Tuesday, November 11, 2008

Surgery & Miracles

We have been waiting for Lily's MRI/MRA results to be read by her Dr's. and Surgeon. We went on Friday of last week for what we thought an apt to find out news about when her next surgery was going to be, but the Surgeon hadn't had time to consult with the Cardi and the rest of the team so he told me he would call me Tuesday.Well the phone rang this morning and the nurse told me what the doctors were thinking. They are going to let us ride out the holidays without surgery. YAY...I was so scared we would be spending Christmas in the hospital. BUT the first or second week of January, she will be going in for her 3rd O.H.S.
They will be doing the Ross procedure. They are doing a complete valve replacement on both sides of her heart.We go December 2nd and we will talk with the Cardi then about all of this. I have time to digest all of this, this time. I am thankful for that, but I am also saddened because she will be having another OHS before her birthday.
Please pray for my beautiful little girl will remain strong and make it through this. I can't imagine my life without her.Thank you for all that have followed her journey from the beginning, thank you for those who have joined in following her journey, Thank you to those who continue to pray for my daughter, and thank you to those who don't believe in prayers but continue to keep my daughter in your thoughts.We are thankful for all of you, without you, Lily would not have pulled as far as she has already.
Bless you all, please know we keep all of you in our prayers. You have no idea how much it moves me in knowing that my daughter inspires others. To know that thousands of people around our country and even outside it it know Lilys story. It brings tears to my eyes to know that my little girl holds the hearts of others. I never thought I would blessed with a child such as Lily, a miracle such as Lily. As I reflect over the last 8 months 1 week and 6 days, the ups and downs we have been on, I could not ask for any more. The Lord above has taught me the true meaning of persavernce, thankfulness, strength, trust, faith, and Love. How much more can I truly ask for?
We just have to believe in miracles and I do because I have one living in my home. Do you believe in Miracle?

Wednesday, November 5, 2008

We were disqualified for WIC

Yes you read it right, no more WIC because Chris makes $40-50 more then the qualification brackets. We have a child with HUGE medical needs, one that has cost us over Half a million dollars in medical bills, one that is going to cap our insurance by the time of her next surgery. But no, that doesn't matter one damn bit. All that matters is that we make that $40-50 more then what we should for a family of 5. To those of you who are thinking oh well, tough luck, well should I state the fact that I have worked since I was 14 years old and have put enough into the government to deserve getting WIC for my family, or at least my daughter. But no, now here we are, with no state help, paying either $29 a can ( a small one at that) for the powder formula or $10 a can for the premaid formula which only last us a day. WIC covered 25 cans of the premaid a month, that was $250 that we didn't have to pay, and we still bought more then that because she would run out. Even with me working we can't afford it.
I am literally sick to my stomach right now...I can't even begin to tell you. Right when I thought things were looking ok for us, the rug was pulled out from under my feet and now I am face down on the floor again, trying to tell myself it doesn't hurt that bad and to just brush it off and get back up again, but in all reality, it hurts like hell. To know that you cant provide for your family because of the financial burden of one of your children...it just hurts. There isn't anything else I ca say about it, all I can do is cry right now, and pray that some how, some way this will all work it's self out, and that we will some how be able to pay for all of this.

Sunday, November 2, 2008

I'm Back- Update on Lilyana

Hello Everyone. Sorry it has been a while. I know you all must be wondering how Lily's MRI/MRA went. Well it went as smooth as it could. She wasn't happy when they took her from my arms and walked away from me. She looked at me with her big blue eyes and that little bottom lip poked out and started to quiver, all the while I could almost here her say to me, "Why are you leaving me mommy? Where are you going? Don't leave me mommy." She cried as the nurse walked into the O.R with her and the door closed behind her. I think I am getting to be a pro at this, because I didn't cry this time. I just gave her a kiss and said, "Mommy see you soon sweetheart." Then again this wasn't really a huge thing like everything else she has been through.

I waited for 2 1/2 hours and finally after visiting Stacey and Addison up on the H&L floor, getting breakfast, journaling, and an episode of Charmed and half an episode of ER, I was called back to see my grouchy little girl. And when I say grouchy, I mean screaming at the world she was so mad. They woke her up instead of letting her sleep and she let us ALL know how SHE felt and oh boy was that mad. She tried to pull the IV out of her hand, she flaied her arms all about not wanting anyone to touch her. Only calming to a wimper when I was holding her but starting up once again when she saw the nurse that carried her away from me. My normally calm, easy going Lily, was mad at the world and in a way it was almost humerous to watch seeing she was so relaxed after her heart cath (which is so unlike Lily). She had to make up for it somehow, so she made up for it in ten fold this time around.

We only were there 15 mins after I was called back, she was wide awake and ready to go home. So home we went to see daddy and tell him all about our morning. Tell him she did, and coddle her he did. She snuggled up on daddy and whimpered all day long.

We took the kids trick or treating that night and what an adventure that was. We weren't even out of the house yet and I looked at Chris and asked him if the night was over yet. He shook his head and told me unfortunatly not. Lets just say, Lucas and Austin had been so bad that day we didn't even want to take them trick-or-treating. But once again, we went against our better judgement and went anyways, and since then we have wished we hadn't. I almost (ALMOST being the key word here) want to take the candy and throw it all away, but me being a candy-aholic, I can't quite bring myself to throwing it away. Needless to say, from the moment the kids wake up, until the moment the kids go to bed, the question they continusly ask is, "Can I have candy? I want candy? Can I have candy now?" I just want to take my ears and remove them from my hands because the broken records NEVER stop.

Oh well, the joys of motherhood. I hear that one day I will look back on all of this with fond memories and wishing I could go back. I chuckle as I just remembered the saying, Grandchildren are your reward for not killing your own....ok so I wouldn't go that far but still. The boys can drive me to the edge somedays. If any of you have met my kids, you would understand how much of a handful they are.

Well I am wrapping this up now. We go to see Dr.Cleavland on Friday at 10:45 to get the results of the MRI/MRA and that is when we will find out when her next surgery will be and what exacatly it will entail. So, look for an update then. I might not get it out until later that day, I have to work at 2am until 8am, then come home and get ready for the apt, getting NO sleep because Chris has to work that day. Go me....I am use to no sleep...but my immune system isn't.

Here are pictures from waiting at the hospital and then trick-or-treating