Ava Grace Milam Update!!


New member
Ava is now 6 years old! Some good and bad news. Good news first!! First off she is tied with the oldest child to ever survive a grade 4 brain bleed! 2nd she is in school KINDERGARDEN!! She has a multitude of equipment wheelchair, eye gaze machine to help her speak (when she isn't being stubborn about it) special hospital bed to help with her conditions. 3rd we just came back from Neuro and her head has grown a whole inch and half AMAZING growth in a YEAR!! She has never done THAT before!! 4th she is still very happy and grins from ear to ear even while being VERY sick!!
Now for the bad news.. Since Nov 28 2012 she had pnuemonia 4x in 2 months. She also has had an increase in seizure activity, she has had a 45 minute full body seizure right after Christmas, a 25 minute seizure in January and a 8 minute seizure this past Saturday 3/2/13. WE have had to increase her Keppra to max dose and add another seizure med plus up her emergency seizure med just to try and be able to stop them it has worked yet,, slowed down yes getting an EEG in April to see what is going on. Ava also has had hip surgery this past June and had a lung collapse due the surgery. She is getting her pins out this May. Ava has been homebound for several months due all of this illness and seizure activity but we are going to try it back and see how she does! Fingers crossed and please pray.
Ava also has obtained 3 more men in her life.. 2 identical twin teenage step brothers and one amazing step daddy. All of which have been right by her side for the past 2 years.
Another sad note... Ava's father and I divorced and he has refused to allow her to have anymore stemcell treatments of any kind. So... she will continue to worsen till her little body just cant take anymore.. I thought we were very close this past few months.. But she is still fighting and so are we!! Thank you all for everything the support, the prayers, lending an ear when it was needed!! My prayers are with you all and to you who are caregivers... I know the battles yuo fight and WHY you fight them.. It matters to more than those whom you care for it matters to those of us who are fighting along side you.


Pioneer Founding member
Amazing Ava Grace

Tami03 - So good to hear from you. Taking time from your busy world is very thoughtful. She never ceases to amaze, that's for sure.

Maybe, in the future, her dad will relent as he sees how this little girl continues to fight. What a great mom you are and the new men in her life probably give her a lot of TLC too. Please don't stay away so long as we love hearing about Ava Grace and also how you are doing.