Raising Awareness

Raising awareness is something we take seriously. Over the past year we have walked and raised money for prematurity. Shared our story and some heartbreaking statistics! We are beyond thankful for the March of Dimes and all they do for prematurity and as a family we will continue to march on each year.

It may seem that we talk about Maelee having CP all the time or that we share our story a lot. We do share her story, her accomplishments, and all we do for her to raise awareness. She has Mild Left Hemiplegic CP, many would not know she has CP by looking at her but that's the point, it has to be talked about. This is something she will have forever, there is no cure. And the prevalence of this disorder is only increasing in the United States each year. It is our responsibility to educate and advocate.

Raising awareness for Cerebral Palsy is a passion of ours. This disorder is something that is not talked about. Many think unless you are in a wheelchair is doesn't affect your life.....huge myth.  

• Cerebral Palsy is the most common motor disability in children affecting over 800,000 Americans, 1 in 303 children, and estimated more than 17,000,000 people worldwide. 

There is no federal funding dedicated to research to helping find a cure or better treatments for CP.  I was in shock to think that so many children suffer from this disorder, more than childhood cancer yet we aren't doing anything as a country to fund and help these families. 

"No dedicated line item funding exists for Cerebral Palsy, despite the fact it is the most common motor disability in childhood affecting over 800,000 Americans, with higher prevalence than Muscular Dystrophy, Parkinson’s Disease, Childhood Cancer, Hearing and Vision loss, Spina Bifida, Hemophilia, Fetal Alcohol Syndrome or Cystic Fibrosis." Source: CDC; National Institute of Neurological Disorders & Stroke (NINDS/NIH) 

Here is a link to Reachingforthestars.org Proposal they sent to the government for funding, filled with lots of statistics and data. 

Reaching for the Stars Proposal

What we do know is that therapy is the best treatment for this disorder at the time. That is why Maelee spends her week in PT, OT, and CBRS. This is why we do therapy at home even when there is no one around we are doing therapy. Maelee is allowed to be a toddler but we have to keep working with her on her strength, balance, coordination, fine motor skills, and to keep using her left side. 

I hope and pray that we will continue to raise awareness and that one day more will be known about this disorder that has so many unanswered questions at this time. I know we are doing everything for Maelee that we can, some may think it's extreme, or too much. Those people do not understand, they do not live in our world and that is ok. I ask this question: If it was your child with a disorder that couldn't be cured, Wouldn't you fight like hell to give them every treatment possible that could or may help them!? I know the answer would be yes!  

Please google and do research regarding awareness, there are walks all around the country. Places to donate and organizations you can purchase little gifts from online. Talk to someone about this disorder, share the statistics. And if someone you love has CP you owe it to them to share the conversation with others. Place a sticker on your car to start a conversation, a post on your Facebook wall, or just a post on a blog. So many ways to spread awareness, yet no one is wanting to do it. 

I am Maelee's Momma. She is a beautiful little toddler with reddish blond hair, blue eyes, and a personality that will make you laugh the moment you meet her. She is a little mommy to her babies, loves to sing and dance, and can't get enough of Sofia the First. She would rather never touch finger paints, can't stand shoes or socks, and is not a fan of any textures foods. Maelee likes to "talk" on the phone and doesn't mind "telling" us how she is feeling, although we don't understand. She is amazing but with that Maelee has CP, SPD, PLMD, and RLS. None of these define her or make her who she is but they are apart of her. She will always have them, these abbreviations will be with her forever and we can't change that but we can share them with others and EDUCATE. 

Sleep Study Results

We have been so busy since we got the results last week that I haven't been able to update anyone really. It was too much to post in a quick paragraph on Facebook and a blog just didn't fit our schedule. But it's 5 am and I have been for an hour already so now is the perfect time! :)

We met with Maelee's sleep doctor last Thursday (2/7/13) morning to go over the results of the sleep study she had done the week before. We were not surprised by the results of it but disheartened by what would come next. Maelee has PLMD (Periodic Limb Movement Disorder), RLS (Restless Leg Syndrome), and Insomnia. PLMD and RLS are things she will always have but we are hoping the insomnia is something she will either grow out of or we will learn to cope with somehow through sensory regulation.

I know many people get RLS when they are pregnant or suffer from it as an adult and take sleep medicine to help them fall asleep but mixed with PLMD we can't just give her melatonin and hope she drifts asleep. PLMD arouses her in her sleep but doesn't wake her......she hardly gets deep sleep! The whole night she did the sleep study she only hit REM sleep (deepest state of sleep) 3 times and for a very short amount of time. It makes me sad to think all this time she has just been so exhausted.

Here is a brief description of PLMD from the website sleepdisorderhelp.com:

"Periodic Limb Movement Disorder (PLMD) is characterized by the periodic (every 20-40 seconds) and sustained (0.5-4.0 seconds in duration) contractions of one or both front leg muscles often causing unperceived arousals or awakenings from light or deep sleep. These contractions result in repetitive jerks for about 2 seconds of the toes, feet, legs, arms, and/or thighs, which often occur in stages 1 and 2 of NREM sleep and disrupt the quality of sleep."

So ultimately her RLS is making it almost impossible for her to fall asleep without thrashing all over the bed and her PLMD is what is causing her to jerk and twitch all night causing her to get inadequate sleep.

Maelee has been started on an anti-seizure medication that has been shown to have great results in children with PLMD.  We have to taper the dose up so it could take up to 7 weeks to have the right dose in her system and we are praying this is the right medicine for her or we will be starting the process again with another one if it doesn't help at all. Maelee has always had great iron levels but we are taking her again to have her Ferritin (iron stores in the body) level check as if this is low then it can cause her PLMD to act up and she will be put on a supplement. They will also be checking her other lab work periodically.

I hate this is one more or two more I should say things she will have her whole life....but she is a fighter and strong willed. She will manage this just like she does with everything else. :) Our miracle is made of something special!

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! :)