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.
Friday, April 23, 2010
Monday, April 12, 2010
Surgery scheduled
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.
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.
Thursday, April 1, 2010
It's been a while
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!
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!
Friday, March 12, 2010
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!!
Thursday, March 11, 2010
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.
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.
Friday, February 26, 2010
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.
Monday, February 22, 2010
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.
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.
Subscribe to:
Posts (Atom)