This Girl!

I tell you what, this girl of ours amazes me everyday!
Malina has been doing wonderful with her physical therapy this month. She is trying to stand more on her own and has even tried to take a few steps!

She did awesome a few weeks ago trying to walk with her walker. Because she is not strong enough to support herself, we do have to help her by supporting her as she stands or tries to take steps. We did have Malina fitted for leg/ankle braces last week and we should get those the middle of June.
We have been working with a therapist from CMH who comes to our home once a week, Kelli, she is great and Malina is starting to finally like her. However, we just found out that Malina will qualify for a program called First Steps through the school district. We have a  meeting with them next week and then they will have someone come in our home once a week to work with Malina. She also receives therapy when she is in the hospital for chemo. Everyone has been very impressed with how well Malina has been able to regain her different functions since her tumor was removed. We know it will still take more time, but are confident that she will regain all ability.

Reality Check

I have had so much on my mind this week. A few different times this week I have had moments that remind me of the reality of our new normal.
Monday I took Malina in to have her neulasta shot and lab work done. As I was sitting in the waiting room enjoying the early morning snuggles of my sweet girl, she threw up all over her and I. I couldn't even think, "how gross". My first thought was "my poor baby girl". It always sucks to see your kids sick, even worse when they can't tell you. Once we got her back to her room I was able to get her out of her yucky clothes and I wrapped her in a blanket and just snuggled her some more as we watched morning cartoons.  The nurses and doctors were in and out doing their thing, which she is never happy about, but in between all that, I just got to hold my baby. It's no fun that the chemo drugs make her sick to her stomach. They help one thing but then make you feel yucky. She is on medications to help her stomach but that morning she was feeling extra bad.
Her lab work was looking kind of low so Nancy (Malina's Nurse Practitioner) told me to take her back on Thursday to  have her labs ran again and possibly have a blood transfusion.  I was pretty emotional the whole time we were at the clinic. It just really sucks to not be able to make her all better. I hate that as mom, I can't be sick  for her. I really hold onto the snuggle moments a lot tighter now.
After we got home Malina saw Jenna eating so I quickly made her something to eat too. Since she is so pick now about food she gets just about anything she wants, when she wants it. She ate about a quarter of her quesadilla and threw it all up. She thought it was super gross this time! We quickly cleaned her up and she started asking for more, so she ate more! I was glad to see that is didn't bother her much.
Late Monday night (like 9pm, after he had gotten home and had a long busy day) Pablo (Fellow) called to check on Malina and myself since I was having a hard time in the clinic that morning. He was so nice and encouraging. He reassured me that everything she was feeling is normal and that the way I was feeling was normal and ok. It is so encouraging and nice to know that Malina is getting care from a team of doctors that are not just concerned with her but our family as well.
Also this week Malina has been losing her hair. It really started bad while  we  were in the hospital the week before but got worse after being home. Her hair is really thick so it didn't come out all at once. It was however coming out by the handfuls! It was definitely sad but also got to the point that is was annoying to have her hair everywhere! On Wednesday I came home from picking Jenna up from school and I could tell that Malina's hair seemed a lot thinner than from when I left. Billy had given her something to eat and her hair kept getting in her mouth so he decided to brush her hair and run his fingers through it. Most of it came out. I couldn't handle it. I broke down in tears. It was another reality shock for me. A friend of mine came over and trimmed up what was left, it was looking much better after that! Her hair has  continued to fall out this week so tonight (Sunday) Billy shaved the rest off. It wasn't as hard like it was earlier in the week but it is still sad. I know her hair will grow back and it might even be different. Of course she is still beautiful and I can't get over her cheesy smile!