Day +31 and Doing good :)

We got home last thursday ( the 21st) and there was a welcome home party waiting, with daddy, and grandma and grandpa, and her brothers and sister. She had asked for a pinata so there was a fun princess one that daddy had bought. She was SOOOOO excited to be back home. it had been 6 weeks since she left home.
Gracie is doing so well and talking and laughing and running and playing. She still takes one or two naps a day but she is getting stronger every day. im so happy to see her play and be active but i dont want her burning calories at the same time! :)
Her feeds are going pretty well. i have it at 40 ml/hr at night and then 4 bolus feeds each day of 120. she still has random times of pain and puking but it is much improved overall/
Today we went to the clinic here and everyone was so happy to see her walking!!! and happy and talkative. Her counts were good today. tomorrow she goes for a dental exam to see how long it will take to fix all her cavities. then we have the rest of the week "off" from doctors. I am waiting to hear when radiation will start. hopefully in the next couple weeks.
My mom and dad left today and it was my first time alone in a long time. lol i took gracie and von to walmart this morning arond 9:30 and Von (20 months) was really whiney. i thought that was weird since it was too early to need a nap. then we passed the food and he really freaked out, then i realized i didnt feed the poor kid breakfast!!! all i had given him was juice while i was getting gracies meds ready. totally spaced breakfast. LOL. im used to gracie and she doesnt eat anything. haha, it will take some getting used to all over again. heck, i dont even really know what he likes to eat! good thing he is forgiving. :) I bought some bananas and he scarfed it down in no time.
Gracie is starting to eat a little bit here and there but most food still tastes really bad because of the mucositis. She did eat a little lasagne tonight. hopefully it will get better and better.
The new carpet and paint looks great and Brandon and my parents worked really hard to clean the house and im so grateful, now i just need to keep on top of it! wish me luck
:)

glad to be home. :)

A good day

Today was a good day. :)
We woke up around 8 and I did the blood draw and we went to the clinic. It went so mich faster, with having the blood already drawn. We were out of there in an hour. Her counts were still pretty good. She is doing well, besides some puking. Praying it stops soon.
They said we can go home Thursday after her next clinic appointment, as long as she is still doing as well. Tomorrow she has a kidney scam to test the blood flow. They just want to check before radiation.
I did her dressing and cap change tonight and was so proud of myself!!! Then I looked down and saw the biopatch sitting there unopened! Ugh! I totally forgot to put it on. For a split second I thought to just leave it, since I had already cleaned it well with the chloraprep. But I knew that it was important and I didn't want to run the risk, so I had to take off the new dressing I had just done and do it all over again. I felt so bad. She did well with it and I promised to not forget the biopatch next time! She was so forgiving even though her skin was sore.
We had a good day together doing puzzles and coloring and painting and watching tv. She also has wanted to sing the ABC song all day and it is really cute. I'm happy to see her happy and wanting to sing. She was running down the hall and fell down and skinned her knees. I was happy and sad at the same time. Happy she felt like running and did! Sad that she wasn't very steady and fell. It is good to see her want to be a kid again. She wants to learn how to skip. So cute.
We can't wait to get home in a few days!!!!!!!! Please continue your prayers that she will be well. Xoxo

Breaking out party

Breaking out of the hospital

Yesterday was the big day!!! Break out day!
After being admitted for 30 days, she was free! The average stay is 28 days so she did pretty good! There were a few others that had been there two or three months so I am grateful she was able to go after 30 days. I'm counting my blessings, cause it could be so much worse. Gracie is doing great!
I learned how to do the blood draws and heparin and saline flushes. I have to flush both lumens with heparin every day. I also learned to change the caps, which needs to be done once a week, along with the weekly dressing changes. I was a little nervous today for my first unsupervised heparin flush but I realized I know how to do this stuff and I can do it!!! No problem.
Gracie was released around 3:30 in the afternoon and they had her breakout party all ready. She got to break through the streamers blocking the door. It made me a little emotional, as you might imagine. I was so proud of her. Then we had the ice cream and she even ate three bites. Very fun, they also gave her presents!!! That was what really won her over! Lol. She got, a ladybug game, puppy in my pocket, and a doodle bear. She was chatty and happy. It was wonderful :)
Than we came to the Ronald McDonald house where we will stay for a week and go if all is well. They have special rooms here for stem cell transplant patients since they can't be around a lot of people. It is like a studio apartment, it has a large bathroom and two beds and a kitchen and table. Also cable tv!! Most rooms don't have cable or anything and you aren't allowed to eat in them. The Ronald McDonald house provides dinner very night but since she isn't supposed to eat off an assembly line style, she is allowed to eat in her room and we bought a few groceries and snacks. Today we had popcorn and watched sleeping beauty. I should say I had popcorn, she ate two pieces. :)
We have been sleeping a lot today. Yesterday was a long day.
The house got new carpet today and paint yesterday. My Parents are going to deep clean before we come home. Gracie won't be able to go to church or anywhere with a lot of people for a few months. And visitors will be limited. The main challenge will be getting my other kiddos to wash their hands!!!! They want everyone in the house to wash hands 2-3 times an hour.
We are so grateful for all of the continued support and love and prayers. Please pray for her to stay healthy and strong while we are home so she wont have to go back prematurely. We are blessed. Love to all and glory to God.

day +20

Gracie had another EGD done today to dilate her esophageal stricture. The stricture looked a lot better than last time but he ballooned it a bit more and will still need to repeat it in a few weeks to get it where it needs to be. Her gastritis and esophogitis were worse this time but he took some biopsies and we will continue with the higH doses of prevacid etc for her reflux.
Gracieis doing great and tolerating her feeds well which are now at 50 ml an hour. We will keep increasing it a little at a time so she doesn't have to be on it 24 hours a day.
Gracie had a huge meltdown today about her bald head. It broke my heart. I tried telling her how beautiful she is but she just got more mad. She said people thought she was more beautiful with hair and that she wants her hair to grow and it takes too long and her wig is too scratchy. Etc. All the while sobbing. It is the first time she has acted this way about it. I felt so bad. She is probably just sick of it all, and she is right, it does take a long time. It is hard for such a girlie girl to not have her long curly beautiful golden honey colored hair. It is her face and spirit that are beautiful though! She truly is gorgeous in and out. I hope she will feel better about it. I'm going to stop showing people her "before picture", I think that probably played a big part. :( I feel awful.
I did my first blood draw today and did well. Pretty easy. Also they have the parents do the meds the last couple days just to make sure you know how to measure it correctly!! I thought that was so funny, like who doesn't know how to measure medicine!? They said you'd be surprised. LOL. They said people are pretty incompetent for the most part. Haha.
The best news of all is that we get to get out of here tomorrow!!!!!!!!! YEAH!!! We still have to stay a week in town at the Ronald McDonald house but we are so happy to be done! The child life lad came by to have Gracie help plan her breaking out party! Gracie decided on an ice cream party with chocolate syrup and rainbow sprinkles. I doubt she will eat any of it but it will be fun! She is so ready to go home. The last few days she has cried for home and her daddy. She has been gone from home for 5 weeks, and one more will be 6. I'm just grateful it isn't longer.
The house is getting new paint and carpet next week and it will be scrubbed and clean for her return. :)

Day +18

Gracie is doing great! She looks great and she is happy!
Saturday and Sunday my parents brought my other kids down to visit. Gracie loved it! (me too) we could only have two people at a time so we took turns. The kids had to be older than 5 to go in her room, so the two older ones could but, little Von could just look at her through the glass. She loved seeing her little "bubba" and he loved seeing her. There is a big playroom down the hall so the little one just had a blast playing in there while grandma and grandpa and myself took turns watching him. It was wonderful to see them even though I had just been home three days earlier.
Gracie improves more and more each day and gets stronger. She loves to do her crafts and it is a nice little walk over to the play area, so she gets her exercise a few times a day walking over and also walking to the bathroom for her bath and sometimes for the potty, :) depending on her mood)
The really exciting news today was that she made her own red and white blood cells and platelets!!! Her new cells are getting to work! We are thrilled.
Her mouth is almost back to normal and she hasn't puked much. Her feeds are up to 35 ml an hour now and they have cut back on the TPN. They said she can get out of here on Friday. Thursday she has to have a repeat on the EGD to do another balloon dilation of her esophagus from her stricture she had when she was admitted. He was able to balloon it a lot but not to where he wanted. Hopefully it hasn't closed back down too much.
We will then stay a week across the street at the Ronald McDonald house just so they can make sure she is still doing well before we go home. Also they said she can do her radiation in Tulsa so we are happy about that. That will be in another few weeks.
Yesterday I did my first dressing change on her central line. I will have to change it every week when we go home. I did pretty good job for my first try, cause I've seen it done so many times!! Lol I will also have to flush her lines with heparin very day to prevent clots. I'm turning into a regular nurse. Haha.
Thank you for your prayers and please continue to pray especially when we go home that she won't get sick. Her immune system will be fragile for some time.

Improving (day +14)

We've been here at the hospital for 22 days. Gracie is improving More each day. Yesterday they took her off the morphine pump but still left the button for if she needs it. She pushed it a few times in the night. Today they put her on lortab every four hours and she is doing awesome. She is happy and talking a lot. Every smile makes me feel so blessed!!
She went over to her play area again this morning for more coloring and painting. She is such an artist :)
They started her on the milk pump last night at 10 ml an hour. That's hardly anything (2 tsp) but she did great and didn't puke at all!! Knock on wood. They are going to increase it to 15 ml an hour continuous over the weekend and see how shes doing on Monday and taper off on the TPN. They said if she keeps doing so well that she could probably get out of here sometime next week!! Her kidney, heart, and liver function are all doing great as well. Her counts are good and she hasn't needed transfusions the last two days.
After we get out of here, she will need to stay at the Ronald McDonald house for a while. Then maybe we can go home for a little while before radiation in a few weeks.

Day +13

I had a great time at home with my other kiddos. Gracie and daddy had a pretty good time here at the hospital. She has been talking his ear off the last couple days and he even had her laughing. Her white count is up!! Her strength and energy are coming back. Her mouth is still bad but much better than it was, so at least she can talk again!
Last night they moved her to a bigger room. It is easily twice as big, with its own playroom. It is great!! She immediately wanted to go play at the table in the play area. She has a lot of puzzles and crafts and coloring things that people have sent her. Thank you!!! She keeps beating daddy at e memory game, but she plays by her own set of rules!! Haha.
This morning she wanted to go over again and play. It is great for her cause she walks over there and back and is sitting up while she is over there. She got pretty tired after about 40 minutes but I'm sure she will go again later and just get stronger and stronger! I wish all of the rooms were this big, the difference is apparent already in her mood and her desire to get up and do things, it is great for her healing. But this is the only one this big cause its on the corner and wraps around. Too bad. I wish all the kids had one.
Gracie is still puking a few times a day so she is still on the TPN. I'm not sure when they will try the milk feeds again. Her heart rate is down to about 110 and her blood pressure is good. Her diabetes insipidus is being managed pretty well with the new doc. He is the one we had the last day after her surgery and I was impressed with him. I think he knows his stuff.
Brandon will fly back home today for work. It has been good that he could come these few times. Next weekend my parents are bringing the other kids down to visit. Gracie is so excited. She said she needs to lock her new tinker bell diary before her brothers come. Lol
Thanks SOOOOOO much for all the prayers!!!!! The Lord truly hears them and blesses us.

Day +9

Well yesterday I said she didn't need platelets but she ended up needing em in the evening. She got some again this morning so that makes 9 days in a row.
the night went pretty.good besides a couple times of puking. she is still sleeping quite a bit. Her mouth is looking a little better and she is actually talking again a little bit so that is good. She hasn't needed to push the morphine button more than a couple times in the last 24 hours. She still has the continuous dose going but it is nice to know her pain is improving.
Brandon will be here in a few hours and we are so excited to see Him!! I'm also way excited to go see my other kids for a few days. Ive never been away from them this long. It seems longer than 3 weeks.

Day +8

Gracie slept all but a couple hours yesterday. She was so tired and it was good to know she was getting rest and the morphine was controlling the pain. Her blood pressure was really low last night and her heart rate was steady around 170, so it was no surprise to hear she needed blood today. That helped with the blood pressure. It is still fairly low but not too low. And her heart rate is around 140 which is what it has been for the whole time with cancer, or higher. It doesn't really go much lower than that very often.
She had playlets again yesterday for the 7th day in a row but she didn't need any today.
Her mouth is starting to look a bit better. It is still awful of course but they think she might be ready to turn the corner and hopefully see the white count coming up in the next few days. I sure hope so!
The sodium issue is driving me a bit crazy but I guess I should let the DRs do their job. This morning her sodium was 135 which is the low end of normal but she hasn't been peeing a lot at all and is up 2 lbs of fluid from yesterday, yet the doc still gave her the ddavp. I'm not exactly impressed with this particular endocrine doc and I feel like every time he is on the clock, he screws things up. I asked the nurse " why did he give her a dose when her sodium was that low and she wasn't peeing." she said "he's the doctor, and he knows more than you or I. I guess that's why he's paid the big bucks" um, wow, ok.
Anyway, tomorrow Brandon is flying back down for a few days and I will go back home for a few days to be with my other kids!!! I'm so excited to see them, it has been 3 weeks! I think I will let them skip some school and we will go to the fair. We are going to make homemade chocolate chip cookies cause I've been craving them forever!!!! I will treat it as an early birthday.
Thank you to everyone who has sent Gracie cards and letters. Most of you, we have never met and we feel so loved! And most importantly, thank you for the prayers!!! We know God hears them and is blessing us all.

Cookbook Fundraiser

Here's what the Gracie cookbooks look like..Get one today!

Scentsy buddies fundraiser

Lisa's friend Sara Mendenhall is a scentsy consultant and is donating %100 of her scentsy buddy profits to Gracie's care.  Order these adorable yummy smelling stuffed animals here   https://saramendenhall.scentsy.us/Buy/Collection/163