That WOW Moment

Yesterday I was a little worried about changing some things up for Maelee but immediately felt a sense of relief and WOW! Maelee began Hippotherapy yesterday with a new OT. She will be allowed to get on the horse when she is 2 so right now they are utilizing the clinical setting, grooming, and other introductions to the horses as part of her therapy. She warmed up quickly to her new therapist....which is not an average response. Many have asked me why Hippotherapy, will she continue her therapy where she has been for a year, why a horse? So here is a few quick blurbs from americanhippotherapyassociation.org to help understand why this is such a wonderful gift for our sweet peanut!

"Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.Equine movement provides multidimensional movement, which is variable, rhythmic and repetitive. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and. motor planning. Equine movement offers well-modulated sensory input to vestibular, proprioceptive, tactile and visual channels. During gait transitions, the patient must perform subtle adjustments in the trunk to maintain a stable position. When a patient is sitting forward astride the horse, the horse’s walking gait imparts movement responses remarkably similar to normal human gait. The effects of equine movement on postural control, sensory systems, and motor planning can be used to facilitate coordination and timing, grading of responses, respiratory control, sensory integration skills and attentional skills. Equine movement can be used to facilitate the neurophysiologic systems that support all of our functional daily living skills."

Why the Horse?

"The horse’s walk provides sensory input through movement, which is variable, rhythmic, and repetitive. The resultant movement responses in the patient are similar to human movement patterns of the pelvis while walking. The variability of the horse’s gait enables the therapist to grade the degree of sensory input to the patient, and then utilize this movement in combination with other treatment strategies to achieve desired results. Patients respond enthusiastically to this enjoyable experience in a natural setting."

We will be continuing Maelee's therapy at her current therapist's office. We could never imagine changing her PT! She has done so well with Maelee, understands her needs, and continues to help our sweet girl. She has been there from the beginning of this therapy journey and there are no words to describe how thankful we are for her. 

Maelee also receives speech and OT there......We have to make a decision on what is right for Maelee and that might be moving OT to the Hippotherapist, doubling up on services that week, etc. Unfortunately insurance doesn't pay for just Hippotherapy they have to file the claim under the provided therapy, such as OT in this case. Maelee is allowed so many visits per therapy speciality each year and I can tell you these visits are not enough, will be used up soon, and then I have no clue what we will do except sell everything and pay out of pocket. 

I have made a ton of phone calls, filed paperwork everywhere I can think of, and yet we are standing alone to fight this battle. Maelee is the child who will fall through the cracks, she is not severely disabled, we both have jobs, and because of that our insurance "should be enough". Well it's not. They put caps on the amount of therapy my daughter who has CP (a lifelong disorder) can have each year and for that I am aggravated.  But I do know that we will do whatever we need to help her get these new services. 

Lee and I both left yesterday feeling like we were in the right place and that this is something that will benefit Maelee so much. We take her back next week to get her evaluation and go over it (7 pages.....) and then discuss where we go from there. I am excited to hear what she has to say, to see how she plans to help Maelee, and to have Maelee meet the horses! Maelee will succeed at all she does in life and we will make sure she is provided this opportunity no matter what we go without. 

Our sweet Peanut is going to move mountains in her life and I am so privileged to watch her touch the lives she comes in contact with! Sweet miracle!

To the person who is missing it all......

Dear You,

I write this letter after the loss of someone near to my heart that I only wish could have snuggled my beautiful daughter. I write this letter to you as you have chosen to not know my daughter. Our lives didn't get to busy, we didn't have too much planned, but you chose to not see her.

As a mother I can not understand not wanting to see your child, let alone your granddaughter. You are missing the greatest miracle and beautiful human being in the whole world. She is a fighter, she loves like no other, and her personality is something to treasure.

You were not there when she was born and fought for her life, you have not been there to witness the milestones we have so longed to see, you were not there to support your son during these very difficult months. And you chose that.

Each month has been hard, full of surprises, and amazing smiles! You missed it. You continue to miss it. You know she was born early, you know her life started off rough, you have been made aware of the struggles and special needs she has yet again you still chose to stay away.

I have opened my home to you, our hearts have been open, but I now feel that the door is beginning to shut. Maelee is the most important person in my life and the fact that you have chose not to see her is something I would rather not deal with. I will one day have to look at her and find the words to describe the situation without talking bad about you. I will never speak of you in a foul fashion nor have I, you are the father to my husband and "grandfather" to my daughter- I use that term loosly since you have no idea what being a grandfather is truly about.

We no longer speak of you. We no longer write you emails in hopes of responses. We no longer wait for you to show up with that open invitation we have given. We don't expect you to ask questions or care......we know all too better. I pray that you change, I pray that you open your heart and realize the choices you have made are life long.......I pray that you realize we have not shut our door to you but yet you still don't come in.

Being a parent is a gift and something to be treasured. Being a grandparent is made of pure joy, love, and something many never experience. You have been given a gift but yet you throw it to the curb. You have filled your life with people you "love" yet they have put a wall between you and your family.

You don't have to like me, I am ok with that. You don't have to like the choices I have made. But you should show love to your son and your granddaughter with everything you have.....yet you choose not to.

So to you I say- I am sorry you don't know Maelee. I am sorry you don't get to see her personality or how much she resembles Granny in the things she does. I am sorry you choose to not wrap your arms around this little girl who is growing so fast. I am sorry you will never get to experience her love, for she is a miracle and the love she gives is that of a miracle! Her precious hugs, kisses, and sweet conversations are something you will miss.

But what I am sorry for the most is that one day we will have to tell her what really happened, the choice you made, and I know those words will sting her, hurt her, and possibly make her feel less. You have chosen to put that burden on a child.

Sincerely,
The Mother of a miracle, Wife of your amazing son, and a woman who will never understand the conditions you have placed on everyone.

Yes...yes...How I wish I didn't have to answer yes!

Maelee will be having tubes put in her ears tomorrow along with having them thoroughly looked at. I am looking forward to seeing how her speech and sleep are affected! Of course with any surgery they call and ask a million questions. I thought I was over her birth, the nightmare of those 39 days, and well to be honest all the hard times over the past 20 months....but I was wrong....

The first year of Maelee's life we had to relive her birth story at every appointment, every new doctor, every new therapist. But after that first year they all had her records, new her story, and I could breath knowing I wouldn't be asked those hard questions anymore. Today the surgery center called to ask questions regarding anesthesia. She had a MRI with anesthesia at the end of last year, but they already had her info and just reworded it to make sure it was correct. Well today was a new place, a new doctor, and no history listed.

"Does Maelee have any medical issues or special needs?" hahaha! I almost laughed when this was asked and just said "How long do you have?". She broke the question down from the beginning. Did she have any breathing complications at birth? Why yes she did, and I went on the tell them of her use of oxygen, doses of surfactant, medications, NICU stay length. The whole time the lady asked questions in between- you see I know that all this matters when it comes to Maelee's breathing during a procedure. Her immature lungs haven't developed completely yet so difficulty can arise. Once we covered her birth and the scary 39 days, including the heart failure, hypertension, and medications for those I was more than ready to be done answering questions.

"Does Maelee ever use a nebulizer, inhaler, or take anything for asthma or allergies?" Yes! After explaining her use of the nebulizer and the new prescriptions of singulair she moved quickly on to the next question which I expected..."Does she have GERD or reflux issues now or in the past?" Yep we have that too. Prevacid helps some and we just go with the flow.

She asked about any diagnosed heart problems or defects...nope! If she had any hearing or vision issues......not yet! Then after she covered the systems of the body she asked the hard question: "Has Maelee been diagnosed with any neurological condition such as Cerebral Palsy, seizures, migraines, etc?" My heart sank as I answered this one....yes she has mild CP. Then I got the response I hate, the pity response, the I feel bad for you response.....the dreaded I'm sorry and do you think it is related to her prematurity? To think about it she asked if a lot of things were related to her prematurity and difficulty at birth.....not something I wanted to talk about.

She continued to ask questions about Maelee, we covered her sleep disorders and medication related to them. Had to add up how many times she has had the flu, pneumonia, RSV, bronchiolitis, been on steroids for any of them, and any other breathing troubles. At this point I made a little joke on how we could of had coffee and chatted for as long as we have been on the phone. :)

After a chuckle she asked the next hardest question, "Would you say Maelee is that of a typical 20 month old?" TYPICAL is a word I have learned to hate, dislike, and loathe. No Maelee is not a "typical" 20 month old...she is Maelee. But development wise I knew she was behind, she is a preemie and that is to be expected. I had to list the age I thought Maelee was on, what therapies she is recieving, special needs, braces......I had no idea what this had to do with her surgery but I knew that the sensory stuff would probably play a role tomorrow.....she kept asking and I kept answering.

When she was done getting the novel of the past 20 months she finished by saying to arrive at 6am and have a great day.

Have a great day? You just had me rehash all the things I thought I was over, you asked about her CP, breathing troubles, sleep disorders, medications, therapies.....and everything else that has happened and been dramatic. I wanted to not talk about it, I wanted you just to know the answers like the others did. What I truly wanted was to answer no to all your questions instead of yes to almost every single one.

I feel guilty, I feel as if I am to blame, I feel like my body failed my daughter, I didn't keep her safe and because of that she has a life of challenges ahead. That is the reality and feelings I live with daily. When I think of the past 20 months I am thankful and blessed to have this sweet girl in my life, but in the back of my mind I can't help but think if my body just had kept her in 7 more weeks how her life would be different. Would she have CP, would she have sleeping troubles, GERD, possible asthma? Would she have therapy almost every day of the week, would she need little braces, would she be able to process the world better? Would her life be different or would it be the same....I can't help but think it would be so different. Her first 20 months could have been spent playing and having fun instead of therapy and specialist visits with testing. I will never know the answer to any of these questions. I will always feel guilty. I will never know how different her first 20 months could of been.

The only thing I know is that I am trying my best to make everything right......I can't erase the start of her life, I can't change any of the tests she has had, the diagnosis that hangs around, or the fact that we spend more time in therapy then we do at the park.

Early intervention has been a god send, therapies are the basis for our week, and the daughter I have today is determined and strong willed. I wonder if she would have this personality if she had only stayed inside for 7 more weeks? Not sure I want the answer to that ever, I love her personality. Her strong will, determination, stubbornness.....all these attributes make her a fighter and my daughter.

"Maelee is doing amazing!...."

"Maelee is doing amazing! She is transitioning from activity to activity with limited meltdowns. She has improved so much with her tactile defensiveness, when it comes to craft time she will now put both hands in the glue. She is becoming more social with the other children and really loves to sit in circle time. I am so glad you decided to bring Maelee here and I can see the growth in her. Her balance has gotten better and I can see her braces have helped her so much. I just couldn't be more proud and excited for her!"

This is what I heard when picking Maelee up from school on Wednesday! I was so proud of her and couldn't believe the amazing conversation with her play therapist! I thanked her for all she was doing, told her how much I appreciated everything and then walked to the car. After kissing Maelee and praising her for all she has done....I cried! I cried tears of joy, tears of excitement, and tears of love!

This is one of those times you aren't sure if you are doing what's right, should she stay home with me all the time? Should she be going to school when I am at home during the week? Am I doing enough? Can I be doing more? These are questions I ask myself everyday! But on that day I knew I had made the right decision for Maelee! Her school was helping her, her play therapy was helping her, and she was growing as a tiny person!

My Momma heart is bursting with love and amazement!

I love summer time! I love spring time! I love warm weather!!!

We have been spending alot of time outside recently and I feel blessed to be able to watch Maelee play and enjoy the beautiful weather we have been given....it was 89 yesterday! But with the outdoors come experiences Maelee is not accustomed to and in turn her sensory goes crazy!

Grass is something we don't even think about. It grows and we walk on it, the dogs potty on it, and the weeds take it over everyyear but to Maelee this grass thing is all new and she let us know! Maelee is walking so good with her braces and is able to walk through the yard without falling a ton....but when she falls if you don't wipe those hands immediately watch out! The grass becomes her enemy and our enemy. She meltsdown and is hard to gather back together again.

I love being outside and keep taking Maelee with me in hopes that the scream will lessen, she won't freeze as much from the grass touching her, in hopes that she and I learn to cope with this misfortune. It saddens me to think that something so typical for everyone becomes a nightmare for her. But I do know that she will work through it and we will help her the best we can. She loves to play outside but is perfectly fine staying to the deck or the pavement. We won't force herto love the grass, won't stick her hands in a sand box, we will help her when she is ready to love those things...or just have a like for them.

Everything has been amazing this spring! Watching Maelee ride her little four wheeler outside, planting flowers while she chops my new flowers with her princess shovel, and most of all the smiles when the wind in blowing in her face! The sun is sometimes a bother but she will cover her eyes and let us know- and she looks so precious in her shades!

International Kangaroo Care Awareness Day!!! May 15th :)

This post was written 12/1/2011. Sharing today in honor of International Kangaroo Care Awareness Day, May 15th!

Kangaroo Care

My posts may seem out of order and I apologize for this. I wake up each day and whatever I'm thinking about I write about. Today I woke up and thought about how much Maelee has grown from the first time I held her. I can't believe that she is getting so big, it's truly amazing to watch her grow each day.

The first time I held Maelee was on 9/7/11, a day I will never forget. For many days I had watched her, touched her, and even gotten to change her diaper but all that I wanted to do was kiss and hold her. We spent each day in the NICU and this would be the last day Lee would be there for the week (he had to return to work so he could have time off when she came home) so we were enjoying each second with our daughter.
The respiratory therapist and nurse had come in to check on her and asked me the questions I had waited so long to hear, "Do you want to hold her?"! YES YES YES!!! OF COURSE I DO! I was so excited that I can't explain the joy that overcame me. I was going to hold my daughter for the first time since she was born!
Kangaroo care is something that is done to promote bonding, help with breastfeeding, regulate temperature, helps with babies heart rate, but the only thing I cared about in this moment was my baby would get to hear my heart beating again. Something that was taken way to soon from her.....and that I would get to feel her against my skin, something I was longing for.
When doing kangaroo care with a baby who has medical needs and many tubes it's something that is done for an extended period of time. It takes many care providers to set you up and you must stay that way- this was explained to me ahead of time and the only thing I could say was you will have to take her from me I am not giving her back! So after a trip to the bathroom and many wonderful nurses to help us out  we were on our way to snuggling.
The moment Maelee was laid on my chest I began to cry....it was the moment I had missed during her birth and I couldn't control the emotions. There is no greater feeling than holding your baby for the first time or any time after that!
She had so many little tubes to be careful for. She was still on her bubble c-pap, had an umbilical catheter (where she was getting her nutrition from), heart monitor, oxygen monitor, and a feeding tube. But for those 2 hours (YAY!!!) I didn't see the tubes I just saw my precious daughter in my arms. I kissed her, loved her, snuggled her, rocked her, and most of all I sang to her. The only song that came to my mind was  "This Little Light of Mine", and to this day this is the song that calms her and she loves it.
Handing her back that day was hard but I was so excited till the next time. Being in the environment and situation we were in, where I couldn't just pick her up really helped us realize and be thankful for each moment we were able to hold her. I will never take for granted snuggling and holding my baby, I will never get annoyed no matter how tired she is, I will love each and every snuggle, kiss, frustrated moment she may have as long as they are in my arms- I will never let go!

I was able to hold her again the next day for 3 hours while Lee was at work, this was the shortest 3 hours of my life and I never wanted them to end. The evening of the 8th I was asked again if I wanted to Kangaroo with Maelee and although I loved it and would snuggle her for hours I knew that Lee needed to snuggle her. Lee was very scared, she was still small and had tons of wires but I knew this was the best thing for him (her bubble c-pap had been removed and she was on oxygen so I knew this would help him). So the nurses set Lee up and they placed Maelee on his bare chest, an amazing moment I know he will never forget.

Those moments will stick with us forever. No matter how sick she was, no matter the tubes and wires, she was our daughter and we were blessed with a miracle! We loved her from the moment we conceived her and each day it grew and grew and now I can't imagine our life without her. She is truly our little miracle!

A Mother's Day Treasure

Mother's Day 2012 is a day I will always remember! Maelee was baptized that morning and we finally got to share her with the church family who had loved her from the moment she was born. But that afternoon while installing baby gates with Lee and my dad I heard the most sweetest voice and it melted my heart! Being her Momma is the most wonderful gift and blessing I have ever been given!

Mother's Day 2012

Mother's Day 2013

I am just a Mom....

I am just a Mom..... WOW what a loaded sentence. Yesterday while being asked why I have on green bracelets I of course spread awareness and told this person about our precious Maelee. I told them about her amazing personality, her CP, and all the accomplishments she has made and then they said...."You are a super Mom". Woah!

I responded with this simple but loaded statement, "I am just a Mom". She continued to say no you are a super Mom, look at all you have been through and do for your child so I responded 3 times by saying "I'm just a mom."

Being a Mom is the best job...no wait career I have ever been given. I do not have special powers, or fly from roof tops, no super hero cape over here.  I do what is needed to give my child the best chance at an amazing life, and that is what Moms do. Yes our situation may be different, while you are at soccer games we are at therapy or praising Maelee for using her left hand. 

I am a Mom first, wife second, daughter third, and friend to many....oh and a nurse! :) I spend my days researching the best therapy, different treatments, medications, activities to enroll Maelee in to help her, and witnessing her miracles and growth. Yes I know that the typical Mom does not research daily for medical things but they do research daily for things to help their child grow as a person and reach amazing goals. This could be sports, music, summer camp, the right church, play dates, etc. 

It may seem that I am being cheated out of typical parenting but I promise you I have not been cheated or missed anything. The one thing Maelee has shown us is to appreciate every small thing in life. So the next time you are at the ball field, dance recital, park, shopping with your children, or just laying on the couch put down that phone, shut the computer, and take in every second. Look at how amazing they move, how their minds have grown and become so smart, enjoy the laughter and their ever changing smile as they grow. Look at their hands and feet and realize how tiny they once were for you are witnessing a miracle each second of their life. 

You are just a Mom! I am just a Mom! Enjoying our babies is the most spectacular gift we have been given. Celebrate every milestone like its the most amazing thing you have ever seen. Praise your children with love and hugs. But most of all just be their Momma for you are "Just a Mom" and that encompasses more than people can imagine.

My heart! :)