Team Mailyna: Meeting her Donor!

Look at that mug shot in the upper left. 

She looks like she's in good spirits!

Bill

Keeping her occupied is the key! Keeps her mind off being isolated and the constant bombard on FaceTime & Google Hangout from friends, family and relatives actually makes her want some alone time  !

But mostly its because she is a "happy-go-lucky" little girl, with a heart of gold! Who wants nothing more than to just be happy!!!! She can bright up any room she walks into, and no one could ever tell she what she has gone through for 11+years….. such a joy to be around!!!! I love her more than life itself!!!!

Mailyna

change my order to paracord if you have not done it yet. those look real good.

Luis

We are continually keeping Mailyna in our daily prayers Glen. Glad to hear all is gong well for her. Thanks for keeping us all updated.

Jedmo

So glad to see things are going well. Keep up the good fight!

She is definitely a fighter! Glad shes is been doing well..thank you for keeping us updated...

Glen, this breaks my heart that your precious granddaughter is going through tough times.
She's got a great smile though, and looks like a positive thinking fighter!
Wishing your family a ton of good vibes!

If she can keep Smiling that is over half of the battle.

Very rough day for my baby! Our worst fear has happened; she has apparently got exposed to someone who must have had or recently got over a cold, and now she has a soar throat. With basically no immune system to battle the virus, this poses a great risk to her.  My heart sank when I facetimed her and she looked so weak....  I had a hard time keeping my composure because I didn't want her to see me cry.....

I pray that the she gets better real soon... Because it's just tearing me part.....

Oah man, I'm so sorry to hear this, all my best thought go out to your little Mailyna

Dang it!   I'm so sad to hear this.  I will continue to keep her in my thoughts.   She is in the  best hands possible and sure these doctors know what to do.

We are all praying for her Bro.

I will pray wish and hope she will be ok. You got to have faith and keep positive God knows how hard that can be. It is also why I have to stay out of the hospital. I'm sure she is in reverse isolation and you can't do much more than that. With all the meds, the things that can be done and new stuff to control such things. I know it is hard to say to people when they want to bring presents in. Say she will get them when she gets home. I'm sure the nurses did that and do not be afraid to say something when a DR or Nurse enters that room with out a gown or mask and gloves. I had to get after my Docs and nurses. After all you do not know who's room they have been in. Give them a nice reminder but more stern the second time. So anyone who reads this I will give you a hint how to get the best hospital care. I do not know if this is the right place but I have much experience. And was told one thing that makes since. Get a note pad and every time someone comes in the room. take a note let them see you take a note. The note doesn't have to be about the care, but the perception is your watching them. And they will make sure they are doing everything by the book. Don't let them know what your writing. They may not like it but it is your child, and your paying the bills always remember that. Keep up the good fight  Jeff

Another rough day/ night for my baby; actually at the hospital with her now. She called up at 9:30pm and want us to come over right now, so I did! Her moral and spirit is down, still experiencing pain swallowing and she sad the she has started losing a lot more hair; so my wife is giving her trim to reduce loss.

As I sit along side her and rub her back ( like I used to do when she was a baby), I can see her finally slipping into a relaxing sleep... Has how I used to put her to sleep when I use to babysit her when she was little. She is so precious!!! I love her so much!!

Here's a picture of all the locks created by visitors; including mine:

Although seeing my baby crying and depressed was extremely heart breaking last night, it was such a joy for both of us as we made each other smile and laugh (as we poked fun at my wife, her mom and the nurses) like we as have done when we are together. Hers tears quickly disappeared and her beautiful smile ce shining through. She soon started to feel relaxed enough ( as I rubbed her back) and soon started to doze. I tucked her into bed with her 2 favorite stuffed animals, kissed her goodnight and continued rubbing her back as she soon feel peacefully asleep..... If I could, I would have stayed all night/morning, but 2am was well past the visiting hours; thank you UCSF nurses for you understanding and allowing us after hours time with my baby!

I am glad I got to see and hold her before going to GS; was sure if I should go, but knowing she's okay, puts my mind kinda at ease.

Love you honey-bunny!

Happy to see both of you smiling