It might be a CrAzY life...

Another big change

2012-01-25T20:07:00.001-06:00

Another big change is about to happen at our house. For the past 2 1/2 yrs, Eliza has been in the Early ACCESS program with the NWAEA. We made some wonderful friends! Her teachers, therapists, and nurse are some of the most wonderful ladies I've ever had the honor to meet. Many months, one or more ladies took turns coming atleast once a week. I will miss them so very much.
Eliza will be 3 very soon. I can not believe we have made it this far somedays. From the first days when I knew something was wrong, through all of the doctors, surgeries, diagnosis, travel to Omaha, hosptal stays, the NWAEA ladies were there. Not only making sure we got what we needed for Eliza, but support for me. Caring for any child is a challenge. But caring for a special baby (whom we didn't even think would make it) alone is even harder. My parents were wonderful too. The day to day life was just too much many days. I looked forward to the ladies visits very much. Not only were they adults, but moms. Someone to talk to besides my little children. I will miss them more than they know.
Babies grow and eventually turn 3. Preschool! She has wonderful teachers at her 'new' school. It's 1/2 an hour away though! That bothers me a little. OK... a lot. Especially being Iowa. Our winters generally aren't as friendly as this one has been. It's the closest special preschool around. And probably the best anyhow. She will learn and grow and have a ton of fun. The principle is a great one, her teacher is wonderful, and the paraeducators are all great too. Eliza has more help than I could ever give her at home if we had chosen to keep her home.
This whole transition to public school (for all of my kids) has been wonderful for them. They love it. So now with the middle 4 girls in school everyday, then Eliza a few days a week, it's just my oldest and my boy at home. In the fall, I will be the only one home. That's overwhelming. I haven't been home alone during the day in 13+ yrs. June 14, 1998 was my last day home alone. We had new babies, and homeschool everyday. And all of Eliza's stuff too.

1 evening project

2012-01-15T10:26:00.000-06:00

Our last MOPS meeting gave me inspiration. I've always done long scarves and then short scarves with a loop. Our speaker had made a mobius scarf. So I knitted one of those the other day. It turned out to be really long, so it's a double wrap mobius. The picture isn't the best but it works.

After searching for a pattern idea, I found a cowl that was pretty. That pretty quickly turned into this. Crochet is faster than knitting for me. And easier to decide how long or round to make an item.

I didn't have a pattern for either. I probably wouldn't do anther exactly the same anyway. I like one of a kind things. Someday I'll have a pretty coat to go with it. Maybe matching mittens if I ever get back into a mitten faze.

Last day of freedom...

2012-01-08T07:44:00.000-06:00

Today is our last day of freedom. But we have a long list of things that need to be done for tomorrow morning. The bus comes at 7:15! We are not early risers so it will be a challenge for sure. Today though we get bags ready, clothes folded and layed out, shoes shined up, showers and everything else. I'm tired just going through all of it in my head!

Last night, to get my mind off of the whole public school thing, I finished a hat for a friend. Little Miss Ivy will have a cute little hat for her head now. Even though the weather is beautiful for January in Iowa. But all babies need cute hats no matter the weather right? :)

The more things change...

2012-01-06T18:58:00.001-06:00

The Bon Jovi song won't leave my head. Atleast it's a good song. :)

Change happens quickly! MUCH quicker than I want it to. Instead of sending the kids in the fall, we are sending the 3 middle girls right now. They start on Monday! So the 3 girls and I went over to the schools today. We toured both schools, met every person we possibly could, and the girls got to meet their classmates. *sigh* The counselor is very sweet and helpful. And I met the kindergarten teachers for Garrit in the fall if we go that direction with him. She is absolutely wonderful. He will love love love her if he goes. But the girl's teachers for right now are all very up beat and nice. The girls are excited!

Their teachers are all very nice. Very helpful too. But I don't approach education like the rest of the world does. I'm not sending my kids to school because I don't want to have them at home anymore. I don't agree with the whole 'teacher knows best' mantra. It annoys me a little, but I'll get over it. My oldests kindergarten teacher had a major ego trip about being a teacher. That's one reason why I pulled her out to homeschool. I am not sending them to school because I want to. There comes a time in everyones lives when you have to make hard, big decisions because it's what's best. Even if it goes against everything you've ever believed. Everything you still believe. Having to compromise my beliefs about parenting isn't easy. I feel like I have completely failed my girls. And honesly, they kinda make me feel even more so. But if they aren't getting a proper education at home (for reasons that are NONE of their business), they need to find another source. And for us, right at this moment, it's in the public system.

So I'm not over reacting. I'm restling with a ton of feelings and emotions that I never thought I would have to. I know in my head that teachers kind of have to be that way. Otherwise they would have the parents of 20 kids telling them what to do. Truely I don't want to tell them what to do, but my girls don't have any idea what it's like in school. It's not something to take lightly.

On the plus side, public education isn't a permanent solution! I'm absolutely not affraid to never send them back if they don't enjoy it or teachers rub me the wrong way. We will get through this semester and reevaluate. (did I say this before here?)

And btw, school shopping in January isn't very easy. And it costs a LOT! It's sooo much cheaper to have your kids working at home.

The begining

2012-01-03T19:01:00.000-06:00

A couple of months ago, I needed a break from the Christmas gift work. So I made some quick, easy fruit, an egg and toast, and a pumpkin pie. The pie is crochet, the rest is knit. The kids love it! They play with it all in their little kitchen. And Eliza can play with it, eat it, throw it, drop it, and it doesn't hurt anyone! Eventually I will make more.

2012 is going to bring many changes. Hopefully some on the house too! But more internal. My oldest wants to go to public high school. HS was the point that I always said they would have the option of choosing their education path. Secretly hoping they would always choose home. But she chose to try, with the option of always returning to home education, public highschool. I think she just needs a break from home. The last few years have been hard. So we set up some boundries/rules and in the fall, she will begin her public school journey. We'll see how long it lasts. ;)
The other kids want to try out public school too. Katie wants to take just history and science at the Jr. High. Which is fine. She loves those subjects and I very greatly lack in those areas at home. The Jr. High is just a few miles up the road, so it won't be so bad. The other little ones, some will go and some will stay home.
When we first made the decision to go public, I had a very hard time with it. But it's never an all or nothing deal. Eliza will be in preschool too, but in another district. So we'll try and figure things out for full time and part time home, and the full time school. Yikes!
Best go watch the biggest looser! Tomorrow is my day 1 weight in! Yikes! Yikes again!!

Merry Christmas!

2011-12-30T16:47:00.000-06:00

Better late than never, right? Right. We've had a good holiday so far. Spread it out over 3 weekends. One family a weekend. Worked great! No stress of trying to get from one to the next or where to sleep. My favorite Christmas (even though I really do love them all!!) is in Nebraska. There's something about the big white house that's comforting. Having the family all there. I just don't ever want to leave there. It's weird without Grandma though.

2011 wasn't an easy year. But it's been that way for the last few years. We got to go out to Deadwood, SD for a wedding. Thanks to my in-laws. That was the highlight of the year! The Black Hills are the most beautiful things I've ever seen. Going over into the mountains out there made me not want to come back to our flat, boring land. The faces are pretty awesome too. And Bear Country was fun to drive through. In all of our pictures, I look like a big fat hot pink blob. Inadequate packing for myself plus spilling coffee on the only 2 shirts I took with me, meant I had to go to the gift shop at the Lodge. The only thing that fit were mens shirts or the hot pink shirt and jacket. I'm sure I embarassed the teenagers/young adults that were with us to no end. Perhaps I should have chosen a mens shirt instead. No one said 'hey you look stupid! go find something else to wear!!' before we left the Lodge. We had a blast reguardless. Next time, I will be packing 3 shirts per day for myself.

Looking forward to 2012 isn't something I really want to do. It's going to be a year of major changes. Life as we know it (and how I absolutely believe it should be) will be no more. I am absolutley not ready. Change will happend no matter how I feel.

It's hard to believe that 2011 is almost over. 1 more day! Merry Christmas a little late and Happy New Year!

Busy craziness!

2011-12-19T21:43:00.003-06:00

Life has been rather busy. I don't care much for busyness. But we roll with the punches. Being Christmas time makes everything busier. I broke my little toe 8 days ago. It is still ugly and hurts like nothing else. Right now Olivia is dealing with asthma junk and Eliza has been sick since the begining of the month. I wish I had started my Christmas projects long ago. Ooops!
In my spare (haha!) time, I have been working on hats. Lots of hats. Among other things.

The pink fluff hat... Now that I've fudged the pattern to make it work in the round, I have 3 more to make. Bigger sizes though. This one fits a newborn head. So it will go to another friend that will need a gift to give someone.

The dinosaur hat for my nephew...Hopefully it's not too big for his head!

Today though we had to be back in Omaha. Eliza's ear tubes are clear and better than they were a few days ago. She wanted to sit in the big chair. Until the doctor came in. Then she was done because it wasn't so much fun anymore. After Omaha, we stopped to visit my parents in Sioux City and came on home. I'm tired and worn out. My broken toe is causing major pain everywhere. I had to wear my tennis shoes today. Major pain in my foot all day long.

Christmas. It sure doesn't seem like it. There's not a speck of snow. The air temp was 55* yesturday. Are we still in Iowa?? Somedays I wonder. We spent a day with my family in Nebraska this past weekend. I love going there. Miss my Grandma though. It's still weird not having her there. No one to call me 'honey' anymore and no cocoa roll. We made it work with dinner and lots of love.

Another good thing: I am done shopping! Thanks to Amazon.com and the UPSman! Can't beat sitting my jammies, drinking my hot gingerbread coffee, while the kids are in bed, clicking away on amazon. I got over my dislike of amazon.com and we are friends now.

The house projects...ha. We need something major to get it done. When there is something good to say about it all, I will be sure to.

So that's all for tonight. I'm worn out and I've still got chores to do. Eliza's teacher/nurse are coming early in the morning and then her PT is coming in the afternoon. Between thier appointments here, we have more chores and schoolwork to get done. After she leaves, I have to take the 3 girls to town for ballet/dance classes and go to the grocery store.

Finally Friday...

2011-08-05T21:42:00.001-05:00

Today was actually Friday.

Up early to get 4 loads of laundry done.
Eliza's bath aide came to give her a bath.
5 children fussed and whined about their shoes and their shorts (because they couldn't find them). Turns out the shoes were by the oven where they always are. And shorts were in the baskets of not-put-away clothes. Just like I told them they would be.
Made little pizzas and left for the city. Grandma-Grandpa here we come!!
I only had to pull off the road 1 time. I don't put up with any nonsense in the suburban. Ever.
Teenager and I went to help my sister clean the office she cleans and watered plants at her in-laws. She's pregnant and due very soon.
I remembered I need to make the blanket for the baby! ah!
We left all of the kids with Grandma. She was still there when we got back. The kids didn't drive her nuts.
Made a run to Target. No list. Ooops. Oh well! Nothing we can't live without.
We loaded up and headed for home. Garrit made it about 10 minutes before falling asleep. Whew!
So now we're home ~~sweet~~ home. Someday it will be sweet and not a huge mess of moldy crap and stress.
I'm thinking about attempting to go back to running. Maybe not crazy running, but jogging for awhile. I can't carry this weight around anymore. And Jillian Michaels did more damage to my poor knee than running did.
Again...I can't upload any pictures. This time I'm on the laptop that has 0 picutres on it.
The new door still sits in the garage.
Tomorrow is Saturday. What to do...what to do...

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From yesterday...I forgot to post it, so in order to keep the days in order, I had to do it this way. :)

Thursday, August 4, 2011

I thought it was Friday. Turns out it's only thursday.

2 loads of laundry done early. Check.
Got Nate's work clothes through the wash too. check.
Left kids with teenager and/or Grandma. check.
Coffee with my very wonderful friend. check.
Thankful that I have 1 friend who will make coffee and let me bring kids to her house. A friend like her is rare.
Took some of the kids to the best Chiropractor. check.
The rest of the day...doesn't matter. Mainly because I'm not real sure what we really did besides watch the movie Rio and have tacos for dinner.

CrAzY sUmMeR

2011-08-03T21:20:00.000-05:00

It might bea crazy life....really, it IS a crazy life.
Today in our lives on the farm:

The replacement boxes of soap came mostly OK. Just 1 box was leaky all over.
crop dusters declared chemical warfare on us.
Because of the duster helecopter, I have some major allergic reactions going on.
Cloth diapers got washed. Whew!
7 loads of laundry is done!
Almost ran out of gas going into town to get BLT fixins and pick up camp pictures.
The 10 yr old left a washrag in the basement shower drain.
When 2 washing machines drained their water TWICE!, it flooded the basement. (We don't have a decent shower. We have a big open camp/mud shower in the big room in the basement. Not nice at all.)
I picked 3 tiny tomatoes, 3 purple beans, and several speckled bean pods that the kids ate right then and there.
The new door still sits in the garage in the box.
I covered the hole in the floor with a piece of dry wall.
I moved things into the unfinished part of the room. I can't stand the mess and crap anymore.
I bought coffee beans. Then fixed my coffee grinder after realizing that I bought beans instead of ground coffee. Since I buy my coffee from the little coffee shop in town, I forget that sometimes she has bags of just beans.
I tried to upload some pictures to make this post worth looking at. It crashed this computer.

What will tomorrow hold? I guess we'll see in the morning! One thing for sure and certain, I am going up the road to have coffee with one of my dearest friends. She just had a new baby too. I can't wait to hold such a precious tiny snuggle bug!

Bigger cloth diapers for bigger special needs kids

2011-05-04T17:03:00.000-05:00

Diapers for bigger kids are hard to come by. Or ateast they used to be. Eliza is too big for the regular cloth diapers. Cotton Babies carries things for bigger kids. Upto 40 lbs! I ordered some extra large sized fleece prefolds and large Bummis Super Whisper Wraps to try. I got 3 wraps to begin with since I wasn't sure how they'd work. I think 3 will probably be enough. I only ordered 5 of the prefolds though. I most certainy will need more to get through 1 day.
So far I love the Bummis Super Wraps! And the fleece prefolds are great. These will get us a long ways. Hopefully a few years! There is room to grow in both. Whew! I am so thankful someone finally has things for bigger kids that won't potty train. We'll cross another bridge when the time comes that she's too big for these. But not for a long time.

Farn's hat becomes a baby hat

2011-05-01T14:23:00.002-05:00

Awhile ago, I talked about Fern and her hat. After that, I watched a couple of old movies about early 1900's America. They had some wonderful cute hats! So I set out to make one of my own. Since it takes entirely too long to make a hat for my head, baby hats are easy. And I don't mind frogging a baby hat. I found this page with hats the same as in the movie. 1927ish style.

The flowers are held by clip, so we can change them as we want to. The ribbon can be changed too. Mix and match the flower and ribbon.

I haven't made her another one yet. Too busy getting some ready for the MOPS pampering day.

Today I got some adorably cute buttons today. I'll get some cute ribbon to match this week. That way if someone want buttons and bows, they can.

I don't know what to ask for these hats. I have made several sizes. They are just basic acrylic yarn. I also have some hats made from expensive yarn that look like little miss muffet hats. I'm hoping 5 people will be willing to pay enough for them!

Back to work! Nate is tearing out the floor underneith me right now. I best move before he rolls me up in the nasty carpet. :)

Spring into Easter

2011-05-01T09:35:00.000-05:00

Easter 2011. Dad took her out to hunt eggs with the rest of the kids. She didn't seem to care too much. So he set her on the grass in the crawl position. She just sat there. (She doesn't crawl yet.) After a few minutes she rolled over and played with the eggs.

I had to buy her a hat and glasses. She loves hats and glasses. The girls all have sunglasses and she tries to put them on.

It was finally nice enough to go out and play without a jacket! So we took Eliza out and Anna put her in the car. She absolutely loved it! Anna pushed her around on the cement and she giggled and waved at the other kids riding bikes around her. I tried to upload the video, but it won't do go.

We have a very busy week ahead. Olivia has her hernia looked at and schedule the surgery for that. Then Eliza has her third set of ear tubes put in and adnoids out. Not sure when I'll catch my breath this week. Maybe next week? Everything is dependant on Grandma staying alive too. She's in the hospital again. They're just keeping her comfortable.

New things

2011-04-02T17:51:00.000-05:00

A few weeks ago, one of Eliza's hearing teachers brought me the best gift. A sewing machine! Mine just plain wore out years and years ago. I missed being able to sew things. So I cleared the kitchen table and set to work!

I read somewhere (although I can't remember where!) about a pantsless summer. So I decided to do that! I wear skirts most of the time anyhow. I just needed a good excuse to buy material that was cute. My other skirts are torn or just yukky. Fine for home or in the garden, but not leaving the house. I've wanted to stop into the local fabric store and today I did! I paid WAY more than resonable prices at the local fabric store, but it beats Walmart! The yellow and plaid material I made into skirts. I also made another red skirt and a blue skirt out of material I already had. I have one more skirt to make, but I'm tired and don't want to think about how to put it together. I cut off my old jeans to use as the top. I'm tired of sewing today! Anyhow, this blue flowery circles material is for Eliza's changing table cover. We have to do the bathroom this summer sometime, so I am going to match the room colors to this material.

These bags are blouses I cut the fromnt and backs off of. They weren't really wearable, but I couldn't just throw them out. So I made 3 bags out of 2 shirts. We will get some ribbon for the handles tomorrow.

Katie got new glasses last week. She has no excuse now for her schoolwork. Her headaches are gone and she can enjoy reading her book after book after books again.

New roof!!!!!! The west side is done and they are working on the east side today. It's a pretty color in the sunshine.

Demolition

2011-03-14T20:34:00.002-05:00

We decided many many years ago to take out this wall and make one big room. The kids wanted to help so we found them each a hammer.

So now that the wall is gone, you can see from one side of the house to the other. Nate has moved the plastic to divide the house now instead of the kitchen. Sure is messy when you tear your house apart!

And the duck says...

2011-03-14T18:31:00.001-05:00

My wonderful friend made my kids animals awhile back. Jessica drags her duck everywhere we go. So my nephew loved it and didn't want to give it back to her. So I set to work to make him one too. I need to work on the beak. It's a little funky. But he doesn't care.

I got him all done and his parts sewn on and let him sit while I made dinner. But then it came to me when Garrit flew threw the room with his batman cape jammies on. A CAPE! Super Murry!

Super Duck makes Murry and his mama happy. I'm happy. Now my kids want me to make more animals to add to the collection. Then I added Murry's new baby-sybling-in-the-oven to the top of the "need one" list.

Nook and it's cover

2011-02-20T22:04:00.001-06:00

I bought a Nook reader. There are several ASL (sign language) learning books you can get for it. Not to mention a million other books and other things it does.

During the Daytona 500 race today, I got out some scrap yarn I had in my box and set to making a cover for the cover. It's more of a pouch really. I just used the potholder pattern and didn't finish it off at the top. I'm hoping it will convserve the costly cover we got for it.

My wrist is quite sore and it's getting late now. I started and finished it during the race. What will I make during next weeks race?

Neurologist day

2011-02-17T16:32:00.002-06:00

Today was our follow up with the neurologist.

A little about me...in no particular order...

2011-02-16T23:06:00.001-06:00

.........

Grandma's crochet and Fern's hat

2011-02-13T17:34:00.002-06:00

My Great Grandma. She passed away many years ago. I was just a little girl. But I remember the day like it was yesterday. I remember how the house smelled and how she looked. Her hair was a beautiful silver color. I liked being out at their house. I get my love of a few things from her and Grandpa. Tulips, birds, deer and salt blocks, those peanut butter cookies shaped like nuts....just to name a few.

She used to crochet. Though, I don't remember seeing her do that much in the later years as much as when I was really young. But being sick makes it hard to do things. I have an afghan she made for me. It's one of my most favorite things.

She crocheted lots and lots of things. My mother has several of them. Pot holders, afghans, and pretty things.

She lent this to me so I could make some. The only pattern is by sight. Which is perfect since I'd rather do it that way.

I had some crochet cotton and a tiny little hook in my box.

So started counting and following along with Grandma. Remembering my childhood at their house in the country. We spent a lot of time there. She loved birds. Canaries? if I remember right. They were red anyhow. She had lots of them in one form or another around the house.

As I'm counting and trying to make this same flower she made, I noticed that she wasn't a particularly perfect crocheter. There are mistakes that only someone who did crochet would see. I kind of like that she wasn't perfect in her work. She did it because she enjoyed it I imagine. Not to be perfect at it. No fuss. Just fun.

And so far, after a couple hours of counting and working, I have a flower. I made the center too big. So my next one will have a smaller center. SC not DC.

To crochet because you enjoy it, is wonderful. (Lately I've been occupied with trying to make things to maybe sell.)

I will finish copying her work and make several of my own. They will hang on the wall just like they did at her house.

I learned to crochet from a wonderful 4-H leader. She was like a Grandma to us too. Although I wish I had been old enough to have learned from my Grandma. No matter how I learned to crochet, it's a love that we share even though she's been home in Heaven for so long.

I'm at a stand still right now. I can make lots of flowers in pink and blue, but I don't have any green or other colors for leaves and the border. I have to crochet and knit in short time spots because of my arm right now, so it's OK. I have time to enjoy making these pretty wall doilies. Maybe I'll make some as gifts. I love to give away what I make too.

Updates to come....(once I get an order for the UPS man to drop off!)

On an entirely different subject....

This is my Grandma's baby sister (I think she was the baby of the family anyhow). I wish these hats would make a return. She looks so perfectly beautiful. If she had lived past giving birth to her first child, I imagine she was as beautiful as Grandma was. Silver hair and all.

Life as we know it

2011-02-08T14:02:00.000-06:00

Bedtime on Eliza's birthday. We were all still sick with strep, so everyone was tired early. The kids love to sit in this chair with Eliza.

Time for lunch! She's to the point that she can feed herself things like peas, beans, carrots, raisins and such if they're very soft. No spoon for fork needed. Just fingers.

This is what they do when dad's home. I don't know what game they're playing, but they were sure focused on it.

Being stuck at home with sick people (and sick myslef) I decided to knit some more. I had crocheted a bunch of dishclothes and a towel for myself recently. But then I thought I'd get started on some hair things. I have since finished this one. And started two smaller ones for children's hair. I'm thinking about getting enough done to sell at our MOPS group in May. I don't know though. I'm not sure I want to have my own table for just a few things. It's kinda painful on my wrist to knit constantly. But I can deal with that. I'm also not sure anyone would pay enough for them. They'd probably be close to $10 a piece. By the time you buy the yarn and spend a couple of hours a day doing them..... I don't know. It's only February. I have a few months to decide and if I do to find someone to let me have a tiny spot on their table.

Sentimental mama

2011-02-08T09:54:00.000-06:00

A couple of weeks ago, we put the baby bottles away. Eliza finally figured out how to drink from a sippy cup with a squishy top. Putting the bottles away this time was hard for me. She spent almost 2 yrs with bottles because she couldn't drink from a sippy. Putting bottles away means she's getting bigger. Learning and making progress. Those are good things. Just a little hard for the mama to be past the baby stage. It wasn't ever really hard for me with the other kids. I was pregnant with the next one everytime so I knew they'd use them eventually if I needed a break from nursing them.
Truth be told, I did keep one bottle out. It's in the back of the cabinet. And it will probably stay there. Silly? Probably. The rest are nicely packed away in the closet.
Why is it so hard for the mama to do things like this? They're just bottles! She really would have been past the bottle stage a year ago. But her being so special, she got to use them for 2 yrs. I didn't ever mind washing them.
Well anyways, she's progressed to the sippy now. I'm happy for her progress. I will move on. There's just not a tiny baby in the house anymore.
I need to get busy trying to find glass sippy cups. I really am not a fan of plastic. Glass is much safer! For everything. We only had 3 or 4 bottle break in those 2 yrs. So I'm going to find glass sippy cups if it's the last thing I do. :)
But first, the laundry is calling my name. I best get to it.

Happy birthday, Lizzy Lou!

2011-02-06T11:28:00.004-06:00

2 yrs ago, my 6th little girl was born. She was sooo tiny with a huge bump on her head and tag on her ear. The last 2 yrs have been a journey with her. Figuring out how to best care for a special needs baby. So today she turns 2. It's a miracle she even made it to birth and now she's 2! My little ladybug.

Eliza the day she was born. 2/6/09

One her 1st birthday. 2/6/10

And today at 2 yrs old. 2/6/11!!! In her birthday dress. My tiny Valentine with one of her big sisters, Olivia, who had to match Eliza's dress for the picture.

She has made great progress from where we began. She has a long ways to go, but everyday we get with her is the best.

Fun fact: Eliza is the ONLY person in our family that has a BIG brother.

A new year! 2011

2011-02-05T14:35:00.000-06:00

As we leave 2010 behind and look forward to 2011, I do so with a different outlook. Much of 2010 was spent in Omaha for one Eliza thing or another. That won't change much in 2011, but this year will be more follow up than discovery.

So...now that January is over and we look to the rest of the year, we will be figuring out what we can do to help Eliza with her muscles. They are very tight and spasm a lot. We found out that they don't think it's seizure related. Awesome news! We will discuss what to do next and the results of her abnormal MRI this month with the nuerologist. Then all we have left to do is follow up appointments to make sure her eyes are staying perfectly straight and her ears don't give her more trouble with the tubes. We'll keep learning and teaching her sign language. And introducing new foods and trying to get her to eat more on her own. If she gets to the point that she's ready to crawl, we'll cross that bridge too.

She FINALLY got her wheelchair at Christmas time. We waited for almost 6 months. She loves it. And so do I. She slid out of it once, so I crocheted a little extra belt. It works for now. She loves being able to sit straight and up with the rest of us. This will make everything 100000% easier this summer being out at the parks and traveling.

Back in November, we had a big Thanksgiving dinner at Grandma's nursing home. She's telling Garrit all about the little snowmen with her children's names on them. He just thought they were cute. He chatted for quite awhile with Grandma.

We had a big "storm" in January. Cabin fever set in so everyone went outside. Katie and Anna stayed out the longest. In new snowpants, gloves and boots, they stayed pretty warm! I stayed warm inside however. No snow angel making for the mama.

We have avoided all of the yuckies going around. That is...until Wednesday. Strep hit us hard. 7 out of 9 of us. I'm ready for summer. Sun and fun. Going to Utah! Maybe we'll just pack up and stay there. ;)

Frustration and more questions...

2010-12-13T17:00:00.000-06:00

Eliza. Lou Lou. Lizzy. Ladybug. Blue eyes. Baby girl. The nicknames for a precious little girl. We recently had an EEG and brain MRI done at Children's in Omaha. The short EEG came back normal. But the MRI had an abnormality. The nuerologist is supposed to call and talk to me about that. He doesn't think it's siezure related, but a movement disorder. We will go back for the 24 hour EEG in January. That will be a fun time with her stuck in a bed with wires coming out of every part of her head possible. She did great for the short one. So maybe she'll do OK for this one too. The endocrynologist's thyroid tests came back normal so we don't have to deal with that.

I've been doing some researching online about disorders and where she fits in. I've come across something in her genetics report that helps alot. It could possibly be the fourth class of Angelman's syndrome. But that isn't comfimed by a doctor yet. Just thinking. If we can find somewhere that she fits in, we can help her better. Find other families and maybe some support. It's lonely outside of the normal world.

We are not alone. I know that there are indeed others out there. Others that have gone before us through this whole medical journey. Blazing trails for the next of us coming along. But it's lonely. We don't live in an area that has support groups. Or really even many kids with disabilities. Mostly it's autism or DS. But we don't have those problems, so we don't fit in there. Out here, we are alone. For as much as I love the country and small town life, I'd really like to move closer to the big city. More resources, support groups, similar families with sick kids.

Belle was doing her schoolwork and Lizzy was wanting to help her. Such smart girls I have! She sure had fun beating on the keyboard making the program beep.

The love of a big brother is priceless. He protects her like no other. She's the only one in this family with a big brother.

On the road again

2010-11-11T13:33:00.000-06:00

Recently we took Eliza back to Omaha to the eye doctor. Dr. Troia is an excellent doctor if anyone needs a pediatric eye doctor/surgeon. Her eyes have stayed perfectly straight and her sight is nuetral for now. She will need glasses eventually. A few years down the road. So we'll go to back to this doctor in 6 months again.

Next week we will make another trip to Omaha. To the neurologist this time. We haven't been to this kind of doctor yet. But with the siezures and a few other issues, it's time. I dislike the initial appointment. I feel like I'm repeating everything a thousand times because we see sooo many doctors. I filled out a new set of papers that pertain to the brain and developement. Not an easy thing to fill out.
Whenever I fill papers out for one doctor or another, it brings back some initial feelings. So I got the best book I've read so far out again. "A Different Dream for My Child" by Jolene Philo. I am so thankful a friend sent it to me when we first started our medical journey with Eliza. It has brought much comfort to me. Even reading just one or two stories sometimes will remind me that others have walked this road and made it. I always take it with me to Omaha.

Traveling with her is still like traveling with a new baby. Remembering to take water (she has issues with other water than our own), goat milk, bottles, bottle warmer, diapers, wipes, baby food, her bear and blankets, etc. She has as much stuff as all the other kids put together. If her wheelchair will ever get here, that will take the place of the little stroller. I think she will be much happier too.

She has a plugged ear tube right now. It takes forever sometimes to hear back from the doctors. Especially when they're 3 hours away. We can't just run into the office to have a looksee. For now we'll do drops. And go back to Omaha 2 days after we've just been there. The Omaha doctors are absolutely wonderful, although frustrating to get in to see sometimes. But they're great about talking things out over the phone.

Fever, fever go away!

2010-10-26T23:40:00.000-05:00

Eliza has had quite a time of it lately. 103-105 temps for days on end. Then she was fine for a week. Now she's back with a fever again. 100-102 degrees. I'm not sure what to do with her. All tests were negative last time. Teeth? I'm not sure. The rest of her teeth didn't cause such high fevers. She likes her stander. She'll stand in it and play with the kids or eat her crackers for 1/2 an hour sometimes! I'm not sure if it's helping at all, but I'm sure it takes time. The stander is just on loan. Good thing since our house is out of space!

She has had a couple of seizures this year. Which is taking us back to Omaha to another doctore. A neurologist this time. Maybe something. Maybe nothing. Once with a fever. Once without a fever. I think she likes to keep me on my toes.

Olivia went to the dentist last week. She had a pretty deep cavity so they numbed her up realllllly good. 3 shots! Yikes! So she was trying her darndest to smile and say it didn't hurt. She wanted to eat something. I don't remember what now though. I couldn't resist a picture.

I got a jump on my Christmas knitting. HA! This one is for my friend's little girl. This picture stinks. It's really bright pink, purple, blue and green. The flower is sewn on and I attempted to stitch an E for her first name. I might retry the E. With my girls insistance, I added some fringe too. It's pretty long. More than 3 foot I'm sure. Although I don't have a tape measure anymore. My kids used it as reigns last winter when they were playing reindeer on a sleigh. In anycase, I hope she loves it. Her little brother will have one as well. Just haven't started on it yet. It will be a very cool stripe pattern! One of my most favorite yarns. I have lots of yarn. I love yarn.

Grandmas and life

2010-09-28T20:51:00.003-05:00

The big white house. Grandma and Grandpa's house. Whenever we turned the corner and saw the house, I kind of felt like I was home. So big and full of love. Lots of room to run back and forth on the porch. Old foot style bathtubs. The same wallpaper remains in the kitchen that was there before I was born. But I love it. I want to live there. I told Grandma that once. She just smiled and said "Oh this old house has it's problems." and patted my hand.

September 17 is a day that will long live in my mind. The day that my Grandma Baker died. Quite the lady she was. My whole 33 yrs of life, she never once forgot my birthday, Christmas, Easter, or any other important date. When we were little, I remember her reading the Gingerbread Man and an old ABC book. Those books are still there. All tattered and torn and taped together. But Grandma is not. She always called me honey. Grandma used to pick us up and take us to the mall to meet Steve (biological dad) and Aunt Karen. Her house always smelled so wonderful at Christmas time. Everyone looked forward to Grandma's cocoa rolls. Diets aside, we ate her cocoa roll. The best desert I've ever had. I tried to make them. It just fell apart. And so did I. I wish I could make them like she did. How will we make it through another Christmas in Pender without her? I'm not sure. It will be so very hard. No one will ever wash and dry dishes to perfection like she did. Or iron her table cloth just special. I miss her.

Her passing brought us all together again. We hadn't all been back at the same time for a lot of years. It would have made Grandma so very happy to have us all under their roof again. We watched a beautiful video of pictures of her life. We laughed and cried. We made coffee (even though Uncle Dave forgot to put the water in it) in Grandma's percolator.

Eliza just rolled around between the rooms. She loved the hardwood floor. The rest of the kids just ran around her.

The other kids had fun with the snake Susie caught in the yard.I had NO idea that Garrit would be so fascinated with it. He doesn't even like flies or ladybugs! But my goodness he was out there touching it's tail!

Sometimes when family gets together in a small town, and two of the cousins have the same sunglasses, it can be rather hillarious. There had been some confusion at the little gas station about a girl with white glasses. You'll have to ask one of them about it, but it was sure funny. Some guy thought a girl with white glasses was pretty good looking. So my sister took the credit for it. But it wasn't her. Guess you had to be there. So we took a picture of the girls with the white sunglasses to remember the occassion. And Adam had to get in on the silliness. That's just Adam. :)

Those two days were the hardest and yet good. Before we left for home, we had all of the Great Grandkids pose for a picture. Three of them are missing. One stayed home in Florida, another had already gone home and baby Micah was sleeping.

And then the Grandkids. Tim is missing though. Me in the green/stipe shirt, Susie, Adam and Tony in back. Michelle and my sister Steph in front.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

While my sister was here for the funeral, we went to see our Grandma Davis.

She's still hanging on. She's been giving us her "Grandma wisdoms" lately. For the last few years she's been in and out of the hospital almost constantly. Close to death, but fights back. Now she's in the nursing home so we go visit her there.

We talked about growing up, we'd spend the night at her house. She would ALWAYS make Mickey Mouse pancakes. Complete with perfect ears and chocolate chip eyes. We made sugar cookies and had iced tea. She had two of the most awesome peddle cars ever. We rode them up and down her long driveway. We bounced on the kiddie bouncy horse on the porch. She got her good china for holidays and we crowded around her big old dinning table. We got girly gifts like camisoles and underware for Christmas gifts. It's hard to get a call that Grandma is gone, but it's equally as hard to watch them go through so much pain and die slowly. We will go up and see her next week again.

A weekend of parks

2010-09-16T13:33:00.000-05:00

Last weekend the kids and I went to the parks in town. Two days we spent almost the entire day just having fun. We never have the money to go on vacation, so we just have fun where we live. We took crackers and cheese and had lunch there too. No stress. No crowds of rude people. It's FREE. Excellent excersize!

They all spent time wading in the lake. Where they found frogs and snails. I sat on the rocks with Eliza and watched them have fun. There were lots of little dragon flies to watch too.

We hiked around the lake on the trail both days. Isabelle and Garrit found big sticks to beat off anything that would jump out at us. HAHA! Then they used them as canes when they got tired. :)

Eliza did great. She had a good time watching the kids play. She clapped a LOT those days and giggled like crazy. She took a great nap in the stroller even! We were all worn out.

Anna even let me take a good picture of her since apparently the rest are all "gross" pictures. I don't wait for people to smooth out hair or make clothing look nice. I just snap the pictures. So I waited...and waited...OK...really she only took a few seconds...for her to be ready. She had previously fallen in the lake. So her pants were soaked and sandy.

During both days of digging around in the rocks at the lake, the girls collected frogs and snails. They ended up catching 5 frogs and 5 snails. Or atleast that's all I let them put in the container to bring home. I'm so mean that I made them throw the rest back into their proper habitat.

The frogs. Are still just 5 frogs. But the same can not be said for....

The snails. They have gone from 5 to 14. It's only taken 5 days for them to multiply like crazy. I wonder how many we will have by next weekend?

Dentists

2010-08-18T19:13:00.000-05:00

Our regular dentist had to move. So I had to find another. I called around and found it hard to get in anywhere, anytime soon. But then I called around another town and found one. Jessica needed a cleaning and she does have a couple of cavitites. No surprise though, since her complaining was what prompted the visit.

It was a crazy morning though! Trying to get to the appointment was something in and of itself. I ran over to get the girls cousin, who was babysitting with Anna. They just love Megan (like they did Emily!). She was ready when I got there and I thought to myself that it was going to be a good day. I should never think that in advance. As I turn to come back down our gravel, someone else did too. ACK! It was a nurse from the respite agency. I wish I knew she was coming, because I would have had her come another time. So I woke a very sleeping little baby girl. I tried not to be annoyed as all get out. Now we've left late to begin with. I forgot to fill out some paperwork, so did that at a stop sign. Then we got behind someone who must have had nowhere to be. 40mph and weaving all over the road just doesn't cut it on the highway where 55mph is the legal speed. As I was finally able to go around this weaving, 40mph maniach, I'm pretty sure they were texting. Briefly I thought about calling the highway patrol, but I didn't. We finally made it to town and drove down the street, not seeing where the dental place was. After calling them, again, I found it. 15 minutes late, but better late than never right? They said they didn't mind and cheerfully took Jessica back to the chair and got her teeth all shiny and clean. Now that I know where they are located we can go back to have the cavities filled. I almost fell asleep waiting for her to be done. Seriously. Isabelle had come along and told me to wake up!

Now I become the mean mom who brushes her kids teeth for them. I thought she was going on it her own (and I thought the same about the rest of them!) when I sent them to the bathroom for teeth brushing time every night. I'm sure if she wasn't, the rest weren't either. They will have their shot at brushing and then I will. ahahahahaha.

Tomorrow should be a much better (or maybe easier...slower) day. Eliza's team comes in the afternoon. Those, my dear friends, are good days no matter what else happens.

2010-08-16T18:14:00.000-05:00

If it's not one child, it's another.

Olivia is having breathing trouble again. She had pnuemonia back in April. And now we've been fighting similar symptoms since then. We were back at the docs today because it was worse than I felt comfortable handling and we needed more meds anyhow. If they would ask me, I would absolutely, without a doubt blame her lung problems on the mold in the house. But when you're stuck, you're stuck. Sometimes you know the right thing to do, doesn't mean you can do it.

We have so much going on right now. Between Eliza's doctor appointments in Omaha, mine in Sioux Falls, Olivia's in town here, chiropractor, respite care aides that come to help with Eliza's bathing, her regular team that comes and now school on the verge of starting........

We live today. That's the only way to get through a day at my house. Just today. Tomorrow will come tomorrow. I do have some respite care (friends) lined up to watch Eliza for me one day a week. Because she doesn't sit, it's hard to take her grocery shopping every week. But now it won't be so difficult.

MOPS is just around the corner. One good thing that comes with going back to school time. Some (rather most) I haven't seen all summer. It takes me sooo long to be comfortable in a group. Years really. This year, I am excited about seeing who's at my table. I am not so isolated from them anymore. With Nate working regular days, I can go to dinner or something. :) I am looking forward to things this year. Esp the moms dinners. I hope we have more. I wish I could invite them to my house. I love to cook and have people over. Never again though as long as we live in this house. I'm so thankful that I am part of the MOPS group here. They're all so wonderful. Not just to us, but to anyone who needs help, time or just a friend. No one judges anyone. No one is better than anyone else because everyone struggles with finances and kids. Some aren't afraid of us because I have 7 kids. We actually get invited to things! So I am truely looking forward to MOPS this year.

Time to finish the tacos. I'm exhausted. Maybe tomorrow will give me a look into why. Besides having 7 kids and 1 special needs girl. That shouldn't make me feel like this. Ok...for real...the tacos are calling. Well, the kids are calling for the tacos. Apparently they're staaaaaaaaaaaaaaarving.

When family all comes home...

2010-08-10T10:30:00.000-05:00

When family all comes home, we have a party! My sister/brother-in-law/nephew flew back from Florida and my other sisters came from Minnesota and South Dakota. And my brother drove up the street from his house. My dad went to get Grandma from the nursing home up the road and the rest of the family desended on my parents house. We brought out little kiddie pool and had a birthday party, complete with a pink poodle cake made by my mom for Isabelle.

All of my syblings and Grandma. She had a great time sitting out back. She can't see or hear much anymore, but she knew we were all there. The weather was pretty decent that day so she was able to sit out and enjoy the afternoon with all of us and my uncles/aunts/cousins.We rounded up all of the great grandkids for a picture with Great Grandma. She has 16 great grandchildren! And she loves everyone of them. She's a blessed grandma.

The night before the big party with Grandma, we left all of the grandkids with my mom and dad. All of us syblings went out as ourselves. Not as mom and dad. It was lots of fun!! We haven't been out together, ever I don't think. Mom and dad survived the night with all of the grandkids.

Can you hear me now? (again)

2010-08-10T09:54:00.002-05:00

Yesterday we took Eliza back to Children's Hospital in Omaha. She had problems with one ear tube, so he drained the ear and put a new tube in. Hopefully this will stay clear now and we won't have to do it again. Dr. Quinlan @ ENT Specialists in Omaha is a great doctor. We are waiting for doctors in this first picture. At first we thought maybe we couldn't do surgery because of her thyroid levels. After some discussion amongst the doctors, we went ahead.

Before we went, I had her thyroid level checked. Thinking it was high. It is. But not by a whole lot. She was OK for surgery and they monitored her longer. They have the best staff there. I think they take excellent care of every child that comes through the CARES unit. :) We will see an Endocrynologist for her in the near future.

After he was done, the audiologist did some hearing testing. ABR= Auditory Brainstem Response test. For the most part it says she hears ok, but some things take longer to register in her brain. So now we go back to Omaha in a couple weeks to do the booth hearing testing again. She has more control now of her head and upperbody, so the audiologist is hoping that she will be more cooperative this time so we can figure out what's going on. No hearing aides at this point.

She was sleepy and a little fussy after surgery. Which is completely normal. She slept for a little while longer and then we tried to get her to drink some juice. She's not a juice kinda girl. So we gave her a cracker to try and make her thirsty. That worked like a charm. She LOVES her crackers and that did in fact make her thirsty. She drank 1/2 of the bottle of juice/water. They let us go about 2pm I think. Pretty good timing I think. We got into surgery an hour early so we were out earlier than we expected too.

In my non-educated-medical-opinion, if we can keep her ears clear of mucous and the tubes in place, she will be fine. I still worry some about the fact that it takes longer for sound to get from her ears to her brain to process it, but we are working on sign language and talking slowly and clearly to her. The kids aren't allowed to just get something if she grunts for it. Some people immediately blame her lack of talking on that. But that is not allowed. We don't let her get frustrated by anymeans, but we try to get her to communicate with more than grunting. She is learning some signs. And that is great! She can only learn what I have learned obviously, so that makes me want to push to learn more signs. Even if she does eventually talk, knowing sign language is a wonderful way of communication! If we are patient and understand that it may take her longer to process things (or maybe she'll be just fine!) will all be fine.

This tiny girl has taught me something about patience.

The drive home from my parents house was fun. HA. The suburban was overheating. Something about a censor sticking. I'm not mechanical. We just took our time, stopped along the way so Nate could add water and check things out and let it cool down a bit. Cooling down is not easy when it's 97* out! But we made it home eventually. Put medicated drops in her ears (which she absolutely does NOT like! And will make the next 4 days of drops 3 times a day misserable for her.) Turned on the a/c and went to bed.

Changes...again...

2010-07-26T14:13:00.002-05:00

Someday I will choose a look for the blog that I like and leave it that way. :) Changed the look and title this time.

It might be a crazy life...

2010-07-26T13:28:00.001-05:00

but it's our life. That's probably my favorite thing from a certain show. Things are definately crazy at our house. Doesn't matter the time of year or day of the week.

It has gotten a little more crazy now that we have added respite care to Eliza's schedual. Services that I always thought were for elderly people. It's hard to think of those services that my grandparents had as something my baby uses/needs. But she does. While waiting for the waiver spot to open up next year and because of her insurance, we can use respite care services. It is hard for me to get down at bath level to give her a bath. So she would get one good bathtub bath a week. Otherwise she got spunge baths on the counter. My knee just won't let me get down on the floor anymore. If I do, sometimes I can not get up. My back also makes it hard to pick her up and twist around to bathe her. She LOVES water. Bathtime or swimming at the pool, she loves it. She will get to take a real bath 3 days a week now with their help and then her regular Saturday bathtub bath too. So 4 days. It's kind of weird, but to know she's getting her baths and is happier, it's good. Our bathroom is beyond awful, so I feel bad for the ladies coming.

Last week, I took Eliza back to Omaha. Her regular ENT frustrated me to the point that I won't go back there. So with the help of one of her audiologists (who are both wonderful!!) we found one in Omaha. ENT Specialists is our new doc for ears. It means more trips to Omaha and to Children's Hospital, but I don't mind so much now that we found Whole Foods Market and The Rainbow House there. I am absolutely convinced that there is no better hospital for Children around here. When I grow up and my children are on their own, I want to work as a Child (maybe it's family?) Life services there. They are volunteers that come around to provide a break for the parents. They'll sit with your child in the room so you can go get lunch downstairs, take a shower, just get OUT of your room to walk for awhile. The ones that came while we were there last year were so very nice and helpful. It was a nice break from the t.v. or my book to have another person to talk to and to not worry about Eliza so I could get some food. That's what I want to do. If not at Children's in Omaha, anywhere will do. And volunteer for a home like the Carolyn Scott Rainbow House or even the Ronald McDonald house. Maybe a service that provides home services like cleaning, doing dishes, and such to help give them a break and/or spend more time with their child and not have to worry about the cost of it because it's a service born out of love. No expensive degree required. Just love and time. There will always be children born with handicaps, chromosome disorders, cancer. Families will always need support in those circumstances.

This is an extra crazy week for us with the oldest 3 gone on RAGBRAI. They ride with Grandpa on the triple bike. Anna and Katie are riding the bike and Isabelle is in the van with Grandma as the extra incase someone gets tired and needs a break. She can get on for a little while. So I'm trying to keep up with their chores, my chores, 4 kids under 6 yrs old, new services for Eliza and her regular team coming. My sister/brotherinlaw/nephew are coming home this weekend. The wedding was canceled, but everyone is still coming home. It will be an exciting weekend after a crazy week.

Lizzy and Garrit like to sit at this little table and play. She sits either in the Bumbo seat or on the other side on the floor. They play for a long this way. She is a blessed little girl to have such a wonderful big brother. He loves her to pieces.

When he plays games on the computer, he sings to her.

Olivia has to get in on the fun too. She is soo good with her. She calls her Wizzy. Someday she'll be able to pronounce the L sound and call her Lizzy, but for now it's too cute.

2010-07-08T16:21:00.000-05:00

We're making progress. We were having a snack of those little Gerber quick melt fruit pieces. After many tries, she got one in her hand and got it into her mouth. All by herself!! She got 3 out of 6 without any help from me!! YAYAYAYAY!! She's doing wonderful with her mum-mum crackers too. I am soo excited for her!! She's also getting stronger. Her sitting is getting better, but still needs to be supported. She's rolling more too. On purpose so she can get a certain toy she wants.

When I grow up

2010-06-25T15:52:00.001-05:00

When I was in Kindergarten, we were asked to write what our favorite food was and what we wanted to be when we grew up. In 1982 my favorite food was mac and cheese and I wanted to be a mom.
In 2010, the same still holds true. I still love mac and cheese, even though I've grown past the box mix and make my own and I still want to be a mom. But back in 1982, I hadn't a clue that I would have 7 kids.
Recently, I've been watching old episodes online of one of the popular shows that is about a big family with two sets of multiples. I'm sure you've heard of them. The other night we were watching one episode of the show with 8 kids. I looked at my girls and said "When I grow up, I want to have as many kids as Kate." They thought it was funny. We're only 1 less, but I had mine 1 at a time.
The picture I've always had in my head of mamas with lots of kids is the long hair, comfy clothing, frumpy look. And that WAS me. I do like my hair longer but it was time for a change. I got a free hair cut awhile back since she cut 11 inches for Locks Of Love and it was still past my shoulders! I've done everything for my kids for 12 years. I saved up and when Nate sold some car thing, I went and got new glasses. My others were 10 yrs old!! And my mom made it so I could get my hair all pretty. :)
I still like comfy clothes if we're not going somewhere, but I've had enough with the whole tired, worn out, mama of 7 look. When others can look at you and know that you're a worn out mama, that look is so busted.

2010-06-23T09:10:00.002-05:00

My Lizzy. It's hard to look back at last summer. A year ago, I took her by myself to Omaha's Children's Hosptal. I took the wrong exit, got turned back around and finally found the Rainbow House where we would stay. The next morning I checked her into the hospital for 2 days. She was so tiny and fragile. Not even 10 lbs then. They did many many tests to check lots of things. She passed them all ok except for the genetics test.

So now, a year later, she's getting bigger. 21 lbs at 16 months old. She's still eating the mushy baby food and mum-mum baby crackers that melt in your mouth. She still has bottles, but we've attempted the sippy cup. She's finally rolling really well. If she has support, she will sit and play in the excersaucer or high chair. We borrowed a wheelchair from her PT and she loves it! She can sit up at the same level as the rest of us. I think she feels more part of what's going on. She still talks in baby babble. But she signs a couple of words. Milk and mama. We keep signing the few other words we know to her.

I would love to get the full signing time set, but we don't have that kind of money. Maybe someone out there does??

We had a picnic on Mother's Day with Great Grandma. So we got a picture of them in their chairs together. Grandma thought that was the best. I'm glad I have her for a Grandma. She's always been a wonderful Grandma. Hopefully we'll get another chair picture soon!

Grandma Davis made Eliza a book. Lots of different textures and pictures. She even cut animals out of an old toy destined for the trash and made them into pages for the book! The material she used was mostly left over from dresses and aprons she made the girls for Christmas and Easter. One page is a mirror. Which she just loves!

The first week of June we had VBS at our church. It was a fun week! But Eliza popped up a weird rash on Wednesday that week. I thought it was an allergic reaction to something someone was wearing (perfume, detergent, etc.) so I decided not to take her in to the doctor. Well, it never went away. Fast forward a week and a half. The rash is still there and worse. Now on Friday she starts running a fever. All weekend the fever jumped around and she didn't eat or drink hardly anything. Didn't move much at all. So by Tuesday she was still really sick and I took her in to the doctor. Strep throat! Makes me wonder if she's had it since VBS. There wasn't a fever though until a few days ago. In any case, she's on meds now. She is still miserable today. Poor baby.

We went Anna off to camp on Sunday. I'm sure she's having a blast. Her cousin and a couple of friends went too. Horse camp sounds like loads of fun. We'll see on Friday night if she wants to go back or not. Although next year, she would be going alone since her friends are all a year ahead of her. This is her first year of Jr. High camp. They just grow up too fast.

The game of life

2010-05-27T10:39:00.001-05:00

I don't win contests. I've won 1 thing that I can remember in my life. A little decoration that was cheesy. BUT today I won a contest!! I can't hardly believe it. Dealwisemommy.com rocks! I won that contest out of 500+ people! How does that happen? I ordered one for a gift last week so now I get to keep one too! How fun! The wipes case is super cute. I chose the circles pattern again. I think it's in the first picture on the post there.

We went to the park yesterday. I think we'll make Wednesdays our big park day and my longest walk/jog day. Lizzie had a great time in the stroller. I pushed her around while I walked/jogged the basket ball court. If we stopped we got swarmed by gnats! She LOVED swinging while I stretched my leg a little. We'll have to get her out in our kiddie swing everyday now.

Garrit needed a bike. So we got a Lightening McQueen bike for him. He likes riding with his sisters. Unless he rides over an ant hill. Then he freaks out.

Olivia, the birthday girl this month, got a new bike too. It's fun to be 5. When daddy runs your bike over, you get a new one for your birthday. Sure makes it easy for the mama too. No decisions to make about what they want for their birthday present!

The baby and me. She's 15 months, but she's the baby. She is doing some good things. She realllllly likes the wheelchair we are borrowing from AEA. And I don't have to worry about her flipping herself forward out of it! Whew! We'll take it to the city with us and set Great-Grandma and her side by side in their wheelchairs this weekend. She's got Grandma's middle name, so that makes her even more special to Grandma.

My little house has been over run by VBS crafts! The piano is no longer a piano. The counter can't be seen anymore. The table has become the work station instead of a place to eat and do homework. Being the craft director is fun, but I wish I had room to live around the stuff! There is a lot of pre-prep work to do this year. It's worth every bit!!

I started walk/jogging again. This time to run a 5K or two or three. I've wanted to run the Joan Wilson Memorial 5K the last couple of years, but I couldn't. The spot on my leg is nothing to worry about, I'm not pregnant and with my chiropractor and message therapist's help, I'm going to do it. It's not until April 2011, but my baby sister and I are going to do some others this summer. Training, VBS work, still doing schoolwork, growing my tomatoes and stuff in conatiners this year, and dealing with everything else is going to prove to be a busy summer. I hope it doesn't go by too fast. I detest winter. More than snakes or spiders. Summer is my season. Heat, bugs and all. We're going to soak up every single second of sunshine and warm air we can. Being inside is a no-no. So if I don't post much (not that I do anyways) that's why. We're just out, soaking up the sun. Like John Denver sang.... sunshine, on my shoulders, makes me happy...sunshine, in my eyes can make me cry....sunshine, on the water looks so lovely....sunshine, almost always makes me high.

John Denver singing Sunshine :)

2010-05-08T16:14:00.000-05:00

Little Miss Livie is feeling some better. Her breathing is better if we keep going with the breathing treatments. She still complains that her chest hurts sometimes. Usually when it's been a couple of hours since her last treatment. She wants to get out and play so badly. I let her. It's impossible to keep a 4 yr old on the couch.

Eliza is starting to have more control! This is wonderful. She was sitting just for a few seconds alone. But a few seconds is more than I expected at this point! Someone has to be sitting right next to her so she doesn't get hurt. She gets tired easily so she'll just do it a couple of times for us. The first time she did it, she was amazed at how excited everyone was. She can't get herself to sit yet and won't for awhile. But I'm not worried about that. She sat alone!! This may seem like a tiny thing to most. But for Eliza is awsome! And she's rolling around a little more. Without any help. The eye doctor said her eyes looked great the other day. Everything looks to be staying the way he put it. That's great news too! I think since she's probably mostly used to seeing straight now, her balance is better. No more eye crossing to make everything look funny. :) I have a feeling her teacher/nurse/therapists are going to throw a party when they come this week.

It's time to start the garden. I am going to try a different set up this year. Which takes more work at first digging the different trenches suggested in the book I bought last year. It keeps us outside though. And maybe the kids will go to bed earlier if they're really worn out from being outside all day running and being farm kids. There's just no better place to live than out on a farm.

Thinking outloud...again.

2010-04-30T18:32:00.002-05:00

Liza was playing so well. Having a good time watching her sisters and brother be silly. But then everyone sat to watch a movie and next thing I know, she's asleep. She wanted her daddy's hat. She kept reaching for it and when she got her little arms up enough, she grabbed it. He let her have it for a bit. She was happy as could be with daddy's hat on. Content to just sit there with her thumb and the prize. Straight blue eyes and all. She continues to have some trouble with her allergies. She seems to do a little better though with the allergy meds the nurse gave her. I dont' like allergy meds much for everyday use. But I have to do what is necessary for her.

We are having another go 'round with Olivia being sick. Same stuff as before. She was better. The pneumonia is gone. Which means her troubles spell out something else. We will see a pediatric allergist and pulmonologist. Soon. Hopefully they can get her in next week. For the time being, she's on a new medicine and back to breathing treatments 4 x's a day. I'll be back to (oh wait! I already am!) being an exhausted mama. Getting up in the night to do a treatment. Although this time, I think we'll do it on the 11's and 5's. 11pm...5am...11am...5pm. That seems like a better solution than last week. 9's and 3's was just too hard on the mama. Last night she was awake at 11, 4 and 7 not being able to breath. :( We did breathing treatments then because I knew she would be in the ER if I did not. Then I called the docs before they were even really open. They're computers weren't even up and running yet. They are so nice there.

The question of the day is what's causing her problems. No one wants to hear my theory. Mainly because we're stuck in an impossible, unfixable situation. The house. Plain and simple. Period. I think the house is making her sick. And we can not move. The kids would have to go to public school, I'd have to get a high paying job with no experience or schooling and put the rest of them in day care. That won't happen.

Almost all of us have allergies. No biggie, we just take a little medicine if it gets unbearable and move on.

Mold. Black and white. Ugly. Sickening. Growing on almost every wall. Growing up from the bathroom "floor". On every window. The basement is covered with it. People tend to shrug it off and say it can't be that bad. I'm just over reacting. Everyone has some issues with their homes right? Sure. Right. Atleast we have a house to live in. But now it's making 2 of my children sick. Any time anyone wants to come take a look at the house, you're entirely welcome. There are patches of white stuff growing off one wall in the basement. But I refuse to go back that far to take a picture. Too scary. I have done a lot of reading online about molds. They all have side effects. Bad health effects. If it was just me, that would be one thing. It's not. It's my children. How can I protect my children from the house we have to live in? Any good mama wants to protect her kids. To raise them healthy and happy. They have everything they need. Everything except a safe place to live.

There's my theory. I sound mad, I know. To be completely honest, it does make me very mad. If the mold isn't the problem, I'll be happy and not worry about it so much. I will stop going on about the house and the mold. We can deal with the year round mild allergies from it. But this...no...I won't stand by and let my child go through this week after week until the ground freezes again. I am completely helpless. I have to just sit back and watch my children be sick. Give them expensive meds that aren't good for their little bodies. That will surely be the first thing I tell the specialist when we see him. I'm very interested in his opinion on the mold problem.

Liz and Liv at it again.

2010-04-24T19:39:00.000-05:00

(I hope my computer stays ON long enough to get this done!) I took Eliza back to Omaha a couple of days ago. Ok...my baby sister drove us down there because I'm a big chicken. Anyhow, we went back to respitory medicine at Children's Hospital. Her pulmonologist is gone this month, but we saw his wonderful nurse. She thinks Eliza just can't get the residual junk out from when she was sick last. And allergies. Huh? Allergies? Oh goodness. One more thing. Which means this house is probably making her sick to some degree as well. So between the high pollen counts outside and the high mold counts inside, she doesn't stand a chance.

Liza and Livie are now both on the breathing treatments. Liza is on some allergy meds (yes..even though I hate constant allergy meds) for a few days to see if that doesn't help. Something has to help get the crud out from her throat before it makes it's way to her lungs.

Olivia, well, she's getting better. Slowly. She still gets worn out and needs to rest. Just not as quickly. Her lungs sound clear. So we will do an x-ray next week to see if there are spots or anything. Hopefully it will be clear and she can stop the treatments. I gave up trying to keep her still and in the house. Sun and fresh air never hurt anyone. She just has to be careful not to run too much. But she's doing a great job.

------------------------------------------------------------

I have finally gotten completely and utterly absolutely sick of living in an ugly house. I can not do anything about the mold, the bathroom, or any of the other hazardous things. BUT my mother is making curtains for the kitchen so I can atleast have a pretty as I can, house. It's so nice to have curtains. Out here, it's not because we have neighbors. It's more just so it looks better. A house, with no curtains, just seems bare and ugly. These are the ones above the sink. I am so excited! I don't have a sewing machine, or I would have done it myself years ago. :) But my mother sews like a pro, and she loves us.

Beautiful weather

2010-04-19T20:48:00.001-05:00

My oldest and I worked yesterday to set up the clothes line. My parents gave it to us, oh, 10 yrs ago maybe. It has sat up against the shed since the day we brought it home. Every year I've asked for it to be set up. I got tired of waiting. Apparently I am entirely too patient with my busy husband. We untangled the lines, cleaned them up and snapped it out. She dug the hole and we set it in. Someday (read in 10 years) it will get set in some cement so it doesn't tip over. It's pretty sturdy as it is now, but it hasn't been wind tested.

I just thought this picture was cute. The oldest and the youngest.

Since it was so very beautiful out today, I sent them all out. Anna pushed the two sick girls in the stroller around the farm. Gar had to get in too for a bit. Olivia can't be up and going for long before she starts coughing a fit and getting tired. Before this week, I didn't even know how to spell pneumonia. She needed some fresh air though, so this was a good compromise.

Eliza was playing on the floor. She rolled enough that she found the kitchen floor. She seemed amazed that there was something other than carpet there.

The end of this week, we will take her back to Omaha to see the pulmonologist. I'm hoping it's nothing, but it's better to err on the safe side. Especially since Olivia has pneumonia. I need the peace of mind if nothing else. She's still coughing and yucky.

Quack...cluck...

2010-04-18T12:42:00.000-05:00

The quackers are finally outside! Nate took the old playhouse and made it into "the duck house" as the kids call it. Years ago, back when I was probably 5 or 6, maybe younger even, (I'm 33 now!) my dad made us a playhouse out of an airplane parts shipping container. He made it awesome! Put double doors in, a roof on, with shingles even. Some shelves on the inside and window. He painted it to match the house. We had so much fun with it as kids. I have a great dad. So then when they moved from Sgt. Bluff, we brought the playhouse to our house. It served my kids well for many years here. They had lots of fun with it. Over time, it's condition has gone from good to falling apart, but the kids didn't care. The kids were still playing in it the day Nate moved it up to the north shed. They were sad to see it go to the ducks and chicken, but excited too.

Nate did some reinforcement work to it and put some wire mesh over the window. It makes a suitable duck house. We're not done with it yet though. Soon, very soon, we will make a little lean-to off the front here. So they can get out and run around without the threat of stupid cats or various other unwanted animals. First though, it needs to be moved to a different place. If we leave it in its current place, it will get drifted in all winter and we won't be able to get to it easily. It also needs to be closer to an electical outlet for heat lamps.

Now we're ready for more chickens! I'm so excited! So are the kids. We've been wanting to get chickens and ducks for several years now. No excuses not to now!

I was going to make it into a greenhouse. But it works better for the chickens and ducks for now. I'll figure out something else for my greenhouse. That way I can make it bigger. :)

One foot infront of the other

2010-04-18T10:57:00.000-05:00

Olivia, it turns out, has pneumonia and reactive airway disease. From what I've read about RAD, she will probably have asthma. This from my girl who hasn't hardly ever been sick. Sure she's had the flu and a sniffle here and there, but otherwise a pretty healthy kid.
Eliza will probably need to see her pulmonologist again before the doctor will do much else for her.
We are pretty much grounded to the house now. I need to go to the store. But when? I'm not real sure. Nate is helping his dad with a building in his spare time. I can't take Olivia or Eliza out unless we absolutely have to. Mabye I'll go later tonight (after the NASCAR race and Nate is home from building) and go my least favorite store. I need somethings at one very large super center that I just can't get here in our little town. I wish I could formulate my own paint and material. Going to the city to Hobby Lobby or Michaels just won't work right now with sick kids since it's an hour away.
I'm exhausted. A friend said it's like having a new baby again. All of this getting up in the night to do the breathing treatments. It certainly is!
Yesterday, in an effort to stay AWAKE all day, I resorted to coffee and my vitamins with lots of B3-6-12's in it. And I just kept moving. One foot infront of the other. Moving furniture, cleaning everything, finally got the kitchen counters cleaned off so you can see them again, laundry, browned the 10 lb tube of ground beef for tacos for the next month (a job I absolutely detest doing because I don't like meat!!)...lots of stuff. By 7pm I was falling asleep at the computer when I sat down so Eliza could have her goat milk. ugh.
Today, Nate escaped with the oldest 3 to church. I have the youngest 4. A 14mo, 3, 4, and 6 yr olds. Yep, this is fun. Atleast they're keeping Olivia (4) busy for awhile in the basement. She doesn't want to sit still for long, but she can't really go outside. Jessica is pushing her around the circle on the bike. I said if I heard her barking *coughing something aweful* she had to come up and watch a movie. She's being very good today about playing slowly. That's a hard concept for a 4 yr old to understand!!

So besides the store issue, what can I do today? No rest for the weary mama. She must keep going and going and going. Thank goodness for Folders and organic vitamins! Maybe I should tackle the 11 loads of laundry that have sucked my couch into neverland. This, embarssingly enough, is what has become of the laundry the last several days. I bring it up from the basement and set it down, telling myself I'll be back in a minute to fold it. Or I'll fold it after dinner, after I change a diaper, after...well...HA! there is no after anything. There is couch under there. I can see the arm rest. There are still 4 baskets not in this picture that are waiting to be folded with 1 in the dryer, 1 load in the washer and I'm going to change it out again. It's just blankets that need done today, so those are easy. No folding! Laundry for 9 people (some who change more than once a day because they get filthy) is a daunting task. I wish I could have a laundry room like the Dugger family. Sure would make things easier. But when I have ever been able to do anything the easy way?

A trip to the doctor and ER

2010-04-13T15:10:00.001-05:00

Olivia in the ER doing a breathing treatment. She got to go for a ride in the wheelchair to and from the ER. That was NOT her idea of a good time. She doesn't like things with wheels.

She'd been coughing for a couple of days. Then last night she couldn't breath at all. She was weezing so loud! And her little chest was working so hard, she looked like she had run a sprint race. Her heart rate was around 152!

So I called the doc before they even had their computers up and running this morning. Got in early and then went across to the ER for an immediate breathing treatment. Her ox was at 87 I think before and back up to 97/98 after. She was misserable. She is on total rest until Friday. We go back in for her and Eliza then.

Tonight Nate and Garrit are going to build the chicken/duck coop. IF the wind stops blowing!! Garrit says "I going to build a chicken poop wif daddy". I can't stop laughing when he says it! He's so serious about it. We have 2 ducks and a chicken that need a home outside.

We will miss MOPS tomorrow. :( Atleast I got to go out to dinner with some of the ladies last night. That was fun. The girls will just do their schoolwork instead. Maybe I'll catch up on housework. Ok...so that might only happen in my dreams. I'm sure I won't get anything done. But that's a normal day for me. There are currently about 7 loads waiting to be folded/put away on the couch behind me. The VBS craft things came today. So it's time to get started on that too. I still have lots to buy for the rest of the days. And lots of prep work to do this year. Yikes! I best get to it. Farming stuff will start soon I'm sure. And if Nate doesn't need to help with tractor things, he'll be out getting the farm cleaned up for scrap haul. Or getting the building up at his parents farm...or...whatever else needs doing. I have a garden to get planted. Well, first tilled and then planted. It must be spring in Iowa!!

Signing Time!

2010-04-08T17:02:00.001-05:00

Sign Language & ASL Signing DVD's. Learn Signlanguage!

The older kids and I are learning ASL with Signing Time. Eliza is signing a couple of the signs we are teaching her already! She signs milk and mom. They aren't perfect, but it's obvious what she wants. The others are having fun learning a new language. I like it because it has little ones like them and music. Each sign repeats, but it's not boring repetetive. We just have the first 3 dvd's. But it's going to take us awhile to learn what's on them. Instead of learning some other language, we are learning ASL as our second language. Sometimes it even keeps Garrit from having a melt down over something. For being 3, he's picking up on a lot of it.

Stair steps

2010-04-05T14:18:00.002-05:00

Easter 2010.

Anna, Katie, Belle, Jessica, Olivia, Garrit, Eliza (in Katie's arms)

So this is all of us. The picture hanging on the left side are my Great-Grandparents. Grandpa would have been 100 this fall I think.

2010-04-05T14:11:00.000-05:00

Post surgery.

Her eyes are straight as can be. She doesn't throw her head back to look at you anymore. But she won't play with her previously favorite doll or block now. They don't look like they used to! Who knows what/how she truely saw things before, but now I'm pretty sure she sees nice and normal like we do.

She is beautiful. She was beautiful before. It still is a little strange to me to see them both move together and look at me straight. She's been cross-eyed for 13 months! But I'm getting used to it. I just sit and stare at her pretty blue eyes. :)

Eye surgery

2010-04-01T13:35:00.001-05:00

Eliza had her eye surgery on Tuesday. She did great! It always takes her a little longer to come out of the annestesia, but she did great. No fever or anything this time again! She's used to being patient for her breakfast, so she didn't even know that she wouldn't get any. She slept almost the rest of the day. She does not like having the eye drops put in her eyes. So that woke her up for a little bit, but then she went right back to sleep for the night. That was good for me and Nathan since neither of us slept a minute Monday night. We were both nervous and I'm not used to city noise (or any noise at night for that matter). Tuesday was a very long day. We both took a 3 hour nap while she slept the day away.

We stayed at the Rainbow House while we were in Omaha. They are all so nice there. And we got to eat at the Olive Garden. Since there was only 1 child, who doesn't eat from my plate, and was sleeping anyway, I wasn't eating fast food again. I can't eat fast food really anymore. It makes me sick. But that's what happens when you eat healthy and then throw that nasty food back in. I'm thinking it would have been safer to eat fast food though! First we ordered lemonade. The waitress dumped it on me. Fun. Then another waitress turned around too fast with her big tray and dumped the huge, heavy salad tongs off and bounce off my shoulder. I was determined to not let either thing bother me. I haven't been to a real resturant without kids (except the baby) in 10 yrs. So poopoo on them for trying to ruin my night. Then the next morning we got ready and went to the Westroads Mall. Got a couple of cute dresses for Eliza. Didn't find what I needed, but oh well.

We had to go back in to see Dr. Troia the next day. Which only took 6 minutes! He is an excellent surgeon. And by the time we saw him Wednesday afternoon, she looked much better.

She still has some swelling and bleeding/drainage, but that is normal they said. Her eyes will go from the bloody red to the usual greenish/yellowing/purpleish colors like a normal bruise would. And then back to her normal greyish color. (Normally people have white, but hers is gray.) That will make interesting Easter pictures.

Speaking of pictures, I haven't done her 1 yr pictures yet. I'm hoping she'll be back to her normal eye color in a couple of weeks and then we can do them then.

In anycase, we are home and everyone is outsdie soaking up this beautiful sunny, warm weather. I'm inside with Eliza because she can't be out in the bright sun and/or dirt for awhile. With the hog trucks going back and forth today it's very dusty.

A crazy week to come

2010-03-25T17:24:00.000-05:00

A couple days worth of goat milk for Eliza. Initially I bought three of the tall glass jars like the one on the right. Two of their lids disapeared one day. I wasn't about to pay $10 for shipping on the two lids $1.25 for replacements. Instead, I used what we had! Since I buy veggie juice and prune juice in glass jars, I saved them. The one with the red lid is a pickle jar. We eat a lot of pickles! So I just save the jars. I very much dislike plastic! Now we are recycling these glass jars instead of throwing them in the burn pile. Glass...by the way...isn't biodegradable. I mix the milk in another container because it has a bigger opening and pour it in these jars. It makes me happy to recycle. I smile everytime I open the fridge to get out her milk jars. Sometimes, it's the little things. Ok..ALL the time it's the little things.

Something to do while the bigger girls do schoolwork. Eliza was making beautiful music for us. She has such a good time playing the little piano.

Bathtime! What an issue this is for us! Oh my. I bought a special little bath seat from a friend at our garage sale. It isn't really what she needs, but we made it work for now. Then I hurt my knee. I couldn't walk let alone get down on my knees infront of the tub. So I scrubbed out one of the dishwashing tubs really good. She's just about too big for it, but it's all I've got until my knee is better. (My knee, now has been almost 3 weeks since I hurt it! and it still hurts a LOT.) We use the little tub on the right in the picture to get cold water from the bathroom to mix with the HOT water from the kitchen sink. There is no cold water running to the kitchen. Yes...we live in America...but you'd never know it if you lived in this house sometimes. We don't have a fancy t.v. show to fix everything for us like other large families you may have heard of do. (I'm a tad frustrated today by it all...yes I am.) Anyhow...this is working for now. But I think the time is coming quickly that her little legs will be too long for sink bathing.

What's next? Eye surgery! She will have the crossing in and the crossing up/down fixed. The doctor said about 20% of kids need a second surgery. I pray that we aren't in that 20%. She will have the surgery one day and hopefully be released. Then we have to be back the next day. We live quite a long drive of 2 1/2 hours away from the hospital and doctors office. So we will stay at the Rainbow House again. Such nice, wonderful people there. I didn't get to talk to anyone really last time. I was along with the tiny baby, overwhelmed, scared, nervous, hungry, etc. at that time. This time though, Nathan will be with us. And, I've been through this before. So now it's all getting to be a routine of sorts. No maps needed to get around Omaha. Just the guts to drive and get around Omaha. That's what Nathan is for. :) I just need to remember everything, for 9 people (that's 9 lists!) and to turn on facebook on my phone to keep everyone updated.

All clear...sort of....

2010-03-15T16:59:00.000-05:00

We got the 'all clear' from the cardiologist last week. Both holes healed and closed by themselves. Great news! Anna and Belle went with me to the appointment. They got a free science lesson in how the heart really looks, sounds and works. Belle was amazed that it didn't look like the cute little Valentines heart shape. She talked the poor doctors ears off about it. :) So we check another doctor off of our list.

But...after Eliza not really having any trouble with the laryngomalacia (breathing problems) and being discharged from that doctor a couple of months ago, she has had more flare ups in the last month than I can remember in a long time. At night, during the day, it doesn't matter. There isn't anything to do about it, just wait it out. But it makes me nervous. So we're back to keeping a close eye on her. I'm back to not sleeping well. She's had many of her flare ups at night the last couple of nights. ugh. With the flooded basement, the house is extremely humid, all the time and there is no end in sight. The corn burner, dehumidifier and house furnace run constantly. Waisting money really, because none of them are keeping the house dry. All of the windows are wet all the time, so it's obvious that nothing is keeping ahead of the humidity. With all of this humidity comes mold. We have black mold and mildew all over the basement and house, all windows and corners of rooms, behind dressers, in the ceiling...it's everywhere. I'm fairly certain that is what is causing her to have such flare ups again. It's there and that's just the craps of it. The water will be there as long as there is snow to melt and rain coming down. It will flood even when there is just rain and no more snow to melt. It won't get better. It just runs like a fountain out of 2 holes in the wall. The light fixtures will eventually start to leak as well. But I won't go there.

Oh becareful little eyes...

2010-03-11T17:43:00.002-06:00

The cute video decided to not work. :( I don't know what to do to fix it.

Anyhow....
We are back and forth to Omaha again. This time for the eye doctor. Some good news, glasses aren't needed now. Some not so good news, surgery is required to fix the problem. There is a fancy medical term for it, but it boils down to her eye muscles being too tight. The doctor will unattach the muscle and reattach it in a better place from what I understand.
She absolutely hated having her eyes dialated. Poor girl! I have avoided the eye doctor and just lived with fuzzy vision since 2001 because I don't like having my eyes dialated. I waited to give her the bottle until we were there because she does great most of the time if she's hungry and gets her bottle while we see the doc. The doctor is an excellent doctor. I'm glad we went to Omaha again. She will have to go back again to recheck the degree of crossing and then have surgery the end of the month.
AND! I got to go to Whole Foods Market! I've been begging to go there since it opened I think. Well...it just happens to be right across the street from the eye doctor. We got off the interstate and here's the big Whole Foods Market sign right infront of us. WHOOHOO!! So Nate (he went with us because I think Omaha drivers are out to get anyone with an Iowa liscence plate!) did a couple of no-so-legal turns and got us across the street to the market. I am in love. All good, organic food. None of the junk. And the store is clean and nice to boot. That is a necessary stop now when we go back to the eye doc. I don't know how to get there otherwise. :-) A bright spot in our doctor and surgical trips to Omaha.

Ladybug

2010-03-03T18:47:00.000-06:00

Grandma Davis made Eliza a pretty little ladybug dress with a frilly pink jacket. They are most adorable!

I L-O-V-E to recycle. Last year, I saved the boxes that the VBS paints came in. I painted them fun colors and now they are blocks. All it took was paint I already had and the kids love them. Hours of towers, bridges and whatever else they figure out. (The shelf behind them used to be a kitchen cabinet in the other house!)

Today I was trying to get Eliza to roll over. She didn't...but it was still fun playing with the mirror and her. She seems to be having issues with holding her head up this week. (Maybe it's just me over reacting?) She seems a little more wably headed again. She has taken to throwing her head forward or back. One more thing. The mama is getting a little frayed around the edges again. But it will pass. Eliza sees the eye doctor next week. Maybe that will help once I know what to do next.

On the bath front, I put the baby tub away. Since we got a new dishwasher, I have one dish tub that wasn't being used. I folded a towel in the bottom for her to sit on and it worked fairly well. I just set it on the bathroom counter (because there is no cold water running to the kitchen sink anymore). That won't last once her legs get longer, but for now it works. I got some swimmer ear plugs to use for now too. She loves bathtime. And with the wall sized mirror in the bathroom, she loves to splash the water at the baby. It's too cute.

After a month of of little to no doctors, we're right back at it. Well...next week anyhow. We're going to cram as many things as we can into everyday apparently. When will I learn? Probably never. But that's OK. Whether or not we make it to MOPS is yet to be seen.

Bathtime

2010-02-20T23:52:00.002-06:00

Bathtime is becoming an issue. Eliza LOVES bathtime. Because she can not sit up on her own, she is still taking baths in the baby bathtub. A tub meant for new babies. She is 1 yr and is too long now for it. Her feet hang out the end or her head is over the top. I am getting to the point that I am not physically able to give her a bath without being in a large amount of pain. What do I do? She is becoming too squirmy and loves to be completely in the water from her shoulders to her toes. But she can't get water in her ears because of her tubes. Putting her in the real tub in some sort of contraption isn't any better for my back because that's just leaning over more. Do I take a bath with her? I don't know. I hate being in that bathroom. It's discusting...but not because it's dirty. I won't show any pictures because it's too embarassing. Anyhow there has to be a solution. The kitchen sink maybe? But then how to wash her hair becomes an issue (water running over head...ear tubes...). Swimmers wax maybe? If I put that in her ears and then washed her hair? Mabye I'll give that a shot. Oh...wait...no that won't work either because there is no cold water going to the ktichen. No, I'm not kidding. Spring 2002 was the last time we had cold water running in the kitchen. The line busted, it got shut off and never fixed. The water in the kitchen is too hot for bathtime. It's too hot for anytime. I wonder how the Bumbo seat would work in the bathtub or if they sell something similar for bathtime. That's something to look up during commercial breaks during the race tomorrow. Handicap tubs and contraptions are extremely expensive. She will only continue to grow. And my pain will continue to get worse. The girls can't help because they can't keep her still either. *sigh*
One more hurdle to conquer.
A good note...I think we're getting a handle on the constipation. Poor girl! Since I switched her over to the goat milk I think she looks better and the weird rash is gone. :)
She has prune juice in every bottle. And she still has probably 6 bottles a day. She continues on the puree diet since she only has 2 teeth and feeding issues before. Although she is getting much better! She's nowhere near ready for anything remotely solid.
Pears or peaches (lunch) with whole wheat baby cereal mixed in and a bottle of 2 oz goat milk, 1 oz prune juice, 2-3 oz water.
Spinach/peas/pears mix or peas or mix veggies or a couple times a week I'll switch to the orange colored foods (dinner) with whole wheat baby cereal mixed in and a bottle of 2 oz goat milk, 1 oz prune juice, 2-3 oz water.

2010-02-17T15:19:00.001-06:00

I'm begining to think they've gotten rid of all of the other colors. Kinda like they did with Pluto. All we can see is white. Piles and mountains of white. Our road has been reduced to a tunnel of white. I wish I would have had my camera with me today to show you our tunnel road. I made it out and back home by throwing the truck in 4wheel drive and going for it. So did the mail man. The UPS and Fedex men decided differently. They didn't bring me my boxes. But that's OK. It's not food this time. Just a Jr. t-shirt and some yarn to knit Eliza and her cousin who has AML lukemia cute matching hats. I wish Lyric had her hair like Eliza though. I want more than almost anything to go to Tennessee and give the hat to her, but the mailman will have to do that for me :( If I can get the gas/food money together, I'm going to do it.
This colorless season also stops Eliza's ladies from coming out. I don't want them to get stuck on our road though. I think I'll buy some shovels tomorrow if we can get to the highway. The kids could shovel the road out. Now that sure would keep them busy for a very long time! I tried to get them to go outside and build snowmen. That's a no go. They are sick of the snow too. It's just not fun anymore.
Since we are stuck in this vast colorless world of snow, I am learning a new knitting technique. Frustrating, but getting better. Toe up, two-at-a-time, magic loop socks. So really, I'm learning three methods. All at the same time. But that's what youtube is for. Knitting videos.

Eliza is eating 2 times a day now. I've been giving her fruits at lunch and veggies at night. In my search for minimally processed, organic baby food, I found some great little pouches. They come in spinach/pear/peas combo that I love! I've never found spinch in any other brand. They have other mixes too that I like. Good-bye Gerber. Hello Plum Organics.
She is doing better with the goat milk too. Which is hard to find around here, so it comes by way of UPS. I wish I would have gone with goat milk from the beginning. There is no sugar or preservative junk in the goat milk I get. There is a ton of sugar in cow's milk formula. Tomorrow, if we can get out to go to the Chiropractor, I'm going to the second hand store to look for a high chair. I think she would enjoy sitting in it while I'm making dinner or whatever. A little safer when I'm not sitting right infront of her like the Bumbo seat.

I don't have any cute pictures right now. The computer also has cabin fever and is rather tempermental.

1 yr old

2010-02-08T10:59:00.000-06:00

Happy 1st birthday baby girl! After a long year, with days and weeks that seemed like they would never end, a whole year has gone. I'm happy I'm her mama. She smiles the biggest smiles and giggles the cutest giggles. We had such fun with her birthday at my parents. Every birthday is special, but this holds a place a the top.

My mom made the most adorable ladybug cake for Eliza's birthday. We sat it on the tray infront of her. Not thinking she would touch it. Why? Who knows. Then her Aunt Steph says "touch it!" and she DID! We were having fun and she was too precious. We didn't light the candle though because we didn't want her to get hurt.

I tried to upload a little video of her with the cake but it won't let me. You can click on the link there if you want to see it. It's only 21 seconds, but it's cute.

She wasn't sure at first. But then she stuck her fingers back in her mouth. Then got it all over her shirt and the tray. Her tummy must not have liked it. It didn't stay. She didn't get to eat any of the cake because she is still only tollerating stage 1-2 baby foods. No fear, I got the stains out of her shirt!

She got some nice clothes and some cute shoes for her birthday. I found some cute shoes on a clearance sale! So I ordered 3 of the $7.95 shoes. They're ginormous! I reordered 3 smaller sized shoes and am still waiting for them. Should be here today. I guess the bigger ones will be a Christmas gift? because I can't send them back. No biggie. She'll wear them, just not right now.

Give the baby kisses!

2010-02-04T21:58:00.002-06:00

We went back tot he ENT this week. Before the nasty weather started! Aunt Steph and cousin O were back from Florida so we got to see them too. The ENT said her ears are clear and dry. GREAT! I thought maybe by the way she has been shaking her head again they may have had a problem with the tubes or water got in them or something. But nope.

We also saw the pulmonologist recently. He cleared her for good. We don't have to go back unless she has some major set back. She's done great the last few months. Probably out growing the laryngomalacia WAY ahead of schedule!

Add another doctor. Our wonderful Chiropractor. She was very unhappy though. Poor little ladybug was scrunched up pretty bad. We'll go a couple more times to make sure it stays set. Maybe that will be all it takes to get her to use her left arm/hand more. And help with the constipation. And...AND...roll over?? Ok...breathe mama...one thing at a time. :-)

I love this picture! She gets excited when she looks in the mirror. Another baby right?! Today she was giving the 'baby' kisses. We were having our daily sitting playtime in the Bumbo. I picked up the mirror and she swiped her toys off the tray and grabbed for the mirror when I set it down on the tray.

Then I took the mirror away. I think she was a tad confused. But it was time to move onto something else for the day. Like lunch!

The day her AEA ladies came out (PT, OT, Teacher that day) they gave her a little boa. At first she wasn't too excited about it. Seemed like she didn't care for the feel of it. But then after they left she didn't want to let go of it. She layed on the floor with it for quite awhile. I think she even took a nap with it laying there.

Sister and brother wanted in on the camera fun too. So they sat on their pillowpets for a picture. But really...they are pillows...not ride on toys. I think these are one of the best gifts I gotten for the kids yet. They sleep with them everynight. And they don't fight over who's is who's either.

2...yep...only TWO DAYS until her 1st birthday!!! We already had one party. That was biggest blessing! She's made it. I've made it. We've all made it. I can't believe it's past now, when just a few months ago it seemed like time was standing still. There IS light on the otherside of diagnosis. God has seen us through. We have been blessed beyond measure by her life, through our church, friends from MOPS, family, other friends.

But that's for another post. I just layed my little bug in her bed. Time for the mama to sing praises to sleep.

"...I lift my eyes unto the hills, where does my help come from?

My help comes from the Lord, the maker of Heaven and Earth..."

Casting Crowns - see playlist below

Ice ice baby

2010-01-20T23:26:00.002-06:00

Little miss ladybug and mama had some fun with the camera. I love pictures so there are never enough. Besides it gives us something fun to do when we're snowed in or iced in as the case may be today.

She is doing good with the goats milk. And she's doing OK with a little water too. She will be stuck with her bottles for a long time yet, but she doesn't mind that I put different things in them. The constipation isn't any better yet. I am trying to avoid the supository route if I can. Maybe one of these days her little system will regulate, but I'm not holding my breath.

We started out in the chair playing with the curtains Grandma gave us. But she doesn't sit on her own yet so my arm got tired of holding her up while the other got tired of taking the pictures. So the second one she's laying on the floor again. 18+ lbs isn't easy to hold with one arm!

Anna took these photos just before the current ice storm. They look heavy now and not so pretty. She's getting pretty good at catching good photos.

Just about everything in the area was shut down today. So much ice out there! Nate even said the roads were slick and he's not one for being nervous about the roads. Eliza's friends didn't make it out. This weather really just doesn't like us this year. Tomrrow the homeschool lady is supposed to come, but I guess we'll see about that.

I want to already be asleep. Being 'iced in' thanks to this current winter storm, makes me nuts. So we did some extra cleaning today. Being awake at 5am because of the storm though is wearing on me. Garrit woke with a nightmare again, so that woke me up for a bit. But when I tried to go back to sleep the rain started and it sounded like someone was using a bbgun on the house. We have some old metal window things that are the worst things ever made!! So when the wind blows and the ice/sleet comes down it's rather loud. I tried to ignore it but then I started to worry about the power going out and my phone...where's my phone? Is it charged? Where's the charger? At 5:15am I was up looking for said phone items. I think I fell back asleep around 6am maybe for an hour. Now Garrit has a migrane and I'm the mama. He wants no one else. He was asleep when Nate tried to carry him to his bed. Nate tripped. Falling with Garrit in his arms. Trying not to hurt him. I think maybe that made his spine shift or maybe he hit his head. Or maybe both. Because he was perfectly fine before falling. Now...not so much. I know his pain all too well. I wish I could do more than give tylenol and snuggle with him. Just seems like I'm not doing enough as the mama even though there is nothing more I can actually do.

Maybe I'll lay him in his usual spot in our bed and try to sleep. Hoping he doesn't wake up crying. That...would wake up Eliza...which in turn would make the mama not very happy with anyone.

From 1 degree to another

2010-01-17T23:04:00.000-06:00

Just when I think things are going great, something else comes up. Why? I wish I knew.

My precious girl has been sleeping all night long since the ear tubes were put in.

That makes for a happier baby and one well rested momma.

Last week I switched her over to goat milk instead of cow's milk formula. At first, to see if her 'cold' would go away. Thus meaning she prob has an allergy/intollerance to cow's milk. Which would not be a surprise since Jessica (#4) and I do as well.

So guess what has gone away? No more snotty nose.

Coinsidence? I think not.

She has been doing better with foods. We've moved up to the stage 2 organic baby foods! Mostly because she seemed to want to eat more at a time and there are more kinds of foods in the stage 2. And if I still hold the spoon in her mouth for a couple of seconds, she gets it down. Except that now she's extremely constipated. I am not exagerating. I was hoping the goat milk would help a little, but not yet. I add prune juice to her bottles and she gets prunes with her dinner too some nights. Also some extra water during the day. And still, she'll be 3-4 days without a dirty diaper, then be in so much pain trying to do so for a few hours. I've never had a baby have a prob to this degree before. I've tried the natural ways I know to try. What now?

When she screams in such pain it breaks my heart and by the time we finally get her relief, we're both exchausted.

So now that she is asleep, I'm going that way myself. But first before we did the furniture shuffle, Livi and Garrit were being very helpful entertaining Eliza. I think they like her area better than she does. Although, now that Eliza has figured out that if she kicks the little piano thing, she makes it sing and light up, she's liking it more. Before she couldn't hear it. Now she can!

Extraordinary Measures

2010-01-13T16:24:00.003-06:00

extraordinarymeasuresthemovie.com If you go to this website about the movie, at the bottom of the page, there is a box for Inspirational Quilt. Find the box with the guy holding the wooden hammer. The story of Evan Newport. Vote for his story please! I didn't know them, but I read all about his life. What an inspiration he is. He died the day after Thanksgiving, but he can still touch others lives. :)

Some bumbo fun

2010-01-12T21:12:00.001-06:00

One thing Eliza got for Christmas was a Bumbo seat.

Her AEA ladies recommended it for sitting practice. She likes it for a little while. We use it mostly for eating. In the afternoon she'll sit in it for a bit, but she tires pretty easily from making her muscles work so much.

There are sooo many useful things out there. Things I never would have bought for my other children. But they didn't need them. This Bumbo seat is pretty nifty. I'm hoping it lasts a long time so we don't have to buy a high chair. We don't have one because we just don't have the room for one. I may just have to give in though and buy a high chair. ugh. I think she would benefit from the sitting practice in a safer way. I can't just leave her in the Bumbo seat and let her play unless it's sitting on the floor. We'll see. Maybe a good question to bounce off the AEA ladies when they come on Thursday! There are just sooo many mor details to think about when a baby is diabled.

Do you speak blog?

2010-01-11T00:13:00.000-06:00

I do. If I can't sleep, when my people seem to stop listening or if something lights a spark in my head, I'll 'write' a blog entry. Then sometimes I find myself saying something outloud and totally confusing my people. So later I'll sit down here while Eliza drinks her last bottle for the day and not recall a single entry I had in my head. Once in, once out. Frustrating!
(btw- my people is short for the other 8 people who live in my house)

Anyhow, we have a had a rediculous amount of snow and the temps to go with it.

After we survived through all of the snow and below 0 temps, we're ready to move onto summer!! First though, we are moving furniture. I don't mind being home many days in a row. But force me to be (by the weather) and I'll go cookoo. Yesterday was this room. Today...nothing because I used up all my energy yesterday. HA! Tomorrow will be the rest of this room- just needs little things done and the living room.

Eliza is out for the night I think. More on her tomorrow...

Another year

2010-01-07T23:00:00.000-06:00

Leaving 2009 behind and moving into 2010 was a mix of emotions for me. Time gone that will never return. Kids another year older. Me, another year older. After facing down health issue after health issue, I'm glad to move into 2010. Maybe it's just that I am infact, older now and don't like that time seems to just fly away.
So before we left 2009, Eliza had tubes put in her ears. Remember our struggle with thinking she was deaf to some degree? Well as it turns out, she is not. The surgeon said she has an extreme amount of mucous and fluid in both ears. So he drained them out and put the tubes in. My baby girl has had a pretty significant change in her life! She CAN hear! And she startles and gets pretty overwhelmed sometimes still by the noise level of our house. I feel bad for her. We are all having fun watching her though as she learns what sound this or that was and where it came from. Her eyes get wide and she gets a sort of surprised look on her face when there's a new noise or new voice. I just want to stop time and keep that in my mind. We see the surgeon at the end of the month (barring anymore snow!) to make sure everything still looks good in her ears. Dr. Kenny is an excellent and nice doctor.
I am very frustrated with this weather! I'm totally ready to go be missionaries in PNG with our friends! It's warm and sunny there. I can deal with the rain. The snow though, not so much. With close to 30 inches on the ground between Christmas and today's storms, I'm not sure I can handle much more. I don't mind staying home for days at a time. But being forced to and knowing that there is no way physically possible for us to leave even if we had an emergency, is well...overwhelming for me. It's just the kids and me tonight. Nate is stuck, literally, in town. He's staying with his Grandma tonight. Snow + blizzard winds= no plows= no going home.
Anyhow, back to Eliza...she's growing slowly still. I'll take it though! She has begun to tollerate stage 1 baby food. I have to help her a lot to keep it in her mouth, but there's no gagging/choking anymore and most of it stays in her mouth. So far she's willingly and enthusiastically, gobbled down carrots, peas, grean beans, pears, applesauce, and bananas. Just once a day. I think I might try lunch and dinner tomorrow. Too much food though and her little body won't be able to handle it. We'll see how she does. One day at a time. She was wanting 15-16 oz of formula for her nightime feeding. Now she eats one of the baby foods and has about 7 oz and sleeps all night. (shhh...I hope she didn't hear my say that and make me regret saying it by being awake at 2am!)

Where did this year go?

2009-12-17T08:27:00.005-06:00

2009 seems to have just left us in the dust. When I was small, it seemed like a year took forever. Now it seems as if a year is but a day. There is still time in this year though. It's not completely over yet. In some way I wish it was, but in others I am glad it's not.

The last couple of weeks have been extra hard for me. I'm about a whole week behind on laundry. A week behind on dishes. It's become a wash-it-if-you-need-it kind of two weeks again. My health issues have gotten worse. Quickly too. Yesterday I had a head CT scan done. The injection die is some seriously weird stuff. I will hopefully know tomorrow. Today is my doctors day off, so she won't see the scan results until tomorrow. I had to take all of the kids with me to the doctors appointment, so I couldn't really talk to the doctor much. Nathan drove down from work to sit with them during the CT scan. I'm glad he just works in town now and not an hour away. And I hope his boss understands. Between Eliza and me, it's been a hard year.

2009 has been a hard year. And not just for me. My cousins little girl is going through chemo and surgies that come with AML lukemia. I am thankful for internet and blogging for sure. He keeps her updates going every couple of days. I just want to hug her. But they live in Tennessee. There have been a lot of health issues in my family. It's like we're all falling apart at once.

Mabye 2010 will be better?

For as many bad things that have happened in 2009, we have seen many good. We HAD Eliza. She made it, which is rare for her deletion I understand. I've gotten to love her for 10 months already. We have been taken care of by our church. In more ways than I can even begin to describe. Prayers, food- oh my goodness food! The woman are just wonderful. And great cooks too. We couldn't have gotten a different suburban if it weren't for our wonderful Pastors/Elders.

A great friend gave us a Christmas tree and ornaments to go on it! (our trees had broken and the ornaments box smashed last year.) This new-to-us tree is beautiful. The most beautiful one we've ever had. I don't know if we will take it down to put away. It's a reminder of how much we are loved. Some of my large family, homeschool friends got together and blessed us with a Christmas gift (a game) for each of us. And another did the same with her church. And my Grandparents too. My kids each have 3 gifts plus a book in their stockings this year. When a month ago, the only thing they were going to get was a book and a pillow that I got clear back in March.
But more important than that, they are learning about how God uses His people to take care of His people. How there are people out there who are good and kind and love us. How HE love us. They have seen that even when times are hard and look pretty grim, there is always support and love to be found. If everything was always easy, they would never see that.

So this year has had some pretty major highs and some pretty major lows. We will go into 2010 stronger? I hope so. I want to find some ways to 'pay it forward' in 2010 that we can do as a family.

I best get moving. Grab my coffee and get the laundry going, do a few dishes and get little people up and going. They have many days of schoolwork to catch up on. And we have a check up for Eliza after my chiropractic appointment this afternoon. I think I need to back to see my message therapist!

What's in a name

2009-12-03T07:56:00.000-06:00

What's in a name? A lot apparently. Atleast for me there is. Each time we have been to the doctors for something major, and come home frustrated, I stay up until my eyes can't see the screen. Why? To find a name. An answer. I want to be able to say THIS is what she has. How hard is it to just give her syndrome a name? But they haven't yet. Because she doesn't fit in the PSS (Potocki-Shaffer Syndrome) mold perfectly. She does however have symptoms of PSS and the location and size of her chromosome deletion would suggest that's where she should be. We will just keep asking and researching. The new doctors always want to know what the name of her disorder is. Some are a little surprised when I say I don't know, but this is where the deletion is at, so go from there.
I went to the grocery store yesterday. Someone asked about Eliza and if she was crawling or starting to walk yet, if she'd gotten any teeth yet. She is a very nice lady. Her son will be 6 months on Christmas Day and is cute as can be. I am so happy that he is doing what he should be doing and getting teeth. He's a happy healthy little guy. But I didn't know how to answer her questions. Sometimes when you tell people that a baby is disabled or has a chromosome disorder (for many, like I used to be, chromosome is a fague word they heard in highschool biology a very long time ago), they just kind of stare at you with a blank look. I know what they're thinking, because I was there once too. So what do you say? I haven't figured that out yet. Maybe there isn't anything I can say that makes it easier for them to understand.  Many peoples' response is that her eyes are so bright and beautifully blue. I love it when they say that.
That got me to thinking though (again) about having a name for her deletion. I know that no one would know what it was or what the name brings with it, but still. We give names to the babies when they're born. Or even before they're born, I have always called them by their name. There are names for hundreds of other disorders/syndromes. The deletion she has is rare.  But aren't they all rare? And there isn't a whole lot of research out there becasue of that.
My little lady bug, whether she has a name to her deletion or not, is beautiful. She is slowly gaining weight and is slowly improving in her development. She is grabbing at things beside her head. Like if she drops a toy or even if we set a toy beside her head, she will reach up and grab it. And she will scoot herself up to something on her back. She doesn't roll or anything yet, but watching her try to wiggle her way around is very funny.  I have been trying to introduce foods and juice again. She still won't take any foods-her tounge just won't do what it needs to do yet. But that's OK. She did take a bottle of 1/2 juice 1/2 water this morning. Progress. Good progress.
I think this needs some pictures. But I need to be on the other computer to do that. Afterwhile.

Another trip to Omaha

2009-12-01T23:12:00.001-06:00

Today we made the treck back to Children's Hospital in Omaha, NE. We left 2 kids here because of ballet class, with a Grandma and the other 4 with Grandpa/ma in the city. Then headed out on the road again. We were blessed with beautiful, sunny, non-snowing weather. It seemed like we made it faster than normal, but really it took just as long.
The audiologist decided to forgo doing the ABR test today. Even though that's what we were supposed to be there for! She did the usual sounds testing instead. And talked to us about her ONE ear infection from the end of September. While she has been cleared of having ear infections by our regular doctors office, she may still have fluid built up on her ears.
The good news is that it may just be fluid built up in her ears. Which is totally fixable. We had another child who needed tubes put in and it did wonders for her. If this is the case, it will be much easier to deal with than having her be deaf. The tubes would hopefully clear out her canal and let them heal to be a normal hearing child. While there can be some damage from prolonged fluid build up, we are praying there is no lasting effect if fluid is the cause. The fluid would make it sound like she had her hands over her ears or like someone had their hand over their mouth while trying to talk.
At first I was really quite upset with her choice in testing today. But I didn't say anything in the office. We went all that way to do the same tests that we did here in town. I'm not sure why our local audiologist didn't just suggest the same thing. Seeing an ENT. Maybe she figured a second opinion would be good? I don't know.
What I do know, is that while I was waiting for Nate (he had to check on something for his boss while we were out that way), I heard something in my a head. Clear as day. "I (God) have gone before Eliza to take care of her." I do not recall where I saw or read it right now, but I heard it. So I grabbed my cell phone and her medical file and started making calls to schedule an ENT appointment and other various follow up appointments for the next couple of months. I felt much better after I had got everything set.
So now next week we will see the ENT and go from there. And we don't have to go all the way back to Omaha. Just to the city. I will have to figure out how to get 8 people there with only a 7 passanger van, but that will work itself out as well. After all, God has gone before to take care of her right?!!

Be still

2009-11-20T01:52:00.001-06:00

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

2009-11-18T17:40:00.002-06:00

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

2009-11-18T15:32:00.001-06:00

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?

2009-11-14T01:23:00.001-06:00

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...

2009-10-04T21:27:00.000-05:00

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

2009-09-24T00:32:00.000-05:00

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!

2009-09-24T00:02:00.000-05:00

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

2009-09-22T17:36:00.000-05:00

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!

2009-09-22T17:14:00.000-05:00

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

2009-09-06T21:48:00.003-05:00

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?

2009-09-04T13:56:00.003-05:00

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

2009-09-02T19:31:00.005-05:00

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

2009-08-28T21:54:00.006-05:00

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...

2009-08-13T16:46:00.002-05:00

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.

2009-08-11T14:47:00.001-05:00