My home isn't made of glass and the stones you throw hurt.

Life is something that is given to you, you make the most out of every hand you are dealt and you fight like hell to get the best out of it.......

The past few weeks have been an emotional roller coaster in our home. With the conversation of new babies, our family's future, and all the tests/appointments for Maelee. But during this roller coaster ride I did not intend for us to hit so many loops and turns of negative comments, thoughts, or just questions I felt we had answered a thousand times. 

Maelee is 17 months old! I can't even begin to shout from a roof top how proud and amazed I am at her each and every single day! She has fought, persevered, and is more determined than you can imagine. You can't tell you NO or she will just keep doing something until it happens! She is my rock, my miracle, my hero! There is no strength in the world that compares to what she holds in her heart and mind. 

Maelee is still in OT/PT once weekly, still attends school where she gets CBRS (play therapy), and continues to be followed up with a ton of doctors. This past week we took Maelee to have a sleep study done. Many have questioned why "we would put her through something else". But those people do not understand what we live with, what my baby girl can't do anymore because she is so exhausted, and how much it holds her back on a daily basis. The energy she needs to eat, play, participate in therapy, and go to school just isn't there no matter how many hours of "sleep" she has gotten. So with the recommendation of a sleep specialist (who BTW has amazing credentials) we did a sleep study to rule out a few things that are of serious concern. Yes serious is the word for it. Apnea is a possibility.......hopefully this is not something we will have to conquer next but we are ready and waiting. 

When it comes to Maelee's therapy we get told how "perfect" she is and that no one can understand why she goes so much or how she could possibly have mild CP or SPD??? Well I'm glad that we know so many "experts" in the world.....but we are going to continue doing what is best for Maelee and what we feel is helping her. Without the therapy we don't know where Maelee would be. There is NO CURE for CP only therapy can really help......and IT HAS HELPED HER!!! Maelee's neurologist made a statement to us that "30% of children with mild CP by the time they are 3 years old have small if any noticeable results of their CP"......well to all those people who even question to themselves why we do what we do.....Maelee will be in that 30% if we can help in anyway possible! 

I know she is a happy beautiful little girl! She is a joy to be around. But her sensory stuff takes over and watch out. Many do not see this they only see the happy times. I promise you it has gotten better.....but this is something we will deal with forever. This is Maelee and we love her for it. She has quirks we don't understand but we just help her with them. :)

Now for future children. Yes the comment "Why would you want another sick baby?" has been asked. I know you read this and are shocked that someone would say that....but not just one person its been a couple. Or "Can't you adopt?" and my favorite one of them all "Isn't Maelee enough?"

Lee and I have met with our OB and the high risk OB....we know that our chance of ever having a full term baby is pretty slim. I will more than likely deliver the same week or earlier. I will have to have injections stuck in my thigh every week from week 16 until 37 (if by some miracle I make it that long). Our child will not have room to grow at some point and in return may have to be take out of me early......yet another reason for a preemie. But with all these concerns and statistics WE are the ones who have to decide what is best for our family.......not anyone else. You never know what will happen when you become pregnant even if you are the healthiest person alive. I have not been advised not to have children  and I know the risks so now its up to my husband and I to decide.  Further more just because you have a preemie doesn't classify them as a "sick" baby.....yes Maelee spent time in the NICU, yes the past 17 months have been doctors appointments after doctors appointments......but she is MAELEE. 

I began this blog to get my emotions out and to allow people into our lives...and I find myself writing many things and never posting them......but that has to change. Our lives might not be "perfect" in your eyes but this life we live is PERFECT in every way! :)