Relay For Life

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

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

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

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!

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

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

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!