Stitches out

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

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

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

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

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

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

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

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

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

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

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

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...

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

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

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

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

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

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

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

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

You can shout and help too.

MRI results

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

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

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

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!