Day +309

Everything went well during our trip to Cincinnati. We made it home safe and sound. It took a lot of explaining to Alicia that we were only going for a short while. She did not want to get on the plane. She made sure that she told everyone, including Dr Davies that she was not staying and that she had to go home cause Ne Ne said.


Dr Davies said she looked good. I was hoping that she was going to take her off of some of the hundreds of meds she is on but the only change was with the Tacrolumis (sp??). Her goal is to get her off of the fluids that she is getting over night but she needs the Magnesium and Potassium that are added in the fluids. She just cut the med in a third, she wants to take her off of it slowley so she will not get GVHD again. This med that she cut also effects the Magnesium level so the goal is to get her off of it so it will not effect her Magnesium level which will mean she will not need the dose in her fluids. We are going to give it a trial this weekend. I am not going to give her fluids Saturday, Sunday or Monday and the nurse is coming out Tuesday to draw blood to see if it worked. I so hope it does because that also means we will be able to get rid of the Picc line.


We have to go back to Cincinnati in four weeks and at that time Alicia will have her Year Biopsy and checkup. I can not believe it has been almost a year since she had her transplant. I am so glad it is behind us!!!!!!

Day +298

I hope everyone has a Great Easter. It rained all day where we live, but we still had a great day anyway. I am actually kind of glad it did rain that way I didn't have to upset Alicia when she couldn't outside. We spent the day at Erika's and cooked a Ham and watched Slumdog Millionaire. Alicia looked soooo cute in her Easter dress. I had to put her hair bow on her strap to her mask since she don't have enough hair to hold one in yet......... I got it to stay in long enough to take the picture but as soon as she moved it fell right out. Ne Ne came up with the idea to clip it to her strap on her mask. I promised Dianne pictures... I hope this was fast enough :)

The boys got hair cuts (actually shaved) while we were there yesterday also. It was Jayshons first one. All of his little curls are all gone:( After Daddy was done with the boys hair Alicia wanted hers cut off again. Of course we didn't let her but it was cute. She said she wanted hers cut off like it was LOL.........

They both are still soooo cute!!!!!!!!!!!!!!!!!!!

We leave for Cincinnati a week from today. I have so much fear that we won't come back in three days like planned. I am sure we will it is just the first time back since we got home and we were there sooo long. Alicia still have very loose stools, and she is still coughing but it sounds more like a dry cough now. But still no fevers which is good.

I am excited though to see all my friends at the RMH. I plan on going to see everyone as soon as I get there. I miss them so much.

Take care and thank you for all of the support.

Day +295

Ok Ok I know it has been a whole week since I updated. I am truly sorry. My mom called this morning to let me know how bad I have been neglecting Alicia's site. I never realized how time flies by so fast and how busy I would be when we got home.


Alicia's new Nurse, Lynn, came on Thursday and did her dressing change. It was a better job than the last two but it still left a lot of room for improvement. Wow how I miss the care in Cincinnati. Alicia was also getting sick at the end of last week. Her stools were very very loose and she was going all of the time. Dr Rosen had a lot of tests ran but I do not have any of the results yet and she seems to be feeling better.


I took her outside for a bit today to feed the birds and she was so happy. This summer is going to be very hard trying to keep her in.


We leave for Cincinnati a week from Monday. Everything is set and Wings of Hope is taking us again. They are such AWESOME people and I owe them a lot.


I promise to try to update more often. I truly am sorry.

Day +288

So sorry again that is has been a while since my update. I haven't even checked my e-mail in almost five days!!!!!!!!!!! Being home just consumes so much of my time. I know how many of you care and worry about Alicia and once again I am so sorry.


Everything is still going well at home. We had a couple of close calls with Temps, one last night was 99.9 but it went down so I did not worry. She has finally slowed down on asking to leave so much and realizes we are still isolated from the real world but at least we are close to home and family which makes it so much easier. Ne Ne and Mommy and Daddy make daily visits so that makes Alicia Happy.


We are Leaving on Monday the 20th for Cincinnati, I have told Alicia and she said "No Way" i laughed so hard when she said that. She said "No Mcdonald House Mee Ma" so I promised her we would only go to visit and not stay and she said OK. I told her she would see Theo and she was all for that.


Now to some not so good news............ I woke up Yesterday morning and our bed was soaking wet. y first thought was Alicia did not wake me up and had Pottied more than once and I was laying in urine up to my shoulders. YUCK!!!!!!! I woke her up (not so nicely) and told her to get up cause she had pee pee'd all over us and when she sat up she was holding her Picc line in her hand. i freaked of course and clamped her line immediately. I checked to see what had happened and you could tell her line broke and all that was left in her arm was the very thin tubing. Off to the ER we went. The reason the line broke was due to the Nurse I have been complaining about had not changed the dressing right. She did not use any securement device or any tape or strips to hold in down. The extension line was way to heavy and the weight broke it in the middle of the night. I was relieved to know I was not laying in urine but upset that I had voiced my concerns about this nurse before, needless to say she will not be coming out to our house any more and the new nurse assigned is much more educated with picc lines.


The new line being put in was a lot differently done here than it is in Cincinnati. They were going to put Alicia to sleep to do the procedure but I said No because she had already had two others with no sedation so why would she need it now. Alicia did very well, if only they would of blocked her view it would of been alot better. The sight of the needle was the reason why she freaked so I immediately blocked her view and it was fine after that.


Alicia is calling me so I will update more later. Thank you so much for your support and I will get b etter about the updates.