Be still

Do you take speach for granted?  I have always been able to hear and speak.  My first six children could always hear and when they reached certain stages, began to talk.  I never thought much about it (until ofcourse, they reached that non-stop talk stage and I wished they would just hush for 5 minutes).   Today though, between the phone calls to fix this or that with doctors and insurance stuff, I have listened to Eliza "talk".  Mamamamama...dadadadada....is about all it amounts to, but it's something.    It has been so fun to just be still and listen to her.  We have giggled and laughed all day with her.  We listen to her all the time, but today it's stood out more to me.  Maybe because she failed both tests so far?  I always took the baby talk for granted before.  Babies just do that, they make noises.  There are many sounds that we just assume will be there.  Things we don't think about.  The sound of the wind blowing across the farm or the sound of someone's voice.  The sound of a 9 month old making baby noises.  And a new favorite of mine, when they figure out they can make spitting sort of noises and bubbles.  Her little face all scrunched up like a fish spitting tiny bubbles out.  These are the days God ordained for her.  These are the little things God is teaching ME to see or rather, hear, through Eliza.  I am anxious about the ABR and what it will say about her level of hearing, but for now, I will enjoy the little things like baby noises.  And continue to learn sign language.  In the midst of juggling seven kids, one with a chromosome disorder and all that goes with that, mama's health issues got pushed aside.  My back is hurting badly.  And the neuralgia in my head has been a pain lately.  So I will be headed for the chiropractor tomorrow.  I know there isn't much to do about a degenerating spine though. 
It's not always in the big things where something can be taught and/or learned.  Although we have many big hurdles to attempt in the coming many months, today I chose to just live in today.  I chose just live in Thursday.  And look what happened!  "Be still and know that I am God" is what I woke up with in my head today.  So I did.  Even on the quick drive to town, I listened to her breath and sleep.  Turned off the radio and just listened.  It's amazing what you can hear when you just "be still".   Can I "be still and know He is God" tomorrow as well?  And the next day and the next day?   I may write that on the mirror so I don't ever forget to remember that.   Adding that to my prayers will help keep it forward in my brain too.
It's 1:50 a.m.  Eliza is wide awake.  I am contemplating getting her bottle things steralized.  That's a daily thing I need to do for her.  We don't have a working dishwasher, so all bottle pieces are washed extra careful, boiled and set out to dry.  I don't have the gumption to get off this chair though.   It wouldn't do to wake the rest of the precious sleepers in the house anyhow.  The task will wait for sun up.

Family

Everyday we work on the things Eliza's physical therapist suggests.  She really has to work sometimes to get her head up as far as she did in the picture.  I was so proud of her the day I took this picture.  She held her head up there long enough for me to snap the picture and then got tired.  Only a couple of times has she held her head up that high.  We recommisioned the Boppy nursing pillow to be a therapy pillow. 

I love it when the girls sit and play with Eliza.  Katie loves to sit and play with her.  Spending her school break time making Eliza giggle and smile.  They adore eachother. 

Olivia likes to play with her too.  She's a very blessed baby to have so many big sisters and a big brother to love her!

Because of my back and her gaining weight so quickly now, it is becoming hard for me to carry her everywhere.  She doesn't crawl or walk yet.  And her carseat handle is cracking from using it all the time.  I looked all over for a stroller for her.  We found lots.  But none suited her needs.  She doesn't sit up yet, so she would have fallen out of the others we found.   My parents found an umbrella stroller that has shoulder straps!  I am thankful that my parents love us so much.  :o)  Eliza was having a good time being pushed around the house by her sisters and brother.  She loves to chew on the strap.  It makes things much easier at the store and church too. 

Dad and brother were having fun watching tractor videos on the internet.  When I was a kid, we had to actually go OUT to the farm to watch the tractors.  Now, we live on a farm, with tractors and brother can't get enough.  As long as he has food and tractors, he'll be alright.

Yesterday while waiting for mama and Eliza to be ready to go to town, I caught these two watching "UP" the movie.  Apparently I took too long getting everything for Eliza ready to go. 

Keep on keepin' on

17 lbs!!!!!!!!!!  She's gained another pound.  That still keeps her down below the 10% on the charts, but's atleast she's ON the chart now.  I don't put much stock in the chart system, but it is good to see the red dot above the 0 line. 
Eliza did not pass her 2nd hearing test.  So now she needs to have an ABR test to measure hoow much she does and doesn't hear.  Over the next couple of days, I will go back and forth with the doctor and hospital for the hearing testing.  I can't make the appointment, the docs have to.  Omaha wouldn't accept the order I was given.  So now we just wait and see if they follow through on both ends.  We will go back to Omaha.  And winter is coming.  I don't drive much in the winter.   And I don't have a vehicle to drive anyhow.  Long story short...the tranny went out on the suburban last week.  9 people don't fit into Nathan's little 5 seat Omni he drives to work. 
Thanksgiving is a week away.  Sure did creep up fast this year.  Christmas is just 5 weeks away.  Eliza is 9 months old already.  This will be her first Thanksgiving and first Christmas.  I am very thankful that she is here to be with us.  I have a feeling she will love the tree lights.  She loves blinking things.  If we can buy a tree, I think we'll put it up as soon as we get it just so she can watch the lights.  :)
I probably should be taking a nap.  But Eliza is asleep on me and I love just sitting here with her.  Her head over my shoulder, listening to her breath.  She likes to listen to my heartbeat too I think.  These are the days.  Almost like they used to be.  Except she's a 9 month old, 4-5 month old.  Today I welcome the down time.  Someone from church came to help for a couple of hours.  Cleaning up the bathroom (oh my!) and folded the laundry (oh me oh my!).  The laundry alone is a big task.  There were atleast 6 loads in the baskets waiting for folding.  Now it's all ready for the kids to put away tonight.  Mrs. K is a wonderfully nice lady. 

How am I...really?

Raising kids is the best job.  It's rewards are enormous.  As with all things, there are good and bad days.  Good and bad weeks.  Good and bad news.  We learn to learn to praise God in the good times.  And then we must remember to praise Him in the storms as well.  That is easier said than done.  I've never been really good in the storm.  I grab my blanket and whatever food I can grab on my way to the safest place in the house.  The basement.  We huddle under the blanket until the storm is gone.  Maybe we'll peak out to see if the thunder and lightening are gone. 
When I got the initial diagnosis for Eliza, I wanted to wisk her away under that blanket and hide.  Nothing was OK anylonger.  Nothing was OK.  I was alone, with all of my kids in tow, not expecting to get such devistating news.  Talk about a blow to the gut.  No...to my soul.  Like a tornado screamed out of the sky and caused major disaster.  I know we went for pizza after that appointment with my parents.  I don't remember much of anything else that day.  Or the next days to follow.  Or still to this day even, it's all sort of a blur.  We just hide under our blanket.  The days that we come out from under there, the news isn't every good.  The doctors are the thunder and lightening strikes.  Somedays, there are little rays of sunshine that come to our home to play with Eliza and be here to talk and listen.  A welcome change for the short time they are here.  They bring sunshine with them.  It lasts for a short time and then the clouds roll back in. 
My worst fears were being played out infront of me.  My baby.  Sick.  Disabled.  Possibly deaf.  No real path to follow.  No definate pattern like with many chromosome abnormalities.  No one has any answers.  Where do I go?  Who do I talk to?  I only know one person that has a disabled child.  But she doesn't live here anylonger.  I know first hand now, that unless you've walked this road, it's impossible to understand it.   
Someone sent us a book written by a woman who went through a similar ordeal with their child.  On the first page, a doctor says that "chronic sorrow follows chronic disease".  Nathan (husband) said that's exactly right where I am at.   Slap! Me?  Chronic sorrow?  Nope.  I am fine.  Just do the next thing.  Shine it over...put on a happy face.  Inside, behind that half smile, my soul aches, cries, weaps.  And when no one is looking, it spills out.  Yep.  For sure.  That's where I am at.  We've had the chronic disease diagnosis.  Chronic sorrow truely is what follows.  (Although I hide it well.  Or atleast I think I do.  Maybe?) 
People ask about Eliza.  And I tell them, briefly, where we are at in our journey.  Then some ask how I am doing.  So I put on the half smile and say "I'm ok...tired though."  To which most say "I can imagine" with a little chuckle and we move on.   Most know that I homeschool the other children.  And there are 7 of them.  Ages 11yrs down to the baby.   Only one time has someone seen right through to my sorrow.  And she told me so.  I have never felt such relief.  Like she saw right through my eyes to my aching heart.  
My 2 am friend is Jesus.  Not God...Jesus.  I've had to sort of separate them in my mind recently.  God being more like a parent perhaps.  God seems like such a big distant word sometimes.  Jesus has become my 2am friend.  Friends are a hard thing for me.  Probably because I hide under my blanket.  It's safe and no one can hurt me under here.  So for the few people that read my blog, it's not that I am a snob.  I promise.  The past has not been good to me in the friend area. 
Reading the first few stories in this book... A Different Dream for My Child... by Jolene Philo, I see there is a light.  Just a different one.  A different journey. 
Praising Him in the storm.  I have had to learn this for real.  It's hard sometimes.  Ok...it's hard everytime.  It's hard everyday.  The storm (chronic sorrow) stays with me.  It gets the best of me even with my 2am friend by me 24/7.  But it's on those extra hard days that I have to think past the delays and deafness and frustrations and praise Him for making ME her mama.  Giving her two tiny different feet to rub.  Her few, but wonderful full belly laughs that make everyone else giggle.  Her beautiful smile just for mama.  The ache in my back from carrying her because I have her to carry.  She's mine to love.  And that is what matters. 

A long week...

 

Eliza has been sick for a few weeks.  I thought it was just a cold.  She was misserable Wednesday and Thursday.  And by the time Friday morning came along, I was getting worried.  We went into the doctor.  She has an ear infection, sinus infection and thrush.  I had no idea what thrush was!  I'd heard the term, sure.  But none of my other kids had ever had it.  Again...I got an education.  She's on amox for her ears/sinus infections and something else for the thrush.  I feel awful for not taking her in weeks ago.  (prob when the thrush started).  I thought her tounge was just white from the formula.  I'm a nursing mamma...not a bottle mamma.  What do I know?!

Her specialist doctors diagnosed her with FTT(failure to thrive).  Because the formula has done so well for her.  She is looking better.  Getting some chub on her little thighs and cheeks.  Our AEA is going to come out and work with her for physical/occupational therapies.  She will be 8 months old in 2 days.  And doesn't hold her head up, roll, or do anything that an 8 month old does. 

She is talking more.  Which is good for this mamma's heart.  If can get her to laughing, that is the best.  She giggles so cute.  We will have her hearing checked soon.  And her eye as well. 

It's bed time.  We had a good day at a bridal shower for my new Aunt.  She's so nice.  I am glad she's marrying my Uncle.  We'll drive out to Omaha for the wedding too.  Sure will be nice to go to Omaha for something other than the hospital!

School things

A friend of mine gave us a folder with some very fun folder games to make!  So I have been doing those in my 'spare' time (or rather ignoring a chore to do them sometimes).  The girls are having fun with them.  I have lots more to do.  Anyone who homeschools should have some of these on hand!  They take oh...maybe about 15 minutes to do I think.  I haven't really timed it because I don't just sit and do one. 

First off you need the pages.   And scissors.  And a roll of packing tape.  Easy.  Cheap.  Just send the originals through the copy/printer so you aren't distroying them.

Then you just cut out the shapes and tape them inside a manilla file folder.  I got a big box of 50 for about $4.00.

On the outside, tape the rest of the directions and picture so you can identify the folder easily. 

I took a small rectangle of black cardstock I had left from another project, folded it in half and taped it on to use a pouch for the game pieces.  I'm not a fan of plastic baggies.  And the cardstock was essentially free.  It also keeps the pieces with the game so there's no hunting down the correct baggie later.

We have some trouble with math concepts at our house. 

(no surprise to this math challenged mamma!)

So these have been great ways to try and get those basic facts in their heads without the stress of paper/pencil work.  It's working so far as a reward for doing the paper/pencil work actually.  I have others that are letters for Jess and Livi too that they are loving!  It's nice to see them excited about learning again.

Another fun thing I made was a weather sticky.

Same concept.  You can print a thing called Whatever The Weather from the net or just make your own.  I printed everything out and used the laminating machine I bought on clearance years ago.  Then cut each piece apart.  We hunted around town...our town is VERY small...and NOT friendly to crafty people...but we finally found some velcro.  I cut small pieces and put the soft side on each piece.  The rough side I attached to the board.  Which is really just a couple pieces of cardstock that I laminated in one pouch to make it more sturdy.

There is a tag for each day.  Then words to match each picture.  The duck is laminated inside with the cardstock.  There are extra sticky velcro tabs for days that are more than just a sunny, sort of cloudy Thursday in September.  The girls are loving this!  And it didn't cost $2 I bet.  I had everything but the velcro already at home from previous projects. 

The extra pieces we just keep in a tiny basket I got at the Dollar General for 33cents.  You could make another laminate page and attatch the extras with velcro (and I think I will).  But that makes it cost more.  Not much tho since velcro is pretty inexpensive.

Growing!

2 sick girls.  Katie and Eliza.  Neither were feeling very well today.  Mamma was trying desparately to catch up on dishes that had been completely ignored since Friday because she was so sick.  So Katie got to give Eliza her little bottle to keep her content for a bit.  It worked well. 

I've been going to do this for weeks now.  Finally I did.  We got out the digital scale, dumped out the box of diapers to use as the 'bed' of the scale and weighted Eliza.  I set the box ontop and then turned it on so it would be at 0.  I was very happy to see that it stopped at 14 lbs 12 oz!  That's progress.  Slow...but still progress.  I will just keep this little contraption out and do it every week.  I sure wish I would have just done it sooner!  Now I don't need to wait to get into the doctors office.  (don't worry...I had LOTS of helpers on both ends making sure she didn't squirm and make it fall)

Little Miss Liza

My little lady bug is getting bigger.  Slowly.  But every ounce is a blessing to this mamma.  I bought her a new little phone the other day and she decided to call grandma.  :) 

We are working with the local AEA now for her.  Physical, speech, occupational, hearing.  It will be good for her.  I am excited to see that there are people who want to help us.  That don't charge us an arm and a leg.  With AEA, it's free.  I wouldn't mind paying for services, just not at the going rate of 'break the patients pocket books' rate.  I want her to improve where we can get her to.  God knows.  And he made it happen. 

She found her thumb not long ago.  So far she hasn't been able to figure out the pacifier.  Couldn't keep it in her mouth.  I couldn't resist the picture.

After I took that picture she decided it was funny.  The flash must have made her laugh.  I love her wild hair in this one. 

So now we wait until the middle of October to get her hearing tested.  We think she can't hear.  But...that could be as simple as having fluid on her ears and need tubes.  Or be serious and need hearing aides.  Until October, we will just keep praying about her hearing. God made her perfect.  Deaf or not.  She makes some baby noises and grunts like she should.  A good sign.  I'm tempted to think it's probably just fluid on her ears because of the peekaboo video before.  She must have heard Anna that day. 

NAME CHANGE!

I am not sure how it works to change the name of the blog.  If they will tell you that I did change it?  Guess we shall find out.  In anycase, I changed it because I was tired of the old one.  Time for change.

Charlie Dec 2008- Sept 2009

We stayed home from church today. I am still not feeling good. And a couple of the kids were sick, tho not as bad as I was. I thought it good for them to get some sun and fresh air. So they went out to play. I did some dishes and sat to watch "The Donna Reed Show" on Hulu. After a while, Belle comes barrelling in the house that Charlie (the dog) had been hit...no...run over by a car. So I ran outside. Sure enough, Charlie had been hit. The guy did come in the drive and talk to Nathan. Most people would just keep driving. I thought it was nice that he stopped.
But...the 3 girls were in the tree and witnessed the whole thing. Olivia is devestated. She's only 4. She is having a very hard time with it. And now won't go to sleep because of what she saw.
Tomorrow will not be easy. A and K are on vacation with G'pa and G'ma. They don't know yet. We raised Charlie's mama. She had a huge litter and we kept Charlie out of the whole bunch. K is very attatched to him. She will be devestated too. I can not find a picture of Charlie tonight.
Charlie...was a good dog. He never drooled all over you. He sat and layed down on command. He never barked like crazy unless there was an animal upto the house in the middle of the night. Then...he would bark until dawn. He was always so snuggly with the kids. He loved to be loved and played with. Nim (the cat) would pick fights with him and then run up the tree. Charlie would just sit and wait at the base of the tree for Nim to come down. It was rather hillarious to watch them. Such good friends they were.
I am not a dog (or cat) person. But I miss Charlie too. And it breaks my heart that the girls had to watch the whole scene. It breaks my heart that Olivia is having such a hard time. We just sit and snuggle, talk about the funny things Charlie did and cry.
Tomorrow, when A and K get home, we will burry Charlie next to Maggie and Buddy. The 2 other dogs gone before Charlie.
Charlie, a good dog was born in December 2008 in our basement. He died from his injuries September 2009. He had a great 10 months with us.

A good idea?

My In-Laws and my children ride bikes. Pedal...not motor. So we sent the oldest 2 with them to MTR this weekend. I'm wondering if that was a good idea. Belle was sick last week. Gar is still sick. I have been sick since yesterday and today. After ibuprofin, musinex and coffee, I don't feel much better. My voice has taken a holiday without asking me first. It's just sinus/chest infection, but it's like running into a brick wall this time. Stopping us flat. I hope the oldest 2 don't get sick while they're gone. That will be a very long trip for them if they do. And I don't know how you ride one or two people on the quad bike. It's meant for 4 people. Guess we'll see. I can't drive up to get them. It's like 5 hours I think up there.

Eliza lays in her chair next to me. She was sleeping like a good baby. Her arm in her mouth and all. But Livi climbed up next to her and woke her up.

Through the fog, I have managed to put a load in the dishwasher. I also got diapers washed. Now they sit in the basket on the floor infront of me. Later I have to load the little people up and go to town. This is much harder to do when I can hardly move to begin with. We will meet Nate at the store so he can sit with the kids while I shop. We are out of every basic grocery item possible. Fridays are just that way. Grocery day. Normally I just take the kids with me. But I don't have the energy to do that today. And I can't drive at night, so waiting until he gets home from work to go is not an option.

So not a typical day on the farm. But a beautiful day outside with sun shining. The windows open, saving us lots on our electric bill next month. One thing I DO like about this time of year. It requires no air conditioning and no heat. It's too beautiful to shut the house up. :)

Stuff

Today we saw the doctor for Eliza. She weights 13 lbs! And she is 25 inches long. She IS growing. I was almost in tears when she came back with her and said she was at 13 lbs. Every pound is precious for her and for this mama. She is at about a 4 months (the low end) development. She will be 7 months old on the 6th. She is finally grabbing things and sort of playing with them. It's good to see her do that too. Time will tell about her toes and foot. Right now though, I am thankful that she is gaining in pounds. Her big smile melts this mama's heart...makes the rest of life disappear, if only for a minute.

She still doesn't move. No rolling or anything. She will hold her head up for a few minutes. But that's it. Even on her tummy, she won't look up for long.

We skipped immunization shots today. I just don't feel good about doing them for her. Last time she was sooo sick for about 4 days. My gut just says no. And doctor really didn't argue about it either.

The big push was more about the flu shot and the H1N1 shot for everyone else. HHmmm...I haven't had a flu shot in my life. None of my kids have either. We don't do public school. We can stay home from church if need be. MOPS and Awana can also be avoided in the event of a mass outbreak. Nate says no way. So I'm off the hook. :) This winter does worry me though a little. She is missing some pretty important genes that have to do with the immune system and recovery. I will be very careful with her.

This blog has gone from a craft blog, to general life blog, to our journey through the maze of chromosome deletion. I don't get much of chance to knit or crochet or sew anymore. I miss my needles. They just collect dust. Someday I'll get to it again.

Blessed...Eliza's chair

Yesturday the furniture store calls to tell me that he has a delivery for us. A surprise. So he came today with this:

My comfy rocker was seriously broken and just worn out. It had been my Grandma's rocker. It was worn when we got it. And we completely wore it out. The handle came off in my hands one night, it rocked crooked, wouldn't recline, the cusion was split and it was smelly, among other things! The nice furniture guy took it away with him. I admit I wasn't the least bit sad to see them wrangle it out the back door. And left me this brand new one.

There was a note that made me cry. Unsigned.

Nate will be moving the couch to the livingroom and putting the chair and wooden rocker in here. I don't watch enough t.v. to leave it in there.

I had prayed about the $$ to buy a used one at a yard sale or second hand shop. I never found one and we just couldn't find the $$ to even if I had found one. So I left it with God the night I posted about it.

Now here we are. A brand new chair. I have never had brand new furniture! God new my great desire to sit and rock my tiny, genetically challenged baby. And he provided beyond what I asked for!!! Praise Him in the blessings! I love my Eliza. Now we can rock whenever we want to.

Thank you, Jesus. Thank you my friends.

Relief comes in phone calls...

When God wants to show you something, He does. WOW! We got moved up from November 2, to August 19 to go to Omaha! It's a weird emotion when you get a call to move up the list to the top. Happy to be moved up so quickly, but sad that we have to go there at all. It will be good to know where to go from here. What exactly we are looking at. I hope that is what we will be finding out. So we'll be off to the University next week to see the Genetecist.