Sunday Fun!

Sunday was another fun day for Ellie. Abuelo and Abuela came to visit for a while. Ellie had a great time reading, playing with model magic and walking around with them. Then Hudson, Stephanie and Linda came. Ellie took Hudson's hand to walk back to the room after coloring for a while with him in the play room.

Shortly after Hudson got there Ellie's friend from Preschool also showed up with her mom. Ellie had been waiting and waiting anxiously for Emma to visit. Ellie ran to give her a hug when she got here. It was so cute.
When we were ready to go outside and play Ellie reached for Emma's hand. She was so excited to play outside also.

When we got outside there were slides...

ramps...

Ellie's first trip down the slide holding on to everyone to be very cautious. Woah...Hudson is being pulled down the slide, she didn't wait for him. YIKES!

Pretend play in the clubhouse...serving pancakes! YUM!

While we were playing outside Emily showed up with Ethan and Haley for a visit. Here's the gang lookin' at the fish.

At the end of a fun filled day Ellie is worn out and ready to tuck into bed at 8pm.

Outside!!

Well Ellie was off and wanting to go go go this morning. She got up and dressed and wanted to walk so on our walk around the hospital halls we did our physical therapy exercises and scoped out the playground she gets to go to when it warms up. We are excited!! She's also up and making things with the model magic already this morning. That's the second thing she asked for after a walk. Crazy girl. Got some fun visitors planned today so we'll get pics up later of all her activities. We are still keeping her off food til the doc says we should try things again slowly. He said he'll look at the stitches tomorrow to see if it's time to get them out and he'll evaluate thing Tuesday to see if he's going to send us home or to Covenant Rehab. See yall later!

going home...

Don't let the title get your hopes up. Just using that as the topic I'm going to talk about. Anyway, Menezes was happy to observe Ellie during therapy yesterday to see how well she was doing physically. We expressed concern about Ellie's coughing all day yesterday and then for a while that morning since she woke up. He said from the study and hearing her she hasn't learned to swallow on her left side only yet. Well who knows how to swallow down one side of your throat? No-one...anyway, so he said to stop eating at least until she stops coughing so much. We'll talk to him tomorrow and see what he says about starting food again. She still coughed all day and is only swallowing her own saliva. Her secretions are getting into her wind pipe and making her cough. He said he'd evaluate things on Monday and Tuesday to decide on when to send us home, either to Covenant Rehab or all the way home if we feel comfortable taking the tube feeding machine home. We said we did feel comfortable with that so we'll take either home or to Covenant. He also said they could put a feeding tube right out her stomach with a simple surgery if it would be better to feed her that way. We want to prolong that and try keeping the tube in her nose we thought. The doctor agreed he wanted to also prolong that and not do it.

Tomorrow we are going to ask him if we can take Ellie outside. Get some sun or just out of the building. We do have a bed at Covenant if we need if and we will meet that person on Tuesday. We talked to the social worker on this floor and he talked to us about applying for some waivers through state programs. She may qualify for the brain injury waiver and or the ill and handicapped waiver. So we are looking into that to see if it's something she qualifies for. We have an oncology appointment on Tuesday we will go to then hopefully head toward home Wednesday. That's all for today and we'll be back on here tomorrow!

Aaargh Matey!

Aaarrrgh Matey! Caught her in the middle of a blink and I think she looks like a pirate. This is Ellie yesterday with the paper crown daddy made for her.

Rice play...

Ellie liked a card we got from Alice with a butterfly on it so she asked me to take a picture of her with it. We have been making butterflies for days with model magic and play dough.

Friend from Preschool Elizabeth came to visit. They call her Ellie also so we had two Ellie's here.

Emma Lewis also came to vist. She had fun doing lots of different activities with Emma.

Model Magic. I think we need to buy stock in Crayola with all the model magic we are going through.

Playing with Barbies.

Eliza Sunshine Dane came to visit! Princess Eliza!

King Ryan and Princess Ellie! Daddy did an awesome constructing these crowns for the girls.

Grandma Julie was the one who brought the sparkly pipe cleaners to make things. They were a big hit.

Princesses Eliza and Ellie walk to Ellie's room. Ellie's pretty steady on her feet.

Hangin' in bed together.

bummer day Thursday

Today started out fine. Played in the rice this morning had a visit from the Hintons, and went to the swallow study. Ryan went back with Ellie to watch the study. He could see the video of them taking X-ray while she swallowed things. They found out that her muscles on the right side aren't responding how they should to make the food go down correctly. Some of the stuff she swallows goes into her wind pipe. Then of course she coughs which brings most of it out but this isn't good. They are optimistic things will get better but it's a waiting game with this along with the eye. We just have to give it time to see if the swallowing skill comes back. We are hoping to get therapy to help her. I know there are Speech Path/Aud. swallowing specialists reading this. Is there therapy for this? I'm sure her doc will set her up with therapy soon, once he see the results. So needless to say we are bummed because this means we may be here a long time or that we will go home either to Covenant inpatient for rehab therapy or to our house with the feeding tube in her nose.

Thursday update in Peds

Today we started off doing the art activities for almost 2 hours then Ellie was tired and wanted to go rest, we got back to the room and they said we had to go to a consult with the eye doctor. So we were off. It turned out to be an almost 2 hour visit, mostly waiting. We got a consult to see the eye doctor because Ellie's right eye doesn't close all the way which makes it suseptable to dryness and damage. They wanted to see what her vision is like and evaluate things to be able to recheck things in the future incase damage starts affecting how Ellie sees. Well she fell asleep waiting, poor thing, then right when we got back she was going to tuck in and take a nap, but not yet...The person to do the swallow study was here for her. We weren't aware this was going to happen today so we weren't prepared. She was very uncooperative during this but she swallowed enough things that the guy could do some evaluation. He recommended we do another study tomorrow when they can take X-rays while she swallows to see how everything is woring in there. So we have been preparing her for that. Pray she cooperates so they can get a good study done and the best evaluation possible.

When Doctor Menezes came by he was very pleased with her progress in walking, activities, responses and swallowing. I asked the doctor that comes along with him what she thought about when Menezes would discharge her. She thought when she can eat full nutrition on her own. So that's our goal. Full nutrition for Ellie and of course everything else strong enough to go home also.

Ellie finally got to sleep for a couple hours. When she woke up we spent a long time in the play room doing art and playing with leggos. Then we got to see visitors and Nate tonight for a little while! That was nice! Ellie asked for chocolate pudding so she got her chocolate fix for the second evening in a row. Off to bed for her and laundry for us at the house. WooHoo!!

Day full of art

Bev and Larry Saug stopped by while Ellie napped after her long morning. We slid out to eat a quick lunch in the cafeteria while they stayed with Ellie incase she woke up. We all had a peaceful chat in the dark while Ellie slept. Not too dark.

Of course when Ellie woke up she wanted to open her present right away. We are excited to try the Zingo game, Bingo with a zing, with friend Eliza when she comes Saturday.

Ellie took advantage of the art opportunities today. There was butterfly making after her child life visit where they painted. Then later in the evening while waiting for Teresa, Kriss and Nate to get here we did more art. WOW!

Here Ellie wanted a picture with her artwork that she spread out on the bed. It's hard to tell from the colorfull blanket underneath but she played with Crayola Model Magic which she thought was way neat and thinks she needs more. She used cookie cutters to make shapes and flowers, teddy bears, etc. She also has her paintings and coffee filter butterflies spread out.
Ellie asked daddy to take this picture of us.

planning committee

This is an email I got from a friend:

Hi Everyone! I am a friend of the Smiley Family. Myself along with a couple of other friends are planning on doing a fundraiser for the Smiley Family. We are thinking that we will wait to do it until September. This way we can put the appropriate amount of time into it, get the word out, etc.! We are not sure of the exact details yet, but a group of us will be meeting in the next week. If you have any thoughts or ideas, or would like to help in any way, please feel free to contact me. Thanks! Meghan Lynch megclaw3@hotmail.com

Day 1 on 3JCP

Ellie was a trooper during moving yesterday. She was really excited to move. She was up and helping us pack bags and get things ready. Then we got down here and she wanted to keep helping. She is becoming more of herself. When she wants to do something she tries to hop up and go immediately. She has to be slowed down so we can unhook her wires and tubes. Another thing is that she is happy to do things by herself again.

Jamie and Meghan took mommy out to dinner after visiting with us in the room for a while. It was nice to get out with some girls and not be stuck in the hospital. We didn't even talk about work so that was great!
Ellie is enjoying her chocolate milk shakes.

Ellie finally got to take a real bath and we washed her hair. So I had to get a picture of clean Ellie with combed hair. Lookin' Good honeybear!

Ellie had painting time last night. She was so excited to go. She painted two pictures and was ready to go back to the room.

Had to post another cute picture of Ellie and mommy.

Last night in the evening when we were trying to settle in for bed Ellie said she wanted to go back up to the other room to sleep (PICU). She wasn't sure why but she was ready to crawl out of bed because she wanted to go back upstairs. Then when she was ready to falls asleep she said, "ok mommy, you can go now, I'm ready to fall asleep." I thought this was so sweet, telling me it was ok for me to go. She's a brave girl.

couple more pics.

Ellie starts her daily regimen of physical therapy and occupational therapy. These are the therapists to meet and talk with her about what they are going to do. This day Ellie took them on a long walk around the PICU. Down in Peds Ellie got to go to a gym and play with them. She came back tired out and ready to rest.

Ellie sits to play with little ponies.

When our friends got here to stay with Ellie while we went to dinner Ellie got to open a gift. Then she enjoys the company of Jerry and Jill for a couple hours. They played cards, read books and sang funny songs together.



Ellie also plays games on the computer when she's up and sitting. Using the mouse wih her right hand is good practice.










Mandy and Justin surprised us with a visit for a while on Tuesday! It was great because we hadn't seen them in a long time. Ellie was all smiles and cheerful.

Pictures from last two days activities

These are some of Ellie's stuffed animals she holds tight to when she needs comforting. Lana the lamb, twin bears from Seeds of Hope and UNI Credit Union and Nathan's dog we forgot to send home with Nate. She loves all the soft cuddly animals.

Ellie has been asking to sit on the couch and chair much more often these past couple days so here she is playing Deal or No Deal on the Nintendo DS. She did great in this game, mommy taught her to always say NO DEAL! and Daddy always wants her to take the deal early.

She takes her food and meds with her on the cart if she needs.

Ellie got to ride in this car when it was time to move to the Peds unit. She smiled and buckled right up. Even took white bear for a buckled up ride.

Just as we were packing up her stuff someone from a the program Basket of Hope dropped off this huge basket of activities for Ellie. She got to open it downstairs in her new room. She got kids Christian music on CDs and on a MP3 player, children's Bible, coloring, beads, teddy bear and games. A neat program!

We have moved!

Today Doctor Menezes was very happy to hear Ellie was doing well eating whipped jello, jello and chocolate shakes so he agreed to move her downstairs. Plus they needed Ellie's room for another patient that was coming in. We are in room 62 of the pediatric inpatient unit (3JCW). Elevator H to 3rd floor then down the hall to the right. Room is much smaller but we can manage. Either Ryan or I will be staying with her at night now because we need to be available to help her when she needs if the nurses aren't available. Ellie's eating has been going well. Although the fluids which are harder to swallow did give her trouble yesterday once. Coughed a lot while drinking water. Ellie has been wanting to go on walks and stay out of her bed a lot now so that is fun to see. Right now she is with OT in the gym playing. She was pretty excited. We aren't sure how long we'll be here but we'll keep you updated! I'll have to get pictures up later when I can figure out the dial up internet in her room. More to come later.

Cancun for our anniversary!

So Ryan and I went to Cancun! He he we pretended and went to a restaurant called Cancun. Nothing fancy but it was nice to eat at a normal dinner time instead of waiting until Ellie goes to bed to leave and eat. Friends, Jerry and Jill came down for the evening and sat with Ellie while we left for our anniversary dinner. It was nice knowing she was enjoying their company, happily while we were taking some time for ourself. Ellie was smiling when we got back and was asleep later than usual but it was all good. Thanks Jerry and Jill.

Ellie went on a huge walk this evening all around the PICU. She also ate whipped jello and solid jello. The smoother whipped went down easier then the solid, but we'll keep working on it. Tomorrow we are off down to the family lounge to put gold tokens in the machine to get snacks. This walking trip is the goal the therapists gave us to complete every day three times. Guess mom and dad will be getting snacks. Or we'll have Ellie deliver them to the wonderful nurses and doctors that are taking care of her. Ellie will also be starting Occupational therapy and play therapy with other people. Music therapy will be sometime soon because Ellie likes to play musical instruments.

Lookin' forward to days with more activity!

pokes and prods

Today when we got to Ellie we saw the doctors and nurse Amanda back on the floor. We are happy to have them back after the long weekend. Today Ellie talked for the nurse and doctors! She's talking much more. Something that wasn't good was that her IV hand was puffy so they had to take it out and try to put another one in. Well that's where the poking and proding comes in. They poked her once in her right hand to try to get a vein, that didn't work so they poked her in the right foot. Missed there also. Then they put cream on her wrist and foot to numb it so the next time they tried she wouldn't feel it as much. Well it came time to try again and Ellie wasn't thrilled so she tried fightin' some. Then they poked the wrist again and that one didn't work, then they poked the right foot and that one didn't work. So they decided to go for the big vein in her right inner elbow. Well that one hurt because there wasn't cream on it and it also means she can't bend her arm as well. So we are hoping she will only need this one for a couple more days.

This picture is Ellie taking her first sips of grape juice. This is the first time she's been allowed to drink besides the popcicle. She enjoyed it, didn't cough while drinking and didn't drool. So her swallowing is getting stronger! Today Ellie is wearing her hair down like she usually has it. It's nice to see her looking like we are used to seeing her. It's a little wild in the picture but we brushed it so it's more tame now.

Monday's update

This morning the ENT team came in to do the scope they told us they were going to do. They put a camera down her nose to mainly look at her vocal cords. The doctor said they didn't think the right cord would move but they were encouraged when they think they saw it move when she coughed. This was promising. Doctor doesn't think she is ready for a swallow study so that is postponed until we know she is swallowing well enough to do it. It can be risky if the patient isn't swallowing well enough. There is still lots of swelling in her throat around her vocal cords which makes it hard to swallow. Pray for reduced swelling so she can swallow better and progress to liquids by mouth and maybe soft foods. She was begging for food today but when I asked if she could have something they still said no. If her swallowing and eating don't progress very much she may be sent home with the feeding tube for a while. We obviously don't want this so lets pray for healing of her throat. We can see good healing when she talks because now she is speaking more frequently and saying sentences. She did say she wants to go home, which brought me to tears.

Doctor still wants her to stay in PICU. The ENT thinks she may be in the hospital for another week but we aren't sure when we get to move downstairs. Today Ellie walked down the hall twice. Once about 100 steps. Then later in the evening she walking really far to see the fish momentarily then walked back to her room. She did well with only holding one hand. Her right one even. Then she returned to the chair where she has been sitting for much of the day supporting herself without pillows. This is also good for her lungs to help move the stuff around in there so they don't have to suction it out as much. She doesn't like the suction tube being put down her throat or nose. I don't blame her, who would? Anyway, another peaceful day with some fun visitors! Thanks for everything!! Love you all! Night Night!

Aaaaahhh! Nate!!

Yesterday Nathan and Grandma Julie came to visit. Nathan and Ellie were excited to see each other. He jumped right on her so we had to get him off. He wanted to touch her face and pull on the tubes. Ellie reached out to him and wanted him to sit on her lap. He of course isn't still enough to do that so he ran around the room like a wild man with cousin Hudson. Crazy boys.

Here are Tio Javi and Dennis sitting and visiting with us.

Titi Steph sat with Ellie for a while to visit with her. Hudson held Ellie's hand. He pointed out that she had an owey on her hand. He saw the bruise from where an IV used to be.

Here is another smile for all the visitors. As you see her left eye is wide open a lot. There isn't drooping in her right eye lid, and her left eye still squints when she smiles. Ellie will never get the movement back on the right side of her face unless we do another surgery to split a nerve and reroute it to her face. Then she can learn to move her tongue to make her mouth smile on that side. Other kids have had that surgery and are doing great now. It wouldn't be for a year or more when they'd do that surgery, so we can give her time to see what kind of progress she makes with therapy and healing.

Ellie wanted to open the present right away like she does with all the presents she gets from her family and friends. Typical kid that loves presents. All of the gifts from everyone will come in handy when she has a lot more strength and energy to do activities. She does activities little by little each day.

Ellie is getting better every day!

This morning we saw Abuela and Abuelo again for a visit.

I got a smile out of Ellie for a picture by tickling her.

Ellie walked partway down the hallway then back to the room. After that she sat a long time in a chair where she watched Dora and talked to grandma, grandpa and DoLoras.

Here is DoLoras helping Ellie pick out clothes for the paper doll set she brought Ellie. Ellie love dit so much she dressed all four dolls and set them up. DoLoras also brought mommy and daddy a fruit and snack basket that tempted Ellie to ask for food. She still can't eat but can have popcicles. We need to wait for Dr. to say she can move up to food.

Here are the paper dolls Ellie wanted me to put on the blog.