayed"!

So, for now, he is still on the Lovenox and Keppra, both twice a day, but they are both "as a precaution" and should be stopping soon (over the next 1-2 months).

There may, and probably will, be more bumps in the road, but right now our main concern is his hearing.

So, Is God Good? Or What?!!!

5-03-2010 MRI

Joey did well through the sedation and MRI. He is a bit cranky and clingy this evening, probably from feeling funny with the sedation.

We should have the results when we go to his Hematology appointment on Wednesday.

Thank you everyone who prayed for him today!

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!

Jon and Joey

When Joey came home from the hospital everyone was excited to see him. My brother, Jon, was very interested in what was going on, and what the wires were for (apnea monitor). I told him that it was to alarm and wake me up if Joey quit breathing.

Later Jon told mom, "Joy, has to plug her baby in at night so he can breathe, the poor little tike!"

So we have a "plug-in" baby!

Kiffer and Joey

Every time I take Joey to the Dr., Kiffer is at the car door before I can open it, when we get home. He has been so concerned about Joey...Always asking, "Is our baby here? Is he sick again?" Tonight he came, as he often does and said, "I just want to look at our baby." But this time he added, "he is our baby now, Jim and Crystal gived him to us."

My brother and his wife had Sammy about 6 weeks before Joey was born, but my kids have never seen the 2 babies together, so Kiffer has decided that there is 1 baby, and he is always checking to make sure that "our baby" is still here!

Everyone says Joey and Sammy looked a lot alike. I guess it is time to show the kids the 2 babies together...

Eric thought that Sammy was Grandma's baby, because that is where he saw Sammy...Grandma's house.

02-14-2010 Joey...one month already!

Joey is 1 month old already! He is happy and starting to gain back the weight that he lost from being so sick. Someone must have told him that he was still too little...he has been eating constantly the last 2-3 days!

Everything is going well so far. We still won't know any more about the blood clots or the seizures for a couple months yet, but these are "controlled" with his meds for now. Fortunately my cell phone has a Calendar where I can set several alarms a day, so all his med times are in my phone. This works well, as long as I keep the phone, the meds, and the baby with me...so far, not a problem.

1-29-2010 Joey ... We are home!!!

We got home about 7:30 tonight. Now we are overwhelmed with all the love that brothers and sisters have been saving up for the last 10 days!

I have to get us onto a good schedule (with an alarm clock) for meds. At least he is only on 2. I just tend to forget, and these I can't afford to forget...so an alarm is important.

We have Apnea monitor at night, Lovenox injections 9am & 9pm, Phenobarbital (which he chokes on) 4pm. Not a lot compared to some people, but a lot for me to remember.

Thanks for all your prayers.

Time to go spend time w/ my little people...and give baby meds.

Joy

1-28-2010 Joey...home soon

1-28-10 Joey...home soon?

It is really hard for me to call out, I have to get the ward secretary to make the call for me, and then transfer it to our room. I am glad of calls tho. If no answer try back in 15 minutes...if I'm busy it is rarely for more than a few minutes at a time....and I'm not sleeping during the day, so you won't wake us.

Phone 455-7000, room 5511.

We should be going home soon...Lord willing. Maybe in the next day or two. I had to update my CPR training tonight, in order to take him home with an apnea monitor. I have to give him a shot tomorrow so the nurse can see that I know how. We are also waiting to get his meds together for home, and appointments for follow up with at least 3 Dr's.

Thanks!

Joy

1-27-2010 Joey...We have a room!

Joey is out of PICU.

So our new room number is 5511, the switchboard number is 455-7000.

We are down to 2 monitors...An apnea monitor, and a O2 sat. monitor (not sure why they don't have that all in 1...I'm sure I've seen them before.) Still this is much better than all the EEG wires, IV lines, and regular PICU monitors he was hooked to!

I guess they are still planning on sending us home this weekend...once they are sure he is staying hydrated.

I know that he will be going home on 3 meds, and an apnea monitor. This is much better than how sick he was when he came in, and all that he has been through this past week.

We will also be getting a referral for a pediatrician, and following up with a neurologist (the same 1 who saw him here), and a hematologist.

Some of the issues Joey has had or is still dealing with:

Bilirubin Toxicity

Dehydration

2 clotted veins in his brain, leaking fluid into his ventrical space in the brain

MTHFR (a chromosomal marker that indicates he may be more prone to clotting.)

Apnea (probably a combination of 2 types)

Seizures

We have no idea which of these are related, or which caused others. Some of these have been resolved, some treated with medication, and some will take time or will not go away (the MTHFR is probably permanent...as it is a marker in his chromosomes).

Some of the treatments he has had:

an ambulance ride

a helicopter ride

almost 24 hrs of bright blue lights and eye mask

a blood exchange

1 MRI (sedated and intubated)

1 Lumbar Puncture (while sedated for MRI)

2 CT scans

several X-rays

3 overnight (12-24 hr) EEG's and 1 for 45 minutes

days when he was not allowed to eat, or too sick to eat

NG tube

Countless labs

IV fluids and meds

injection meds

oral meds

Continuous Monitors

8 days in PICU (he was only 5 days old when he got sick)

Several types of O2 (room air, Nasal cannula, high flow, and CPAP...High flow and CPAP both under high pressure blasting into his nose to keep his air way open.)

Many days of being rubbed, thumped on the feet, jostled, beat on the back, and even O2 bagging to bring him out of Apnea spells...as often as 8 times an hour.

It has been a rough week for the little guy, but he has weathered it really well (says proud mommy!) We will miss our nurses and Dr's in PICU, but not enough to go back!!

God is so good...I have a baby that "looks" healthy again! he is acting like he should and doing much better than many people expected. It will take 3-6 months for the clots to resolve, and he could have developmental delays show up even 18 months from now, but right now we are not expecting trouble. We think and hope that his problems have been found and should resolve in about 6 months. (one day at a time.)

It could have been vastly different. Joey could have died with that first blue spell at home Tuesday night, a week ago. He could have never recovered from the first days of toxicity, and had severe brain damage. So far it looks like he will make a full recovery. God has a plan for this little man, can't wait to see what it is!

Joy

1-26-2010 A good day

Joey has not had any more Apnea, or seizures Since his meds last night (about 4pm). He has been very sedated from these meds but after about 48 hours of apnea and possibly seizures, he really needed the rest. He ate 1 time during the night. We took the CPAP off to feed him at 8am today, and they said leave it off. He did great without it so he is now without O2. The EEG is still on to monitor how he does on the meds and make sure he doesn't have any more seizures or other unusual brain activity. They are doing labs to see how much medication he needs.

He is still sleepy, but starting to eat better, and enjoying snuggling. He looks good, his color and ability to focus his eyes are much better, and he is starting to look and act more like he did before he got sick.

Right now he is still attached to: IV, Heart, Respiration and O2 monitor, and EEG. This is a lot of wires, but he can be held (just have to stay next to his bed, as all these wires are holding him in 1 place).

The neurologist wants to keep him 1 more night on EEG. He has done well, but they want to keep watching and make sure they didn't miss something.

The Dr said we may go to a regular room tomorrow if he keeps doing well. (that will be nice, as we should get down to just an IV...so more "wiggle room" for holding and cuddling.)

His meds are sedating, but as the dose gets adjusted, and he gets used to it, he should be more awake.

God is good! Can't wait to see what HE has in store for this little one's life!

Joy

PS. the only alarm going off today was his IV beeping!

1-25-2010 Joey ... Hephalumps and Woozles

We are still finding / trying to find more pieces of the puzzle.

It appears that Joey may have 2-3 types of apnea. Which would help explain the frequency.

They put him on nasal CPAP to help with the breathing...it forces so much air in that when he does have apnea, he is more likely to breath on his own again. This is a little mask that fits over his nose and has a bunch of tubes going up over the top of his head. He looks like a little Hephalump (from pooh's hephalumps and woozles).

Seizure apnea...While it did not appear on the EEG last week, it now appears Joey has developed Seizures from the blood clot. These were seen on a new EEG today, and will be treated with Phenobarbital and monitored with an overnight EEG tonight. These should go away when or before the clot goes away. This does not mean the the clot is worse...only that it takes time for the symptoms to show up.

Stress apnea (from Billirubin levels)....not much we can do about that by itself right now, but it should go away and treating the seizures probably will help with that too, as Phenobarbital is somewhat sedating and should help with his stress level.

Sleep Apnea...This they were going to check with a sleep study, but feel that treating the seizures was most important, and as they know he has the first 2 types, they feel that he probably does not have significant sleep apnea and the sleep study would require a night in the sleep lab, which means being out of PICU overnight...nobody was real comfortable with that right now....he needs to be where he is.

He is able to take a bottle, and may get strong enough to nurse again, before going home. He probably won't want to eat tonight, because he actually got 2 meds to get the seizures under control (so he is knocked out right now)....normally (hopefully) he will only be getting 1 med, and will be alert enough to eat as he needs to.

So we are still working on our 2 goals to get home...get rid of the apnea, and get him eating well. And long term (3-6 months) get rid of the blood clot.

The Dr's keep saying to expect to go home next weekend. I'm not holding my breath, but now that we finally have a cause for the apnea, and the cause can be treated, it is starting to sound reasonable that we may make it home then.

Peace in the midst of life's storms....

Joy

1-24-2010 Joey...Apnea again

When we put in the NG tube for feedings, Joey started having apnea again. We removed it, but the apnea is not getting better. This is the only procedure I have not felt totally at peace with, but I didn't say anything...it seemed logical, I just had a gut feeling....

Joy

1-23-2010 Joey ....Good news

They started Joey on a blood thinner last night. After all the Dr's consulted this seemed the best approach. If the clot were to grow, he would have a stroke and likely brain damage (according to the neurologist). If the thinner caused bleeding, that could be treated or drained.

The CT to check for bleeding this morning did not even show the bleeding that they had seen yesterday. I asked if that was because CT is not quite as sensitive, or because the bleed had already reabsorbed and gone away. The Dr said it could be either, but if the bleed had grown it would have shown up on CT. So we are no worse off than yesterday, and maybe better.

The plan now is to tube feed today, because he is too hungry to eat without choking, and we don't want to start the apnea again. He is on high flow O2 which helped to stop the apnea about 24 hours ago.

Tomorrow they will stop the O2 and allow him to eat (nurse or bottle...which ever works). If he handles room air and eating w/o any trouble (apnea) he can go to a regular room.Then when he is eating well enough to avoid dehydration, he can go home.

He will still need "3-6 months therapy" to treat the blood clot (according to the hematologist), but this is something they can teach me to do at home.

So my summary of this is: If everything goes perfectly, no more apnea, no other issues or problems, We maybe home in about a week with a basically normal healthy baby. As far as we can tell so far he has no brain injury at this point just the clot, which will take time and treatment. This is just a guess as things don't always go as planned....we must still take things 1 day at a time, but we are starting to see light at the end of the tunnel.

It is a relief to finally have some answers about causes, symptoms, and treatments. Hopefully nothing else will come up, and the symptoms he has now will continue to go away.

Thanks for the prayers! God is still in control!

Joy

1-22-2010 Joey...Apnea and An open ended answer

Joey started having very frequent episodes of apnea, yesterday afternoon. In an effort to find the cause, many more tests have been done. EEG showed no seizures. They are still doing all kinds of labs.

MRI showed clotting in the superior sagittal sinus, and the sigmoid sinus (both are veins). while both are clotted they are also leaking a tiny bit into the ventricle space (light blue space in the pic) below the superior sagittal sinus.

(2 pic links below)

http://www.rci.rutgers.edu/~uzwiak/AnatPhys/Blood_Vessels_files/image036.jpg

http://www.google.com/imgres?imgurl=http://www.obfocus.com/images/csf.gif&imgrefurl=http://www.obfocus.com/questions/qanda10.htm&h=358&w=322&sz=25&tbnid=qZzBSB3s6XCdSM:&tbnh=121&tbnw=109&prev=/images%3Fq%3Dventricles%2Bof%2Bthe%2Bbrain&hl=en&usg=__v1WeYTkwy_uHOypqnkAeiHhfWQM=&ei=rR5aS4S7B5CXtgeGy62kAg&sa=X&oi=image_result&resnum=4&ct=image&ved=0CBsQ9QEwAw

We think this is the cause of the apnea. The treatments are "time" which we think his body will eventually clear the clot or reroute the veins. Problem being too much apnea could cause O2 deprivation and more troubles.

Another treatment is a blood thinner, which could shorten the healing of this clot, but could make the leak worse causing pressure on the brain or other bleeding problems in the body.

Also if this was caused by something other than the jaundice...like a fluke genetic disorder, they would be different treatments than listed above, so genetic labs are being done.

The Dr is consulting with Hematology because they work with blood disorders to see what would or might be the best treatment plan. If they reach no clear conclusion...such as this is definitely best for this child because of A, B, or C.... we may be presented with options and asked to make the call. Right now while waiting for more results and info, they are saying just watch him this weekend and see how he responds...and hope and pray he doesn't end up on the Ventilator for respiratory distress, Possibly do a sleep study Monday. Still so many variables we have no idea if / when he will get better. Tho I trust he will. (no chance of going home before Monday, and maybe much longer....)

There are also so many things with or without treatment that "could" happen. Either way, pressure could build on the brain causing more trouble. Or other issues could show up from Billirubin toxin that have not been seen yet.

It is amazing...the peace of God! I have not been overly concerned about the outcome, because I know Joey is in God's hands. Nothing can happen that God does not allow. I still have the emotions of "momma", but with God's peace, I am able to step back and look at the situation reasonably and medically without getting frantic. We are in a good University Hospital. I am pleased and thankful for the care and detail that is taking place. Humanly speaking he is getting the best possible care. As parents our concerns are addressed as quickly as possible. On a bigger scale, God may use medicine or He could touch and heal him, whatever, we feel His hand and know He loves Joey more than we ever could...tho that doesn't seem possible as a parent's love is pretty big.

Thanks for your continued prayers!

Joy

1-21-2010 Joey and jaundice...the whole long story...God is good!

Joey is doing better. They did turn off the lights at 11 pm last night, tho the labs are still needing to come down more. If they don't go back up, the lights will stay off, now he needs to eat to keep the labs down. I got to hold him for the 1st time in near 24 hrs when they turned off the lights! That felt so good! I'm still pumping to feed him, as he is too wore out (from being so sick) to nurse. But he looks much better, and is also having fewer bouts w/ apnea (also caused by the jaundice/billirubin levels being so high). If he holds his own, we may get to go home tomorrow.

To back track for those of you that I had not told...

Joey (5 days old) turned blue/purple at home at 12:30 am Wed morning. Seemingly no reason...he'd been normal, but a little jaundice like all my babies....Praise God, I was awake to see it! I'd almost gone to bed 2 hours earlier. I picked him up...color returned to normal, except a shadow around his mouth. We decided to go to Hosp. 30-45 min away.

2-3 min down the road it happened again (dome lights are not good for trying to watch a baby in the dark.) about 7 min from home is an EMS dispatch station....I called 911 and told them to alert this station as we were coming in w/ a blue baby. We pulled up and transfered to EMS while hubby followed (at 100 plus mph w/ lights and sirens...after another blue spell in the ambulance).

At Hosp. they worked with him, put him in isolete w/ blue lights, etc. They said his Billirubin level was up to 33. Not sure why he was turning blue but this could be the cause. The wanted to transfer him to a bigger hosp. where he could get a "blood exchange" as numbers this high were critical, and could possibly cause brain damage. Blue lights were not enough. They arranged a chopper transport for him, but daddy and mommy had to take their own car...could not ride w/ baby (I had peace about this, but was broken-hearted to let go of my baby...) We left at the same time as the Chopper crew...5:15am. At 6:30am we got to the Hosp. Joey had been here about 30-45 min, and was settled in a room, so we saw him right away. (4 big blue lights, and all the tubes, wires, etc that go with a stay in PICU). But he was still alive and doing ok considering....still having many bouts of apnea. (feeling helpless for all the mommy things I can't do, snuggle, nurse, etc.)

So after a day of labs for everything....to see if infection or what caused it, or if just not eating enough....they did the blood exchange to help remove the billirubin, and lights to 11pm, when his levels came down to 14. They finally found the cause....ABO incompatibility...I had never heard of this, and did not realize that his blood type was different from mine (I thought my hubby and I had same type, but must have not known his type was diff.)

I'm O+ and Joey is A+. at the end of my preg. some of his blood passed the placenta to my blood. My blood made antibodies to fight this. Then those antibodies passed back to him, basically causing his blood cells to die faster than normal causing toxic levels of billirubin. So the blood exchange also helped to remove those antibodies, so now he should be fine, as long as his body can kep fighting the billirubin levels down to 0 and they don't go back up.

This may also explain why all my kids were jaundice...they just never got critical, so we had no idea.

Through all this God has been so good. Every step of the way, I saw His hand. Even not knowing the outcome, and being overwhelmed emotionally, I still had a peace that only God can give!

The Dr's and nurses have been wonderful, at both hospitals. Not just concerned for Joey's health, but for mine and my hubby's well being. Everyone has been great about my new mommy emotions, and quick to offer any answers they could with good explanations, etc.

The ER Dr even prayed with us before putting Joey in the care of the chopper crew! Many Sweet Christian people around and even several w/ or from big families that thought it was awesome that we have 7 kids. (that is something I don't get often....most people seem to think I'm crazy to want a big family.)

Thank you for reading my ramblings and praying for us!

Joy

1-20-2010 Joey and Jaundice

Apparently what Joey has is ABO incompatibility.

http://en.wikipedia.org/wiki/Hemolytic_disease_of_the_newborn_(ABO)

He is doing much better, but we are still using lights to get his jaundice low enough. He had a "blood exchange" which helped.

Best case....if his 11pm labs are good enough, he can come off the lights for awhile to see how he does then. If all is good, we may get to go home Friday morning.

Thank you everyone for your prayers!

Joy