Great New Book

I just had to sit and write really quick. I have A LOT to do today, but while I was eating breakfast I started a new book and I have just read ONE chapter and it was AWESOME. It was the best first chapter I have ever read. It is called When the Day of Evil Comes by Melanie Wells. It is a Christian Suspense novel about spiritual warfare. It sucks you right in and leaves you with questions and a general feeling of uneasiness which makes you want to keeeeeeeep reading. However, I have LOADS of things to do, so it will have to wait until lunchtime. :-(

One more thing..I am really excited. One of my friends may become one of Kaedy's nurses!!! She is a NICU nurse at a local hospital and she would be perfect for working some of Kaedy's shifts. She would be doing some of the overnights so Tonya would not be working 7 days a week anymore and that would also mean if Tonya needs a night off, we would have someone else!! WOOHOO!!! The worst part of it would be wanting to hang out with Tarry while she was here overnight, just to talk to her. LOL. I will have to force myself to go to bed. Also, she is going to come here on Sunday night to be here in case Linda needs any help during the Harvest Dinner at Church. HALLELUJAH!

Have a great day everyone!!! This is the day the Lord has made, REJOICE and BE GLAD in it!!!

This and That

Well the bad news is our insurance has handed down their edict about our coverage. They want strictly 20 hours a day, not 140 hours a week which means that we cannot have Linda work for 16 hours on Sunday, like she has been. She will have to go back to a 10 hour shift, which, unfortunately, will not cover both church services. We will have to go back to me going on Wednesday night and Michael going on Sunday mornings. Brittany has to get there every time because she is going to be in a play for Christmas so we will have to figure out how to get her there. And I just realized that I need to ask Linda to come this Sunday night, instead of Sunday morning so we can go to the Harvest Dinner. I feel horrible going to the dinner and not going to church in the morning, but we are doing a play for the dinner and I am reciting my poem, Talitha Cumi. Well....this is a conundrum. Hmmmmm this will require some thinking and finagling on my part. My mother in law is not available to help because she just had knee surgery. Sherria can't help because she has to be there too. Same with Timmy and Hillary, my other babysitters. ARGH!!!

We had an Egypt co-op at my house today. It has been a long time since I have had 11 kids in my house all doing projects. It went very well, though, thanks to Paula and her keeping things under control and moving. Although it was FREEZING outside today, we sent the kids out, too, to keep them busy part of the time. They worked on painting their homemade paper, making invitations to Egypt night, painting their mummy masks and designing their menu for the party. Reminder: I need to get a babysitter for that night too, and see if Linda will switch her hours. ARGHity ARGH ARGH.

Kaedy is doing some new things....she learned to hold her cup all by herself and drink from it starting today. She also started playing tug of war with her circuits (which is not a good thing!!! although it is funny!) She is making some sign that none of us can figure out. I wish we knew what she meant, she does it quite a bit.

Well, I never did finish reading Expiration Date. I was FORCING myself to get through it and I thought that was silly. I ended up reading about 3/4 of it before I quit. I did not care about he characters at all or what happened to them. Instead I read Tested by Fire by Kathy Herman. It is first in a series she is starting. It was not my favorite book, but it was a quick read. It was more like what I thought Christian Fiction would be like before I actually started to read Christian Fiction (thanks to my much-missed, good friend Mary!). I want my books to be focused on characters living victoriously through the promises in the Bible and the abundant life that Jesus has given us.

Okay, I had better either get to bed or get started writing. Hasta!

The first day of the rest of my life

That's what today is!!! WOOHOO!!! HALLELUJAH!! I am a new creation! I'm a brand new woman!! Old things have passed away! I am born again!!

I have been REALLY tired lately and had some problems getting going. Mostly been wanting to rest. Unfortunately, with 3 girls, a husband, and a house, resting isn't really an option for more than one day. SOOOO today I am starting anew.

I have a bunch of new ideas about school (thanks to Paula). I have some new habits I am cultivating (with Sherria) and I am trying to stay on track with my list (ala Flylady). I have lots of ideas and I just need to start implementing them. I am more organized and in better control now of my life than I have been for a year but I still have lots of room for improvement.

I was just going to say that I needed to find time to write them all down. Well, no time like the present! Here are some of my changes (not in order of importance):
1. no more pop
2. spending time every night writing
3. more time with God - Bible time, prayer time
4. Eating to a "5" (see Thin Within)
5. Going to bed by 1030
6. Getting up at 6am
7. Getting a new meal plan going
8. new rules for B and Em:
a. no "big" breakfast unless Britty is completely ready for school by 7:45
b. cereal if she is not
c. Emily will be put in time out everytime she interrupts.
d. Emily will no longer be allowed to get out her own clothes...Mommy will have to help her.
9. Different load of laundry every day
10. New Flylady list because of new nursing hours
11. Making Britty a weekly list of school assignments.
12. Making Britty and Emmy chore lists
13. Cutting down on people coming over to 1-2 a week, or doing it after school hours. (that doesn't include Ria, of course!)
14. Cutting down on nap time for Mommy (at first in minutes, then in days)

Well that's all at the top of my head. I will see y'all later....Tschuss!

A Day out of her room

On Friday, when we had Kaedy without a nurse, we started off by taking her to the dining room for a lovely breakfast of plums. She loved them so much that she picked up the bowl and drank them!! LOL After that, we took her to the tub and she and Emily took a bath in the tub. It was Kaedy's first "big girl" bath. After drying her off and getting her dressed, I did the rest of her medical care: trach tie changes, omni flex change, HME change, etc etc. She was so exhausted after such a big morning, she fell asleep for a few hours.

Once she woke up, we brought her into the den and Emmy cuddled with her on the couch for awhile. Then we put her on the floor where she played with toys for awhile. When she started to get tired, I cuddled with her on the couch for awhile and then we put her in her new walker-thing and she played. We fed her dinner and then played a little more and then took her back to her room. It was so cute. It was like she had never seen the things in her crib before. She was picking them up and looking at them one by one. She soon went to sleep and I am sure she dreamed of other parts of the house she hasn't seen yet! LOL

What I am reading

Right now I am reading a book called Expiration Date by Eric Wilson. I just started it but it seems very good. I am also reading The nearly perfect crime : how the church almost killed the ministry of healing by Francis MacNutt and The Gospels in our image : an anthology of twentieth-century poetry based on Biblical texts.

I have just recently finished:
Storm gathering / Prequel To The Splitting Storm Rene Gutteridge.
The splitting storm / Rene Gutteridge
Nowhere like home / Mary Higgins Clark
Boo : a novel / Rene Gutteridge.
Life management for busy women [large print] / Elizabeth George.

I forgot how much I don't like Mary Higgins Clark. I used to love her books, but then, after a few of them, I realized they were pretty much all the same and pretty much all silly, so I stopped reading them. I ordered one at the library this last time and read it very quickly and remembered again why I don't like her.

Rene Gutteridge's novels are WONDERFUL!!! She is a Christian Fiction writer. The Storm Gathering and The Splitting Storm are both suspense novels and they are very very good. Boo is a hilarious book which is a quick read and has you loving her quirky characters.

Kaedra's 1st Birthday!!!

This was written to a friend for her to pretend she was at the party...it will give everyone an idea how it was! Enjoy!

Okay, so you got here about 12:20, straight from church and you probably followed Michael and the girls. I wasn't quite ready, so you sent the kids outside to play with the girls and you came upstairs to talk to me while I curled my hair. Sherria came about 15 minutes later and she came up to talk to me too. Melissa (one of the hostesses) came while we were upstairs, so I finished up and we all went downstairs. I came to show you and Sherria Kaedy's very first picture because I had put it as the computer desktop. Then we went into the kitchen and looked at the cake which was HUGE - a FULL SHEET! And Beautiful!! It was different colors and flowers and butterflies.




Paula got here about that time and set up balloons and decorations. Then some people from our church arrived and we sat down with them on the couch in the living room, since Kaedy was still asleep. She woke up soon after, so we came into her room and Linda was holding her. We all sat and oohed and aaahed over her! She seemed a little disoriented and shy, but happy. More and more people started to come, so people started switching out who was in her room and who was in the rest of the house. Sherria, you and I stayed in her room with her most of the time. I had her on my lap when they decided to bring in the cake and sing to her. We sang and blew out the candle and she put her hand in the cake a little.



I think she was more overwhelmed by everyone being there with her and singing to her, so she wasn't that interested in the cake. A few people said "is it okay if she opens our present?" so we told them yes. So, she opened a few at a time. Melissa held her for awhile and then someone asked if she could sit up by herself, so I put her on the floor and let her play with some of her new stuff. About that time, Brent and his family showed up and met her for the first time. I left then to go talk to the people in the rest of the house, but Ria stayed in the room. My Pastor was here with his wife along with LOTS AND LOTS of people from church. Only one family showed up from my homeschool group - but I was so excited to see them because they had adopted a baby from Korea and she had finally gotten here about 2 months ago and I had not seen her yet. She was also about 8 months. Two good friends that I NEVER get to see showed up - Alison and Terri, but I didn't get to spend much one-on-one time with anyone. It was SOOO busy. It wasn't really crazy yet, that was the nice thing. Most of the time the kids were outside and noone really crowded the baby or hogged her or anything. About 3:30 everyone started to leave and Melissa and Paula had to leave a little after 4. Kaedy was in my lap, but dozing on and off. They brought in their present for us, which they, plus one other lady from my homeschool group, pitched in on. It was a large play yard (like the one the rugrats use). We were so excited!! I have never had one before, but we needed something to contain Kaedy and how far she could get from the vent. Linda is THRILLED! no trying to chase Kaedy around the house with oxygen and her ventilator!! LOL

Kaedy had a new trick, as of Saturday, so I showed it off a few times. She is now able to stand up with me just holding her hands!!! :-) We are SOOO thrilled. She loved showing off and everyone clapping for her. She LOVED the attention she got and just "ate it up." She was not at all overwhelmed or freaked or anything. She took it all sooooo well!

One of her favorite presents was the Fisher Price Musical Chair . My parents sent me the money to buy it for her and we gave it to her on Saturday. She just LOVES it!!!



Brent and Kim bought her a Fisher Price Intellitainer. We are going to put it together today. I think it will be her den toy for the evenings when we don't have any nurse and we are cooking and cleaning up. I think she will like it a lot and it will keep her QUITE busy!! LOL. I had no idea they were getting her that.

That is pretty much the story of the day. Did you have fun???????

Not much new

Not much new around here....No nurse today, so I spent most of the day in Kaedy's room with her. We had a good time although Satan is trying to give her a little head cold. We are not accepting it. We have never heard of a "heavenly head cold" and if it's not from heaven, it's not from God and if it's not from God, we don't accept it! HALLELUJAH! :-)

We moved our computer desk today, which was a big deal since it has been in the same place for 2 years. It is amazing how clean the carpet was under it. I love the new place where the computer is: I can see right into Kaedy's room and it is not in the way anymore. I also have a window I can stare out of! LOL. It looked nicer the other way, but this way is more functional, so we will keep it like this. I got to dust all around it and in it, too, which was great and makes me feel MUCH better about the thing.

I don't know if I ever wrote our new nursing schedule. It is awesome. We have nursing 20 hours per day which is basically 10pm one night until 6pm the next night. (We take care of her ourselves from 6-10pm) Linda changed her schedule on Wednesdays to allow me to go to church on Weds nights, so she now works 11-9, instead of 8-6. She also is allowed to work extra hours on Sunday, since we have no nursing at all during the day on Fri and Sat, so Michael and I are both able to go to church on Sunday. He goes to the morning service and I go to the evening service. The girls get to go to both. Our new schedule is great for going to church and having Kaedy to ourselves in the evening. We have been bringing her out in her exersaucer while I prepare dinner and she has been sitting at the table with us during dinner! YEAH!! NORMALCY!!!

Kaedra is signing a lot more now. She even has a sense of humor! Linda asked her for kisses the other day and Kaedy signed that they were "all gone" then smiled really big! She also does the signs for Mommy, eat, drink, and play pretty regularly. It is wonderful to be able to communicate with her!

Talitha Cumi

How do you thank those who have whispered supplications
From their mouth to the ear of the Father?
For those who have been on their knees for us,
Not only asking for miracles,
But thanking Him for the many blessings?
For those who put their hope in His word?
These are the people who agreed with us
The more than two or three
who arose
went with us to the throne
And came back changed.

It’s funny how He does that, isn’t it?
We think we are coming to Him on behalf of someone else,
And yet He changes us. Each of us.
And we arise
become more like Him.
It’s that time spent beyond the veil-
In the secret place of the Most High.
How can we not be changed?

We heard time and again
Even walking into Kaedra’s hospital room
You could feel the anointing.
There was something special there.
After spending time with her
Praying and singing and praising
We arose
With the faces of Moses
Bright and shining with glory.

And He heard us.
Oh, we knew He would
And His Word says if we know He hears us
whatever we ask –
we know that we have what we ask of him.
And we did.
No more Jarcho-Levin.
No disease.
He took it away and healed her.
And we arose
To see that he is not changed.

Within days of her being born
God spoke to us:
Do not be afraid, just believe
And she will be healed.
And she was.
And she is.
And we thank Him.

And we thank you.
You arose
followed us out into the desert
To have our faith tested and tried
By he who is in the world.
And he, the lesser, fled
In all seven directions.

God has plans for her
They have been spoken
And they will be done.
She is a peculiar baby-
Set apart for Him
His treasured possession.

But not just for Him,
But for all of us
We who have grown through her
Who have learned more about Him
By caring about her.
And what Satan meant for death
God used for Himself
That the Son of God may be glorified by her.

And Jesus said, “Talitha, cumi”
“Child, arise.”
And we all did.


Thank you

The things we never knew

She’s beautiful. Stunning, really, with those long, curled eyelashes. She has warm chocolate colored hair, with a curl on the ends. Her eyes are always crystal clear and her lips are the perfect shape for a pout or a dazzling smile. She takes our breath away.

Speaking of breath…..

She didn’t take one. Y’know when you push and you push and you push and finally the doctor says “STOP PUSHING!” and you have to hold it there, even though you want to keep pushing until you can’t push any more? And then you are allowed to push again, “but slowly,” and then the baby is there, up on your chest, everyone crying and happy and the baby is pink and crying or pink and quiet or anything but blue and not breathing. Anything but whisked away and suctioned and nurses talking in quiet voices, telling other nurses to call someone else in. Anything but being taken away from the room, with the doctor hurriedly stitching you and telling you “He’ll find out what’s wrong.” Anything but nobody looking you in the eye. Anything but that.

The funny thing is, I knew this wasn’t the worst. We’d already experienced that. The worst is when they let you keep the baby on your chest. Knowing that nothing they can do will make him breathe. The worst is when they tell you that you can keep him for five hours before the mortuary will be coming to pick him up. The worst is when they do look you in the eye – and tell you that they’re sorry but there’s nothing they can do.

It’s the things that they CAN do that we are thankful for. It’s the things they whisked her away and did. How thankful we are for things we never knew.

NICU is a whole different world. A world of gowns, quiet voices and wires. A world where we forget that she is ours and we let others tell us when we can hold her, when we can visit her and what her schedule is. It’s a world where we are told to expect the worst and told that we “don’t know what we are getting into.” We are thankful for every small thing: when they let me hold her for the first time, when we are able to put clothes on her and when she gets moved out of the most critical room into a smaller room. We are thankful when they finally give her a diagnosis: Jarcho-Levin Syndrome. Now we have a name and something to learn about. We don’t know to be thankful that they want to do a tracheostomy, but we end up that way. Thankful that she can’t become extubated anymore, thankful that we can start mouth feedings and thankful for how much easier it is to hold her.

We don’t know to be thankful when they move her to PICU either. We are frightened by change and by new nurses. They are frightened of us. They have heard we are “very involved.” They have also heard we are “in denial.” Soon we are thankful to be there. We love the new nurses, the private Noah’s Ark room and the nurses are used to us being involved and have their own views of whether or not we are in denial. And we are oh-so thankful when we find out there is a place where they can give her ribs.

We know new things now. We know to be thankful when she can tolerate a larger feeding, when she doesn’t have to be suctioned too many times, when she does not have “episodes” where she de-sats and they have to work on her to keep her alive. We are thankful when she switches to the home ventilator, when she is accepted into the rib project in San Antonio and when we find out we can ride on the jet with her.

Then, eventually, there is a new hospital in a new state with new staff and we know to be thankful we are here. We know to be thankful for these two brilliant doctors who invented these vertical expanding prosthetic titanium ribs. We know to be thankful when they tell us they will do the surgery on her, even though they have never had a child with her exact problem. And even more, we know to be thankful when they say she does NOT have Jarcho Levin.

And coming home. We never knew how thankful we would be when she came home. How could we have? Ten months ago, we thought she would be wheeled down in my arms to our car and to our little carrier/car seat and our life would go on as normal, with a few more naps and one more diaper bag. But now we knew. Now we knew to be thankful for the ambulance drivers who brought her home in her already-forward-facing car seat. And we were thankful for the nurses and respiratory therapists who filled her room with items we had never heard of before she came. Thankful for strangers in our house taking care of our baby and thankful that at least we know she is ours now and we choose when to hold her and what her schedule is.

We now know things we never wanted to. And the things we know, we are thankful for. We try to help others that are a few months behind us in the learning process; new mothers and fathers learning things they never wanted to know. And they are thankful too, for the things they never knew…..

Story about Olamide

NORMAL, Ill. (AP) - Friends and classmates mourned the death of an Illinois State University senior as authorities continued investigating how the missing woman's body ended up in a burned-out chicken coop in Mississippi. Authorities said dental records confirmed Wednesday that the remains were those of 21-year-old Olamide Adeyooye, a college senior last seen two weeks ago renting a movie at a video store near her off-campus apartment.

"You always hear about stuff like that on the news but it never hits close to home," said Adeyooye's friend, Rick Paterala, 23, of Schaumburg. "She was a great person."

Authorities did not release a cause of death and offered little new information on an investigation they say will now expand to Mississippi.

A native of Nigeria who moved to suburban Chicago when she was 8, Adeyooye was last seen Oct. 13 at a video store near her off-campus apartment in Normal. Her car, a green 1996 Toyota Corolla, still was missing.

Normal police Lt. Mark Kotte said authorities were still investigating how Adeyooye ended up in Mississippi. But he added: "It is not an incident of somebody going around preying on college students."

In Mississippi, Newton County Sheriff Jackie Knight said investigators believed Adeyooye's death took place in Illinois.

The body was found Friday as workers cleaned up a chicken coop in Lake, Miss., where firefighters had put out a blaze four days earlier. The coop is about 60 miles from Interstate 55, a highway that passes through Normal.

Nearly 40 investigators, including FBI (website) agents, took part in the search. Her family and friends posted fliers and sent out messages through Web sites and blogs.

"We still have a list of persons of interest and that hasn't really changed," Kotte said. "We still have quite a few people that we need to talk to, and also people now that we will be reinterviewing."

Adeyooye, who studied laboratory sciences and biology at ISU, was due to graduate from the 20,000-student college in December and planned to return to Chicago to complete her clinical training at a hospital.

She was reported missing when she didn't show up for classes and her weekend job as a waitress. Police launched a criminal investigation into her disappearance last week after evidence and interviews led them to suspect foul play.

Adeyooye's father said his daughter was diligent, quiet and never offended anyone.

"I want the justice to take place," said Adiodun Adeyooye, fighting back tears.