Maintenance Month 6

This month was busy with a fun family trip and some holidays and Liv did great throughout the whole month! They put her 6MP chemo dosage back to what it was before, because last month when they increased it her counts tanked. So she felt great and had an awesome month!

On day 2 of steroids Liv was pretty moody and hungry, so we remedied that with some gluten free baking. She made Blueberry muffins and did every step all by herself, even cracking the eggs! She loves to bake!

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We went on a family trip to St. George this month and it was SO much fun! Rick had a pickle ball tournament down there so we decided to make it a family affair. We haven’t done anything like this since Liv was diagnosed, I’m so glad we were able to now!

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We went to the St. George Temple grounds and walked around and went through the Visitor’s Center

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We took them to the new All-Abilities park, Liv’s favorite part was the zipline 🙂

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I think we ate at Chick Fil A three times in two days. Haha! It is the kids favorite and it has gluten free stuff, which is perfect for Liv!
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Liv was still on steroids over our trip, she has insisted on doing her own meds lately. She scoops up the applesauce, puts the pills on the spoon, and puts it in her mouth on her own. Haha

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While I watched Rick play in his tournament, my brother and sister in law had a swim day with my kids. So nice of them!

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They took a break to come down and watch a match, they brought their homemade signs to cheer on their daddy 🙂

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Liv had a blast each day, but was definitely worn out by the end!

When we got back, Liv got to be the Star Student and line leader for the week. She was so excited!

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She had physical therapy with her new PT assistant. It is taking her longer to warm up to him, he’s very nice, just a lot quieter than Alex. She loved Alex and was completely herself and never fought them on doing the exercises. Ever since he left, she has kind of been a stinker for therapy. She will do it, but only if I bribe her with something first. We have noticed a big shift in behavior this month. She is so stubborn! I’m glad she is stubborn in so many ways, it has served her well in her battle with cancer, but theres a point where it can be bad. Haha. She refuses to do things and throws big gigantic tantrums to get what she want. When we are in public it is really hard for me to get her to stop without bribing her, and generally its food that I bribe her with because it is what works for her.  I know that I have to stop this. First of all, it isn’t healthy for her to have fries and ice cream all the time. And secondly, I’m breeding and reinforcing that bad behavior of her thinking she should get something every time someone wants her to do something. Its been a bit of a battle trying to correct this over the last month, but its slowly getting better 🙂

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She gave the scripture in church and just thought the twins looked so dang cute that I had to snap a pic 🙂

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She is loving playing the piano still 🙂

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The next week at therapy… she was still a stinker. She wouldn’t answer the questions and she wouldn’t do the exercises willingly. After therapy she happily said, “Where are we going to go eat today, mom?” I told her we weren’t going anywhere, that we were going straight home and she would get a sandwich. She was ticked! She threw a HUGE tantrum the whole way home, it was really fun. Not. Hopefully over the next few weeks she will have better behavior.

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I just love everything about this pic….dandelion wishes, Honey tucked under her arm, piggies, and her knock-knees
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A new exercise this time….balancing on the bosu ball and throwing a ball back and forth with her therapist
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She also got to ride the trike over to the hospital to do the stairs. She was really tired after riding it! It really made her use her legs.

For my birthday she and Street asked if they could make me “birthday sprinkle pancakes”. She was so excited to do everything herself. She’s becoming a good little cook!

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My cute kids on my birthday 

The weather has been so bipolar this spring! We had a good day this week and the twins wanted to get in their suits and have a water fight.

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On Mother’s Day the twins gave me these adorable pictures in their graduation cap and gowns.

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Liv drew this picture of me
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With mom on Mother’s Day
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Cutest siblings

The twins graduated from Preschool on Monday! I can’t believe they will be starting Kindergarten so soon! They have loved going to preschool with Mrs. Barb. We are really going to miss her!

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Liv with her best little friend 

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We had clinic today. The morning started out really rough. Liv had to fast because time she had to have a Lumbar Puncture. She cried and cried and said she didn’t want to go. My heart broke for her. When we got in the car I told her I understood that she was sad and scared so I was going to let her cry for five minutes and then we needed to be tough and brave and happy. She wailed for five minutes and then when I told her it was time to stop, she immediately did and was happy the whole rest of the day! I was so proud of how brave she was!

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She made a wish in the fountain this morning

We played Memory for a while and then our nurse brought in another fun game. We played Headbanz for over an hr and Liv thought it was the greatest thing. Haha. She picked food for almost all of my cards. I think she was hungry 😉

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Our favorite nurse is nurse Becky. She is so great with Liv. Liv is still really quiet and reserved with her, but she will respond and its clear that she likes her. When we got to clinic today, her meds weren’t ready. I was so nervous that we wouldn’t get them in before her LP. Liv does NOT do well when we have to go back up to clinic for hours after an LP. Becky was so great and got right on the pharmacy to get them up. Just when I thought the window had passed to start them (it takes an hr and a half to administer her meds), Becky came in and said that she didn’t care if we were 15 minutes late to the LP, she was going to start the meds anyway. She knew it would be so hard on Liv to come back up afterward. She is the BEST!IMG_1215IMG_1221

When it was time to go back for her LP she whimpered a bit, but she was so brave and climbed right up on the table and buried her face into my body. I held her tight while they put the sleepy meds in her port and she drifted right off to sleep. I was so so proud of her.

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After she woke up. By the time I got back there she had already told her nurse that she was going to get Chick Fil A right now and go see daddy at his new office. Haha 🙂
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Happy as can be eating Chick Fil A at her dad’s office 🙂

Her ANC was all the way up to 3100 today 😦 Boo! That means going back to the old dose of 6MP isn’t going to work. She should be at around 1000. We have been doing 6 days of 1 pill and one day of 1 1/2 pills and she is too high on that. Last month they tried 6 days of 1 1/2 pills and one day of 1 pill and her counts tanked and she went all the way down to 200. So this month we are going to try 4 days of 1 1/2 pills and 3 days of 1 pill. Hopefully that will get her right in the middle! Thanks to everyone who continues to pray and think about Liv. We are so blessed!

 

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