last days in Iowa City

When Ellie was in the PICU child life asked us if we were interested in a music therapist visiting Ellie. Ellie loves music so Kirsten began to visit. This is the Tuesday before we left and Ellie is playing along to her song. We are going to ask for music therapy here at CMC also.

Also on Tuesday a dog came to visit the kids. Ellie enjoyed this also of course since she is missing Bo and the kitties. This dog's name is Stuart. He's something like 15 years old. He calmly layed on the bed and let Ellie pet him and give him a hug goodbye. Ellie wanted to draw a picture of him so she enlisted me to draw that picture. So Stuart went home with a drawing of him by me from Ellie. Craziness.

First days in Waterloo

We have made the move and been in Waterloo a day and a half now. We had a rough transition with Ellie missing some tube feedings each day. Thursday morning the tube was coming out of her nose quite a bit so before they could feed her they needed to make sure it was still in her stomach. It took forever to get to x-ray to do this so when we finally got there is was past breakfast and lunch times. The tube was in the wrong spot. They had to push it back down her nose to get into the stomach further. Then she finally got her feeding plus extra to make up for the lost meal. I was very frustrated today and both Ryan and I thought if Friday goes this way then we are asking to go back to Iowa City. I think it will go smoother now that her tube is in the correct spot. Shouldn't have to deal with that anymore.

Ellie got to go outside and plant flowers for recreation therapy. She loved it! I'm trying to get pics up but it's not working for some reason. I'll try tomorrow.

Today there was another swallow study done to see how her swallowing is progressing. She wasn't coughing near as much as before but some food is still going down her wind pipe. She does respond with a cough when it does, sometimes delayed and other times right away. It's a tiny bit that goes down with pudding and honey consistencies and the cough is productive to get it out. We are going slow with the eating to continue with therapy. The doctor talked about putting a feeding tube right out from her stomach because she may need the tube for 3 or more weeks. So we are going to talk to a stomach doctor about this to weigh the options. I hear it's much easier and not so bad.

We are ready to start talking about signing up to stay with Ellie when she's not in therapy. It looks like the mornings will consist of half hour help from OT to get ready and then the different therapies spread out during the day. Speech, Occupational and Physical therapies all see her for half hour two times a day. Rec. Therapy is one time a day. If you are there for the 8 o'clock time you will get breakfast and for the 12:15 time you will get lunch. They have ordered meals for one of Ellie's guests each meal. Actually the person who eats breakfast fills out the menu for the next day. You don't have to eat the hospital food but it'll be there if you want. Anyway, can you please email me about times next week you think you'd be able to help. I haven't totally figured out when I'm working. I think I'll be there in the morning to get Ellie up and when she's set to go or in therapy and someone else comes then I'll head to work at 9 or so. Then I'll see what coverage looks like throughout the day and stop in when needed. Then for sure try to be back to the hospital by 5 with Nate. Anyone is welcome to help us, if Ellie doesn't know you very well then I'll see if I can be there to introduce you and get you settled in. She has tons of activities to do there already. Or if you haven't met her before maybe you could stop by some evening before you stay with her to meet her with us. If you can't stay with her that's totally fine you can still come and visit. Just let me know when and I'll see if it works.

Well then, that's all for now and please call or email me with questions, asmiley35@yahoo.com Thanks so much, love you all for all your wonderful support.

Movin'

The morning of he move Ellie picked out the dress from abuela to wear to Waterloo. She looked like out little girl again with hair done and in a dress.

She got to eat chocolate pudding again. We are starting slow again with the soft food.

When Nate got to Waterloo they were happy to see each other and Ellie went straight to tickling him.

Alicia Germain stayed for a visit when she dropped Nate off with us. They played with the princess dolls and polly pocket doll.

We went out to the therapeutic garden so Ellie could see the flowers. She made plans to plant flowers they bought that next day.

The transfer was made but not the smoothest.

tucked in

Well we made it to Waterloo and Ellie got settled in to Covenant. This afternoon we got to go outside in their garden and walk around quite a bit. Ellie was so happy to be looking at the flowers. She is even more excited to help them plant flowers tomorrow afternoon. She was walking very well today. Not as wobbly as other days. She also ate some chocolate pudding when speech therapy came to visit her today and it went very well. She didn't cough nearly as much as in the past. I was happy to see this. Then when dinner got delivered to our room she ate some mashed potatoes and those went down very well also. I have hopes things go well with her eating and we can get that tube out sometime during her stay in Covenant. We enjoyed some quiet time tonight after daddy took Nathan home for the night and she went to bed a little after 8pm. Ellie is excited for visitors especially Ahmad. She really wants Ahmad to come visit. :) So if you are thinking of visiting can you please call one of us first on our cells, Alicia 290-8992 or Ryan 290-2546 to let us know you want to stop by. I will put on the blog her schedule of all her therapy so you know when best times to visit are. Thanks all! Sorry no pics today. I'll get you caught up on pics tomorrow hopefully.

I know some of you are wondering how the Oncology appointment turned out. Well we saw Dr. Bautti, head of the department and he does the pediatric oncology. He suggested radiation so that is what we will be doing. We have six weeks of radiation to do this summer. I believe starting mid-July. It will be M-F treatments and then she has the weekend to recover, then another M-F for six weeks. He has seen her type of tumor in other patients and he highly recommends radiation. Chemo doesn't work well for these types of tumors so we don't have to do that. Then after radiation there will be many MRIs for years to keep close eyes on the brain and spine. There shouldn't be major side affects to radiation, nausea, vomiting, fatigue, etc. We hope to stay at the Ronald McDonald house during the week and come home on weekends. We will switch weeks with her down there we think. One of us will stay with Nate and work up here.

He also suggests some genetic testing to see if Ellie has the mutated gene for brain tumors. If she does that explains a little of why she got this one and then it shows she's at risk for more. If she does have it we will all be tested to see if we have it and the doc recommends Javier and his family get tested also to see if they have it. We worry about the rest of our families and the extended family if it's genetic or familial.

So that's the last bit of news that was hard to swallow this week. We are exhausted and keep chuggin' away. Thanks for all your support. Call us if you want to stop by. I'll start taking sign ups this weekend for helping us keep an eye on Ellie at the hospital. I'll let yall know when. Thanks again. Good night, it's late...

HOME!!!

For an activity Child Life took the kids up to the beauty salon to get their hair done, nails painted and tatoos if they wanted. Ellie came back with curly hair, painted nails and a couple tatoos on her hand and extras for later. She was so cute and happy to do this.

She picked sparkly purple nail polish.

Jay and Jennifer Nabholz came to visit last night. Before we tucked Ellie into bed she opened her present which was this huge beautiful quilt. The colors are so bright and beautiful. I'm in awe of the work that is done. It is absolutely beautiful. Thank you Jennifer!

Ellie giving daddy a hug before she went up to the salon and we went to lunch.

Yesterday a swallowing therapist came to work with Ellie. They did exercises and made sounds to strengthen her soft pallet and throat. Ellie will continue to get this therapy at Covenant.

Well, we are getting closer to home. Covenant inpatient rehab unit is where we are headed Wednesday morning. Ellie will be able to receive an hour of each physical, occupational, speech and recreation therapy each day. They will help her with her daily personal cares and strengthening of her speech and swallowing. I am going to try to figure out what her schedule will be for therapy each day so we can figure out when she needs someone there with her to help occupy her. She will be getting three one hour feedings through the tube daily and then continuous feeds at night for eight hours. That's what we know so far! See Yall Soon!!

Play Dough and Model Magic

Today was a day that consisted of Play dough and Model Magic! First there was activity time in the play room where they made stuff out of play dough using cookie cutters and molds. This picture is of the final model magic necklace and bracelet Ellie, Alice and Amy made together. Ellie's is excited to wear it tomorrow!

Ellie at the play dough play time.

Ellie showing us her two strawberries.

Then Alice and Amy came to visit and brought Ellie a model magic jewelery kit. Ellie tore into that immediately. Alice and Amy love jewelery as much as Ellie does so they had a great time helping her design her own jewelery. The picture at the top is the bradelet and necklace they made.

Ellie used glitter glue to decorate one of Alice's sketches and then colored on plain paper all with mom's help.

Ellie has become a demanding artist which actually turns mom into the artist. When she wants something made she hands me the stuff and tells me to make her what she wants. Even coloring, I have to make things she hasn't learned yet to do. It's funny but mom is tired of playing with model magic. Holy cow!

Ellie also got her stitches out!! This morning Lonnie came to cut them out. We had to hold her and she fussed a little but it wasn't real crying. She's a big girl and handled it well. Now we can wash her hair without being careful to not get the stitches wet. YAY!

Something else we dealt with was a bad bloody nose. Ellie was coloring and started to cough a lot. So I had her sit with me and rest then her nose began to bleed. And bleed and bleed. I had to hold it for 10 minutes before it stopped. That was a little scarry for us especially when she lost a large clot out of it. I know YUK! and Too much info. Sorry, it just scared us. Anyway, she stayed calm through that and let me squeeze her nose the whole time. She wasn't even worried. They started putting humidity in the room now to hopefully prevent the dry noses and future bloody noses. Phew!

So we have been talking about going home! We are looking at Wednesday morning! Possibly to Covenant rehab still though. We are getting all the arrangements done and we'll update tomorrow with the final plans. Tomorrow we see oncology at 9:45 to talk about the tumor and treatment needs.

Ellie is finishing up with a swallowing secialist to start therapy to strengthen her soft pallet which isn't moving as much as it should be. Along with strengthening her muscles for swallowing and all that stuff.

That's all for today and we'll see yall tomorrow and even sooner in Waterloo!! Woo Hoo!! Oh keep in mind, if Ellie is going to be in Covenant for rehab I would like to start a sign up list to help keep Ellie company so daddy and maybe mommy, for a few hours, can go to work and get other things done. I was thinking people take turn and sit with her to do activities in shifts. As long as you feel comfortable. I'm not sure how I'm going to do this but I'll keep yall up to date. I gotta think about this. If anyone has ideas email me or comment on this to give me ideas. My email is asmiley35@yahoo.com

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.