Her first real Mama.

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Sophie is my little miracle, she is truly my inspiration. Sophie has begun to leave me baffled in so many aspects of her development, it’s awesome!!!! A lot of those milestones we were told she would never reach she has already surpassed, we are so thankful for those amazing moments.

Sophie began to imitate the word “mom” several months ago, it was huge! There was a time when I thought I would never get the opportunity to experience these moments but as I have learned what we think about our lives and God has planned for us can be completely different.

For months when Sophie was asked to say momma she would, it would take the persistent request from me or a single request from Emily her big sister but she would comply. It was awesome to hear her vocalize a word, any word but especially “momma” even though it was prompted.

It was about three days ago, I walked in from a long day away from her and to my surprise Sophie ran to me with her arms up in the air and as soon as I embraced her and picked her up she said “mamma”. IT WAS AMAZING!!!!!!!! 

I could not believe that she finally got it, I am “momma”. I could not help but allow the tears to flow, how could I not. These are the moments we live for, those unexpected moments more powerful than any we thought possible and more poweful that we could have ever imagined.

She called me “momma”!!!!  

These are the moments God speaks to me, he tells me he loves me and hears all my prayers without saying a word. He knows what my soul longs for to elevate me to that place of inner peace and love and he gives me just that. HE IS AWESOME!!

Some may not understand the power of a single word, a single word can change your soul. A single word can change your faith, a single word can be that miracle you’ve spent your life waiting for. And, if that word and the association of that is against all the odds that were given what is left but a pure miracle.

Something I have never shared about Sophie is that she has Periventricular Leukomalicia. Periventricular Leukomalicia,  is a brain injury that affects infants. It’s  a condition that involves death of small areas of the brain tissue around fluid filled areas called ventricles. The damage creates holes in the brain, “Leuko” this refers to the brains white matter and “periventricular” refers to the area around the ventricles. PVL in much more common in premature infants than full term infant; since Sophie was born at 37 weeks but was 32 weeks neuroloigically she was considered a preemie at birth. There is still no clue as to why or how this happened to Sophie as I had no physical injuries while she was in utero, they can only suspect that it could be from a traumatic birth.

If I begin to dig deep into Sophie’s journey it becomes to unbearable for me, it helps me realize I am not yet where I truly want to be. Her journey still hurts, more than any pain I have ever endured in this life. It is as present as the day she took her first breath, and through it all I am so grateful for that first breath. But, it is there. That lingering heaviness, that feeling that something is not right.

Sophie’s existence is a miracle, her doctors do not understand how she is still alive. But. she is!

I must keep going, I must continue to move forward. These amazing moments are the ones that help keep me going, the ones that help me move past the fear that can easily over power me. Through it all there is hope and that will never end, how could it.?

She said momma, she ran to me with her arms ready to embrace me; she looked into my eyes and said “momma”, she knew who I was, she wanted me and made sure I knew it. She said it, her first real “mamma”.

Despite ALL the complications, despite the grim diagnosis’ Sophie wants me to know she is there, learning everyday and becoming the person she was meant to be. Only because that is who she was meant to be without the diagnosis’s, the disabilities and the limitations. This was who God intended her to be and that is enough.

 

 

 

Why I hate the R-word

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Yesterday another CdC mom posted about the use of the R-word on facebook, after I commented on her post several times I bowed out of the stream because, well….I will not fuel ignorance. I refuse to allow myself to argue with ignorant close minded individuals who cannot see passed what they want to see. The more I try to educate people the more disappointed I am in the direction our society is headed in.

I HATE the words Retard or Retarded, the same way I HATE the words faggot or Niger; those are words that are used with malice and hate. We live in an era with so much technological advancement but despite our many advances as a human race we have yet reach to the most important achievements in ourselves. Acceptance,  Peace, Understanding and Love. It starts within ourselves, we must love ourselves not who we think we are or the material things in our lives. Instead what we see are people obsessed with vanity, huge ego’s, negativity and hate, and believe it or not it all ties together. Sadly this is what our younger generation is learning and this is why it is so important to educate people, especially the younger generation.

The R-word is a hateful, sad word. It has been and is still being used as a way to describe someone who is worth less than another, that is wrong. We are all worth the same, a human life and there is no price tag on that. We are ALL different, there are no two people exactly alike in the world, think about how boring the world would be if we were all the same.

People defend the use of the word and say it’s use is no big deal that it is taken out of context, that is only what they tell themselves so that they can continue to use it and feel no remorse for the lives they may affect.

ANY word used in a hateful, demeaning and insulting manner is WRONG.  Words matter, a simple hello or goodbye could change a person’s life forever, and I will never understand why people think it is ok to use negative words like the R-word. The R-word is a word that has been used to separate, discriminate and demean others since it was first originated. Saying it in a joke or to a friend does not erase the essence of the word, the word is tainted by the affected lives that follow it, by the pain it has caused and continues to cause and the lives of those forced to live in the shadows because of it.

I was never a fan of that word even before I became the mother of a child with Special Needs, but being on the receiving end of the word is more heartbreaking than people imagine. It is difficult for many to understand because they do not know the pain that follows the word. It can be devastating and is devastating.

We must choose not to use hate, we must choose to want to make a difference. This is our world, these are our children. What are we teaching our younger generation if we remain in silence if we do not find the strength to speak up, and teach wrong from right.

We all have a choice between good and bad, we are all taught this as children as we are all taught that actions have consequences, a word can be just as devastating as an action. The choice is yours but think about where our civilization will be in thirty years if no one speaks up, or stands up to make a change, to do what is right.

 End the Word 2013

The R-Word and why it’s wrong

 

Follow up with the Pediatrician

Today was Sophie’s follow-up with her awesome Pediatrician Dr. Nieves whom we absolutely LOVE! It had been three months, yes 3 MONTHS since I had to take her! That is huge for us, while she has been sick thanks to my stock of medications and equipment no doctor visit necessary.

I have been attempting to take Sophie out without her wheel chair so that she can learn to behave without it, then again she is only four I may be asking for way too much. She seemed fine just a little excited when we arrived, she’s back to twirling her strings so that had her preoccupied for a bit. When we went back to the waiting room the well waiting area was full so naturally I took her to where there was no one and not so loud but you could still hear the loud banging and rattling of the other children playing. It was REALLY loud. And then BOOM. It all became too much for her, she started yelling and pinching and wanting to bit. She begins to laugh nervously and if I don’t calm her it will end in tears and frustration. Thank goodness we were called back to the room before I had to walk out. She immediately calmed once it was quiet but it was still very bright but she handled it well.

Sophie weighs 29lbs, she is just under the 5th percentile for weight on a typical growth chart which for CdC is good because she IS on the chart, finally. Dr. Nieves was happy with her condition, despite being full of phlegm her airways sounded good. We went over diet, meds, education etc as we do every visit. Have I told you I love this doctor, she is amazing! Loves my girl and is always a step ahead thinking of how far my girl will go.

Dr. Nieves was not pleased with the fact that Sophie only get 2 hours of instruction and an hour of speech a week from the school system but I’m over it. We talked about pushing for more therapy but honestly I’m over it for right now. I just don’t have the energy to deal with people coming and going and searching for the right one. I’m not going to fight for such little time. Sophie learns from us everyday, she interacts with all of us at home and is learning everyday. The teacher she does have is awesome with her and Sophie knows it’s time to work when she arrives, they have a great connection. Sophie also has a great OT who works with her an hour a week and an ST. I’m happy with what we have, it’s better than nothing.

Dr. Nieves is very happy with Sophie’s progress both with her health and her cognitive gains. She has by far surpassed the expectations of all the medical professionals that are treating or have treated her as well as mine. The only suggestion was to add some nutritional packets to her almond milk for added calories so we keep her weight up. Oh and of course to keep her in a bubble but that’s nothing new.

Give her the best but she cannot be a part of the outside world. That’s not hard……(can you sense my sarcasm?). I know she only wants to make sure my girl lives and has the best quality of life and I love her for that!

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How far she has come.

With each passing day I am more amazed at the progress Sophie is making, she is a fighter. Her will to learn and live are truly inspiring, it makes everything else seem so insignificant.

We were told Sophie would not survive past the age of 2, she will be 5 next month.

We were told if she lived she would be in a vegetative state and would never learn. Today with a heart full of love, hope and gratitude I will tell you how far she has come.

Despite ALL of her medical issues she is thriving and happy. She smiles everyday, her laughter is contagious and her beautiful innocence is unlike anything you could have imagined to have the opportunity to experience. There is this immense peace that surrounds her.

Sophie CAN walk! She can run and has begun to jump. She is so active it is truly an amazing sight.

Sophie CAN eat, she LOVES food. She may not yet have the ability to chew solid foods but this does not stop her from enjoying what she loves. From oatmeal to rice and beans to ice cream she enjoys it all. I used to think I would never see the day where Sophie would no longer be a slave to Pediasure and the blender, I was so wrong.

Sophie CAN love. She loves all those who surround her, she can give kisses, hugs and loves to cuddle. And she knows when someone is sad, especially me. There is no hiding your emotions from her, she is highly intuitive and extremely sensitive to the energies around her.

Sophie CAN make choices. If you give her options of different foods or movies she will chose what she wants without direction from someone else.

Sophie CAN communicate. It may not be with words but she gets her needs across and has no problem expressing herself. Just because she cannot speak does not mean she does not have words, her words come from signs or expressions and utilmately all the words we, her family have for her.

Sophie CAN participate. Sophie loves to be around people; while her health prevents her from truly experiencing the world when she is given the opportunity she gives it her all. And even sensory processing disorder won’t stop her.

Sophie Comprehends. The doctors expected her development to not flourish but that did not stop her, Sophie understands. She understands more than what I would have ever imagined she would have the ability to comprehend.

If you tell her let’s go bye bye, she will try to undress herself because she knows she has to change her pajamas before she leaves the house.  And before you tell her that its bath time be certain you are ready because she will not wait, she will be in the bathtub before you know what hit you. And be forewarned at dinner time you cannot pass her up, when she sees the kids sit down at the table she runs to her chair and makes sure we know she is ready to eat. She knows what goes on in her surroundings and chooses to react when she is ready.

As I look back at the last five years I feel so very blessed but I also feel sad that for a short time I never thought she would ever come this far.

Sophie’s siblings have always loved and accepted her just as she is, she is just one of them. Their love has been essential to her determination and strength, they complete her just as she completes them. We cannot dwell on the reality that Sophie does not develop like most children her age because then we would miss out of who SHE is. I like to say Sophie is hardwired differently, we can’t all be the same after all.

Sophie has come a long way in these last almost five years of life. She is what love is made of. We are so proud of her, more than words can describe. And while she may not be like everyone else, she is uniquely perfect just the way she is.  The world would be a boring place if we were all the same!

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We chose to return

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Last week in North Carolina after we were done with all the hospital visits we had a few hours to kill before our flight back to Florida. We had hoped to visit Raeford to see some friends but there was not enough time since it’s a two-hour drive each way. We did however make it to my husbands old job which was only half the time in travel. My husband had a great job while we lived there, his employer was truly great with him and us and my husband was happy there.

It was important to him that we make the effort to stop by and say hello to his old boss and co-workers, we are happy we did. They were all so happy to see each other, it was a nice experience.

On our way back to the airport we found ourselves reflecting. We talked about the move and what we liked and didn’t like about our move there. I loved it in North Carolina, the weather is beautiful and it’s just so peaceful. What I missed was the business of the city and all my people here in Florida, my friends and family. It wasn’t until that drive that we had really discussed our experience there.

And while we went over it all he asked me if I thought we would have adjusted to life in North Carolina and without thinking I replied with the purest of clarity, I simply told him, “yes, of course we could have but we chose not to”. And he just looked at me and grinned. It was more than just about us, our three eldest children were not happy there, they were very sad there. I had my heart and mind-set on trying to stay there until I experienced several anxiety attacks that made me long to be back in Florida. I felt overwhelmed and alone, the long drives to the doctor and having to coordinate care for my other children on these days took a toll on me too. My children did not want to be there and my husband never wanted to leave Florida to begin with. When I felt it was best for us all to make the move back to Florida we discussed it and my husband and I made the decision to return to Florida together. I do not regret that decision.

In the end it was a great experience, we had a great team of doctors there and we got answers we had been searching for regarding Sophie’s health. We made new friends and experienced a quiet life for a bit. The school system was great with Sophie and we were very comfortable in a really big house. But even all of that was not enough to make us want to stay. Today I am grateful for the experience and to be able to look back and say at least we tried it.

We came back to Florida with a new appreciation for everything in our lives. Our friends, family and all the things we work so hard for. The experience gave us a new perspective and appreciation for life in general. Because we made the choice to return to Florida as a family it helped us find balance within our family unit and has helped us grow closer. For that I am truly grateful.

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Trip to UNC

This past week we made a trip to UNC-Chapel Hill in North Carolina to meet with the Pulmonologist who diagnosed Sophie with PCD, Primary Ciliary Dyskenisia.  We agreed to take part in a current study which includes PCD so we made a trip up there for testing and for the doctor to examine Sophie.

PCD is usually a disease that is passed down genetically but there are new links between this disease and certain genetic syndromes, Cri du Chat Syndrome is one of those genetic syndromes. I was initially told that Sophie had PCD but not from her 5p- deletion and it was also ruled out that the link was not genetic. That left alot of questions. So when I was contacted by UNC about bringing Sophie back for more testing I was confused thinking they wanted to  repeat the testing for PCD because they suspected a possible misdiagnosis. I was wrong.

In other patients with PCD the link between the chromosome 5 deletion, aka Cri du Chat Syndrome and PCD were apparent. In Sophie’s case it is proving harder to map out but the doctor is certain Sophie’s PCD was caused by her 5p- deletion. Sophie is just making the doctors work harder to map out exactly where and what area is responsible for causing PCD and what type of PCD defect she has, she is making them (the doctors, researchers) think out of the box as she does everyone else.

There is no doubt Sophie has PCD, this was verified by the doctor. There was also a nitrous oxide test that was performed wich came back consistent with PCD as they expected. Once I discussed it all with the doctor I was relieved, not because my daughter has this disease but because if she did not then we would be back to square one with no answers and no direction for treatment. Despite the devastating diagnosis of PCD I am truly grateful that I know what we are dealing with.

The doctor was pleased with her state of health considering everything she has to deal with. The Dr. who performed her lung biopsy last year and who was also involved in ruling out PCD said Sophie looked like a different child. That was huge, she said Sophie looked so healthy and lively. Compared to her deteriorated state last year when she had her sinus surgery she truly is a different child.

Thanks to this PCD diagnosis Sophie’s doctors were able to come up with a treatment plan that seems to be working. Sophie is now on Rocephin via her nasal irrigator everyday, she receives two or more treatments with her compression vest everyday; along with 2-6 breathing treatments and her other meds and vitamins.

We have to basically keep Sophie in a bubble because every little bit of exposure is critical to her health, this one day trip to NC resulted in a respiratory infection that she is till fighting off.

Sophie was born for more than just being my daughter, her presence in this world has been felt. She has changed lives, starting with mine. Sophie has opened the door to help Science in many ways and Dr. Leigh the Pulmonoligst who found her PCD said that she would be a super star and be the key to opening the door to understanding and maybe even possible treatment options for others in the future.

My Sophie. She is my shining star! She is my inspiration. My miracle baby!

(Sophie at the Hotel, she loves elevators. She is so independent now when it comes to walking) When you look at her, and interact with her you know with no doubt she is perfected by the hand of God. Beautiful innocence!

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