Our special day

After therapy Thursday Ellie knew I was taking her to get her hair cut. What she didn't know is that I scheduled her to get her nails done also. So I surprised her with that, since when I went to get mine done she wanted to come with me but couldn't. So here are pictures of Ellie getting her hair done at Sensations Salon. Jaccie did her nails and Tonya cuts our hair.

Ellie smiles as her fingers soak.
Aaahh a nice hand massage.

After the painting is done she sits to seal all the pretties she had put on her nails.

Ellie got a gem, stars, hearts, lines, and flowers put on her nails. Sorry the picture doesn't show them well.

Here is Ellie getting her hair cut.

After every cut she insists on sweeping.

Tadaa! The finished doo! We love it!

So after all that special fun Ellie had special gifts at home waiting for her from Princess Taylor. Ellie got a vanity table and tons of nail polish, lotion and lip gloss stuff for little girls. She also received other lovely things from Princess Taylor and family. The mom works at the State Training School for Boys in Eldora with Tio Javi. We would like that family to know we are thankful for their gifts.

Ellie played at this table all evening and again in the morning until it was time to go to daycare. She was up when I walked out of my room at 6:20 already putting things out. I didn't even have to wake her up like other mornings. She absolutely loves it. Girly girl!

Physical therapy

Here are pictures from Ellie's last day of inpatient physical therapy

Ellie liked the turtle a lot. She pushes herself all around the gym floor on it. Sometimes she gets a ride if the therapist pulls her.

The trampoline is something Ellie has always liked.

The crab walk.

Playing hot potatoe with her feet kicking a "hot" ball was something Ellie loved.

"no ga ga"

Rejuvenated is the word for the week. I was looking forward to a nice relaxing weekend and that is what I got. We did a few fun things as a family then I got some rest and relaxation. Monday morning I felt good and Tuesday I still felt good. Wednesday morning at work I felt tired some but then as my day picked up it got better. We registered Ellie for kindergarten last night at Price Lab. I was excited about that. We are looking forward to this summer being over and starting a new chapter with Ellie. She was assigned to Mrs. Bromwich's class and we signed up for a first conference with her. Wow! I'm getting so excited to get her off to kindergarten. Now this morning I feel tired again and wiped out. Two days of resting made for two days of feeling good.

Something else Ryan and I have been having fun with is hearing Nathan talk. He's really got that language learning window open right now and has said some two word phrases which really floors me. He pointed to Ellie one day in the car, as she had her head down resting, and said, "sissy night night" in his own fashion. He has also pointed at Ryan's hat and said, "dada hat." He says what sounds like ga ga when he gives us things and when we give him things. We figured out it means thank you. He now says, "no ga ga" when he doesn't want something. No thank you is what we've taught Ellie to say, since she was young, when she didn't want something from someone or didn't want to do something other kids asked her to do. It caught on at daycare and now Hudson and Nate say it. Nate's "no ga ga" is so cute, I love it. Last night he saw a picture of himself and says baby. Ryan was pleasantly surprised at that. I don't remember Ellie doing this at this young age, but then again I don't remember much of anything anymore.

Hope everyone has a safe Sturgis Falls weekend, we are headed to the parade Saturday morning. Woo Hoo!

Much needed weekend.

Well it's been a nice weekend and we will end it with a fresh fish meal Ryan will cook. Yeah, it's father's day and I should cook for him but he and Ellie caught bass and bluegill at a friend's pond yesterday and Ryan cooks them up good. I'll make other stuff to go along with is. It was nice to see Emily and Ethan and Haley this weekend. They came up for a softball tournament and home run derby benefit the church league softball team, had for us. To get into the home run derby people paid $10 for a t-shirt and a chance to hit. They decided to give the procedes from the derby to us to help us with expenses this summer. We are touched they chose us. We are very grateful. After a horrible experience at therapy Friday this weekend was much needed. I got 9 hours of sleep Friday night. That was nice. Aparently I still look tired so I need more sleep. He he!! Getting back to daycare this week went very well. Ellie was happy to be there and her friends were happy she was back. The staff at SonRise are being very supportive and helpful in putting her eye drops in every two hours. This is so important to us. It's nice we can put our trust in a place to take such good care of our daughter after something like this happened. Ryan is off fishing by himself for a while, Ellie is playing at our neighbor DoLorases house and Nate is sleeping. I am enjoying time on the computer and I'll wrap things up now to get to some housework. HAPPY FATHER'S DAY! to all you fathers out there reading this. I'll catch up with pics later. Have a great week!!

adjusting

Well since we've had Elllie home we have all been happy to get back to somewhat normal routines. Ellie has been excited and not wanting to go to bed at 8 like usual. She wants to sit in her room and play with her toys. She begs for five more minutes. I can tell she really missed just playing in her own domain. Now we begin the process of unpacking all the gifts she received.

She went back to daycare at SonRise yesterday. She was excited and happily went to play. She reported she had a good day and even came home with braids in her hair! This morning she had trouble letting go of me. She wanted to come with me today. All of this change every few weeks is taking a lot of adjusting. This morning she complained about not wanting to wear sunglasses so I explained the importance of that to her again, she took them with her anyway. She said she just wants to be "regular again." So I asked her what she meant by regular, she said, "not have to wear sunglasses cause of her eye." She wants to be able to close her eye and smile again like "regular". Sweet pea. It's sad and hard to hear her say she doesn't have a pretty smile and see her cry because she wants to be regular again. It makes my heart ache for her. I cry with her sometimes. How do you explain to a child why she has to go through this?

Words to comfort...

This was given to me by a co-worker, I like it and read it often as it sits here on my desk, thought I'd share it:

"May today there be peace within. May you trust that you are exactly where you are meant to be. May you not forget the infinite possibilities that are born of faith in yourself and others. May you use the gifts that you have received, and pass on the love that has been given to you. May you be content with yourself just the way you are. Let this knowledge settle into your bones, and allow your soul the freedom to sing, dance, praise and love. It is there for each and every one of us."

We get to take Ellie home!!

We found out we get to take Ellie home Tuesday, tomorrow!! It will be late afternoon by the time we make it home but we will be home!! Praise God! Kids bounce back quick.

Ellie loves visits from friends and family

Kim and Kalli Tiedt came to visit for a while Friday afternoon. This is Ellie and Kallie relaxin' in the bed. They didn't relax much though. They played hard.

Caeden, Ellie, Nate and Kalli taking a ride on the hospital bed way up high. Silly kids.

Ellie asked for peaches when she got her tube out and she was allowed to start eating. She has barely stopped eating since. ;)

First pic without her feeding tube.

Nate Ellie and Hudson rocking in the chair.

Ellie in the tall grass in the garden area outside rehab.

Ellie and Hudson walking around the garden.

The three in Tuggy the tug boat.

Ellie with Karen her speech therapist blowing.

Therapeutic Rec therapist Kim blowing bubbles with Ellie.

Ellie got another prayer shawl and wanted a picture wrapped in it. This one is from the ladies at First Presbyterian Church in Cedar Falls.

Ellie and the neighbor's grandson Caeden painting.

Ellie, Ethan and Haley coloring.

Nate shoved his cheeks full of food.

Catchin' up on photos

So I haven't put photos up lately because getting back to work and then helping Ellie at the hospital and switching nights taking Nate home it is busy.

This is Ellie and Alexis painting together. Alexis is a daughter of one of the occupational therapists. The girls had fun together.

Sunday night at church was one of the vacation Bible School activities that we were able to take Nate and Ellie to. Here is Nate up close in the air bouncer.
Here is Ellie inside with Haley and the big ball.

Here is Ellie, Javier and Hudson trying to play paddle ball together. It doesn't work well when you have two young kids who aren't coordinated enough.

Ellie loves her Tio Javi.

Ellie throwing the rings with Jennifer Nabholz.

And throwing the squishy balls into the buckets.

The clown made Ellie a flower.

Chloe the clown entertained the kids. Jade was her helper for the night!

Lilli painted a purple on Ellies cheek.

Titi Steph helping Hudson and Nate looking on.

Haley and Nate, Alisha and Preston hangin' in the air bouncer.

Haley helping Nate jump. He absolutely loved it. All the kids loved it.

Ellie got to go to church Sunday morning also!

Ellie rode on her pump Sunday morning while I pushed her around the halls.

More pictures to come!

Celebrate!!

We had a successful morning! Ellie had her swallow study this morning so before hand we had to pull the tube from her nose to get a better picture of how her throat was working. It's easier to swallow without a tube in there. So she swallowed applesauce, cubed peaches, vanilla wafer, honey thick fluid and thin fluid successfully with nothing going down her wind pipe!! We are so happy and were in tears with joy! She is off tubes and can eat food now!! Praise God we are thankful!!

Just a quick update, I'll do more later.

updating this week

Well so far we've had an up and down week. It all depends on Ellie's mood. She is seeming more and more like her old self with all the mood changes. Sometimes she's bummed and missing everything and other times she's living in the moment and accepting what's going on and enjoying it the best she can. It's hard to see her cry about missing school, friends and eating. Other times it is neat to see her explain her tube and her surgery to kids who see and ask her what happened.

We were supposed to have a swallow study today but that didn't happen because the GI doctor couldn't guarantee that he could see her tomorrow to put the G-tube in if she needed it. It's a big challenge scheduling the swallow study after pulling the tube from her nose and then having a G-tube ordered and here in time so the doctor can do a quick surgery all just in case her swallowing isn't good enough. It's confusing I know but I'll leave it up to the doctors and therapists to schedule and talk about. We are hoping that her swallowing just keeps getting better and maybe by the time the study is done she won't need a tube! Woo Hoo! Lets pray for that.

Ellie has had wonderful people stay with her this week while daddy and mommy went back to work some. I have been stopping in every morning, noon and evening. Friends and family come to the hospital to spend time with her while she's not in therapy which has allowed Ryan and I to work. We thank all of you for doing this. We also want to thank those who have been bringing us dinner. They have been deliscious!! It's nice to see everyone and be able to spend time with you all.

After talking to Connie I realized Ellie is probably having trouble adjusting to Ryan and I not being with her 24/7 at the hospital like it was in Iowa City. She tends to try to coax me into staying with her instead of leaving. I can see it taking a little time to get used to it then it will be time to move back home and she'll have to get used to a different kind of routine. I guess I can't blame her for having fussy, moody moments when everything changes every couple weeks. On top of dealing with recooperating she has to deal with adjusting to changes in environment and attention. It's a lot for Ellie, mom and dad to deal with.

Tonight we were able to take her out to the softball ice cream social. It was nice to see her playing on the playground like she used to do. She even went down he big twisty slide with help after she got over her fear of the slide. Then she loved it and went down multiple times. Of course all of this with close supervision.

We have stepped up the model magic artistry. Everyone Ellie coaxes into playing it with her has been making small animals and angels now. A huge step up from flat butterflies, flowers and hearts. It's neat to get back to her room and see what new things are made and who the sculpters are that made them. We've got some talented friends out there. Maybe we'll have a model magic contest to see who can come up with the most elaborate sculpture. To say the least Ellie has opened many people's eyes to the wonders of model magic, now other kids are getting to enjoy it because parents and grandparents are buying it for their kids. Wonderfully fun stuff!!

Ellie's neighbor in the hospital is a man who has a 3 year old grandson visit him many days. His name is Caeden. Ellie and Caeden enjoy playing with each other. They color, paint, play model magic and play outside together. I'll have to get pics up sooner or later.

This is all I can think of to report on tonight so I'll catch yall up later! Good night! Oh...I wanted to say congrats to my friend Corinne in Germany for successfully completing her interview and was granted a position to become a judge! YOU ARE AWESOME! Love you all!

Quick update

So Ellie is coming along well. Another swallow study was done last Thursday, maybe I mentioned it already, and it's getting better. Not as much is going down her wind pipe as before and she coughs what little does back out. So we are still going slow on feeding her by mouth. Another study will be done this Thursday to see progress then we will need to decide about a G-tube if it's not good enough for her to eat by mouth, or if we can start her on solids and pull the tube from her nose. We are definately hoping for that option so we can go home without a tube.

The therapists and doctors had a meeting about Ellie and they thought maybe eight more days. So we are shooting for Tuesday or Wednesday of next week as a goal to go home. She will still have outpatient physical and occupational therapy and speech therapy to go to everyday. We aren't sure if she'll be going back to daycare at SonRise or if we'll need to have someone one on one with her at our house or somewhere. If she goes to daycare she'll need someone one on one with her to help keep her head safe and help her with whatever else she needs.

Nothing much else to report other than Ellie's still havin' a good time in therapy, they make it fun for her, and fun with visitors.

Paint-N-Swirl

During Rec Therapy Ellie got to do some spin painting. She loved it, we all loved it that we kept it for the day and made more. Here is Ellie putting the paper in...

...as it spins she drips paint on the page...
...this is some of the finished products.

tube struggles

Well in one of the last entries I mentioned hoping to not have to deal with the tube coming up again. Well it did Friday morning. It was out maybe 8 inches. So we got the nurse and she was going to take the tape off Ellie's cheeck and put the tube in. Then Ellie's pediatrician Dr. Van Sickle walked in so the nurse stopped getting ready to put the tube back in so we could talk. Well Ellie spoke up after a while of talking and said, "mama, is it back in all the way?" She has slowly wiggled her tube back down to where it needed to be while the doctor and I were talking about things. She also took the tape off herself while I held the tube down so that didn't hurt as much either. It seems she has learned to do the things that are painful herself so she can control the pain and method. Pretty neat I think. So when the nurse came back in all she had to do was tape it down at the nose. Then the nurse tested to see if the tube was in her stomach by pushing some air through the tube...and it was! Then she could get her breakfast on time. YAY! Saturday morning it had not moved at all because the nurse found better tape that the tube doesn't slide on. We are still debating the G-tube. We think we are going to see what result we get on this next swallow study and then decide depending on how much time they think she'll need tube feedings for. We were happy to talk to the GI doctor Friday about it though.

Drawing blood was a battle yesterday also. The wanted to test her blood to see if the nutrition they are giving her is the right level for her. We had to hold her down to put the numbing cream on her arm and then to draw the blood. She is fed up with everything and getting pretty grumpy. Pray for Ellie to be cooperative through all the treatments she has to get. Eye drops every two hours is a lot and then blood pressure, feedings stuck to a tube for an hour 3 times a day, everything is just building up for her. She wants food and wonders when she'll be able to talk normal again.

I called to see if getting radiation in Waterloo was an option and it is NOT. They don't do pediatrics up here and can't do a bite mold something here either. So we will for sure be going to Iowa City for radiation later this summer. I am fine with this because Dr. Bautti is a good doctor that has seen multiple children and adults with this type of tumor and has worked with pediatric radiation oncology patients for many years. He's got the experience we want! I can deal with the hour and a half drive. Just means being away from home from Monday through Fridays. Then coming home for the weekend. We hope to be done by school but not sure that is going to happen for sure. All in time...it will happen.

I use a short prayer I got from Dennis one Sunday morning, "Dear God, your will, nothing more, nothing less, nothing else. Amen"

planting flowers

Here are the pictures of Ellie in Rec therapy yesterday planting flowers. She did two large planters like this one. She dug all the holes and put all the flowers in then watered them. She had a great time quietly planting. She didn't talk a whole lot but she was happy!

Ryan's cousin and his family came for a visit. Here is Chloe and Brayden showing Ellie the cards they made for her. Brayden has a great mowhawk and Chloe is quite the fashionista. Ellie gave Chloe big hugs when she saw her.

In physical therapy in the afternoon Ellie got to ride a trike around outside. She didn't want to try a bike in Iowa City but was happy to try it here.

And she's back!! Rode right into the room on the trike.