Her next dialysis clinic is October 1st, three days before the transplant team meets to discuss transplant candidates, that day, to include Maci.
They will have fresh lab results, an even more recent length and weight and I can only hope and pray that there will not be any further delays.
I still firmly believe that Maci's transplant will happen with God wants it to take place. I am not rushing His timing.....I guess I am just anxious for the day to get here.
I am excited at the thought of Maci not doing dialysis every night. I am excited that she won't throw up so much in the morning after her belly being pumped full and drained of dialysis solution all night long. I won't miss being home every night by 8:30pm to make sure she's hooked up for dialysis. I won't miss checking her drain bag every day to be sure she's not showing signs of an infection. I won't miss making sure her catheter is secure every day before she's dressed or making sure it's put back under the stretchy band that holds it when it falls out. I won't miss bath time in the sink, in the infant tub she still has to use because she can't be submerged in water. I won't miss having to go through the very sanitary process of getting ready to bathe her. I won't miss having to use two wash cloths, one for her bath and one to clean her exposed catheter area. I won't miss the bandaging of her catheter.....the tube that hangs out of her skin. I won't miss Maci crying out in the night from the dialysis process bothering her or causing her pain.
I am ever so thankful for all of these things as it has prolonged Maci's health and sustained her life. Without dialysis, and without it WORKING, well....I won't even entertain that thought. My point is that although I am very much thankful for dialysis, I won't miss it every night. :/
I am excited too at the possibilities this creates for Maci, I will always have to keep her clean and healthy and as unexposed to germs as possible but for reasons unrelated to dialysis.
Maci is changing every day. She is rolling over now from her stomach to her back, easier and more frequently. I am so proud of her. She will say no, hey, oh, oh no, hi but not always on demand. She will also, often mimic those words. She laughs a lot and thinks that someone sneezing or coughing is funny. She now laughs at herself when she sneezes or coughs. She is so much fun. She has also started "singing". She "sings" with 3 songs so far. Florida Georgia Line, "Get Your Shine On", Katy Perry, "Roar" and Sara Bareilles, "Brave". Ironically, none of them are Journey songs! Although, she does still like and listen to Steve Perry.
I have to go back to work. Job hunting is frustrating. I was offered a job and after working 7 days, the company lost a large amount of business and I was laid off......after 7 whole days. Now comes the stress of beginning the search again. Looking for a job IS a job.
It was rough leaving Maci and not being able to check in on her whenever I wanted.
It's all about survival and although most days we are only treading water....we're above water for now.
I haven't made any plans for Maci's 2nd birthday or even picked out a Halloween costume. VERY unlike me to not plan ahead but I have delayed in hopes that we are celebrating her getting her Daddy's kidney. I hate to postpone or not even have her a 2nd birthday party but I do think she would understand and wouldn't mind (and she's not going to remember whether she had a party or not, right?).
Please continue to pray for Maci and well as my family. The prayers are greatly appreciated.
Sister CrazyHair 9-14-2013 wearing her Alabama dress.
It was game day, Bama won. RTR!
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