Look at her go!

October 12th, 2012 is a day we will always remember! It is the day Maelee began walking on her own even though she was very sick!!!!

This post is from October of 2012 and never shared!!! I found it in the folder of the millions I have written and had to share this amazing video! :)

Nothing like the love of a Dad or Grandpa

Growing up I was blessed with the world's greatest Dad and the most amazing Grandfather! I stand proud of who I am today because of all they have taught me!
I woke up today and was saddened that Maelee will never be able to meet my Grandpa....he passed when I was 13 weeks pregnant. He was a man of honor, respect, and every other great word you can describe someone with. He was my best friend growing up and I couldn't be more thankful to have known him. I only wish Maelee would have had the chance to meet and enjoy his time. But through the stories she will learn about him and his greatness! :)
I am beyond thankful that Maelee has my Dad in her life! I hate that he lives so far away and doesn't get to see her but a few times a year but those times are so special! Maelee only has one Grandpa in her life and he lives 26 hours away but he is the best Grandpa a girl could ask for! And he makes the moments he is here special! We can't wait to watch their bond grow over her life! :)


This blog was written May of 2012 and never shared! :)

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! :)

2012 in Pictures!

Trying to pick out my favorite pictures over the past year was hard........we only had a few to choose from....or thousands! These are some of my favorites! Enjoy! :)

January 2012

February 2012

March 2012

April 2012- 

Loved these both so April gets two pictures

May 2012

June 2012

July 2012

August 2012

September 2012- 1 year old!!!!

October 2012

November 2012

December 2012

Update on our Peanut :)

Time gets away from me and I have been a terrible blogger lately...that is something I hope to fix in the coming year!

An update on Maelee: Since I last wrote she has had the flu, pneumonia, bronchiolitis, and an ear infection.....gotta love this time of year. She had a 24 hour eeg done to check for seizures...thankfully it was negative. Maelee continues to do the crazy movements in her sleep so we will be taking her to a sleep specialist in January. After the last visit with Maelee's neuro he was very concerned that her reflexes were different in both sides and she was showing her tone differences, so an MRI was ordered.

The MRI was done under general anesthesia and we were a mess waiting the LONG 45 minutes to see her again! We got the best results ever yet the most aggravating results ever....NORMAL! I am so happy that there is nothing major wrong with my sweet baby girl's brain. Her neurologist stated that it may be microscopic and will not show up at this time and a repeat scan will need to be done at a later date (we would rather skip that and just move forward). Having no known cause for Maelee having mild CP is hard but we are coming to terms with it. She is making amazing progress in all her therapies and we are so proud of her.

Over the past few weeks she has been having a few more sensory meltdowns than before so we are adjusting to this and doing our best to prevent, but any sensory parent knows this is a roller coaster you can't prevent you just have to ride out. Her communication is causing frustration. She talks.....we just don't understand. I don't speak Maelee and it breaks my heart. She gets to the point where she is so frustrated it results in a meltdown of head banging and biting....no calming will help. We are in the process of starting to use the iPad to help with communication along with continuing to use sign language.

Maelee is doing great in school! She is starting to socialize better with her peers and is doing great in play therapy! This has been one of the best decisions we made for her. She is learning to be more independent (which is breaking my heart)! My baby is now a toddler! I can't even believe I am writing that.......TODDLER!

We will be continuing her PT once a week! She is doing so good! She started wearing hip helpers to hold her hips and help build her muscle strength up. They help as long as they don't fall down- she has such short legs. :) She will also continue her OT once a week for her fine motor and sensory needs. She just got a new OT as her old one moved. Her new OT seems to really be interested in helping with Maelee and always has suggestions even about the littlest things! Can't wait to keep working with both of them on our little girl! Maelee will be in school two days a week with play therapy and they will also be working on speech with her until we can get her a speech evaluation done for communication.

Reading that I realize she is a busy little girl! When Maelee is not doing therapy she is a typical little girl! She loves her babies and loves to give kisses! We are so blessed by this sweet girl! I can't wait to see what the next year will bring in our lives!