Wednesday, December 31, 2008

Not normal

Lauren's Cat Scan came back not normal. I new for quite a few hours that it was not normal until I got official confirmation that it was not normal. It started in the morning when I called for the results and the nurse called me back. She said she would have the doctor call back. Usually, when everything is AOK, the nurse just tells you that on the phone or sends you a lovely form letter. My radar had gone up.

Then, during the ten minutes that I was at lunch, the doctor calls (doctors never call to say "hey, how you doing") and leaves a message saying that he was going to call my husband to discuss the results with him. There is no more frightening term in the English language then that. Your mind suddenly goes places where you don't want it to go.

Bob calls and the doctor leaves clinic to tell him that he thinks that Lauren has a cholesteatoma. It is a cyst that is basically made up of cholesterol and it sitting and putting pressure on her ear drum. This really could account for her balance problems. Surprisingly or unsurprisingly, which ever way you want to look at it, this thing is not in the place where if she is going to have one, it should be. I guess they didn't know that Lauren has never read a medical textbook.

They are going to schedule her for a MRI sometime in February. They had an opeing on January 7th at 5:00pm but you have to fast for 8 hours prior to the study. Bob nixed that idea quickly. They need more detailed pictures to see what it really is and where exactly it is. I need to get her MRI from last year so they have a comparison point. She might have surgery, she might not. It just depends on if the proposed benefits outweight the risks. If it improves her balance, I'm all for it.

In other news, her doctor's appointment was uneventful. They could rule out a certain metabolic disorder simply by looking at her. She does not have the facial features that are very obvious in that type of disorder. That disorder causes extreme chewing on fingers were kids can actually gnaw off their fingers. She's not doing that.

We discussed things and basically there are no answers. He suggested taking her to a dentist as she does appear to have some cavities. However, I just don't have the money for that right now. Most dentists are unwillig to take payment plans and want the money up front. We have no dental insurance right now but in September my plan will cover 100%. It will just have to wait until then.

The doctor apologized to me and said that he wished he could give me a solution or an answer. He wished there was a fix for this or a pill he could give her to make it all better. Sometimes there just aren't any pills and there aren't any easy fixes. I've come to learn that that's OK. I'm no longer looking for an answer or an easy solution. I've come to accept Lauren for who she is and what she can do. I strive to teach her to do more. I'm also trying to get her to change certain behaviors without changing who she is because I am all to aware that the world is not going to be ask accepting as we are.

The world is not going to allow her to be hyperactive. The world is not going to listen to her ramble on and on with loose associatons that no one can follow. The world will look at her strangely when she busts out with her hip-hop dance in the middle of the restaraunt. The world backs away when she tries to talk to you nose to nose. The world looks at me as a bad parent because I am powerless to stop this and sometimes don't even try. It's a good thing that I don't care about what the world thinks anymore.

Tuesday, December 30, 2008

Off to look for Zebras

There is an old theory in medicine that when you hear hoof beats you look for horses not zebras. More likely then not the hoof beats are going to be caused by horses and rarely zebras. In medicine, they assume a cough is from a cold and not some rare disease becuase it probably is just a cold. They think spots are problably chicken pox and not some rare skin disease.

It works for typically developing kids. However, Lauren is not. She's already riding on a zebra, not on a horse. Since we are starting out with something abnormal, when I call the doctor to inquire about her obsessive chewing I don't get a statement of "just try to distract her". I get a "let's bring her in IMMEDIATELY. It could be a metabolic problem."

As soon as I heard the word metabolic, I jumped to blood test. As soon as I thought blood test, I jumped to Cat Scan. As soon as I thought Cat Scan, I jumped to blown veins. As soon as I thought of blown veins, I thought of last week. As soon as I remembered last week, I thought this is not going to be good.

I've called her neurologist. I remembered that they did a whole bizarre syndrome work up (obviously not the medical term for it but they looked for every bizarre syndrome under the sun and found nothing) over a year ago. I'm sure that must have included something metabolic. Hopefully, the nurse can fax something to put her family doctor's mind at ease.

Otherwise, after the appointment, we'll be headed to the lab at Children's. They are getting pretty fond of us. I've nixed the doctor drawing blood due to a recent bad results of gettting a vein. Lauren makes pretty strong assoications with events and I don't want her to make that type of assoication at her family doctor. I'd rather save that for the speicalist.

Monday, December 29, 2008

Stop the chewing!!

Lauren, I love you baby girl. But please, please, please stop chewing things. I would love to have things without teeth marks. I would love for the toys that I got you for Christmas to be sans teeth marks. I loved the computer Grandma and Grandpa got you. It doesn't work because of your obsessive chewing behavior.

Lauren, I love you but please stop chewing things!

Thursday, December 25, 2008

Christmas fun

Ellie thought her best present was a hat, scarf, and glove set.


Shannon was not feeling good on Christmas but loved this hat.


A fancy Nancy game, Just what I always wanted!


Lauren opens presents.

Wednesday, December 24, 2008

A Cat Scan for Christmas

Lauren and I got to spend much of Christmas Eve Day at the hospital. She was scheduled for a sedated Cat Scan of her inner ears due to the balance problems she has. I will be shocked if they find anything wrong. When you are very impulsive and you don't think before you do anything, you fall alot.

The procedure was 5 minutes long. It was everything leading up to the Cat scan that was a big ordea. I knew there was no way in this univerese that she would be able to lay still in a big scary machine to get an accurate picture. I mean it's taking us two years for her to be able to get her blood pressure taken. She would have flipped out at the looks of the machine.

So, Lauren was the lucky winner of some sedation which has to be done through an IV. Did I mention Lauren hates needles? Did I mention she has had her blood drawn plenty? And had a lot of crazy procedures? Did I mention she is strong? Really, really strong?

Enter 4 nurses and mommy. It should have gone fine. I mean we have never had a problem with finding a vein. Why start now? Well, I guess Lauren figured that Christmas Eve day was as good as time of any. It took 4 sticks and an IV team to get an IV in. She has the bruises to prove it. I have the hearing loss to prove it as well.

After it was over and she was still out for the count, I had teh pleasure of rocking my 55 lb 5 year old. My big tough kidnergarten slept in my arms for over an hour as we rocked back and forth. I whispered to her how I much I love her and how she has changed my world. I whispered that while I didn't know what I was doing with her, God surely does. I told her that God has big plans for her life.

We just went on and on like that for a while. Then, some other kid got to come in for a sedated Cat scan and we got kicked out to MRI recovery. She eventually woke up after they washed her with cold water. I took her home and spent the next 4 hours curled up in a little ball.

I couldn't have asked for a better Christmas present.

Monday, December 22, 2008

Our year in Numbers

Miles moved-110
Boxes left to unpack- 7
New jobs started- 2
Kids in school- 2
Kids at home- 1
Months Shannon has been known as the baby- 18 and counting!
Trips to North Carolina- 1
Weddings attended- 1
New Family members we've acquired this year (by marriage) 1
New words learned by Shannon- 30
Letters Lauren can identify- 26 (15 upper case and 11 lower case)
Numbers of girl scouts in Lauren's Daisy troop- 7
Numbers of parties we 've gone to in our new neighborhood- 2
Times Lauren has said "Go Bucks"- 237
Times Ellie has worn her ballet skirt to bed- 329
Days Ellie has worn a dress this year- 342
Days we spent at the pool this summer- 52
Hours Bob and Kristin spent pushing kids in the swings- too numberous to count
Books we've read this year- 1052
Times we've seen a Barbie Princess movie- 239
Stitches received- 3 (by Shannon)
Urgent care trips- 4
Ambulance rides- 1
Broken bones- 1 (but in two places)
Number of football games watched according to Bob- not enough
Number of football games watched according to Kristin- way too many
Days we are thankful for what the Lord has given us- 365

Sunday, December 21, 2008

It is finished

Christmas shopping that is. I strive every year to keep things simple and practical. We decided that we would get each kid three presents to represent the gifts that were given on that very first Christmas. One is always a book, one is usually an outfit and one is a toy.

This year Shannon is getting bristle blocks (yes, they still make them), Ellie is getting an Easel, and Lauren is getting a Tag reading system that we hope they like.

I finished with the stocking stuffers on Saturday. They get an ornament, a tooth brush, a hat and glove set, and a my little pony (from McDonald's that I had to eat three Happy Meals for).

We try to keep things simple so we can concentrate on why we celebrate Christmas: God became one of us.

Saturday, December 20, 2008

Melatonin Overdose

Shannon overdosed on Melatonin the other day. The girls got into a bottle of Melatonin while Bob was taking a shower. It's a pretty harmless supplement and causes no ill effects except making you tired. Poison Control said we had nothing to worry about. She had a good sleep for two hours like this.

Friday, December 19, 2008

Last Day of school for the year

Lauren is marching off for her Christmas party today. She has 7, yes 7 gifts to pass out. I was scoping out her IEP to find the names of them.

She wanted to give one to her ELI (early literacy iniative) helper and we had to play a 20 minute guessing game with it. She kept saying Mrs. Mits. Is it Micks, Mitts, M, Mack? She finally spelled it out for us (literally) and we got Mrs. Smith. She is making such incredible progress this year. I am just utterly amazed at how far she has come.

Sunday, December 14, 2008

Do I believe what I say I do?

I've been thinking a lot about the last few years in of my life. I've been thinking about the journey I've gone on and what I've learned at what appears to be the end of this journey.

On October 10, 2003, my husband was arrested. I didn't know it at that moment but the events of that day changed the course of my life so much that I can now view my life into two chapters: before and after. A brief (OK very brief) summary involves Bob getting arrested, loosing his job, pleading guilty to a felony, not being able to find a good job, having a psychotic breakdown, loosing our house, moving in with my mother in law, loosing another job, and finally turning around and coming back to the city were it all started. Along the way our 5 year was dignosed with autism. However, I firmly believe that all the craziness had nothing to do with that and it would have occured regardless of what we did.

I learned a lot. I learned that some of the people that I thought would stand with me didn't. I learned that some people who I knew wouldn't stand with me, did. I learned that love is always a choice. I learned that forgiveness has very little to do with those who need forgiveness but instead is about those people that need to forgive. But above all, I felt that God was asking me one question: Do you believe what you say you do?

Bob was arrested and it could have very well deystroyed our marriage. I think that if I was to spell out my story to the world outside of the church and to the world inside of the church not many people would have blamed me for leaving. In fact, I think most people are shocked that I stayed. However, prior to October 10,2003 I would have told anyone that I believed what Ephesians 4:32 said:


Be kind to one another, tenderhearted, forgiving each other just as God in Christ also has forgiven you.

But I had never really had that opportunity to act out my belief. I had never really had a chance to forgive someone who had wronged me like no one else ever had. I had never had a chance to forgive someone was in such desperate need of forgiveness. I had never had the chance to forgive someone when the stakes were so high. In that situation, the choice to forigve or not was going to be the deciding fact of where our lives would go. Would we go on together or apart? Would we curl up and die in our bitterness and despair or would we be able to cling to the hope that we had in the Lord?

In the end, I couldn't forgive him. I couldn't forgive him because I am a sinful person. I couldn't forgive him because I like revenge and judgement. I was incapable of forgiving him. It's a good thing for Bob that God isn't like me. Christ in me was more than capable of forgiving him for that.

I had always believed that life begins at conception. I have always believe that God had a purpose and a plan for everyone's life. I have always been against abortion. It was never even an option for me. However, I had never had a chance to put those beliefs into practice. Then, I got pregnant. I got pregnant when I was unemployed, my husband was working at a horrible job and we thought the company was going under. We had inadaquate health care. I was living with my mother-in-law. I was beginning to think that there was something wrong with my oldest. I don't think I could have planned a worse time in life to have a baby.

At the end of the day, I believed what Psalm 139:13-14 said,

"For You formed in my inward parts You wove me in my mother's womb. I will give thanks to You, for I am fearfully and wonderfully made;"

Shannon is our joy and our delight. I often look at her and think how she is the evidence of our faith. She is here because Bob and I believed. We believed that God was faithful and in the end we see God's faithfulness in His many gifts.

It has been a long journey the last few years. I think, that this journey is coming to an end. We spent a lot of time in the valley. We spent a lot of time crying out to God. In the end, I'm able to answer His question with "Yes, Lord, I believe what I said I did".

Saturday, December 13, 2008

Breakfast with Santa

We went to our local high schools breakfast with Santa. It was really, really fun. There were pancakes and crafts. Santa was sitting up on a stage waiting for people to get there pictures taken with him and not walking around greeting people. That was really important for Lauren. At almost 6, she is still absolutely terrified of him. That's one of the many reasons we don't emphasize him during Christmas.

Eating breakfast





Doing crafts




Shannon hanging out during the craft time



Stop the presses a picture of the five of us (and proof that I was there)

Friday, December 12, 2008

Christmas Gifts Advice

During the month of December, DO NOT, I repeat DO NOT go and by yourself a present. It doesn't matter if it is a book, a movie, and Ipod.

It may not occur to you that someone has already purchased that gift for you and is eagerly awaiting giving it to you and seeing your happy face come Christmas morning. Do not take that away from them.

Merry Christmas Bob!

Thursday, December 11, 2008

An ornament thief

I keep finding ornaments scattered around the house. I think she might be the culprit.

Wednesday, December 10, 2008

Tuesday, December 9, 2008

I think she's smarter then me

I have this black lab ornament. We originally got it when we had a black lab but it it looks just like my parents' dog, Molly. Ellie calls it "Molly". Anway, Ellie was looking at "Molly" yesterday and took her off the tree. I said "Ellie, put her back. I think Molly was happy on the tree."

Ellie stares me down and says "Mom, she not real. She doesn't have feelings".

I think they are smarter than I am.

Monday, December 8, 2008

Shannon's new bear

My kids love their bears and also love Build-A-Bear. We've gotten them bears around the age of 15 to 18 months and the bears have been named Snuggy and Ellie-Bear. However, we know have a bear loving 18 month old without a bear.

I knew it was time when a few weeks ago we had to run into BAB for a second and she grabbed a teddy-skin and she hugged it and yelled "Ted-ey". Does it get more pathetic then that?

Shaney is now the proud owner of a fully stuffed Teddy Bear. She has the original name of Ted-ey.



Shannon gets a teddy skin



The girls (and Bob) making the Teddy.



Running away with a new friend



Loving her Ted-dey Bear



Our trio of Bear friends (from left to right, Snuggy Bear belonging to Lauren, Ted-ey Bear belonging to Shannon, and L.E. Bear belonging to Ellie)

Sunday, December 7, 2008

N-O-E-L???

We have stocking hangers that spell out NOEL. We also have one more with the word NOEL on it. We've misplaced the stockings but I think they might be at my mom's so I'm not buying replacements yet. The re-decoraters keep striking and I keep waking up to L-E-O-N. Hey, at least they are making a word.

Saturday, December 6, 2008

Snowball

I was tagged by my friend Joy.

1. Egg Nog or Hot Chocolate. Hot Chocolate of course. The person who had the idea to melt chocolate, put it in milk and heat it up holds a very special place in my heart.

2. Does Santa leave presents wrapped or just sit them under the tree? We don't really do Santa. My 5 year old is terrified of him and has passed on her terror to the others.

3. Colored lights on the tree/house or white? Actually, none as of yet. We just moved to this house in September and haven't got around to it yet. I think we'll go with white. They just appear to be so clean. However, I'll probably get what's really, really on sale after Christmas. The lights on the tree are white. It was one of the last ones on sale so I just took the first one I could get and didn't even read the box until I got home.

4. Do you hang up mistletoe? Nope, never have.

5. When do you put up Christmas decorations? The Sunday after Thanksgiving. We usually do it as a family and order pizza. We then have a birthday party for Jesus after that. We haven't got to the birthday party due to illness. Hopefully, next weekend.

6. What is your favorite holiday dish (excluding desert)? Stuffed cabage. It is a Polish food. My parents don't make it for themselves because it is a lot of work. All of my sisters love it so they always make it for us.

7. Favorite holiday memory as a child. The year of the fire. My dad was the service director of the city we lived in and one year there was a fire at the house. It was freezing and the water the fireman used cause horrible ice on several of the roads. He had to go out and oversee this. I remember waiting so anxiously for him to go home. It's not really my favorite memory. It's just my most vivid.

8. When and how did you learn the truth about Santa? I was 12. I found the receipts for a bunch of toys.

9. Do you open a gift on Christmas Eve? Usually not. I think the kids will this year. It will be Christmas PJs.

10. How do you decorate the Christmas tree? With the kids. We have a collection of ornaments that mean something to us... even if it is just some that we bought to "fill" up the tree the first year we were married. They are like old friends to me.

11. Snow, like it or dread it? I like it. I mostly like the crispness of the first snow fall.

12. Can you ice skate? Absolutely not!

13. Do you remember your favorite gift? The necklace my husband gave me last year. I wanted to return it because it was too expensive. However, I didn't and I was able to see the love it was given with.

14. What is the important thing thing about the holidays for you? That God became one of us. That He walked among us. I strive to see the shadow of the cross in the manger. Otherwise, it doesn't make sense and it is simply another story.

15. What is your favorite holiday dessert? Peanut butter blossoms. Just seeing them reminds me of Christmas.

16. What is your favorite Christmas tradition? The Jesus Birthday Party.

17. What tops your tree? A star we just bought today. We have misplaced our tree topper and the kids were complaining so I needed something now.

18. Which do you perfer giving or receiving? I love to give gifts to my children.

19. What is your favorite Christmas song? Mary did you know?

20. Candy Canes! Yum or Yuck? Yuck! I'm a chocolate kind of girl.

21. What do you want for Christmas? A season pass to the zoo. We only live 5 minutes away and I want to go alot with the kids.

22. Do you attend an annual Christmas party? I will do a lunch at work type of thing.

23. Do you dress up for Christmas or wear PJs? We will wear PJs in the morning. The girls will probably wear dresses. We'll just wear pants and a nice shirt.

24. Do you own a Santa hat? No

25. Who do you normally spend Christmas with? My family (life isn't fair). I love being with my sisters.

I don't have one to tag

Friday, December 5, 2008

Neuro update

took Lauren to the neurologist. It's not as easy as that sentence leads you to believe. See, we moved 1 hour and 45 minutes away from the neurologist. The neurologist that talks to her like a normal, typical everyday kid. The neuorolgist who talks to me like an educated mom who has a one child with autism and three kids 5 and under. The neurologist who said finally diagnosed her with PDD. The neurologist who said "let's do one thing at a time, that way we know what works". The neurologist who said "I will not give up until I can help her and you". The neurologist, who when I called crying in May because my husband had lost his job and we had no insurance, said "Bring her in. We'll figure something out. Remember, I get paid no matter what." The neurologist who got on the phone and researched prescriptions I could afford with all of the $4 programs. The neurologist who treats us like people and not like case studies.

An hour and forty-five minutes. that's nothing!

Wednesday, December 3, 2008

Ellie-isms

Every time, we walk outside Ellie yells "Mom, I need my hook up. I can't go out unless I get my hook up". I always make her day by hooking her up with putting her hood up.

She loves perpercorney pizza.

She says "Shaney loves me so much". It sounds so sweet until you see poor Shannon captured in the death grip of someone who had a two year head start on life.

We had an important conversation that quickly spiraled down.

Me: Were did you get those stickers?
E: At preschool. I was good listener.
Me: That's great. It's good to listen.
E: You listen at work. They give you stickers.
Me: Well, I listened but they don't give out stickers at my worker.
E: You no listen, you run around
Me: No, I listened. They just don't give out stickers to grown-ups at work. (thinking maybe they should)
E: No, you no listened. You a scary monster at work and chase people and try to eat them. You no get sticker like that

At that point, I was laughing too hard to continue this conversation

Monday, December 1, 2008

To me it's breath taking


To most people, it's just a Christmas tree, a not even all the way decorated Christmas tree. However, I look at in just awe.

To me, it is so much more then a tree. The ornaments are like old friends that I tought I would never see again. They were locked away in storage for so long.

We lived with Bob's mom for almost 3 years. I did grow to love his mom and I am forever indebted to her for her kindness. But her house was not mine. I was not in charge. I did not decide what or when to decorate.

This year I did. The day Sunday after Thanksgiving I was busting out with the decorations. We did it, we are finally home.