Saturday, March 29, 2014

Day 3 & 4

Day 3 actually had a few happy moments. She played on the iPad for a minute, laughed about the emoticons that she put by family members' names, smiled while holding the twins, ect. I had a glimmer of hope in those moments. I thought for a second that we could do this... and then I changed my mind... and then changed it back.  
 

 It is pretty sweet to see her with the twins even when she isn't feeling well. They love seeing her and she perks right up when they come in the room. Unfortunately, she doesn't feel the same way about Slade at this moment. He was driving her crazy because he moves too fast and is too noisy.
 She seems to be pretty tired and has a hard time sitting up for a long period of time. I am hoping that is only because of all the crap that is going through her system. Nights are a little rough because she is being pumped with so many fluids right now to try and push that chemo through. She is peeing every 1 1/2 hours and that makes for a long and eventful night. As if sleeping in a hospital isn't bad enough.

 
Her blood pressure is still a little high (which I attribute to her panic attack every time a medical professional walks into the room). She is on a med for that and had an EKG to see about her slow resting heart rate (47-65). She screamed the whole time and I was told it looked fine, but also that it wasn't even useful because she was screaming. Hmmm...
 
 I loved having Slade here, even if it meant that I only had a couple of hours with him each day. I can tell that this is going to be very hard on him. He loved the new adventures but also wanted to go home. We had a pretty good routine going at home and my kids thrive on that. This new journey will really test their abilities to adjust to "new routines". As much as it hurts my heart that Slade will only be here on weekends, I know that he will be better off in Saint George with Scott (part time) and family. Honestly, it kind of rips my heart out knowing that he won't be going to me when he gets hurt and needs a love or finding me to show me his latest trick or find. At least he will be going to family, but it feels like that is my job as his mommy and I am not going to be able to do that part of my job. Man, this is hard. Also, the twins should do a good job adjusting and just go with the flow because they have to. Again, it is hurting my heart that I will prob get 3 hours max with them each day. I probably won't be the one taking pictures of them rolling over or watching them sit up for the first time. I probably won't know their ever changing routines and quirks. I just hope I don't forget how to comfort them when they are sad or how to make them smile/giggle. I know it all sounds silly but these are some of the things I am fearing most. Of course I am the most concerned about Taleah and her well being. The thought of what "could be", just about puts me over the edge. I love her so much and am hoping for the best, but I worry for my other kids too. I feel pretty lucky that I have family that is willing to drop their lives for part of the week and make it so I can see my other kids.



We have been getting ideas and tricks from fellow families on how to make this place feel a little more like home. We have started decorating and bringing color in the room in hopes to lift her spirits. We can't wait to have miss Cami (relapsed ALL cutie that has just completed a bone marrow transplant) here again to share with us some of her favorite tips/tricks.



Overall, we are doing pretty good. Taleah is handling it as well as possible. On day 4, she still has a lot of anger and hate for most of the world. I don't blame her. I am just hoping I can bring some light into her life and make her feel special and loved. She is a stubborn girl so she can do this again. There has got to be a reason she was blessed with so much spunk!

4 comments:

  1. Tosh you are a very strong loving mother ! I will hope pray and send love your way, with not only myself, but everyone I know around me.. that feels your pain ! Your amazing , and have such a beautiful family ... your sweet family will be thought of multiple times a day , sending out love and prayers your way ... if there is ANYTHING I can do to help PLEASE let me know .. # 8015486983 LoVe , Cortney

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  2. Hi, I followed you blog before but it would never allow me to comment. I am so sorry to see Taleah is sick again. I have six kids and can just feel your heartache and the struggle of trying to figure out how to be there for all of your kids and miss so much of your kids when you are caring for your girl. Hang in there. I think you are a sweet mom and you can only do what you can do. Thinking and praying for Taleah. She doesn't deserve to have to go through this again. Darn it. Sorry. Hang in there. www.moreholinessgive.blogspot.com

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  3. Wow. You inspire me with your strength. I would never ever want to minimize what you are going through, at the same time I feel like I can relate to you on certain things. When Ryan was a baby and we discovered that he would probably never do any of the things that other children would do, it was heart wrenching.As a mother you dream of all the things that your babies will be able to someday do. And when the picture changes, and the possibilities are no longer endless, you have to find some way to accept that new reality. It's almost like you have to mourn the loss of those dreams.I I am in no way trying to tell you to mourn the loss of anything! I know that it is completely different, Ryan was blessed with a healthy body for right now.whenever he is sick, and unable to speak a single word, it breaks my heart. I am his mom and I am supposed to be able to fix everything. I break down all the time because I feel so helpless. I watch his tears and can't change them to a smile. please don't think that I am trying to compare my situation to yours. You have the strength of angels. I have not been called to go through near as much as you. Few people that I know are.I just can identify with that feeling of not being able to fix your babies owies.my heart hurts for you. And for your family. Words don't make it fair, or easy. You are being heard though. And prayers and hopeful thoughts are sent your way. Your babies will adapt. So will Slade. Heavenly Father will cushion the blows. On a side note, my kids want to send Taleah a package. What are some of her favorites? I know you don't have a lot of time to answer, so if we don't hear back from you we will just pick a few fun, cute Easter things to send :) Do we just send them to PCMC? Okay. Love and hugs.

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  4. If you need anything to help decorate her room or special foods whatever please let me know. I'm down the street fro PCMC. I have your family in my prayers and my priests have been praying also. Keep the faith and all will turn out as it should. :) 801-502-8254

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