So much to be thankful for

happy Thanksgiving! we have so much to be thankful for! Gracie is doing well with radiation and is happy and silly. She is almost the same little girl she was before. she will never be the same, but that is ok cause she is becoming such a wise soul.:) She is doing the best she has in the past 9 months or longer, so we feel verY blessed.
a few months ago I started making a list of blessings we have received through this time. it was during a rough patch with chemo and infections and she was so sick I thought we might lose her, I had the feeling to make a list of blessings. the Lord has said " in all things, give thanks" It is so easy to see the bad and dwell on it, and I of course am guilty of this from time to time, but it does nobody any good. if we can stop and count our blessings, we realize how blessed we are because of and despite our trials.
the first blessing is our wonderful family and children, who love us and support us and help us. it has been so nice to have so many family members be able to help in one way or another. Wether it be, watching our kids, doing fundraisers, sending cards and Gifts, and all the phone calls to know we are loved and thought of and prayed for always!! we are blessed that Brandon has a good job and he is able to work extra shifts when he can.I'm so thankful my mom retired and is able to stay for long periods of time with the other kids, Im thankful for my in laws who have made three trips with every break they get to help us out. also my sisters and sister in laws for coming weeks and months at a time.
i'm thankful I have diabetes insipid us and that I am able to know how to manage Gracie's diabetes insipidus as well. I am able to know what she needs and how she feels.I'm thankful Brandon is a doctor and knows the medical language and helps me better understand. also that he can know what needs to be done or what questions need to be asked.
I'm thankful for all the friends and strangers who have donated time and money and meals and helped watch my kids. I'm thankful for the smiles and kind words, cards and letters , donations,gifts, blood drives, and prayers!
I'm thankful for the gospel and the comforting power of the holy ghost. I'm thankful most of all for prayer, for the comfort I receive when I pray and for the peace I feel through all those around the globe praying for our family. I know God hears them and he blesses us. I don't know what the future holds for Gracie but I am thankful for each day with her and Watching her grow and learn and be happy and smile. I'm thankful for so many more things that I hold dear....
I am blessed with a wonderful loving husband and four beautiful children. I love them more than life.
I am thankful for all of you. God bless you.

HOME again

We got to come home yesterday!!
Gracie had a good week at the hospital. She was off the IV fluids and just doing everything the way we would at home with medicines and feeds. She was happy and walking around a lot and she went to the playroom every time they opened it up. I really wish we could have just been at home the last week but I understand them wanting to watch her closer. Just grateful she did so well and the antibiotics worked so quickly. It was scary in the beginning and it could've easily been worse. We are blessed. Also so blessed to have Shayla here to help with the kids. She will fly back tomorrow. :(
Today Gracie started radiation therapy and she did so good!! She layed really still and didnt cry or complain. I am usually able to stay in the room for her scans or hold her hand even but with radiation, nobody can be in the room. I thought there might be some tears but she was amazing. She layed there for about a half hour while they did the x rays and lined her up to match the CT scan. the actual radiation part was very quick. They said they only have to do the x rays the first day so every other time will be very fast. She has 9 more days of radiation therapy and then we will head back to FT Worth for more scans before starting the antibodies therapy.
The next 5 days I will give her the rest of her antibiotics through the IV at home. They switched it to once a day instead of 3 and I gave her the first dose today. It was very easy. I dont know why there was such a big deal about doing it at home in the first place but I am just glad we had Shayla here to help so we were able to stay for as long as they wanted. :)

Day +49

Gracie had a gret day yesterday and was acting silly and happy. Her pain is getting better and she even walked some yesterday and today. She has been eating a lot of spaghettios! :) also, pudding, toast, crackers and gravy! She ordered mashed potatoes and gravy and only ate the gravy. So I said " I guess I shouldve just ordered a bowl if gravy!" but I was just kidding and she thought it was a great idea. Lol so she ordered a bowl of gravy for lunch and dinner.
Her feeds are up to 50 ml an hour which is what she was on at home so that's great! For the weekend the dr said to just let me do the milk how we do it at home to see how it goes. She hasn't puked in a few days thankfully, knock on wood. She is on two antibiotics through the IV three times a day for another ten days. They would like to keep her here but said we can maybe go home Monday. They just worry about me being able to handle six antibiotics a day with 4 kids. Oh ye of little faith! Haha. I know I can handle it, I know it won't be busy but it will be better to be home anyway! :) everything is better at home!
We will still be coming to the hospital everyday for radiation but that is only like 15 minutes a day.
We are grateful that the antibiotics are working well so quickly and pray it will take care of it for good! Thanks to everyone for remembering her in your prayers always. Xoxo

Getting better

All of the blood cultures and urine culture came back positive for gram negative rods, the next day the narrowed it down to lactose-fermenting gram negative rods, and finally today have itclassified as enterobacter cloacae. It is a bacteria that is found a lot in people with compromised immune systems. They are thinking hers spread from her bladder or kidneys since she has a positive urine culture and has been having issues with her kidney(s).
The good news is that the culture from yesterday is negative so the antibiotics are working. They added an additional antibiotic for better coverage and are alternating them between her three lines to make sure and cover it all. She will be on antibiotics for 12 more days.
Today she had her planning CT for radiation therapy and they drew little marks on her with permanent marker. She gave them a funny look and they said " oh these are special markers! You should never draw on yourself, right?" lol she held really still and dud great, they let her choose two prizes from the treasure chest. :) she chose a paint set and a fuzzy poster with markers. (of course:))
also today she had an ultrasound of her kidney and bladder. And also an echocardigram.
It has been a long day without a nap and she hasbeen emotional off and on and also in a lot of pain from her tummy. She is ready for bed at 630! I am too!
They will start radiation therapy next Wednesday.

http://emedicine.medscape.com/article/216845-media
medical jargon on enterobacter cloacae

Gracies blood pressure is normal now and they are weaning her slowly off the dopamine. She is more alert today and talkative but still hurting quite a bit and has a bad headache. All 3 blood cultures and also the urine culture came back positive for bacteria. She is continuing antibiotics and they drew cultures again today to see what the antibiotics are accomplishing thus far. Thanks for all the prayers and please keep them coming

PICU

A lot can happen in 24 hours! It seems as soon as we have any sort of plan in place is when something bad happens! we just made a plan on friday to start with radiation therapy and then she made a turn for the worse last night after my last post!! seriously crazy.
Gracie had a temperature late last night of about 101 and I gave her lortab and it didnt go away, I gave her ibuprofen a couple hours later and she still had a fever of 102. I called the oncologist in Ft worth and he said to get her blood drawn and if her counts were good, to get an antibiotic RX and go back home since she had no other symptoms. well, her counts were good and she came home with an RX around 2 am. She puked in the night around 430 and I turned her feeding pump off. Then she puked again at 8. she puked up her morning meds as well and also pedialyte. She kept complaining of a headache and was weak and tired. I put all the kids in the car to go fill her RX but when we were pulling up to the window, she started breathing weird and it freaked me out so I just kept driving to the hospital. My friend came and picked up the kids for me. Brandon found someone to cover the last few hours of his shift.
When we got there her blood pressure was very low. 60/31. a while later it was 48/20. They gave her iv fluids and drew blood cultures and labs. Her white count during the night had been 3.1 and now it was 20. They gave her a couple saline boluses and her blood pressure didnt change much, so they transferred her to the PICU and started antibiotics and medicine to increase her blood pressure. she hasnt peed much even with all the fluids and they are going to start a catheter if she hasnt peed by 10. I came home to sleep and brandon stayed with her tonight. She was getting a blood transfusion when I left. They are suspecting sepsis but wont know until the cultures come back in a day or two.
my sister in law is flying in tonight and will stay the week to help with the kids. we are so blessed to have such wonderful family!
please pray for her!

Gracie shakin her booty

Still doing great. day +43

Gracie blow drying her "hair" she was a butterfly for halloween and keeps wearing the jacket part.

Decorating cookies on halloween. she loved it/

happy girl.

The last couple of weeks have flown by and there hasnt been anything major really that i thought, hey, i should blog about this. but it IS major!! She is doing SO well and is SO happy and running and playing and dancing. What a huge blessing!!!!

I took the kids to the church trunkortreat last friday and they had a lot of fun.

Last sunday was the kids' primary program at church and Im really not supposed to take Gracie to church or crowded areas til about day +100. I did take her for the program with a mask on and left before it was over so to get out before the crowded halls and all. Anyway, I sat next to my friends who are also my neighbors and they helped with Von.

During the first song, I just broke down. A flood of emotion came over me. I suddenly realized that Gracie should be up there! This should be her first primary program! I dont know why I hadnt realized it until then, but seeing all the little girls from her class, I felt a twinge of bitterness at cancer once again, but the feeling was immediately crowded out with feelings of love and thanks to my Father in Heaven. I felt the spirit so strongly and I continued to sob. The song was called "I know my Savior loves me" It is so beautiful and I felt the love of my Savior and knew of the love He has for all the sweet children. I was more aware of my other children and the feeling to not ignore the healthy. I am so blessed to have my 4 sweet children.

after church, we decorated cookies and then went trick-or-treating around the block.

Yesterday we met with the Radiology doctor to discuss radiation therapy. She will have the planning CT done on Monday and start radiation the following monday. She will go every day for 2 weeks. luckily, it doesnt take long and the main problem is just the hassle of driving there every day. I'll take it!!! :)

We are grateful for all of the cards and notes and especially for the continued prayers. xoxox