I decided to begin an account of the struggles & triumphs my daughter faces on a daily basis, living with Beta Thalassemia Major (Cooleys Anemia). She's an amazing, vibrant, beautiful little girl, that has more experience, wisdom and grace than some adults out there. Hopefully our story will open doors to meeting & connecting with others that have similar lives. Thank you for reading!
Well, as you can tell, Mailyna never went back in to recount that last transfusion. I'm 100% sure she just didn't want to re-live it, and I'm ok with that. We finally got the logistics out of the way & have her surgery set up for March 9th, roughly a month away. After much talk with Mailyna & my family, we've decided to not just remove her port, but to replace it. Its a complete heart breaker because I was excited for her to not have to worry about all of those added concerns that come with the port in her teens. But when it comes down to it, her little veins probably wouldn't fair well with the beating a transfusion every 3 weeks would give it.
Mailyna on her 1st birthday
Thinking back to the day she originally had the surgery to put in the port is a real tearjerker. Mailyna wasn't even one when we made the decision. I was devastated that we scheduled it a few days before her 1st birthday. I remember vividly this little tiny angel wobbling around on her 1st birthday at the park with a dressing on her chest that I watched like a hawk. I remember the morning of the surgery when they gave her the sleepy gas & her loopy little smile as I took her honu earrings off... She has had a ton of procedures done, many of which she needed to be put to sleep for, yet each time, I feel the tears well up in my eyes & that lump in my throat. I try my hardest every day to stay strong & tough so Mailyna knows shes taken care of & that she doesn't have to worry, yet for those few hours, I'm completely vulnerable & know its all in Gods hands.
Each procedure gets both easier & harder, for the same reason. Mailyna is getting bigger & understands she needs to have procedures done, but questions it more & more. I gave her a chance to blog a bit about her thoughts about the upcoming port replacement & from the looks of it, shes got a great understanding of the importance of the surgery. I know shes actually a little relieved to have it done since the port gave us such a horrible time. Here's her thoughts:
"In March I am going to have a surgery. I am scared about it . I am scared because I think they might do something wrong. I also feel that way because I might wake up in the middle of the operation. I have had this port ever since I was little. I also feel happy about it. I feel that way because once I get my new port the doctors won't have trouble accessing my port. The surgery will take a couple hours. The day before the surgery the nurses and doctors make sure that I don't eat any food. In the night time, before they start the surgery they give you some sleepy medicine. After you take the medicine you start to feel drowsy, then you fall asleep. When you don't know it they begin the surgery. The nurses are very nice. When the surgery is done the doctors tell you that you did great. When they tell you the results you need to sit there for a little bitt longer. Sometimes after you wake up some of your visitors are there to see if you are ok or if you need help with anything. When you wake up you sometimes feel dizzy. You might feel dizzy from the medicine. After the surgery I have to go to a transfusion. I have go to a transfusion so that they can test out my new port. I think that my port will work and cooperate. I think my port will work and that they don't need to put any more medicine. My port will be all better after the surgery. I think that because I trust the doctors that they will fix my port.