A.M.T.F.H. and Life So Far

      A.M.T.F.H. is my acronym for appointments, medications, tantrums, food, and hair. This is what our life consist of with Sophia so far.
  Appointments. Her first outpatient appointment went pretty well, super long, but pretty well. It was almost 5 hours long, not including the traffic we hit heading home. She didn’t cry as much as I thought she would, with the dressing change, but maybe the more we go the more she will cry or the opposite, less crying, we’ll see. The floor that her appointment was on was full of patients with the same kind of cancer along with other kinds of cancers so it was nice to be around people that are going through something similar. I got to see a lot of patients from babies to teens that are bald, due to hair loss, and I noticed a difference between the ages. I noticed that the younger patients cared less what they looked like and the older patients looked liked they cared more about what they looked like. The younger patients walked around bald, as if they didn't know they were bald or didn't care, and the older patients walked around with wigs, hats, or some kind of cover up. I know the older we all get the more self conscious we get about the way we may look or the way we think people see us and for all of this I am thankful that Sophia is going through this (because she has no choice) at the age she is going through it. My hopes for her are that none of what she has to go through effects her as she gets a little older and still has to be going through it.
  Medication. Everyday, morning and night, Sophia has to be on medication. She is taking 5 different meds along with flushes as a part of her treatment and at the beginning it was a fight to give her meds but now, 3 weeks later, she seems to be getting used to taking them. Every time I give her the meds I say “almost done” so she knows it wont be too long until it’s all done and I think at the beginning she thought I said Elmo’s Song because every time now she says “Elmo’s Song” and starts singing it, it’s so cute, and that’s what’s been getting her through taking her meds without a fight.
      Tantrums & Food. Sophia having tantrums is not new but they are new in the way of how often she has them and why she has them. It usually goes hand in hand with food. If she can’t have what she wants to eat then she throws a tantrum. It’s definitely hard to not give your child what they want when they want it but when it comes to food its even harder to have to say no. The doctors and nurses told us that her appetite would increase and so well we were aware of it we didn't know just how much it would increase. Big time, it increased big time. I never knew a little girl could eat or want to eat so much all day. Of course we don't always feed her but she's starting to look like we do. She is gaining a lot of weight but it’s just her face and stomach that are bloated, due to steroids. It’s tough to see my little girl this way, she never was really chubby, just a little as a baby but now she has real chub. I hope it all goes away after she is done with steroids. The chemo and steroids are making her not want to walk as much, they did say that her joints could be weak so putting that and her weight gain, in her stomach, in to consideration it all makes sense. It makes me a little sad because Sophia has always been an over achiever at everything since the day she was born, really she was, and to see her kind of digress in certain areas really sucks. She just wants to eat all day, lay around all day and not really walk or play but I know this is just for a season and I am looking forward to when this season is over. I just keep praying that all this be over soon and when it’s over for it to never ever come back.
      Hair. Sophia’s hair has officially started falling out. I didn't think it would be this fast. The doctors and nurses told us that it would take two weeks to fall out and two weeks went by and nothing. I was relieved and I even asked the doctor if it was possible that her hair wouldn't fall out. He said that there are rare patients where that doesn't happen to them but for the most part all patients lose some to all of their body hair. I started noticing strands of hair but nothing that alarmed me like yesterday, Saturday the 8th of September, it really started falling out. I noticed a bunch of hair on her shirt and I wasn't sure if it was coming from her so I decided to pull on her hair and, yup, a bunch of hair came out in my hand. I kind of freaked out but I didn't want to alarm her. So I asked hubby if he knew it was falling out and he said that he had noticed it. By the end of the day her hair was getting everywhere. If she leaned on you it was all over your shirt or in the bath it just fell out with the water and just every movement she made it seemed to come out. She also has a big knot in the back of her head but I refuse to try and take it out because I know the more I mess with it the more I’m pulling her hair out. I shed a few tears and am emotional about it but I’m trying not to let it get to me especially since I noticed she is noticing it everywhere and I don't want to make her feel like something is wrong. I still cant believe all this is happening to my baby girl. I don't question it at all I just cant believe it. It sucks. I wish it were me and not her or not even me just nobody at all.
      Life So Far. Our life so far has definitely been a change for forever and is definitely an eye opener. The things I used to be lazy about I feel like I  no longer am and the time I used to spend with Sophia I took for granted and I no longer do. All of this has definitely brought my hubby, Sophia, and I closer. I didn't think we could get any closer but we did, it is possible, especially when you let life get in the way and all the daily task that consumes your world and your thoughts. None of those things seem important anymore. The Lord is teaching me new things and I’m sure many new things to come. I was always a futuristic person, a person that only worried about tomorrow and what may come and planning planning planning and I never really slept good because my mind was just going over things that I needed to do, I worried about it too much but now I am taking things day by day, hour by hour, and minute by minute. Life already goes by so fast but when all you think about is tomorrow and the day after and the day after that it goes even faster. I am so thankful that throughout all of this I am learning to slow down and to “stop and smell the roses” not only for my sake but for my daughter, my unborn son, my future children, and just life over all.

Mommy & Sophia being silly

Sophia's Face & Stomach bloat

This You Tube clip seems appropriate for my little one. She would watch this clip everyday on the You Tube channel at the hospital and now that she's just been not wanting to do much I want her to keep trying even though it may seem hard to do. Playtime will come soon little one!