Eye update part 2

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

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!

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!

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

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

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

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

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

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

Here are pics from the silent auction at the benefit.

Benefit pictures

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...

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!!

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

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

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...

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...

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!

Ellie's Flier PDF

Update on Ellie

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

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

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

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

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

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

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.