This last week has been MUCH better! Liv finally started finding foods that she likes and taste okay to her and it has made all the difference. The first two days after the last clinic, we were still experimenting. The doctors recommended getting her the breakfast drinks that are like a meal replacement so that she could at least be getting some calories. I went to the store and bought both strawberry and chocolate flavors of those, along with a TON of different foods for her to test. The next morning I laid out a whole smorgasbord of stuff and had her take a bite or sip of each thing. Pretty much EVERYTHING she tried that day tasted bad to her. The only thing she was wanting those two days was straight milk and applesauce. I thought because she liked the milk, that maybe she would like dairy. But she didn’t like yogurt and she didn’t like cereal with milk in it. It is so crazy how off her taste buds are because those are both things she used to love. We had a neighbor bring dinner that night. It was green chile enchiladas and she LOVED them! Yay! So it seemed that she liked milk, applesauce, and spicier mexican food.
Despite not wanting any of her normal foods, she was SUPER happy that day and played with Street and did a lot of art. It always seems that she is happiest the few days after clinic. I think she knows that she is free from another hospital visit for a few days at least. That afternoon she fell asleep on the couch for about two hours. Although her levels are really good for where she is at right now, she still isn’t at “normal” levels, so she is still anemic and gets tired really easily.
The next morning I tried a green smoothie with apple juice, spinach, strawberries, peaches, and bananas and she LOVED it! Success! It was even healthy! Wahoo! She had three full cups of it and was SO happy to enjoy food! She has had a green smoothie for breakfast every morning since then. She has also found that she likes grapefruit, strawberries, applesauce, and cottage cheese. I’m grateful that the foods she is finding to like are also pretty healthy for her 🙂
After breakfast I got her ready for school. I forgot to share a story last week about school that I really want to remember for Liv’s book. Three weeks ago Rick and I started wondering if we should let her go back to preschool. Her counts are good enough to send her, and the doctors have even encouraged that we do so. She has a very small class, so she isn’t around very many kids, and she isn’t at huge risk of infection right now. I first messaged her teacher and asked her how she would feel about Livvi coming back. She was excited about it and was so kind to reassure me that she would keep the kids’ hands sanitized for me and watch for anyone displaying any sick symptoms. That made me feel a lot better. I asked Liv if she would want to go to school the next morning and she got a huge smile on her face and started yelling, “Yeah! YEAH!” and jumping up and down.
The next morning when she woke up I said, “Let’s get ready for school!” and she was so happy and started jumping around and was so excited to put her school outfit on. Then we walked into the bathroom to get her headband. She looked in the mirror at herself and immediately her whole attitude changed. She slumped her shoulders, pulled her hands up to her eyes, started pouting, and buried her face in my legs. I knelt down and asked her what was wrong, even though I knew exactly what was wrong. I watched her go from being super excited to super self conscious in just one second. I put my face by hers and she mouthed “I don’t want to go.” My heart sank and tears stung the back of my eyes. In that moment all I wanted to do was wrap her up and tell her she didn’t have to do anything she didn’t want to. I wanted to protect her from the world. I know those cute kids in her class would never be purposely mean, but four year olds are inquisitive and blunt and I knew that there would be lots of questions about Livvi’s appearance when she walked in. It hurt my heart to think of her handling that, but I also knew that this was going to be the next 2 years of her life. We needed to face it and deal with it, and doing it sooner rather than later would be easier. I put on my brave face and said, “You’re going to go and you’re going to have so much fun! I know it!” She started wailing and begging me to stay. I calmly asked her why she didn’t want to go to school anymore. I knew I needed to get her talking. She wouldn’t answer me and just kept crying so I gently told her that I needed to get the other kids ready and she could think about why she didn’t want to go and then come back and tell me. After a few minutes she walked up to me. I asked her again why she didn’t want to go and she quietly mumbled, “My tummy hurts.” I knew that this wasn’t the case, at least I knew that her tummy didn’t hurt because she was sick, it very well could have hurt because she was nervous though. I told her we would get her breakfast first and see if she was feeling better after that.
I got them their cereal and then went to get Stade dressed. While I was upstairs I could hear Liv laughing and giggling with Daci and knew she was just fine. She came back up a few minutes later and started begging me to stay again. I knelt down and said, “Liv, why do you really not want to go to school?” Through her tears and sobs she said, “I’m going to miss you.” Again, I wanted to just wrap her up and say that she could stay home with me but I knew that this wasn’t the best thing for her. She had been with my for 7 weeks STRAIGHT, like really had rarely left my side since she was diagnosed. She had become so dependent on me, to the point that she won’t even talk for herself anymore. When anyone talks to her, even outside of the hospital, she won’t respond. She knows that if she waits long enough, I will eventually respond for her. I couldn’t let her continue on like this for the next 2 years. She had to know that she could be independent and brave and strong and do things on her own. I kindly told her that I was going to really miss her too, but that I was really excited for her to go to school and see her friends and that I would be right here to play with her when she got home. She FLIPPED, haha. She was really mad that I was making her go and she screamed and cried for the next 20 minutes as I finished getting everyone else ready. So many times I wanted to throw my hands in the air and say, “Fine! You win! You can stay home!” But I stood my ground.
I texted her teacher and told her what was going on and asked if she would be ok with me bringing her and then staying out in my car for five minutes. If she hadn’t stopped crying by then, then I would take her home. Her teacher was fine with that and reassured me that the first time would probably be the hardest but that she thought she would be ok. I carried Liv kicking and screaming to the car. As I watched her crying in the back and knowing that she was so scared to leave me, I had a thought. “Liv! Do you want to take Honey with you?! Will she help you feel less scared?” Liv immediately stopped crying, got a small smile on her face, and nodded her head “yes”. I went and grabbed Honey and we put it in her backpack. She gave a happy, delighted little giggle and sat back in her seat with no complaint.
I am so grateful for her Honey. She has had Honey with her since she was 18 months old. She has been with her to every single doctor’s appointment she has ever had. If you look back in pictures, you can almost always find Honey somewhere. It’s like a “Where’s Waldo?” I am also so grateful for a Heavenly Father that loves me and knows when I need a little bit of inspiration. I know it was him telling me, through the Holy Ghost, to get her Honey so she could feel a sense of security.
When we got to preschool, she hopped right out of the car, grabbed my hand, and walked straight in with me. She never looked back, so I gave the teacher a little “let-me-know-look” and quickly walked out. I sat in the car for a few moments. I was so nervous that she was freaking out in there. Then I got a text, it was a picture from her teacher of Liv smiling and painting. She said she was doing great! Yay!
Over the next two hours I nervously waited at home. I was so worried she was throwing a fit, or being really sad and not talking to the other kids or her teacher. Then I got a video from her teacher of Liv playing with her best friend in the class. Liv didn’t talk at all in the video, but she played with her ponies and looked happy 🙂 I started bawling. It gave me so much hope that even though this next few years will be tough, she can be strong and still have some normalcy. I was so grateful that she has a great preschool teacher, cute little friends, and a twin brother to go with her and give her a small sense of security as well.
I know this may seem small, but I was totally uplifted and encouraged that day. It was a huge hurdle, and I felt validated that I was making the right decision as her mom. It’s hard to make your kids do things that are difficult for them and that push them. There is always the chance that the will fall and get hurt, but there’s almost always the guarantee that they will grow from it. I’m so grateful that this was the case in this incident. I’m grateful for a Heavenly Father that knows me and loves and lifts me up in hard times. I’m also grateful that He has been there to comfort and protect my kids in this hard time.
So….now back to current time…haha. She went to school again last Thursday and it was school picture day. I just thought she looked so adorable 🙂 She was quiet again before school this time, but didn’t cry or ask to stay home. Yay!
Over the weekend the weather was nice and we got to do some things outside 🙂 We went to Daci’s soccer game on Saturday and Liv had fun pushing Stade in his stroller back and forth across the grass.
On Sunday we had my sister in law’s birthday dinner at my grandparent’s house. We all played outside and had a lot of fun. My grandma hasn’t had the best health the last little while. At one point during the night I looked over and saw Liv curled up on my grandma’s lap. It made me so happy to see these little fighters together. My kids have a special bond with their great grandma and grandpa.
The next day the kids played in the yard while I weeded. Liv and Street picked all the pretty “flowers” they could find in the yard for me 🙂
The next morning we got up bright and early to head up to clinic. Last week we told her the night before that we would be going to the hospital, and she was up all night crying. We decided to not tell her this time, and see if she could get a good night’s sleep. That seemed to be a better way to go 🙂 She slept well and we told her when she woke up that we were going to the doctor. I told her that she would have to “go to sleep” today, but that after that she would get a long break from having to go to sleep when we go to the doctor. She was really happy about that 🙂
She was quiet and a little sad on the way up, but not nearly as bad as she normally is. She even smiled and was silly as we were walking in to the appointment. And walked straight over the craft table when we got into the clinic. She made some cute pom pom caterpillars while we waited.
When they called her over for her vitals, she got pretty sad and pouty. Then, when we did port access, she cried a bit, but she didn’t scream and fight the nurse. Hooray! It went much more smoothly than it has been going.
Once they had her accessed, she perked right up. She wanted to look at the fun pop up books they had, and then of course play Memory 🙂
The appointment went great and then we headed down for the CPC so she could get her lumbar puncture. She cried when I set her up on the table for sedation but we have figured out that she likes to sit up and have me hug her while they put the propofol into her port. This time, she also wanted to watch Sofia the First on my phone while they did it. After about five seconds, her body went limp and I gently laid her back on the bed. Twenty minutes later, they called us back and we got to go see her. She is always has a pretty grumpy scowl on her face when she wakes up. She doesn’t ever talk or cry, she just kind of glares. Haha. She always wants food immediately and right now her favorite thing is an orange slushy. They always have two flavors available and luckily the last two times they have had orange, because I don’t think she would have wanted any other flavors 🙂
We headed home and her spirits perked right up. She sat with me on the couch and watched shows and took silly pics with me and then I had to go take Daci to dance. (Tuesdays are CRAZY around here 🙂 ) When I got back from dance I found her on the floor asleep while Stade was crawling around her and over her and throwing toys everywhere. Rick said she slept through it all. Haha!
Yesterday Liv’s uncle came to get his hair buzzed by her and she loved doing it! We are so grateful for supportive family 🙂
Today, not only did she go to school, but she was totally excited to go to school and hopped right out of the van. She didn’t even need me to walk her in 🙂 I’m so proud of our girl! #livstrong