In the shadow of my heart

Ok, after my dose of caffeine, I am ready to sit down and blog about the trouble monster, who is pretending to look like Lily. Today has been joyous fun, and if you didn't catch my sarcasm then you don't know me. If I didn't like my hair so much I might just pull it out. Lily has made me look like a big ole' liar after everything I say. Example:

Does Lily take medicine well?- ME: She does incredible at home, doesn't bat an eyelash and takes it willingly.

Reality here: You bring Lily's meds anywhere near her and one would almost think you were pulling her toenails out. This is before you even make it to the bed to hold her down to try to give her something you know she is going to gag on. Yesterday was gagging, no puking. Today is gag, gag again, gag again and scream at you, then gag and puke. Great mental image right? Great..moving on

Then, lets talk about her shots in the leg, I jest you not, you have to have one person hold her arms and hands, while another holds her her shoulders down, and then someone holding her leg while giving this blasted shot. She hates them and she is that strong, what she doesn't realize, you fight against them, it hurts more, and you are going to have a bigger bruise because of it. Now she in on blood thinners, she bruises like an apple when dropped (Not that Lily is an apple but you get the point). But in this case, a small little poke makes about nickel size bruises. I was told that she can't ice skate, roller skate, roller blade, skate board, no contact sports, if she wants to be on cheer, she can be, but can't be a flyer. Humm...what does this leave? I asked if I could put her in dance and was told that would be safe, but no gymnastics. So I am thinking I need a piano and guitar at home, lots of books and stuff that encourages no playing, just learning. Excuse me Bubble Man, can I borrow your bubble so I can place my daughter into it.

This surgery has changed things drastically for us. There are so many pros and yet so many cons. Pros: May never have to have another surgery again. (BIGGEST pro of all) which in turn, no more surgeries, Mommy doesn't have to stress like a crazy person about them. This ends the pro list, granted it may be small, it is significantly HUGE.

Con list, oh good golly where do i even start? I am trying my darnedest to not even dwell on them for long, but it is a shadow in my heart. I know that no matter how big the con list is, I have to keep my focus on the pros. Once again I am chanting, "no more surgery, no more surgery!" But yet I can't help but throw myself a mini pity party over here. Lily has always been a tomboy in the household. She loves nothing more then being tossed onto the bed with her brothers just to bounce, she loves to climb on things, and she falls, she has fallen off the kitchen chair way to many times because every time I turn around there she is, yet again standing tall giggling trying to get up onto the table. She is a risk taker and a dare devil, and now here I am worried of my mind if she falls and hits her head. She falls and scrapes a knee, before, we would make a big deal over the owwie, give tons of kisses, pick out a band aid, snuggle, and then send her on her way. Now, if she falls, it's, hold pressure, make sure you can get it to stop bleeding under 10 mins. Then if it doesn't head to the ER, if it does then watch and keep an eye on her and the bruising will take place shortly after. I know...these all seem like minor things compared to surgery every 3-5 years, but like I said above, life as I know it has changed. We will cope, we will make the transition into the new normality with as much as ease as we can muster and pull off. I know it could be worse, it always can be worse, there are parents who would take what we are about to go through in a heart beat just if it meant they got their little ones back.

So this is the last time I will complain of it. I have had my pity me session. The only way to go is forward from here. We will deal with the curves as they are thrown at us. We will be thankful for the good, the bad and the ugly like we always have been. I will not be blinded by fear, I will somehow find courage to bring home this fragile little girl. I am not ready right now....LOL...Deja-vu...I was not ready to bring her in, and right now I am not ready to bring her home. As much as I want my family back together, I don't want to take her home until she is of course ready, but hello...mommy needs to gather her wits before the change goes on.

I love my Lily-loo, no matter what we have to do, we would move heaven and earth if needed to do what ever we have to, to take care of her. I would rather deal with tons of meds and strict rules then not have her in my life at all. Good, bad and ugly...thank you for it all.

Love Life, Live Life, be thankful for Life. Question it not, try not to understand why things happen other wise you will waste your time trying to figure it out and not living life to its fullest.

Now, as I look over, Lily is passed out sideways in bed, and as I look at the clock on my computer it is telling me 1:20am...(I started this blog at 12:30pm) I think now it is bed time.

Lily is now on IV Lasix, Motrin and previcd have been stopped. Her blood thinner has to be given by mouth, hopefully we can get it down her without her puking...she is still being given her shots in her legs. Her INR is up to 1.4, we are working towards 2. That is why she needs that med so badly.

I will update with more stories soon...For those of you new to this blogspot, welcome to Lily's actually page. In order to leave comments you must create an account to do so. Thank you for your understandings about the Caring Bridge site. Once again, I thank you all for all of your well wishes and prayers. I read them all and they touched my heart.

To everyone else, thank you also for your prayers and well wishes, your support and faith keeps me strong and in comfort. I couldn't get through this without them.

Sending out my Love, Hugs and Blessings like always.

Sincerely Jenna