Ellie's journey...

Bus and plane pics.

2011-10-23T21:14:00.000-05:00

Kids were all smiles getting up very early to go to Disney!! Every morning for a week the first thing Nathan would ask me when he woke up is, "are we going to Disney today?" It was so cute. I was excited for the day to come where I could say yes. Then Ryan got him up that morning, but I caught a picture of his smile!!

Here is Ellie when I woke her.

Early 7:30am Sunday, Sept. 26th we were at the buses getting on to begin our vacation to Disney World in Florida!!

We all got special name tags which identified who we were and which bus we were supposed to be traveling on.

Waiting in line to board our first plane in Moline, IL to fly to Atlanta, Georgia. Ellie has her bag of goodies and games Remax Real Estate Company made for all the kids that were chosen for the trip.

Delayed airplane made us anxious to keep traveling. You can tell Ryan looks like he's just ready to get on with it.

On the plane excited to go!!

I love this picture of Ellie.

I noticed I started this a long time ago so I'll post this and try to get on here to post more pics from our Magical Mix kids trip to Disney a year ago.

Long overdue update

2011-10-23T21:06:00.000-05:00

Well I see I haven't posted since August. Ellie had an MRI two weeks ago and it was clear! Praise God for good results!! Next Month we take her to Iowa City for potentially her last eye appointment for a long time. Since the last time we went they decreased her patching to 3 hours a day. So we have done that for 3 months. Hopefully her eye sight stayed at 20/25 and we can be done patching. It seems her eye is staying pretty moist itself. She still gets eye drops every two hours. The doctors are hoping to be able to reduce that amount also. Her eye has been looking great! Life seems much more normal finally. Only doctor's appointments every 3-4 months has been nice. Ellie's school year has started out great! She's still loving it!

Nathan is good at daycare/preschool also. I joined his class on a fun trip to a pumpkin farm last week. Fun times! He is POTTY TRAINED!! We LOVE IT!! He was ready for sure!!

Ellie's birthday is coming up and she is super excited! Already making lists of adults and kids she wants to invite. She just can't decide what she wants to do. Possibly another swim party. She decided to ask for donations for the Ronald McDonald House again this year.

Happy fall everyone!! I give thanks this Thanksgiving for all of you, your support and your prayers. LOVE YOU ALL!!

Great news!

2011-08-05T20:25:00.000-05:00

Well we have been two Iowa City multiple times since my last post. This last time, two weeks ago, was great news! Ellie had been battling a big red spot on her eye and the eye doctor brought in a specialist to look at it and he said she had a flick tenule. What does that mean you ask? It's inflamation and needs steroids and antibiotics for treatment. So we got put on more eyedrops and different ointment at night. This is good news because we figured out the redness isn't from dryness! So we can back off from eyedrops every hour to every two hours and see if the dryness is ok. The other news was better news!! She got 20/20 minus half the line when looking through a black thing with lots of tiny holes!! She hasn't ever been to 20/20 yet. Without the black thing with holes she got 20/25 minus half the line. This was good improvement! Exciting! So we have been patching still and hope to get better results when we go Thursday to Iowa City to check the flick tenule and eyesight. Hope to get better news. Her eye isn't red anymore so the meds have helped.

We had a great time at Relay for life of Black Hawk County!! The kids had fun with family and the UNI Volleyball team. We got great pictures I'll post when I get them scanned into the computer.

This labor day weekend we get to go to family camp at Village Creek Bible Creek! We are looking forward to a fun weekend there!

Ellie is our brown little raisin minus the wrinkles. She has been at Camp Cedar Falls all summer and swimming two times a week. Her hair has lightened also. This last week they got to go to Lost Island in Waterloo alone with two days at The Falls. She is waterlogged and happy to take a break from swimming.

Now school starts on the 17th and she is excited!! We are getting some tax free weekend shopping in this weekend to prepare for school. I'm glad this return of the 80s fashion hasn't sparked Ellie's eye. YIKES!! is all I have to say about that.

Thank you all for your continued prayers for her progress!

MRI coming up

2011-05-30T20:31:00.000-05:00

Sorry but this is going to be a quick update. I know it's been a while but I'll get back on later this week. Just wanted to let everyone know a couple things;

We will be participating as Team Ellie again this year in Relay For Life Black Hawk County June 17-18. If anyone is interested in joining us or donating please let me know and I can help get you where you need to go. Or you can get info on the Relay for Life Black Hawk County webpage: http://main.acsevents.org/site/TR?pg=entry&fr_id=29905

Ellie has an MRI this week Wednesday, June 1st. We will give you an update on that and her eye progress soon!

Hope everyone had a fun and safe Memorial Day weekend! WE DID!!

eye update!

2011-04-25T18:09:00.000-05:00

Today we went to Iowa City for a one month update to see how patching is going. We weren't sure what to expect because a couple weeks ago when we did the computer eye exam she got a 1 in her left eye and a 4 in her right eye. 1 is the best and 5 is the worst. After this I didn't have much confidence we were going to get good news today. But we did!! Her left eye is still 20/20 and her right eye is now 20/25. The best it has ever been since brain surgery is 20/30. This patching is working great and she has been such a good sport about wearing it. She has pretty patches that she tries to match to her clothes every day. We go back in another month, on May 25th, to see if there is more improvement.

After appointments we usually go to the Coral Ridge Mall for Ellie to play in the kids play area. By the end Ellie usually asks to be carried on Ryan's shoulders. Here they are as we walk out.

pirates and birthdays!

2011-03-30T21:45:00.001-05:00

I wanted to share something cute that happened Tuesday night. We went to dinner with my parents and Javier, Stephanie, Hudson and Tenley. When Hudson saw Ellie wearing her eye patch he quickly handed out pictures he had colored for us and said pirate when he handed Ellie's picture to her. Then he quietly said to Stephanie that he wanted to be a pirate like Ellie. I thought it was so cute. I hadn't thought about Ellie being a pirate. Ellie didn't have any response when Hudson said he wanted to be a pirate like her. She doesn't think it's funny and it doesn't make her upset. Kind of odd to get no response from her about something.

Ryan gave me a card this morning and it was hilarious so I wanted to share it.

For my wife on her birthday.
The top 10 things I don't say often enough...

10. I hate to miss the game, but this floor could really use a good scrubbing.
9. Why don't you buy a nice new pair of shoes to go with that outfit.
8. Let's rent a romantic movie. If I see one more car chase, I'm gonna hurl!
7. Yeah, I'm pretty tired, too, so let's just cuddle.
6. Why can't they show real-looking women in those lingerie catalogs?
5. My thumb's getting tired. Would you mind holding the remote for a while?
4. I'm not sure we've seen enough family lately.
3. You got enough blankets over there?
2. Sure, I'll be glad to hold your purse while we're standing next to this construction site.
1. I'll love you forever! (and I sure hope you know it!)

This was funny to me.
It was nice to start my day off laughing!

I did have a spectacular birthday! I took the day off to pamper myself since I had some gift certificates to use up. I got a pedicure with a friend Hannah, then had lunch with Hannah and Collette, visited Ellie at school for a little while then went to a massage! The whole day was wonderful. Ended it with a fun evening outside on this beautiful day with the fam. It was a blessing to have Facebook today also. So many friends wished me a happy birthday. It made me feel so loved and special. Thank you all, everyone out there, thank you!

Happy 76th Birthday Dad on Thursday, March 31st

Happy Birthday to Ellie and Nate's cousin Ethan on April 1st!
and Happy Birthday to Hudson on April 9th!

Nathans

2011-03-30T21:20:00.000-05:00

I started this a few days ago but didn't have time to finish so now I will and finally post it.

16 years ago on March 26, 1995 Ryan lost his best friend Nathan Bertram. This is a picture of Nathan. From that day forward Ryan and I became close friends. When we were married and talked about names for our children, we decided to name our boy after his friend Nathan Bertram that died. So that is how we get to our Nathan. We miss you Nathan and always think about you when we see eagles or hawks.

Who is visiting my page?

2011-03-26T16:24:00.000-05:00

I put a Live Traffic Feed gadget on the blog and would like to know who in particular is visiting from places like Baxter, Iowa, Decatur, IL, Alabama and other exotic places likes that. When you visit can you please post a comment and let me know who you are. I know there are so many people I don't even know following the blog but I would like to know how you came to follow our familie's story. Thanks so much for your cooperation!

Patches, patches, Ellie's eye patches

2011-03-26T16:06:00.000-05:00

We headed to Iowa City Friday hoping to see more improvements in her eye sight. We hoped we could do less days of atropine, dialating drops. This wasn't the case however. Her eyesight was the same or slightly worse. 20/20 in her left eye and 20/40 in her right eye. Last time she had 20/35 in her right eye. Anyway, they thought maybe atropine had done all it could do for Ellie so the next thing is patching. The good eye will get the patch on it so the weak eye has to do all the work, all the time. So Ellie is going to wear a patch on her left eye all the time for 4 weeks. She will be checked in a month to see how the progress is going. Patching 100% of the time is supposed to have quick results. She is also a part of a study for patching now. So during the month we are to do an eye test online to see how it's going partway through and if it varies from what they find in the clinic. They had some way cute patches for Ellie to take home and wear. This makes it easier for her to agree to wear them. We are also doing an incentive calendar. A sticker each day she wears it all day and doesn't take it off or mess with it. She is rewarded at the end of each week.

Here are pictures of her the first two days. She wanted to put a patch on the eye of her kitty stuffed animal so it could be like her. At least she is taking it well right now and still smiling. She wasn't embarassed to go out in public with it today. She was embarassed and wouldn't go to the UNI Panther Sports camp with it though. I really hope this isn't going to make her less social. She says she won't be embarassed by it with people she knows. We will see!

She told me this afternoon that sometimes she forgets she is wearing it.

March 25th Eye appnt.

2011-03-21T12:47:00.000-05:00

Hi all! It's been a long time since I have updated, because not much has been going on other than living everyday life. This Friday, March 25th, Ellie has an eye appointment in Iowa City. We have seen much improvement in her face and eye movement since the May 2010 nerve graft surgery. We are praying all these atropine, dialating, drops has continued to improve her vision strength. We did see a nice improvement last time so we are hoping to see 20/20 in both eyes and possibly cut back on atropine drops a couple days a week. I will update after the appointment.

Ellie is also improving in her reading skills. She had fallen behind in reading so her teacher has been spending more time with her before and after school to get her caught up. Now a past English teacher both Ryan and I had in middle and high school is going to start helping Ellie one morning a week at school to help her teacher out. Sooo Ellie's teacher reported to me a couple weeks ago that she is improving but has more to go still. I was happy to hear this!

God is good!!

2011-01-26T17:20:00.000-06:00

I am happy to report Ellie had good reviews from her MRI yesterday. Both doctors today were very happy to see the MRI clear! Her oncologist said her brain/brain stem is starting to move back into the area that the tumor was in. This is something that is normal. She passed all the physical exams they did with her to check her strength. Not much else to report but that all is good! God is good, we are so thankful and happy!!

MRI Tuesday

2011-01-24T11:35:00.000-06:00

Ellie has another update MRI tomorrow, Tuesday, Jan. 25th at 7:30 in the morning. We will be headed there bright and early in the morning. Then once she wakes up she is good to go. We will then return Wednesday for the Dr.'s appointments to get the results of the MRI from her radiation oncologist and see the Otolaryngologist because he wants to see the MRI pics of the nerve graft surgery.

I am calm and confident about this because all others have been with good results. We hope this will be the same good results. Continueing to pray about it though.

I will update Wednesday after we get results.

Being Thankful!

2011-01-24T11:30:00.000-06:00

I AM THANKFUL:

FOR THE WIFE

WHO SAYS IT'S HOT DOGS TONIGHT,

BECAUSE SHE IS HOME WITH ME,

AND NOT OUT WITH SOMEONE ELSE.

FOR THE HUSBAND

WHO IS ON THE SOFA BEING A COUCH POTATO,

BECAUSE HE IS HOME WITH ME

AND NOT OUT AT THE BARS.

FOR THE TEENAGER

WHO IS COMPLAINING ABOUT DOING DISHES

BECAUSE IT MEANS SHE IS AT HOME,

NOT ON THE STREETS.

FOR THE TAXES I PAY

BECAUSE IT MEANS I AM EMPLOYED.

FOR THE MESS TO CLEAN AFTER A PARTY

BECAUSE IT MEANS I HAVE BEEN SURROUNDED BY FRIENDS.

FOR THE CLOTHES THAT FIT A LITTLE TOO SNUG

BECAUSE IT MEANS I HAVE ENOUGH TO EAT.

FOR MY SHADOW THAT WATCHES ME WORK

BECAUSE IT MEANS I AM OUT IN THE SUNSHINE

FOR A LAWN THAT NEEDS MOWING,

WINDOWS THAT NEED CLEANING,

AND GUTTERS THAT NEED FIXING

BECAUSE IT MEANS I HAVE A HOME.

FOR ALL THE COMPLAINING I HEAR ABOUT THE GOVERNMENT

BECAUSE IT MEANS WE HAVE FREEDOM OF SPEECH.

FOR THE PARKING SPOT I FIND AT THE FAR END OF THE PARKING LOT

BECAUSE IT MEANS I AM CAPABLE OF WALKING

AND I HAVE BEEN BLESSED WITH TRANSPORTATION.

FOR MY HUGE HEATING BILL

BECAUSE IT MEANS I AM WARM.

FOR THE LADY BEHIND ME IN CHURCH WHO SINGS OFF KEY

BECAUSE IT MEANS I CAN HEAR.

FOR THE PILE OF LAUNDRY AND IRONING

BECAUSE IT MEANS I HAVE CLOTHES TO WEAR.

FOR WEARINESS AND ACHING MUSCLES AT THE END OF THE DAY

BECAUSE IT MEANS I HAVE BEEN CAPABLE OF WORKING HARD.

FOR THE ALARM THAT GOES OFF

IN THE EARLY MORNING HOURS

BECAUSE IT MEANS I AM ALIVE.

AND FINALLY, FOR TOO MUCH E-MAIL

BECAUSE IT MEANS I HAVE FRIENDS WHO ARE THINKING OF ME.

Live well, Laugh often, & Love with all of your heart

mom update

2011-01-16T17:54:00.000-06:00

My last entry was about my mother being in the hospital. Well Monday, January 3, first day back to work after the holidays, she felt like she was having a heart attack while she was driving to work so she went straight to Sartori ER. They saw she was having a heart attack and sent her by ambulance to Covenant. The hospital called me while she was on her way to Covenant and I headed there right away. It so happened that I met the ambulance at Hudson Rd. and hwy 20, then I had to pull over so the ambulance transporting her could go by. This was a wierd experience. Covenant was so fast helping her that by 9am she had a stint in already. Thanks to great care and fast help she is doing great now!! There is minimal damage to her heart and she is headed back to work Tuesday. Thank you all for your prayers and thoughts.

update about my mom

2011-01-05T21:58:00.000-06:00

Just wanted to let those who are waiting for an update about my mom to know she was discharged from the hospital Wednesday midday and is doing well. Resting a lot and will be doing some rehab for strengthening. Thank you all for your prayers. I will post details for those of you who don't know what is going on after I ask my mom if I can. Take care!

FeLiZ aNo NueVo!

2011-01-03T22:25:00.000-06:00

Merry Christmas and Happy New Year!!

We had a truly wonderful Christmas. Restful and fun! No hustle and bustle. Just taking our time through all the gatherings. We are blessed to have Ellie another year and great to have all our cousins and family so close. We had a new addition to the Mercado side of the family! Tenley Olivia Mercado was born to Javier and Stephanie and joined her big brother Hudson Dean! She is absolutely precious and adorable. She was born healthy on December 12th, the day before my mom's birthday. We are happy she made it for Christmas and New Year! I think Javier and especially Steph were ready to meet her. Sadly we haven't seen Emily, Jesse, Ethan and Haley yet but soon we will be able to give them their gifts.

We hope everyone's Christmas and New Year was safe and joyous!

Eye appointment update

2010-12-30T21:37:00.000-06:00

We went to Ellie's eye appointment in Iowa City on the 20th. So we got good news! Her eye has improved considerably. She is seeing 20/30 out of her right eye which is the one we are trying to get back to 20/20. It's so close. Her left eye still sees 20/20 when it's not dialated. But we dialate it every day so the right one can work hard and improve. So he said her seeing 20/30 should not be affecting her learning like we thought it was. Now I'm sure it's hard to see out of one blurry eye and one clear eye. The past year and a half of school with her eyes this way has probably hindered her learning some but the doctor doesn't think this is a huge problem and shouldn't be keeping her from learning. So we don't have to decide to stop treatment and get her glasses or keep treating and deal with her struggling at school. This was a decision I didn't want to make.

So we know it's probably a combination of eyes, hearing and possibly some learning problems that has kept her behind, or not learning at a speed as others. It's ok, there are options for her so we will just get her set up with some special learning and she'll hopefully ge caught up!

Thank God for the answers!

Elf Yourself

2010-12-17T22:16:00.002-06:00

My brother did this on his facebook page with him and his son Hudson so Ellie and I made one with our family plus Mickey Mouse. Hope you enjoy! It's fun! You should try it!

Thank you

2010-12-15T20:17:00.000-06:00

Thank you all for the kind words of support after my last post. Everyone said something that was encouraging and very helpful. I know God has put you all in my lives to say the perfect things at the perfect times. Thank you again!

8 month check up with Otolaryngologist

2010-12-14T20:48:00.000-06:00

So we made another trip to Iowa City today. It has been 7 months since the nerve graft surgery. Dr. Gantz was hoping to see improvements by now and he sure did. First we were visited by a resident and he did some tests on Ellie and looked in her ears and stuff. We got to see inside Ellie's ears while he was looking in them with the camera. I was nervous we'd see a bunch of wax but we didn't, her ears were clean! Her ear drums are looking healthy also the doc said. Anyway... Ellie was in a goofy mood so she decided to hide from Dr. Gantz behind me in the chair. So Dr. Gantz found her and she hopped up in the chair to make all the silly faces he asked her to make. He was so happy to see her progress. He was smiling, excited and so happy! He went to get Dr. Mowery, the lady doctor that has a fellowship with him now, to show her Ellie's progress. It was nice to be at an appointment where a doctor was celebrating about how well things are going instead of talking about what needs to still improve. It was really neat to see a world renouned doctor celebrating over one of thousands of successful surgeries he has had. I could tell he has his heart in his work. It's really heart warming to see a doctor this way. Praise God for a wonderful appointment with wonderful progress!

Now Monday we got to a stressful appointment. Ellie has to see the eye doctor. This one isn't as good news because her eye sight in her right eye hasn't been improving like we hoped so we are going more frequently to address this issue. Her poor eyesight has hindered Ellie's learning we think. The teachers think this because she isn't picking up on her letters, reading and math as well as they would like to see. She also has trouble hearing sometimes which hinders her learning also. She has started going early 3 days a week to get one on one help with reading. It hit me hard again when after conferences we learned Ellie was having trouble and it was due to her health concerns. They got the tumor out and all, I can't be more thankful of this, but now her hearing loss and eye sight is hindering her learning and she is going to have to deal with this for years I'm afraid. I just wish she didn't have to deal with this. It's hard to hear her say she doesn't like school because it's hard. It's hard to see her not want to try to read with us at home. She wants me to spell things for her instead of her figuring it out. She is struggling and this hurts. She is only in her second year of school and this is the foundation of her future years of school. I fear if school is too hard for her now and she struggles every day she is not going enjoy school in the future which will only keep her behind. The doctors said they can work on her eye sight weakness until she is 9 years old until they just give them glasses and live with the sight she has. I can't do this for three more years of fixing her eyes, 3 more years of her having blurred vision and risking her learning. That would be five years of school and too much of a foundation to loose interest and I'm afraid it will affect her for the rest of her life. I want a strong foundation where she can see well and hear well so she can learn well and enjoy school. So this is what we will be talking to the doctor about next week. Please pray for us as parents to have the insight needed to make decision for Ellie's best interest. Please pray for insight on the part of the doctor's to offer the right solutions to work toward Ellie's restored eye sight. Pray for improved eye sight for Ellie so we can stop dialating her good eye which makes her see out of two blurry eyes. I can't imagine the blurry life she lives and it makes me sad thinking about it. This has got to be hindering her learning of her letters, words and math. No child deserves to go through this and Ellie's condition isn't even that bad compared to other kids.

Well this was a good day and this started out a happy blog but now thinking about the appointment coming up where we always get news that there needs to be improvement it's ended in a bit of sadness for me. Thanks for giving me a chance to process my joys and my sorrows with you. Thanks for letting me be vulnerable and supporting me/us after you read my thoughts. I am so grateful for Ellie's health but seeing your child be so healthy and still have problems that's affecting her learning, which then affects her whole future school life, due to the health issues is very hard for me some days.

In January on the 25th we have another follow up MRI and we return on the 26th to get the results and see her oncologist Dr. Bautti and her otolaryngologist, Dr. Gantz, again. Now we have to do the MRI on one day and get the results on another because Dr. Bautti changed his clinic days, which are not days they do children's MRI's with anesthesia. Do they realize this means families have to wait 24 hours to get results of their child's MRI's. I foresee this being very hard. So we have to miss two days of school which further puts her behind which stresses me out even more so I'm going to stop now.

Good night.

Here is a picture of Ellie's standing by a huge Christmas Tree in the Coralville Mall today after her appointment. I like how well you can see her smile coming back. I love it!!

Anybody want to spend some hours each week with that pretty face, Ellie, during the summer days working on reading and math skills to get her caught up to second grade level? We have fun games and activities for her to practice with. :) Yes I'm thinking way ahead... sorry.

Magical Mix Kids website

2010-10-22T23:07:00.000-05:00

At this link you can see a group picture of most of the kids that went on the trip to Disney World this year. Ellie is in the lower right side of the picture with Minnie ears on. Nathan decided he didn't want to sit to be in the picture. So he missed out. http://www.magicalmixkids.org/ Enjoy!

Grand news!!

2010-10-22T22:47:00.000-05:00

Lately Ryan and I have been noticing a slight change in Ellie's mouth, cheek, etc. There isn't as much drooping of her right side. So Tuesday I asked her to try to move her mouth by pushing her tongue on the inside of her lower right jaw. She did and I saw the corner of her mouth move up slightly. So the good news is that the nerve graft surgery is now taking and she is able to begin to move her mouth. The doctors say it will just take time and practice to see more improvement!! This is so exciting to see, only five months out of surgery.

MGM Hollywood Studios

2010-10-18T18:11:00.003-05:00

MGM Hollywood Studios is where we spent Tuesday. In the morning there was an opportunity for the families to see the radio station and speak about the trip. So we waited our turn and Ellie did a great job talking. I was sure she'd be too shy but she shined! This is Ellie looking at a park map before her turn.

Also on Tuesday was the Mickey character greeting. This is where the kids got to meet Mickey and get pictures with him. Here is the fam with Mickey.

Ryan, nurse Ann Marie and Dr. Kim Neumann visiting with us while we waited our turn to be on the radio.

I caught a picture of Ryan wearing Nate's pirate Mickey ears.

Daddy and his princess in her Minnie ears.

All the kids with Mickey. Nate didn't want to stay in the pic.

We went on the ride called the back lot tour, or something like that. So these are wierd looking props used in past movies.

We saw Mike from Monsters Inc.

Miss Piggy's fountain.

Lightening McQueen and Tow Mater.

The monsters were at this part of the Block Party we saw right before a rain storm that stuck around the rest of the afternoon. This started as a parade, then stopped and it turned into a block party with trampoline stunt people, dancers and green army G.I. Joe guys. Other parts of the parade/Block party had different characters to enjoy. This was a very up beat musical party that was prety fun!! At the end they threw balls at us for the kids.

We found a building to get in out of the rain and it had many many characters that all changed every half hour. Here is Handy Manny. One of Nate's faves!

Ellie got so excited jumping for joy when she saw June and Quincy from Little Einsteins. She used to watch these guys every morning and weekends. She loved this cartoon. Her pics with Annie and Leo didn't turn out clear.

Characters from The Incredibles. We haven't seen this movie though.

                    The wonderful Snow White!

                  Mary Poppins and penguins.

                              Chip and Dale

Mulan.

We saw a stunt show where this red car races around this set being chased by four black cars. This is the end where they reveal that the red car is really 3 red cars adapted in different way to drive backwards and split in half the long way with a driver on the outside.

On the Back Stage Tour ride we went into a cave and saw this truck sitting up there. Then a fire began and explosions....

...then water came rushing down...

...and over us. Thankfully we didn't get wet.

This is the stunt car jumping.

Hollywood Studios was a place we could have spent two days. There were so many great shows to see here we didn't get to do it all.

Animal Kingdom

2010-10-16T21:59:00.000-05:00

Thursday morning was our group's character breakfast at a restaurant at Animal Kingdom. We saw Donald outside then inside while eating Mickey, Goofy and Daisy came by for individual visits to tables. It was yummy food and fun for all. Then we spent the rest of the day at Animal Kingdom. I loved this park. The 3D shows were fun and great. The live shows were amazing also.

Ryan being silly trying to give Ellie a kiss for the pic but she's trying to get away.

Ellie and Luanne. Luanne was our chaperone that checked in with us and helped when needed.

On the truck getting ready for the safari ride to see animals!

Another breakfast pic.

A few of the animals we saw on the safari.

The tree that was intrigueing to look at.

A humongous bat sleeping hanging upside down. This was wild to see all the bats hanging upside down.

Now you will see an assortment of pics of Ellie and Nate wanted to take posing around the park. Some are really funny...

...like this one.

Now Nate wants a pic by himself like Ellie had. Look at those eyebrows. Daddy's prominant eyebrows.

The 3:00 daily parade was amazing. Here are just some of the pics I took.

Amazing costumes these people walking on stilts are wearing.

Elaborate bikes the front people were riding. Beautiful work.

Mickey's truck.

Goofy's truck.

Mickey's Jammin' Jungle Expeditions.

Nate thought Ellie needed a hug I guess. It was so sweet. Gotta love the goofy hat he insisted on getting.

Oops another breakfast pic.

The Animal Kingdom entrance.

Around the Movies Resort pics

2010-10-16T20:43:00.000-05:00

So we stayed at the Disney All-Star Movies Resort instead of the Music Resort like I posted earlier. They told us wrong the first time. We weren't at the resort much but we enjoyed it while we were there. The Love Bug buildings were way at the end of one of the wings of the resort. So we had a long walk to the main bldg to eat and go out or get free drinks in the mug. We planned well and didn't have to walk back and forth much at all. The other building themes that I can remember were The Mighty Ducks, 101 Dalmations, and Fantasia.

Nate lovin' his unicorn lolly pop while watching cartoons.

Small salt water pool.

Broomstick entrance to one of the Fantasia bldgs.

Kids eating unicorn lolly pops.

Entrance to The Mighty Ducks bldg.

Tools on the side of our Love Bug bldg.

The side of our Love Bug bldg.

Our traveling t-shirts

Kids by Herbie

Entrance to the Love Bug bldg acrossed the courtyard.

Ellie by Daisy.

Nate by Donald.

Ballerina on the side of the Fantasia bldg.

5 Days 'til Disney!

2010-09-20T19:30:00.000-05:00

We are getting pretty excited for Disney World in Florida!! We have our suitcases out and started packing breakfast and snack items! They give us 2 meals a day and 1 or 2 snacks so we are bringing breakfast items so we can eat it in the room in the morning, fast and easy. Ellie has been counting down on a calendar we posted. She is excitged to cross off the day every night. We are making last minute purchases of little things so we are well prepared. Ellie was given a bag of goodies to take for traveling. Games and coloring things to keep her busy on the busy and plane rides. There are 75 total people going consisting of a doctor, nurse, chaperones and the families chosen to go. We found a journal with Mickey Mouse on it so Ellie can document her trip. We are going to get signatures of characters, take pictures and write down her favorite activities each day. Should be a neat little book when we are done! If I can get pictures posted while we are there then I'll get them on right away. It may have to wait if we don't have easy access to a computer. You can check out facebook though. I can easily send pics there from my phone/Blackberry. The pics will show up on my wall and in the mobile uploads folder. ttfn!

Volleyball team update!

2010-09-06T12:29:00.000-05:00

Well we have been following the UNI volleyball team closely since Ellie has been adopted by them. We have gotten to join them at practices and evening activities some. Last weekend they went to Indiana for a tournament and won 1st place! This was exciting because we got to listen to it on the radio. It was neat hearing their names being said and actually knowing who they are. This past weekend they went to Minneapolis for a tournament and tied for 1st place! Another great victory! This week they head to Ames and Kansas for another tournament. We hope to find it on the radio again. Most of all we look forward to their first two games at home Sept. 17th and 18th. We will be there!! Congrats to all the ladies and the coaches so far. It's been a great start to the season!!

Below is a picture of the locker they gave to Ellie! It's so neat. She's excited to put things in it.

More good news

2010-09-06T12:18:00.001-05:00

Wednesday, September 1 we went to Iowa City for another 4 month MRI check-up. We got good news again that her MRI was clear and nothing to worry about. We are so happy and relieved for this news again. We spend the four months enjoying our time and focusing on school with Ellie but then the one day we have the check-up the stress and anxiety comes back. Then after good news we return home to more everyday things. Her next check-up is Sept. 16th at the eye doctor in Iowa City. We hope to find out her vision is almost the same as in her left eye so we can back off of atropine drops to a few days a week instead of every day. Her eye seems to be closing a bit more and keeping moisture in better because her eye doesn't get as red so often anymore. This is nice.

Ellie is enjoying school so far. She is in the combined first and second grade classroom with Mrs. T and Mrs. S as her teachers. We like her teachers a lot. The teachers at Price Lab care about the kids so much. It really gives us peace of mind to send her there every day. Ellie has spelling lists every week now. For her first week and test she got 6 out of 6 correct! We are proud of her because we forgot to practice her words every night except one. We have to get used to this home work stuff again.

Nathan is doing better also. He doesn't cling to me anymore when I leave him at Son Rise for daycare. He hasn't fussed or anything all last week. Also when I pick him up he is very happy to see me and comes running and giggling over to me. I think he's not in competition for my attention anymore since Ellie has been in school. He is sill his 2 yr old self with struggles for independence and telling us he's mad when he doesn't get his way. We continue to correct his bits of hitting or flinging his arms at us but his is typical 2 yr old stuff we will get a handle on.

We are all looking forward to Disney World in a few weeks. On the 12th we get to meet the other families and get details about the trip!

Ta Ta For Now!

Biggest news from this summer!

2010-08-23T19:03:00.000-05:00

We had a fun summer but it went way too fast. Every year seems to go faster and faster. The biggest news to share is that Ellie was chosen to go on a trip to Disney World in Florida this September with Magical Mix Kids. She gets to take us with her! So leaving Sunday, Sept. 26th we will head out of town with a group of 14 families who qualified, Magical Mix leaders, one doctor and a nurse to Moline to catch a plane to take us to Disney All-Star Music resort in Florida. I am so excited! Ellie is so excited! This is such a neat opportunity. WE CAN'T WAIT!! We will return Friday, Oct. 1st. We get to enjoy four parks in four days. Sounds busy and tiring. There are a couple pools at the resort to relax by which will be much needed by the end of the day.

Disney World

Epcot

MGM Studios

Animal Kingdom

We are going to have to plan our days carefully, but with the help of a Disney book from friend Jenny and free maps I ordered online highlighting what I think we would enjoy, we should be good to go. I'm picking up tips from those experienced at Disney so if you have any please leave a coment or email me with your tips. I have been a few times when I was a little girl so I have memories but I wasn't in the planning position then. So I want to make the best of the four parks. I'd love to hear tips if you got any.

Disney All-Star Music Resort

This is a picture of the resort! I can't believe how these All-Star Resorts look. They are overstimulating to me just looking at them in the pictures. I'm wierd that way.

This is part of the guitar shaped pool where there is also a baby pool area.

Here is what they say is the quieter pool the grand piano pool.

Thank you Magical Mix Crew for choosing Ellie/our family to go on your trip. We are truely appreciative of this vacation much needed for our family. So... that's all for now. I'll update more about our summer, hangin' with the volleyball players and first days of school. Toodle-oo!

Award pictures

2010-06-01T21:13:00.000-05:00

This is Ms. Kelso giving Ellie the $100 for the award. Ms. Kelso is the mother of the boy who died but her family gives out an award for courage to one student each year. Her son loved to shop so she gives them money to shop. Ellie also likes to shop. She bought some summer sandals, bathing suites, Barbies, flowers for Grandma and still has money left.

This is Mrs. Bromwich, Ellie's teacher giving Ellie a hug.

This is a blurry Mrs. Bromwich reading a little about Ellie before she gets the card and money. On the big screen in the back is Ms. Struck looking down. She met with Ellie weekly to help her process and deal with all that she went through. I saw a huge difference in the way Ellie was talking about, expressing her feelings and dealing with the fears of the hospital trips. Thank you so much Ms. Struck, you played a huge role in Ellie's recovery. We couldn't have done it without you and many others. Ms. Struck was at her son's graduation from law school this day so she pre recorded a message and introduction about the award, then named Ellie. Part way through her talk Ellie realized Ms. Struck was talking about her and turned to me and asked if she was talking about her. I said yes, then Ellie turned to her friend Ahmad next to her and his mother and said, "She is talking about me!" It was so cute when she recognized. Then Mrs. Bromwich came down the aisle to get Ellie with a huge smile and Ellie went right up with her. It was quite emotional. Lots of us had tears. I was shaking taking these pics. Hence their blurriness. sorry.

This is a picture of the little boy that died and that the award is named after. Scott Paul Weston.

Pics of people that came. I didn't get everyone though. Sorry I missed some of you.

This is Ms. Bigler, one of the nurses that took such good care of her all year. Ms. Bigler and Ms. Christiason did a wonderful job. Thanks to them also.

Here is Ellie with her teach Mrs. Bromwich.

Here are Ellie and her good friend Abbey.

...and Nathan pooped at the end of the day Sunday. I thought this was so cute. Had to include it.

Stitches out

2010-05-23T21:45:00.000-05:00

Here is what Ellie's scar looks like. Looks so great already. We are quite happy and amazed how good it looks! We do have to keep sun block on it every day for the next year. Something else to add to the morning routine of eyedrops etc.

I'll blog again when I get back from Cali, unless I have something to blog about while I'm there. Have a great week yall!

She's a strong girl

2010-05-22T21:01:00.000-05:00

Well getting stitches out went very well. With numbing cream it was smooth sailing. Although there were a few owies when the residet cut out the four stitches in her ear because it was hard to get the cream in there to numb it. So if we wouldn't have had the cream I think there would have been more complaints and tears. The down side was that we drove an hour and a half each way for a whole 20 minutes in the hospital. It only took about 10 minutes to take them out so it was rediculous. Sooo wish we could have done this in Waterloo. There were no special tools used so I believe we could have. Anyway, it's over with, she did good and today the scar looks wonderful. She is still on antibiotics for a few more days and she's good to go. Then just waiting until we see changes in her tone. Could be as much as a year before we see changes.

Saturday was a fun day filled with friends and family. First we spent two hours with some of Ellie's friends and parents from school and preschool getting together. We had a picnic and the kids played while parents talked. Then we spent two hours with Javier, Stephanie, Hudson and abuela at Jav and Steph's house. The kids played on the new swing set after a quick trip to a neat little country store out on Raymond Rd. Then we headed to grandma Julie's house to see Emily, Ethan and Haley who were visiting for the day. It was much fun all day.

Courage and stitches

2010-05-21T10:18:00.000-05:00

Ryan and I were told that Ellie was nominated for an award and that she would be receiving it this year. Below is the information about it I was sent from the school. It's going to be a surprise for her. We are touched she was chosen.

Scott Westin, an elementary student at Price Laboratory School passed away of aplastic anemia on July 10, 1991. He was diagnosed with the disease in second grade and died following his sixth grade year. As a memorial to Scott, his family established the Scott Paul Westin Award for Courage. This is an annual award given to an elementary student who has shown significant courage in the face of adversity of any kind (emotional, social, physical, or economic).

A committee composed of family members, Clare Struck, and JD Cryer will make a selection from the nominees. The award will be presented at the May 28, 2010 Elementary Citizenship Assembly 8:45-10am.

Thank you for your consideration with this traditional elementary recognition.

Today, Friday, we are taking Ellie back to IC to get her stitches taken out. We are hoping this goes smoothly because she has already expressed not wanting them taken out. It worries her. Probably fear of pain and the unknown. We will be talking her through it and hopefully having some numbing medicine so she doesn't even feel the pulling. Please be praying for us this afternoon around 1 or 1:30 when they will be taking them out. I'm hopeful she will do a good job because she has been doing great at appointments lately.

Thank you and have a good weekend. I'm off to San Jose, California next week for training for work. So excited!! I also get to see a friend that moved out there earlier this year!! Here I come Sarah!!

The Dalai Lama and Jackson Katz

2010-05-18T20:36:00.000-05:00

I ws able to go to a panel on violence with the Dalai Lama and Jackson Katz both on the panel. The other 5 on the panel are the Dalai's interpreter, the moderator and three other panelists who spoke about violence also. There wasn't a whole lot said by the panelists other than the Dalai Lama. Each panelist got to answer a question and ask the Dalai a question then the majority of the time we listened to him speak. It was a once in a life time opportunity so I am glad I got to go. These are the pics I got. I know they aren't the greatest but they'll have to do. I thought it was interesting that he took his shoes off and sat crossed legged on the chair the whole time. That's how I would have chosen to sit if I had to.

He bowed to everyone many times as he entered and as he left.

There were two large screens set up for us to see closer. At the end he gave the panelists and the sign language interpreter white scarves. I thought that was neat also.

In this last picture there are merchants set up outside on the lawn selling tibetin items from jewelery, to clothes, to statues and many other things. The lines were incredibly long to get in so I didn't shop around. I just stayed in line.

Monday night

2010-05-17T18:22:00.000-05:00

Tonight Ryan found a frog while he was trimming the yard with the weed wacker. He brought it up on the deck for the kids to see. Nathan held it and Ellie was only brave enough to touch it. I snapped a couple pics cause it's not common around here to have a frog encounter.

Also tonight Candice and Bre from the UNI volleyball team came out to the house to bring some surprises for Ellie. Ellie was so excited and enjoyed her gifts right away. This is us putting the princess puzzle together and Ellie putting the last piece in the puzzle. Thanks to the UNI Volleyball team for making Ellie feel so special.

I want to say Happy Birthday to my little bro Javier. Although you aren't little anymore you'll always be my little brother. I'm a lucky big sister to have a brother like you. You've been amazing support all our life. Love you and Stephanie, Hudson and baby so much!

Going home

2010-05-17T18:10:00.000-05:00

Once Ellie had the tube out Ellie was ready to get dressed and get out of there. So were we actually. So once she got all dressed she posed for a picture with me since I'm not usually in them. We got home and were quiet and mellow for the rest of the evening. Ellie watched another movie. She slept good that night and got up ready to go to school. Ryan didn't have to work Monday so he went with her and stayed all day. She is not allowed to do P.E. for the rest of the year but she had a good day. Her incision site and stitches look really great after we cleaned them. The goal is to keep them free of scabs and dried blood. So that is how we have been keeping them. Today we got an appointment to take her back this Friday to take the stitches out. This makes us nervous because Ellie is touchy when anyone gets close to them so we hope she is calm enough to sit still enough for the doctor to use a microscope to cut the stitches out of the inside of her ear. The others should be much easier to get to. Pray for her to be calm and not nervous about getting the stitches out. We will be doing that at 1pm on Friday this week.

Sunday Dr. report

2010-05-16T09:43:00.000-05:00

Her drainage was down to what they wanted to see it at yesterday and over night so this morning we were told they were going to take the tube out. YAY!! So the nurse put numbing cream around the tube site and when the docs were ready it didn't hurt a whole lot. Ellie held our hands and they cut it out. They told us that was the only thing keeping us in the hospital so now we get to come home today!! Not sure when but we are happy!! We will be back in a week to get stitches out and check on the incision. So we'll see yall at home again soon!! Woo Hoo!!

We noticed Ellie is moving around much faster since they took the tube out. The tube made her nervous but now that it's out she off and going! Now we just need the IV out of her foot and the go ahead to go home.

Saturday Dr. report

2010-05-15T10:05:00.000-05:00

Dr. Woodson and another doctor came in this morning and said Ellie would stay maybe through tomorrow, Sunday. She said there has to be only 1 oz. of drainage from the would over a 24 hour period for her to go home. We are hopeful that will happen today so we can go home Sunday morning. I will keep posting updates today as time goes.

Feeling much better

2010-05-14T22:04:00.000-05:00

After a two hour nap thanks to the morphine Ellie eats graham crackers and smiles for a picture. We are taking a chance here because she has thrown up the applejuice she tried to drink all afternoon. But now she was hungry so we gave it a try. She kept it down so far! The bucket and towels aren't too far away just in case. My beautiful Ellie! Love you Honey Bear!

Ethan and Haley visit

2010-05-14T21:59:00.000-05:00

Ellie smiles for the picture, but would hardly talk to anyone any other time. She perked up when Ethan and Haley showed up. They wrote on notebook paper with princess pens for a little while together before dinner.

sleeping

2010-05-14T21:57:00.000-05:00

She slept on and off for the afternoon and evening. Morphine for pain knocked her out for two hours.

Don't look if you have a weak stomach...incision

2010-05-14T21:55:00.000-05:00

This is what we saw when we got to Ellie in recovery and it shocked us. Quite a large incision. The drainage tube wasn't what we imagined but it's working and going well. Ellie asked me to take a picture of it so she could see. Then she asked me to print it off so she could take it to her class for her sharing day on Wednesday to show her classmates what it looked like.

Ready to go back...

2010-05-14T21:51:00.000-05:00

Daddy got to take Ellie to the operating room this time. Ellie is such a brave girl she walked right into the operating room with daddy and went right to sleep with the help of anesthesia. We had a smooth morning!

In her room

2010-05-14T14:48:00.000-05:00

Ellie is doing great in her room on 2JCP Peds unit. She slept for a while then woke up doing good. She has had a bit of nausea but nothing serious. She is watching movies and talking a bit with family visiting. She wanted to see her incision so I took a picture of it and showed her. She didn't say much about it. I got her cleaned up from all the iodine all over her and brushed her hair so she is clean and happy now. She just started drinking some apple juice but isn't interested in that too much. So that is pretty much for now. We are quietly hangin' out in the room.

Surgery update

2010-05-14T10:29:00.000-05:00

Just got a call from Dr. Gantz. He said the surgery went, her tongue still works and they will close her up and we will get to see her in an hour in recovery.

Nerve Graft surgery

2010-05-14T07:47:00.000-05:00

Well Ellie is peacefully sleeping in surgery. This morning she was quite solemn but cooperative. She hugged her dolphin and got a chance to watch cartoons even. Handy Manny, Special Agent Oso, and Mickey Mouse Clubhouse are some of her favorites. So many doctors and nurses visited her and asked if she was healthy many times. We are happy she is healthy. When it was time Ryan went back with her this time. She breathed the gas and drifted off to sleep. Thank God she was very calm and cooperative today. She is getting much better with cooperating at the hospital here. I think she's learning it's not all bad at the hospital. We are in the family waiting room waiting for a call saying they have started then we will head to breakfast. I will update again when we know how things went.

Prayer requests for the DeJoode family

2010-05-09T14:41:00.001-05:00

If you click on the title to this post you can find the story about the DeJoode family and the car accident they were in. I am asking that we pray for their family as two of the four are still in critical condition. Two children have died and are in heaven now. The mom and middle child are still in the hospital. Ryan and I went to High School with Adam DeJoode who is the brother of Troy DeJoode. Troy is the husband and father of the mother with 3 children that got struck by a truck that ran a stop sign. They have donated organs which have helped others' lives so this is a blessing but it is bitter sweet. The rest of the DeJoode family lives here in CF. Thank you.

comments

2010-05-08T20:55:00.000-05:00

Now anyone reading this blog can post a comment to any of the posts. You don't have to have a google account or a blog to comment now. Thought this would be easier for people to leave us messages. The comments will also show up below the post so everyone can read all the comments. Have fun!

May is Brain Tumor Awareness Month

2010-05-05T22:16:00.004-05:00

I am going to try to post information about brain tumors over the course of this month for awareness because May is the month. I got this from the kid section of the American Brain Tumor Association webpage so it's on their level. Just a start for the month. I thought it was cute they had kids pages for them to learn about tumors from and post their stories and other educational stuff.

American Brain Tumor Association gets credit for the information.

Brain tumors are not common in young people.

Each year, only 2200 children in the United States are found to have a brain tumor.

About 3 children out of every 100,000 children will have a brain tumor.

Brain tumors usually happen in adults ages 35 and older.

Each year about 180,000 adults are found to have a brain tumor.

There are different types of brain tumors. As a matter of fact, there are over 100 types of brain tumors!

When a child is found to have a brain tumor, it is most often a "medulloblastoma" or an "astrocytoma" brain tumor. These are both very specific types of brain tumors.

Medulloblastomas are named after a part of the brain called the "medulla oblongata." The medulla connects the bottom of the brain to the top of the spinal cord.

Astrocytomas are named after the Latin word "astro" meaning "star." The cells that make up an astrocytoma look like stars.
The types of brain tumors more often found in adults: "glioblastoma," "meningioma," and "oligodendroglioma."

Oligodendrogliomas have cells that look like fried eggs!

Scientists are working hard to learn what causes brain tumors and how to make them stop growing. Right now, scientists are focusing on the DNA inside tumor cells. Most brain tumors seem to have an abnormal chromosome somewhere in their DNA - how this happens is not yet known.

Scientists DO know that nothing you think, say, or do can cause a brain tumor. And, you cannot "catch" a brain tumor from someone else.

Half of the tumors that begin in the brain are "benign." Benign means "not cancer." Doctors usually treat benign tumors with an operation to remove the tumor.

Some brain tumors are cancer. Those tumors are called "malignant" tumors, and they can be treated. Doctors usually begin with an operation to remove the tumor. Radiation and chemotherapy are then used to help get rid of any leftover tumor. Radiation is treatment using special medical x-ray beams. Chemotherapy is treatment with drugs that kill cancer cells.

July, 2007

Supporting World Vision

2010-05-05T10:35:00.001-05:00

I recommend HotelsCombined.com and sent $20 to World Vision!

You can shout and help too.

MRI results

2010-05-04T20:05:00.002-05:00

Great News!! Ellie had a clear MRI today! Dr. Bautti, radiation oncologist, said everything looked great! We were happy and relieved to hear this. He sais we'd do another in four months. So he is stretching it a little more. He said soon we would go to six months apart for the MRIs. Then she got the clearance for surgery on the 14th if she is over her little bit of lasting cough. If she isn't then we need to call them a couple days ahead of time and let them know how she's doing and they'll decide to postpone it or do it. We are trying to get her 100% healthy but it may be hard since Nathan is now coughing and has a runny nose.

For those of you who don't completely understand the upcoming surgery they are doing what is called a 7-12 facial nerve graft. We have a nerve in the neck below our ear that gives us sensation in our earlobe. They are going to cut part of this nerve out and attach one end to her 7th nerve which is her facial nerve and then cut the 12th nerve which is her tongue nerve and splice it in there so it comes out like a branch from that nerve. This will then grow together hopefully and give her tone back in her face. Then maybe after 8 months of recovery she will be able to move her tongue so her mouth moves up into a full smile. This will take practice doing facial exercises but it should work. It's worked on others they have done so we pray it is successful for Ellie also. One thing they learned in past experiences is that it works best if this surgery is done within 2 years of the first surgery. After that nerves tend to die off and "pull back" which makes it hard for healthy attachment. She is only 1 year out of surgery so she should be a prime candidate for this to work. The only little bit of a bummer is it takes a long time to start seeing changes. First she'll start to get tone back in her face then when we notice that she'll have to start practicing trying to move that side of her face. This change could take as much as a year. We are thankful for amazing medical advancements!

Thanks for everyone's support and encouragement through the cancelled surgery and MRI these past two weeks. See yall soon!

Tuesday's MRI

2010-05-03T22:47:00.002-05:00

Well we will be in Iowa City Tuesday, May 4th for another follow-up MRI for Ellie. This time it is going to be a stealth MRI which is a 12 minute one. We are going to try to just give her some oral meds to help her calm down and have her try it without general anesthesia. They will have to use contrast to get pictures so we are also hoping she lets them do the IV for that. We need huge prayers from 8-9am Tuesday. This is the time where we are preping her for the procedure. She has a special way she wants to sit on our lap and put her arm out and turn her head. Then have one of us cover her eyes so she doesn't look at them putting the IV in. She will have cream on her arm first to numb it so it's not really going to hurt. If this is what is going to help we will do it for sure. We will try this tomorrow and hope it all goes well. If I get a chance I'll post a quick update on facebook the results of the MRI and then blog about it later. Thanks all for your prayers.

Relay For Life pictures

2010-05-03T12:50:00.002-05:00

Below are pictures Ellie's friend Emma's mom Heidi took for us at Relay for Life during the walk. This is the first lap where survivors got to walk with their family members. This was very touching for me walking this lap. I couldn't talk, I was all choked up. You can see Ellie on Ryan's shoulders and then Ellie walking with Emma during the second lap when everyone got to join in. This was a long, loud night, but the girls and Nate had fun anyway. They played in a tent we set up and eventually fell asleep. Ryan and I were up all night with tiny attempts at snoozes since the music and activities were so loud. Nathan cashed out at midnight or 1am and the girls made it until 3am. Craziness, but fun! Although next year I believe we will join an outdoor relay that is quieter and more family friendly.

Our team did such a great job at raising money we made the bronze level. There are bronze, silver, and gold levels depending on the amount of money your team raises. This is great for our first year. Maybe next year we will shoot for silver! Thanks to all the team members; Ryan, Heidi, Stephanie, Marilyn, Javier, Meghan, Jennifer, DoLoras, Emma, and more thanks to everyone who donated to the cause, Julie, Tim, Jane, Mike, Nadia, Amy, team members and many more. I believe our team raised around $1,200 for the American Cancer Society. Thanks to ABC Embroidery in Evansdale who gave us a great price, and did beautiful artwork, on the TEAM ELLIE T-shirts for the relay.

www.Spokeo.com

2010-05-02T17:54:00.004-05:00

I saw this from a friend on Facebook. www.Spokeo.com is a web page where people can search your name and find out a bunch of your personal information. When I found mine a lot was wrong and it was under my maiden name, but none the less I wanted it removed. So if you want to search you, see what info is posted and decide if you want it off then go for it. www.Spokeo.com If you decide to have your information removed go to the very bottom, below the scrolling info where your info is, and click on privacy. Paste the URL to your info page on the space then your email and the code. Then go to your email and click the link they send you and it will say if you were removed. Then I would suggest refreshing your info page to see if you even come up when searched for. It worked for me but you can only remove two or three people from one email address. Good luck!

Much better Tuesday

2010-04-28T13:37:00.002-05:00

Tuesday was a much better day. She still woke up with a barky cough and a lower fever but she still wanted to go to school. Her temp was back to normal by noon when the nurse checked it because I had called her to check on how Ellie was feeling. She hadn't been coughing a lot. I made a call into her primary doctor here and they did want to see her because by the sounds of it we thought it might be croup. But the results were good and Doc didn't think she had croup. Just throat iritation from drainage, a little cold maybe. So she went back to school today, Wednesday. Last night ended the better day. We were invited to a UNI Volleyball team dinner at the coach's house!

Through a foundation called Friends of Jaclyn Foundation, www.friendsofjaclyn.org, Ellie was adopted by the UNI Volleyball team to be a team member. Our family is to support them and they are going to support us and involve Ellie in a lot in their activities. So we got to meet them last week at the end of a practice and last night since we were home we got to go to their team dinner. It was nice outside and the kids played on the trampoline, volleyball and soccer. The team, coaches and us hung around and talked, shot hoops, some team members found a pogo stick and other toys to try out. It was an all around fun evening. The coaches' kids took Ellie under their wings and showed her the ropes of playing volleyball and trampoline fun. Nate had his own fun flirting with the girls, getting tickled, chasing balls, riding skooters and stuff. He also decided to go down their slide which was kind of steep and bumpy. He got launched off it and face planted in the dirt and grass. He was so cute with a muddy spot below his left eye. He's a wild maniac as Ellie calls him. Fun times, fun times. He ended the evening carrying around a large bag of grapes eating them til he got home.

If you know someone who has a child with a brain tumor or had a brain tumor you can refer them to Friends of Jaclyn Foundation. www.friendsofjaclyn.org They find college sports teams to partner with families to adopt the kids who have the illness. It is such a neat thing. We are having lots of fun already. The volleyball team surprised us with t-shirts for the family and Ellie got a special UNI Volleyball. They taught Ellie for the first time how to pass a volleyball and are trying to teach her to set and hit it but she's not up for that yet. Although Ellie is convinced she already knows how to play. It's so cute.

So that's a little bit about the fun things we've been up to in the midst of the disappointment. Ellie has an MRI next Tuesday, May 4th in IC that we will be taking her to. Prayers that there is still no signs of tumor regrowth. This will be a 12 minute stealth MRI that they don't need to put her to sleep for. We are going to try it without the trauma of being put under. Then we will get results from the radiation oncologist and do pre-op for the scheduled surgery Friday of the week after next, May 14th.

Toodle-oo

Bummer day

2010-04-26T16:59:00.002-05:00

Well we had a great time swimming Sunday night for two and a half hours with a big water slide and stuff. Ellie slept great and when she woke up she had this dry barky cough. I had a feeling that was going to be an issue but I was hoping it was just due to dry room and would quickly go away. Well we got to the hospital and they took her back to do pre-op stuff and they found a fever of 38.3 Celcius which is 100.3 abouts ferenheit. They didn't like that. Then they heard her cough every once in a while and didn't like that either. They listened to her lungs, she reported she felt fine and we were hoping we could just go on. I really thought the cough was from the dry room. The fever never went down and she coughed when they tried giving her the first medicine to calm her down so they stopped everything. There was a lot of waiting around and the stress mounted as we waited to hear when the anesthesiologist and Dr. Gantz thought. Well they decided no. Not today. Didn't want to risk her being sick and possibly having complications. So we went home, me in tears, dad frustrated and Ellie happy, "it's ok, mom, cause I missed Lily anyway." Lily is one of our cats. Something that was the sweetest thing Ellie said to me when she saw me upset was, "it's ok to be upset mom, everyone gets upset sometimes." Sounds like something Mrs. Bromwich, Ellie's kindergarten teacher, the school nurse or counselor would say. Such a sweet supportive thing. Love her for that. She makes me smile. So surgery is rescheduled for Friday, May 14th. We will try it again if Ellie is healthy. Thanks for all your prayers and support. Means the world to us. Love you all!!

Surgery Monday

2010-04-23T11:56:00.004-05:00

Well Ellie is scheduled for her surgery tomorrow. Her surgery is at 8am and we have to check her in at 6:30am. We are staying over night Sunday night at a hotel with a pool and a big slide. Ellie has seen it in Coralville and asks when we can stay there so we told her the next surgery we will. We hope to be sent home on Tuesday if all is well with her. She may need to stay one more day though they said. We pray it all goes well since they've done this surgery before and it has worked for the other kids. Dr. Gantz is the lead surgeon and there will be residents and many nurses in on the surgery. Please pray for them and for Ellie's strength during and after surgery.

Hi UNI Volleyball Team!! We had a blast meeting you! Ellie has been playing with her volleyball and the kids wore their t-shirts today!

We will update the blog so people can keep up with her progress on Monday!

Thanks for all the prayers and support.

Surgery scheduled

2010-04-12T16:19:00.002-05:00

Well we went to the appointment with who we thought was a neuro-opthalmologist like I mentioned in the last blog. We got there and they had Ellie read letters and then another lady came in and told us she thought we were in the wrong doctor's office because she read the notes. So we told her yes we knew we were waiting for the appointment with Gantz and we were confused why we got this appointment with a totally new doctor in a new area. Anyway, we said we wanted to be seen today because we took off work and school. She got us in upstairs in Dr. Gantz's office and his fellow that followed Ellie when she was in the hospital did some preliminary testing to see how her nerve and muscle function had recovered. She put a scope down Ellie's nose to look at her vocal cords and she said they look good. She explained to us the surgery and we asked questions. Dr. Gantz then came in and reiterated what Dr. Woodson said and he said let's schedule her. So we decided to schedule her in the next 30 days so we could get pre-op out of the way. So we scheduled her for Friday, April 23rd. She would only miss one day of school and could go back on the Monday if everything went well.

Today I got a call from Dr. Gantz's office asking if we would be willing to bring her on Monday the 26th for surgery. They had something come up for someone who has a more pressing issue. We agreed especially because others agreed to push Ellie through quicker on her first surgery. So she will miss more school now which is a bummer but it will get done. I will elaborate on what they do during the surgery. It's very interesting and I know many people want to know. So there is more to come in the future.

It's been a while

2010-04-01T08:37:00.002-05:00

Well I decided I needed to update this blog. We have a good team of walkers for Relay for Life next weekend! T-shirts are ready for TEAM ELLIE and we are excited to get them and wear them for the walk. It's only a 12 hour walk so that is nice, but it's all night instead of during the day. 6pm Friday night at the McLeod center is the survivor lap then the walk continues until 6am Saturday morning. We are going to try to camp out with the others so we can be there to greet team members and walk when needed.

Ellie went to the eye doctor in Iowa City last week and her eye sight isn't improving anymore. Actually it was slightly worse than it had been before so they increased the atropine drops in her left eye to every day to make it blurry for the left eye so the right eye can work harder at focusing in hopes to improve it again. We got a random call this week from U of I Hospitals and asked if we could take Ellie on April 7th to see a neuro opthalmologist. Aparently Dr. Menezes ordered this so she'll be there for that appointment. We don't know what to expect, maybe it was ordered as a result of seeing her results from the last eye appointment. I don't know but we will deal with whatever it entails.

I have called to request the appointment with Dr. Gantz and am still waiting for a call from them to tell us when it can be. He is an amazing doctor that is in demand so he has a busy schedule. I'm trying to be patient with this but sometimes it's hard when you are anticipating it and want it to happen when she doesn't have to miss school and know it all relies on the doctor's schedule.

We are still waiting on results from the genetic testing. We anticipate results between four and six weeks so that would put it any time between now and the 15th of April. I'll share those results when I can. I don't know if I want the results to be yes they are genetic because that would give us a reason she got one, or if I'd prefer non genetic result because then we'd all be in the clear for genetic tumors but it would leave us without reasons as to why Ellie got hers....

Thank you everyone for your many wonderful birthday wishes. It was touching to read everyone's messages. I was overwhelmed in a good way. Thank you all. I wish I could see everyone in person to thank personally for all your support, love, prayers and company during this past year. We love you all!

Relay For Life

2010-03-12T12:16:00.002-06:00

Relay for Life is something I decided to be a part of this year. We have started setting up a team and need more people. I signed up to have a team of 15 walkers. We need more members for TEAM ELLIE! April 9-10 at the McLeod Center at UNI will be activities for families during the Relay for Life walk. It's a 24hour walk that starts with a survivor lap where all survivors of cancer walk a lap together to get it started. Then each team is supposed to have at least one team member on the track walking at all times. I was thinking with 15 walkers on team Ellie we would only each have to walk an hour and a half to complete the 24 hours. Walking in pairs or groups is fine also. Looks like there might even be camping outside on the grass for those who want to do that for a little fun. There will also be other activities for people to participate in. We are hoping to get t-shirts made for Team Ellie so I need to know how all is interested in being on the team so we can put names on the back. Relay for Life would like everyone to make at least a $100 goal for funds raised per walker. So I made our team goal $1500.00 thinking each walker would try to raise $100 before the day of the walk. We have to turn all money in on that day. So if you are interested please click on the Relay For Life title to this blog and it will take you to the website where you can learn more and decide if you want to just make a donation to our team our join our team. We need about 8 more walkers I think. Thanks for considering joining our team and once you join I send you more information about events. Ellie has some of her friends signed up with one of their parents to be on the team and walk with her throughout the day. She would love to have more friends join her. GO TEAM ELLIE!! YAY!!

Genetics appointment update

2010-03-11T15:21:00.002-06:00

So I know it's been a while and I didn't update right after the appointment. I wanted to know how long the testing was going to take to get results. Ryan didn't know when he got home from the appointment so it took time for me to remember to call the lady and ask.

Sooo the appointment went well Ryan said. I stayed at work to avoid the trauma of having to hold her down for the blood draw because it's hard for me to do this and I've done it a lot lately. So Ryan said she didn't fight and scream about it. She sat on Ryan's lap, she looked the other way and Ryan just put his hand next to her head so she couldn't see over there. The first time they couldn't find her vein in her elbow so they had to put cream on her hand and wait for it to get numb. Then they were able to get blood from her hand. They showed on Ryan's hand what they were going to do because Ellie wasn't too sure about it. So Ryan came home with a bright pink bandaid on his hand also. I thought it was cute. Ellie was a trooper and didn't even fight them so we are so happy.

She let them measure her eyes, nose, mouth, ears, hands, and other stuff, then looked all over her skin for cafe ole spots which are a sign of something, I don't know. She got stickers when she was done and she was interested in showing people her pretty bandaids and stuff. I am begining to think that after the MRI went so uch better and this appointment went pretty smooth that she is becoming more mature and getting used to these procedures. This is a blessing and something the doctors were thinking she'd grow into.

I got the message yesterday that the genetic testing will take at least 4 to 6 weeks. So they lady from the genetics lab will call me with the results. After that sometime I will inform everyone of those results. Ellie goes March 22nd to Iowa City for the eye doctor appointment again. This appointment is painful because we are always there for hours waiting to get seem by multiple people. Ellie hates it also so lets hope this goes smothly like the past two have.

Genetics appointment

2010-02-26T11:36:00.002-06:00

Ellie's genetics is next week on Thursday, March 4th. The nurse called me to ask many many questions about family history and then about pregnancy, delivery and development of Ellie. So I got all the questions answered and prepared her about how Ellie might act and respond to getting poked. This is her huge fear and I am not sure she is going to stay still. Ellie's plans are to close her eyes. I told her they will put the cream on her arm to numb it and they are going to use the smallest needle so it won't hurt. She's seems ok with this, but we will see when it happens. I am not sure how long it will take to get results. That's next on her doctor's agenda.

Random thoughts

2010-02-22T15:04:00.002-06:00

I haven't posted lately and now I'm going post crazy. These are funny! Enjoy! Thanks Julie!

RANDOM THOUGHTS FOR THE DAY!!

1. I think part of a best friend's job should be to immediately clear your computer
history if you die.

2. Nothing sucks more than that moment during an argument when you realize you're wrong.
3. I totally take back all those times I didn't want to nap when I was younger.

4. There is great need for a sarcasm font.

5. How the hell are you supposed to fold a fitted sheet?

6. Was learning cursive really necessary?

7. Map Quest really needs to start their directions on #5. I'm pretty sure I know how to get out of my neighborhood.

8. Obituaries would be a lot more interesting if they told you how the person died.

9. I can't remember the last time I wasn't at least kind of tired.

10. Bad decisions make good stories.

11. You never know when it will strike, but there comes a moment at work when you know that you just aren't going to do anything productive for the rest of the day.

12. Can we all just agree to ignore whatever comes after Blue Ray?

I don't want to have to restart my collection...again.

13. I'm always slightly terrified when I exit out of Word and it asks me if I want

to save any changes to my ten-page research paper that I swear I did

not make any changes to.

14. "Do not machine wash or tumble dry" means I will never wash this -- ever.

15. I hate when I just miss a call by the last ring (Hello? Hello? Damn it!), but when I immediately call back, it rings nine times and goes to voicemail. What'd you do after I didn't answer? Drop the phone and run away?

16. I hate leaving my house confident and looking good and then

not seeing anyone of importance the entire day. What a waste.

17. I keep some people's phone numbers in my phone just so I know not to

answer when they call.

18. My 4-year old son asked me in the car the other day "Dad what would

happen if you ran over a ninja?" How the hell do I respond to that?

Well, stupid, I’m no 4 year old, but what about he's flat?

19. I think the freezer deserves a light as well.

20. I disagree with Kay Jewelers. I would bet on any given Friday or Saturday

night more kisses begin with Miller Lites than Kay.

Pretty and fun!

2010-02-22T15:00:00.002-06:00

I got this website from my mother in law and it's pretty. Click on the link below or try clicking on the title to this post and maybe it'll take you there. Once you get to the black page of this link start clicking your mouse wherever you want and see what happens. It's pretty! So when you are bumming about all the cold and snow you can do this. Have fun!!

http://www.procreo.jp/labo/flower_garden.swf

Febr. MRI update

2010-02-22T12:17:00.003-06:00

I am happy to let you all know Ellie's MRI last Wednesday went well. The anesthesiologists were delayed an hour and a half so we waiting around a long time. When it was time Ellie got her model magic ready to play with while they put the mask on her to distract her and we walked to the back. Well the second we got back there she started freaking out and saying, "I can't do this, I can't do this!" The doctor offered to put the tube in her mouth like a straw instead of the mask and she wouldn't stop saying no to listen. So then the anesthesiologist said they could give her a shot in the leg and I immediately turned that down because the needles and pokes is what Ellie is afraid of. Aparently still afraid of the other procedural stuff also. So once again three or four of us had to hold her down and put the mask on her and talk to her about rainbows and flowers until she fell asleep. I started to cry again because I hate holding her down with her trying to get out of it. It's heart breaking. So I left in tears after I kissed Ellie goodbye and told Ryan he is going back with her for whatever procedure next time.

So Ryan and I went to find some lunch finally at 2:15 while she got her MRI done. We met up with her when she was done and went to recovery with her. She came out of it very well this time. No flipping in the bed and grumpiness. She ate crackers and apple juice as soon as they gave it to her since she hadn't eaten in 18 hours. Miss Ellie was great for us up until the MRI and great again afterward for the doctors. So overall it was smoothe. Dr. Bautti got us in and out quick since it was the end of the day and there weren't any more patients waiting for him. He told us the good news that the MRI looked great! There were no current concerns we needed to talk to him about so he talked to Ellie a little and then said come back in 3-4 months. So we'll wait for that one to be scheduled.

Then we headed to Dr. Menezes, neurosurgery, and he was finishing up his day also. He had 3 patients waiting for him and it was fast in and out also. He looked at Ellie's scar on her head and it was good so he gave us the go ahead to meet with Dr. Gantz. Dr. Gantz is the Specialist in pediatric Ear, Nose, Throat surgery. He also did Ellie's brain surgery with Dr. Menezes so he is very familiar with her case. We are also waiting for that appointment to be scheduled. Then her next appointment she has is March 4th with genetics somewhere here in Waterloo. I'm not sure when we'll get those results but I'll let you know. Genetics is going to look to see if Ellie has a mutated gene for brain tumors. If she does then the rest of the family will get tested if not then it means she got this tumor for some other reason. Not because of genetics. Lots more questions and answers still to come.

Thank you all for your support again! Love you!

Ellie's MRI

2010-02-16T19:57:00.003-06:00

Well tomorrow for us, today for those of you reading this on Wednesday, we are going to be with Ellie at her next 3 month follow-up MRI in Iowa City. She will be going under general anesthesia to put her to sleep then they can do the IVs they need without her fighting them. She has devised a plan with Ms. Struck the counselor at school that she is going to be playing with model magic in her hands while they put the mask on her face to fall asleep. The MRI is at 12:30pm and then we will see the neurosurgeon and the oncologist afterward. I have a feeling we will be getting out of there at dinner time so it should be a long day. Hopefully going smoothly. We also can't feed Ellie all morning because she has to go 12 hours without food and she can have 4 ozs. of clear fluid six hours before hand. Fun times! I'll update everyone by the end of the week about the results! Thanks for your prayers and support!

Thank you to everyone

2010-02-08T20:18:00.001-06:00

I wanted to take this off the top of the blog since I am tired of looking at it and maybe you all are also. But I put it in a post just so it's still logged on the site.

Thank You Flyer

Nathan's birthday and snow day

2010-02-08T19:25:00.004-06:00

It's been a terribly long time. So here are some pics of Nate's 2nd birthday and other stuff.

MRI date change

2010-01-22T15:51:00.002-06:00

Hi, Ellie was going to have her next follow up MRI on Tuesday the 26th, but it isn't going to be Tuesday anymore. The sedation clinic called me for the questions before sedation like they always do and they said they were going to do it the same way as last time. So I said I thought we were just going to give her some oral meds to relax her some and try to not have to do anesthesia since this was a fast 12 minute MRI. So she said it wasn't ordered that way so we had to talk to the doctor to change it. So she talked to the nurse coordinator for pediatric oncology and they read over the reports of the last MRIs and noticed Ellie didn't even take the oral meds well and wouldn't let them do the IV for the anesthesia so they didn't think she'd be cooperative this time around either, so they ordered general anesthesia for her. That means it was cancelled so general anesthesia and the oncologist can be available at the same time to get it done. General anesthesia means she breathes gas through a mask to put her to sleep so they can do the IVs and everything while she's asleep. Trying to decrease the trauma. But all this time, these past three months, we've had Ellie in therapy with the school counselor doing play therapy so she can process all this she's been through and we've been preparing her for oral meds, IV meds and staying awake for a fast MRI. But since plans change from when we leave one doctor to the time they schedule the MRI and meds get ordered differently things get screwed up. So then I question the sedation nurse when she calls and all the prep we've been doing with Ellie goes to the way side. So needless to say they want to continue to use general anesthesia and sedation that way until she gets older and more mature to handle the needles and such. I can see there side because she is so scared of the needles and stuff and she's still young but then don't tell us we can try it one way and not order it that way. It's an emotional roller coaster changing plans the week before it's supposed to happen and now waiting again for the new date.

I'll let you know when it's rescheduled for. Thanks for listening/reading my venting. Sorry.

Hacked!

2010-01-15T14:21:00.002-06:00

I just wanted to let everyone know that my yahoo email was hacked and if you got a strange email saying I was mugged in the UK and needed $2700 to help me get back to the US, IT WAS FALSE. I'm sure many of you figured it out and didn't really believe it but still, how annoying and troublesome. SERIOUSLY!! Sorry about that and hopefully it won't happen again. When I get a new email I'll let you all know what it is. For now you can use this gmail account. RAR!!

p.s. thanks to all those who would have helped me if I really needed it. LOVE YOU ALL!

Adios!

Eye update part 2

2009-12-18T11:27:00.002-06:00

Ellie had her eye appointment in Iowa City and the results were good again. She was 20/40 in the right eye. A little fluxuation that they said could be due to the dryness of her eye at time of reading pictures and the scar tissue on her cornia from the infections. She may also test better in Waterloo because they see her more often and she is getting used to identifying the pictures they have her look at. In IC the pictures were really different and it wasn't as easy to identify them. So the doctor is not worried about the little fluxuations. He is happy to see more improvement and asked that we continue the atripine drops in her left eye. So we continue with all the eyedrops to keep them healthy, wet and improving.

Her last scab came off last night and didn't scab back over very much at all. So we are happy to see this morning that there is a very tiny spot now where the last scab was. At the end of January when Ellie has her next MRI Lonnie at Dr. Menezes' office will look at her scar and if it's all clear she will set up an appointment so we can meet with both surgeons to talk about the next surgery option for the nerve graph for her face. So as of now it looks like we have a month break before we have to go to IC again. Yay!

I got a call this week from the Pediatric Specialty Clinics in IC to set up an appointment for her genetics testing the oncologist suggested we think about doing to see if she has a gene for brain tumors or not. If she does then it will explain more of why she got this one. Then we will test our family to see if one of us have it also and are at risk. They have a Waterloo Clinic where they do this testing but our appointment isn't until March 4th. So at least the appointment is in sight and we aren't still wondering when they will get to us.

We all feel so blessed to have Ellie with us this Holiday season. Everything is so much more special once you've been through something like this. The Lord has carried us through this time and we praise his birth this season. We are thankful we can be at home celebrating with everyone and not stuck in the hospital like so many families with sick children. Please pray for those families have to be separated for the Holidays due to a sick child who can't be around the rest of the family. We hope and pray you all have a wonderful, blessed Christmas and a Happy New Year!

eye update part 1

2009-12-11T14:49:00.001-06:00

Ellie had an eye appointment with Dr. Puk in Waterloo to follow up on the two eye infections she had a while ago. He says the ointment and eye drops we've been using are working well. He even noticed that her blinking is getting stronger and her eye is able to close more during blinks. Then he asked her to close her eyes really tight and her right eye closed much quicker and almost all the way. So he noticed a big improvement. When he pointed it out I noticed it also. So he wants to see her back in a month with the same antibiotic regimen we have been using continuing. Then he won't need to see her very often if things still go good with no infections. When doing the vision test she made it to the 20/30 screen in her right eye. Last two or three times and the last IC appointment she could only see 20/50. So there has been another improvement in her eyesight. So the eyedrop in her left eye she gets to help the vision in her right eye is helping also still. This is great news to us.

There is another scheduled Iowa City eye clinic appointment for Monday the 14th of Dec. This Monday. So we will make it through that with hopefully as good findings as today and then drop in to see Dr. Menezes PA so look at Ellie's scab one more time afterward.

Woo hoo!!

Oops!

2009-12-09T16:03:00.002-06:00

I noticed that people have been responding to the posts to the gmail account. I don't ever check that for emails therefore if you sent an email in response to a blog post and never got a response from me it wasn't intentional. I didn't even realize you would get my gmail email account info. So I never even thought to check the actual email. So I apologize for never responding to the many emails you have all sent to the gmail account. If you want to email me and me actually read it please use asmiley35@yahoo.com. I check this one all the time at work. Not so much at home. Thank You

It's working!

2009-11-15T19:03:00.002-06:00

WE HAVE PROGRESS ALREADY!! After two days of doing the peroxide we notice the very top scar which was stuck in short hair is already off! This was the confidence booster I needed, possibly Ellie also, that this will work and it will be ok. It turns out the peroxide and scrubbing/washing head hasn't been traumatizing like I thought it would be. Ellie sits hesitantly and Ryan has a special touch and talk with Ellie. She lets him do it with very little fuss. She says she doesn't want Dr. Menezes to have to take them off at her next appointment. I don't blame her. This is one time she fully understands what we explained to her and she's cooperating without coaxing. I also don't want to have to do it down there. Going to so many appointments already wears on you and then having the anxiety of that on top would not be good for anyone. It's nice. I think this is all a part of the progress she is making by meeting with Ms. Struck, the school counselor, to talk about her feelings toward all this. I'm thankful for everyone helping us through this. Thanks to those supporting me personally now that I find myself dealing with it emotionally. It's much appreciated. Love you all!

X-ray update

2009-11-12T12:50:00.004-06:00

So early the next week after we went for the MRI I received a call from Dr. Menezes's office saying he wanted to see us Friday. I was leaving town for the weekend so we rescheduled for this past Wednesday. I had the day off for Veteran's Day so we took that advantage and went to Iowa City. He wanted an X-ray of Ellie's head to check on things. He also wanted to see us because she has spots on her scar that aren't healing. So we got there and they gave her some medicine to help her relax some so they could look at her head. While she was struggling a little with taking the medication she asked if they were going to go inside her head. I guess she wanted to make sure they weren't going to open her head up again. So I of course reassured her they weren't, that they were just going to look. She was cooperative but she had to be the one that moved her hair out of the way and no one could touch it. So we had a good day, not forcing her to do anything. The docs were able to see her scabs and told us what to do to help them come off. We have to put hydrogen peroxide on them and try to soak them with a wash cloth and peroxide, then when shampooing her hair try to scrub them so they come off. They asked us to come back in 3 weeks so Dec. 4th we have another appointment to check on the scabs. I have a feeling if they aren't off they will be scrubbing them to try to get them off down there. Oh the anxiety of what will happen in three weeks if we can't get them off, and the anxiety of trying to do this every night with Ellie.

Last night, our first night of doing this procedure, it was so sad. She was upset and said, "mommy I wish you could have the scar". This is heartbreaking. I told her I wish I could have the scar too. I wish I could take it all away from her and have to deal with it myself. So now we must continue on, every night trying to soak her scabs and scrub them off. Something good though is that I have noticed since Ellie has been meeting with the guidance counselor at school once a week to talk about everything that has happened to her, Ellie has been able to talk to me more about her feelings and tell what specifically she is afraid of. So this is very helpful. I'm hopeful this will continue and we can work through all of her fears.

Ellie's school Mother Goose Tea Party

2009-10-30T13:56:00.002-05:00

At Price Lab Ellie's class had a mother goose tea party today. They were to dress up like a character in a Mother Goose rhyme. Ellie chose the cat and the fiddle from Hey Diddle Diddle. So I went to watch her and the other kids perform their rhymes. Ellie aparently won a contest of guessing how many scoops it would take to empty Jack and Jill's pale of water. She guessed the closest so she got to present that rhyme by herself. So there are pictures of Ellie presenting with her teacher, Mrs. Bromwich. Then they had their tea party at the tables. There is also a picture of Ellie's friend Ahmad. It was neat to spend time at her school and participate in her activity. She is also wearing this cat costume for trick or treating. Nate is going to be a dinosaur if he will tolerate the costume, if not we have a skeleton long onsie he can wear. I'll get pictures of that up later. Hope all is well with you!

Ryan's buck and vertigo

2009-10-30T13:35:00.004-05:00

Another exciting thing that has happened was that last week was muzzle loader season and Ryan "got him his first buck." He was so excited about it until he had to drag the big thing out of the corn field where it finally gave up up. Then Ryan decided it was too big when he was still cutting meat off it at 11:30 at night. So it's good, he got his buck and we have a freezer full of deer meat now. The taxidermist said it is officially a 5 year old, 13 point buck. Wow, we were amazed. Yes it's at a taxidermist so that means it's getting mounted and if Ryan has any say it will be on a wall when he gets it back next year. Yes, it's going to take a year.

Something else, that wasn't so exciting, was that I spent Saturday morning in the emergency room at Sartori because when Ellie woke me up that morning, at 6:20 for some odd reason, I couldn't stand up. I was so dizzy I would have fallen over if I wasn't holding on to the bed post or walls. It was crazy feeling. I got nauseated and vomited if I was upright for too long. So I called nurse on call and she suggested I call 911. I explained I had two children and my husband was hunting so I got my parents to come over and my dad took me to the ER while my mom watched the kids. So nothing else was wrong with me except this dizziness, nausea and vomiting. They gave me wonderful meds that worked immediately after it was put in my IV. They drew blood and did a CT scan to check everything out to be safe. Then they sent me home with another dizziness, nausea med to help me get over it. I rested all day since Ryan had the kids at a wedding and reception, I was bummed I missed. Sunday morning I felt fine and have been pretty good since then. I am so thankful it only lasted one day. I still carry the perscription around with me incase it comes back. Oh yeah, they said it was vertigo. It was lovely...as those of you who have experienced it know.

Ellie's 10/28/09 MRI

2009-10-29T12:25:00.004-05:00

We showed up early in the morning and Ellie was already fighting us to even put cream on her arm and cover it with a bandage to start to numb it so the poke of the IV wouldn't hurt. We had to hold her arms still so the nurse could do that. She fought and fought and fought. Then it was time to take an oral med to calm her down so she won't be so fiesty when it comes to putting the IV in. Well she refused and refused and fought some more. So they got permission from the anesthesiologist to do a gas mask to put her out then they could do the IV and MRI while she was out. So a couple nurses and I had to hold her down to put the mask over her face until she stopped fighting us. It was so sad I cried cause I know we are retraumatizing her. It hurts to have to force your child into doing something she is afraid of. I feel horrible.

After she recovered from the meds and woke up enough for us to transfer her we went to see Dr. Bautti. He is her oncologist and he said the scan was clear and no concerns up there. He said that there is a syndrom that happens to people who get radiation in their brain between 3 weeks and 3 months after the finish of radiation. It presents exactly like Ellie had as tiredness all the time. Their recommendation when this happens is to just let them sleep when they need. It goes away in 1-2 weeks and then never tends to come back. Although he wasn't sure because Ellie did have the blood test result of elevated white cell count for a virus so he wasn't sure if it was that syndrome or a virus that made her tired. Although the viral count could be from the infection she had in her eye maybe. Who knows. She recovered from it and she's good now.

Then we had him look at the scar and the scabs that haven't healed yet. So we held her on our lap tightly so he could look at it. She has this intense fear of anyone touching her head and hurting her. So he was slightly concerned they hadn't healed up yet so he suggested we go up to Menezes's office so they can look at it and do what is needed. They said sometimes the internal stitches get pushed up to they are near the skin and that could be keeping the scabs on there. If they are still on next time they may be pulling them off. We can try to sluff them off in the bath when shampooing her hair. If there are signs of infection we have to call them to get her on antibiotics. It's also good she's swimming once a week at school to keep them clean and maybe coming off while swimming. We go back in three months sometime to see Dr. Menezes, Dr. Gantz, Dr. Bautti and do a stealth MRI. That means it's 12 minutes long and we are going to try to have her stay awake for it. Or just give her meds to relax her. Then the time after that it will be a long 2 hour MRI to do brain and spine. That one will be with full anesthesia.

This morning I took Ellie to the eye doctor to follow up on her infections and they are clear! So I thought at this time Ellie is healthy, buuuut.....If it's not one thing with this child it's another. I just got a call from the Price Lab nurse and Ellie was down there because the inside of her mouth hurt. So the nurse looked in and saw a canker sore on the inside of her cheek. So she put some orajel on it and sent her on her way. While eating lunch the nurse went to put her eye drops in and Ellie said her mouth felt fine. So yeah, this is minor but seriously...

Thank you all for your prayers, we are thankful she is clear of tumors right now. Praise God!

Ellie's first follow up MRI

2009-10-27T14:15:00.004-05:00

Well, tonight we head to Iowa City to stay in a hotel, hopefully enjoy a little swim, and tuck our little girl into bed before she has her MRI tomorrow morning. It's time for the first follow up MRI in Iowa City at 7am. She has to get poked again and we aren't looking forward to this. The MRI should be pretty quick, half hour maybe, they are just looking at her brain this time. Then after she wakes up and we make it through the stages of being discharged we head to the oncologist for an appointment. We hope to hear she has a clear MRI with no concerns. I'll send out messages with results to yall and then blog about the days so others can read about it. Nathan will be enjoying time with Tio Javi, Titi Steph and Hudson for the night and back at Wendy's Wednesday.

More benefit pics

2009-10-26T12:28:00.003-05:00

Here are pics from the silent auction at the benefit.

Benefit pictures

2009-10-21T13:04:00.005-05:00

So sorry this has taken so long to get posted. Here are some pictures from the night and dinner before hand. I really didn't get very many taken so if anyone out there has pictures from that night would you mind sending them to me electronically if you can. I'd love to post them. I don't have any of what the silent auction looked like, or the kids or anyone dancing, or people visiting. Any help would be great. I want those who couldn't make it to be able to see what it looked like. Enjoy!

New blessings...

2009-10-21T12:47:00.004-05:00

My friend Mandy and her husband Justin had a baby yesterday so I wanted to announce their new blessing. His name is Maddox Robert Hunecke 7lbs 4ozs 21.5 inches born Oct. 20th at 5:30am in Mankato, Minnesota. I am so excited for them and miss them very much.

UI Children's Hospital won a game room!!

2009-10-20T09:08:00.001-05:00

YAY UI Children's Hospital! They won one of the three game rooms! Here is a small article announcing the winners.

FLINT, Mich. (AP) --- Hospitals in Michigan, Iowa and Mississippi have won new $10,000 playrooms equipped with Xbox 360 video game systems, new TVs and computers.

Xbox 360 and the Children's Miracle Network announced the winners of the online contest on Monday.

They are Hurley Medical Center in Flint, University of Iowa Children's Hospital and Blair E. Batson Hospital for Children at the University of Mississippi Medical Center.

The online contest began Sept. 3 and ended Friday.

Installation of the room is expected to take place over the next few months.

blood work results

2009-10-16T10:42:00.002-05:00

Well it's been a few days but earlier this week we found out that the blood results came back fine. The cbc showed no anemia, platelet count good, but the white blood cells are elevated to the level of a viral infection. They also checked her thyroid because radiation can affect that but the next day the results showed up fine for thyroid. So Ellie has been slowly perking up to her usual self. It seems as though it was just a viral infection she was fighting off.

Then two days ago we noticed her eye was bright red again and it looks like there is another infection in her eye just in a different part. So we are back on antibiotic eye drops and have a call into the eye doctor because today she is complaining about throbbing pain above her right eye. We'll see how all this turns out.

Seems like lately if it's not one thing it's another. Please be in prayer that she can get healed and we can have a calm rest of the month before we go back to Iowa City on the 28th for her first post surgery/radiation MRI. Thank you all. We'll keep you posted.

Last day to vote for UI Children's Hospital

2009-10-16T09:14:00.006-05:00

Ryan's mom told me about this competition for a game room makeover for the UI Children's Hospital. BUT IT ENDS TODAY, FRIDAY THE 16TH. Here is the article. If you all want to join me in voting for UI Children's Hospital that would be great! We are way ahead according to the numbers, lets keep it going to the kids down there can have a wonderful getaway from their illnesses.

Friday is the last day to vote for a hospital in the “Gameroom Giveaway,” an online contest sponsored by Xbox360 and Children’s Miracle Network, an international non-profit group that raises funds for 170 children’s hospitals. In the contest, which started in early September and is open to all hospitals affiliated with the Children’s Miracle Network, allows people to vote up to 10 times a day for the hospital of their choice. The three hospitals with the most votes overall will each win a $10,000 gameroom makeover.

As of 9:55 a.m., UI Children’s Hospital had the most votes at 1,887,006, about 29,000 votes ahead of their closest competition, Hurley Medical Center of Flint, Mich. The Iowa hospital also was more than 42,000 votes ahead of fourth-place Blair E. Batson Hospital for Children at the University of Mississippi Medical Center in Jackson, Miss. If the standings hold, UI Children’s Hospital would be the winner of the gameroom makeover.

http://xbox.childrensmiraclenetwork.org/

We had a great experience at the children's hospital this summer. Can't even complain about anything we experienced on the children's floor. So we are happy to try to help contribute to this cause.

So this website is taking a long time to load so maybe after 5pm it will be quicker if you want to try tonight.

Ellie's email from a friend...

2009-10-12T08:57:00.004-05:00

It was so cute last week on Friday when I opened my email there was a message from one of Ellie's friends Emma F. Ellie got her first email! It said, "dear ellie i miss you very much and i love you too good bye." It was so cute I thought I'd blog about it. Ellie was with me at work because we were waiting for an eye appointment to follow up on the eye infection. So Ellie got to read it but wasn't up to responding at the time. Thanks Emma and Heidi for sending the message!

The doctor said the infection is gone so we don't need to give her the antibiotic eye drops anymore, just the rewetting drops. Yay! Ellie has been feeling under the weather lately. Sleeping a lot but that's all of any symptoms she's had. We aren't sure if it's a growth spurt or what. She sleeps any chance she gets. Falling asleep in the car, in the grocery store cart, waiting on my lap at the eye doctor. Very lethargic, she's doesn't have that perk about her. It was the worst on Saturday and Sunday she didn't sleep as much but still layed around and was pretty quiet. I'm not sure if it's nutrition or what so we are gonna have that checked out. She was never this tired even during radiation. We will keep you posted if we find anything out. Have a good week everyone!

visit the website...

2009-10-10T21:54:00.003-05:00

My friend Mandy who has helped me tons with this blog posted a new flyer for me at the top of the page I wanted everyone to see so please visit the blog at www.wearesmiley.blogspot.com to see the update to the page. She has also posted the benefit flyer in a blog so we still have it on file. Thank you!

2009-10-09T18:03:00.001-05:00

Ellie's Flier PDF

Update on Ellie

2009-09-25T15:40:00.004-05:00

So today we decided to get something done with her eye because there has been something on the eyeball for the last 4 days or so. It makes the white part of her eye really red and it's not coming off. Ryan took her to the eye doctor this afternoon and he said she has an infection on her eye. So we now have new eyedrops 4x a day and ointment to put at night to help the infection. It wasn't bothering Ellie but it needed to be looked at since it wasn't something just stuck on there and going away.

So last week we had her in to Iowa City eye doctor for a check up and her right eye has improved marvelously in vision and movement. It went from 20/80 vision to 20/30 vision. So the atripine drops we have been putting in her left eye has helped her right eye get a lot better. She also has full movement of her right eye back! Celebrate! We are so happy to hear of the wonderful improvement. We are continueing the atripine drops to see if the right eye's vision can improve more.

Then we had her in to see the rehab doctor she had at Covenant to get new orders for evals again at EDI to see if she needs more therapy. The doctor had Ellie run in the hall and
noticed Ellie still holds her right arm funny and she also does not fully extend her right leg to run like she does her left. She still favors her left leg but she does have much better balance in the right leg. So balance is improving but the doctor thinks there are still more goals to work on so she gave new orders for evals at EDI. So Ellie has come a long way and there are just a few fine tuning that can be done to help her.

We are so excited about this update and hope to get her eye healed soon. She'll go back next Friday for a follow-up with the eye doctor to check on the infection. Oct. 28th is the next Iowa City appointment with all the doctors to check everything.

School is going well for Ellie. She loves it! Nate's doing great and the fam is back into a routine! Hope you all are doing well! Have a great weekend!

link to KWWL video

2009-09-21T09:44:00.005-05:00

Well I blogged kind of late that we were going to be on KWWL to talk about the benefit so I have found the link so anyone of you who missed it can watch it. Or if you go to the main page of http://www.kwwl.com/ on the right is a large box of top videos. We are the video titled Eastern Iowa Benefits on page two of videos. Enjoy!

http://www.kwwl.com/global/video/flash/popupplayer.asp?ClipID1=4142466&h1=Eastern%20Iowa%20Benefits&vt1=v&at1=undefined&d1=210034&LaunchPageAdTag=Station

Let me know if you have trouble using this link.

Channel 7 News Saturday morning

2009-09-18T15:59:00.001-05:00

Meghan signed us up to do a news spot with Danielle Wagner this Saturday morning at 7:40am. Meghan and I will be on talking about Ellie's health and the benefit. Ellie may be on sitting with me. We aren't sure if she'll actually do it. Just wanted to give you all a heads up if you want to see it. This Saturday, Sept. 19th 7:40am KWWL Channel 7 with Danielle Wagner.

Kids pics

2009-09-16T11:16:00.004-05:00

Thank you to a friend of mine, Jenny Bruss, for taking pictures of the kids again this year. We went to the Prairie Lakes area where we found a neat tree, bridge and prairie grass to capture shots of the kids. I love them all!!

Yes, by the end Ellie's eye was beat red and looked terrible. But she asked to do a lying down picture so this is what she came up with.
Best picture Nate gave us.

Ellie's signature look with a flower behind her ear. Remember the dandelion in her ear last year. This year she upgrated to a real flower.

Explanation of the benefit

2009-09-13T13:43:00.003-05:00

So I have been getting a lot of questions about what the benefit is going to be like.

There is no charge to get in. There will be a free will donation if you want to give something. We want this to be a time for us to thank everyone for all their support and to enjoy an evening of desserts, dancing, music and socializing. Ryan's dad, Richard, plays in a band so they will play some classic rock and country for part of the evening. Then Richard will DJ music the rest of the evening. We hope you bring our dancin' shoes so you can dance with us! There may also be a special dance with Ellie you can take part in, or maybe a dance contest or two that Ellie will get to judge, pick a winner and give away a prize. You'll have to come and find out what's planned. Lots of fun!!

There will be an assortment of desserts to enjoy, soda, water, lemonade and the bar will be open if you wish to purchase anything else. I will bring some books, crayons, paper and other sorts or activities around for kids to enjoy.

The silent auction is coming along quite well. We are getting many donations. I am so excited about this hearing about all the things people are gathering up and donating for this. Through the silent auction is where we hope to raise money to help us pay off the current, and possibly help with future, medical bills. I believe if you aren't there at the end, and you've won an item, we will contact you to claim it. I also believe it will be the type of auction where you write on a list your bid and others will come around, see your bid and choose to bid higher or not. So you may want to keep checking back to see if anyone has outbid you so you can bid higher if you really want that item. I believe the silent auction will run from 7pm until 9 or 9:30pm. If there is still a lot of bidding going on then we may extend it. Now this is just a bit of what I've talked about with my friends who are planning it but I may be slightly wrong on some of it. But this gives you an idea. If you have an item you want to donate I believe Meghan and Jamie are collecting the items before the day so they can prepare the sheets for each item. So you can contact Meghan at megclaw3@hotmail.com or Jamie at jamiebachman@hotmail.com to make arrangements to get them the donations. If you see Ryan and I, or our families, and just want to give it to us that is fine also.

Please let me know if you have more questions I can answer for everyone or contact Meghan or Jamie. Thank you all and we are looking forward to this evening!

First week of school

2009-09-04T16:03:00.005-05:00

Well Ellie has finished her first week of kindergarten and she is having fun so far! For the first 5 days of school all she could tell us was that she ate. So when we asked her what she did in school she would say, "we had snack, then we ate lunch, then we had an afternoon snack and then another snack at Jane's!" Jane's is her afterschool daycare. We just laughed and laughed when she told us the same thing all week. In the past she has never been able to remember what she ate and now she is only remembering that she ate. Maybe has something to do with the huge eating growth spert she's having these days. She seems to eat a lot lately, more than Nate who usually ate more than her. Anyway, these past two days of school she's been able to tell us something other than eating. I think days six and seven things are finally sinking in and she's getting used to the routine of things she remembers what she does now.

She got to swim on Thursday which was fun for her! She gets to go to the library on fridays which she loves also. She brought home a recipe book of valentine treats. Not sure if she thought we'd make those things if she brought it home or if she really just wanted to look at it and read the yummy recipes, but we did. She knows they played a game in PE and they, "rolled balls at this thing and the blue team got to go first." Not sure what this meant but that's what they did. Mr. M has been the letter they were studying and she doesn't get to sleep during rest time because, "ALL THE OTHER KIDS ARE TALKING!" is her expressive way of saying why she didn't sleep. The nurses are doing awesome giving her the eye drops every two hours! All around Ellie is very happy! SO ARE WE!!

Thursday night was the first NU High home football game in the dome. Ellie wanted to dress in black and orange for the day and then go to the game. So we loaded up and headed to the dome. We got to see some teachers and other staff we knew from our years at NU High. We also ran into some other alumni we know. Ellie found friends right away and wanted to be social with them. Geez it starts already, didn't want to sit with the fam for the game, she wanted to socialize. I guess I was the same way, a social butterfly, so I'm happy she's social also. Oh...but she would sit with us when she was hungry and wanted food. I see how it is. It's starts now, she's only in kindergarten and like tomorrow she will be graduating. hhmmmmm....

We have a long weekend coming up and I am on the work crisis line. I believe it's going to be a quiet one. Ryan is working on his dad's house finishing up the brick all weekend so I'll be entertaining the kids and doing house upkeep. Fun times...Well that's all for now folks and I'll be seein' yall soon! Have a good one!

More pics

2009-08-28T15:48:00.003-05:00

Over the weekend we went to see how far along Richard and Carol's house is coming in Parkersburg since we hadn't been there in months. This is Nate playing in the dirt and cement pieces that grandpa Smiley is air chizeling off a rock for the neighbor.

The skid loader scared Nate to tears but he rode it for a little while.
The last week I was in I.C. with Ellie we took Ethan and Ellie to the fountain to play so here are pics of them playing.

One of the days we went to the Museum of Natural History and bought a dinosaur egg to dig into. Here are the bones we were excavating. Turned out to be long neck dinosaur bones.

Here is Ellie playing with Gabe and Mimi working on Gabe's dinosaur egg. One Sunday Ryan was mowing the yard and Nate climbed up on their sand box to watch him over the edge. He litterally stayed there watching the whole time. I was amazed he stayed for so long.

The rocking horse and other riding toy aren't good enough for Nate. He figures out how to ride his large dump truck that isn't really a riding toy. It's hilarous watching him get around the house on this thing.

Sitting like this tends to get Nate dumped out.

Check out the blog to see the flyer

2009-08-27T16:03:00.002-05:00

Hey all, I know many of you don't actually go to the blog to get my updates, you get them in an email. I wanted to let you all know if you want to see the flyer and get some details about the benefit please actually go to the blog site. http://www.wearesmiley.blogspot.com/ It's at the top and you have to scroll down in the window of the flyer to see the rest. Thank you!

First days back at home

2009-08-27T15:35:00.003-05:00

Here are pictures of first evening back home and morning of first day of school.

After Ellie took pictures with Ryan and I Nate walked up there and stood by her cause it was his turn aparently.

Ellie wanted to give flowers to the technicians, nurses and doctor that have helped her in radiation this summer so they got roses for them. Ellie also wanted a rose for herself but a different color. So this is Ellie's yellow rose she wanted to take a picture with.

As a part of her last day of treatment the technicians bought Ellie a big cookie. This is a piece Ellie is finishing at home that she wanted me to take a picture of her eating.

We inherited a build a bear from someone who donated it to the Ronald McDonals House who wanted it to go to a good home. They they asked me if Ellie would like it. So we took it because Ellie found one in the window almost identical to this that she loved. So we surprised it with her last night since she's all done! She loves it.

Nate immediately saw Ellie's mask and put it on his face. He just didn't get his eyes in the holes. How he knew what to do with it I don't know but I caught a picture of it.

Ellie's last day!

2009-08-25T10:02:00.004-05:00

So Sunday night I decided to give Nate a hair cut with the trimmers. Ryan and I had talked about giving him a mohawk for fun for a short time so here are the pictures of Nate and his Mohawk.

Ellie has made it through Monday and Tuesday fine, even though she didn't want to go back this week. We found out tomorrow, Wednesday, is her last treatment!! We are so excited to have this ending and getting back to a normal life. We are going to try to get her to start school this week, Thursday. I had a good conference with her teacher yesterday afternoon then visited with one of the nurses for a long time about her needs. We are all excited to see her starting! After I visited with the nurse I saw Ellie's friend Ahmad and his mom. It was so cute, Ahmad asked immediately where Ellie was. I answered and told him she was so excited to see him again and hoping they could play together once she started.

So that's the good news and be keeping an eye out for the info about the benefit. We almost have a flier completed. Meghan and I, hopefully Ellie, will also be doing a spot on the KWWL Channel 7 news on Sat., Sept 19 I believe at 7:40am live with Danielle Wagner about the benefit. Neat experience Meghan set up and hopefully Ellie is interested also. That's all for now and we'll keep on updating as we go.

30 done, 3 or 4 to go!!

2009-08-21T19:51:00.002-05:00

Well the week was very busy and went quickly. Tuesday my mom took the afternoon and all of Wednesday off to come hang out with us. Monday afternoon we went to the Museum of Natural History in Macbride Hall on campus. That was really neat. They have quite the extensive display of animals. There was a HUMONGOUS ground sloth that was quite scarry to Ellie. She didn't want to stick around to look at that or the prehistoric fish. After enjoying the museum we got a dinosaur egg that had bones inside to glue your own dinosaur together afterward after you pretend you are a paleantologist and dig them out. It was quite dusty finding all the bones in the egg but we did it in one day. Now my hand is bruised from the hard wooden chizel I used to dig the bones out while Ellie used a brush to dust it away.

Wednesday we got to watch Ethan and Haley fur a few hours until their dad got off work and that was fun. We went to the pedmall and played on the play ground and in the fountain for a little while. Then had a picnic that turned into an inside picnic due to rain. Ethan was sad to leave because he was having fun. Tuesday night we went to Hu Hot for dinner because Ellie loves the idea of picking her own food and watching the guys "chop it" to cook it in front of her. Then she saw chop sticks which she called "pork chops" and ate her meal with those. Quite impressive, although they were rigged to use the easy way by pinching them.

Thursday Ethan and Haley hung out with us again and after radiation we just hung out at the RMcD House. There are plenty of other children there to keep them busy for the day. After Jesse picked them up Ellie and I went to the movie Ponyo. It was adorable. If anyone is contemplating seeing it I would suggest YES! The artwork is beautiful, the story is prescious and the characters are adorable. I LOVED IT! It's animated but not like many movies these days. It's different but still great! Just looking at the pictures, soft colors and the artists' take on things is really beautiful. Hope you enjoy it as much as we did!

Friday went smoothly at radiation. I had to say goodbye to the RMcD House staff and the radiation staff because I don't think I'll see them again soon. Everyone was amazing to us. Ryan will go with her for the last 3 or 4 days. Now we are confused when our last day is. Doing the math we think the last day is Wednesday but they told us Thursday last week. So Dolly has to look it up to confirm. If they are home Wednesday night then we'll probably send her to school Thursday and Friday so that's exciting. If it's through Thursday we'll give her Friday to rest up and be ready on Monday to start. She is going to Jane Wilson's daycare for afterschool care until Ryan gets off, which doesn't seem to be too long, maybe an hour. Javier and I went to Jane's Daycare when we went to the Lab School. We are excited to have her in both that school and daycare!

Well, we'll see some of you sooner and others later. Thanks for keeping up with us and have a great weekend and next week!! Good luck to all students going back to school and to teachers starting another year teaching. Hope the students treat you well. ;)

Monday of Week 6

2009-08-17T20:02:00.003-05:00

Well the weekend went too fast, but it went very well I guess. Ryan worked at his dad's and I did the typical shopping for groceries, laundry, etc. Ellie met another couple 5 year olds at the Ronald McDonald house Sunday night. They enjoyed time together in the play room.

Today we got up and headed straight to radiation since it's at 9:30 now. We were told to see Dr. Bautti today instead of Wednesday so we stuck around to see him. Ellie pulled a fast one on the doctor today. She wanted to hide from him and he did a good job. She hid under the desk in the exam room, put a bag of her stuffed animals infront of her and hid. He walked in, looked around the room for Ellie, looked at the bag and just began talking to me. Part way through our conversation he saw Ellie move under the desk and was so surprised she was under there. He was even more surprised that she actually pulled that on him. He said he usually sees kids hiding but she did a good job he didn't realize she was under there. So Ellie thought that was fun.

He apologized for springing the extra days on us last minute. Kelly the nurse consulted him before she returned my call last week and she could tell I was crying on the phone when she heard my message, so I believe she told him I w as upset, so he apologized for springing that change on us. He said he believes it's safe for her to receive that little extra radiation to make it better chances she won't have a reoccurance. Especially since she is receiving the treatments so well and not having terrible side affects, he thinks it's the best. Before they were focusing on a golf ball size cavity in her brain where the tumor was and now they will focus on a dime size area. We noticed there are large patches of missing hair that has fallen out due to the radiation. One by the scar and another under her long hair.

Over the weekend Ellie picked out some old stuffed animals that she's not attached to anymore to give away to sick kids in PICU. The many new stuffed animals she received from her stay in the hospital are too precious to us still we couldn't part with those. So today after the appointment we made our way up to PICU hoping to see doctors and nurses that cared for Ellie when we were there. We did run into some people we knew but many we didn't. Ellie happily gave away some old stuffed animals to the sick kids. Some young, tiny babies, and some teenagers all the way to age 21. It was a neat experience. Ellie immediately had sympathy for them and was telling them to get better soon. I think she felt rewarded after seeing smiles on kids faces that she said she wants to give more to kids again. It was neat to see Ellie give back, have sympathy and ask what others were sick with. She has grown up a lot through this. She still of course has her "Ellie" moments.

Tomorrow we want to go to the Museum of Natural History in the Pentacrest at the old capital and then maybe take Ethan and Haley to the Children's Museum in Coralville sometime this week also. I'll keep yall updated as we go along this week. Have a good one!