Tuesday, December 31, 2013

Happy New Year...

Well not quite yet, but very soon!

As I reflect on 2013, there are a lot of things that I am thankful for.

Simply stated …. LIFE……

The life of my loved ones and the life of my daughter.

As the last minutes of 2013 tick away, I am able to say that 2013 was a great year for me.

I was able to celebrate my daughters First birthday, take her on her first trip, and as of today it's been 3 weeks since she has needed the support of her ventilator.  Nobody but GOD is able to bless her with those accomplishments.

I saw people lose mothers, fathers, grandparents, and children.. God spared me just one more day with my family… with my daughter.  I am always mindful that those shoes could easily be placed on my feet which is why I'm always grateful for the time I have been given.

Today is not about a clean house, black eyed peas, money in your pocket, or clean clothes. Honestly I spend every New Years Eve doing the same thing; trying to clean and wash the year away.

Today & tomorrow is about Life, Love, Memories, and Family and I am fortunate enough to have all of those things this New Years Eve.

I pray that I can grow closer to the Lord in 2014, that my faith will grow and my obedience to GOD's word will manifest itself in my life.

I'm grateful for triumphs big and small, and the hardships along the way. I'm thankful for the lessons learned and the wisdom I've gained this year.

I pray that GOD blesses each person who visits this blog and that his favor extends to your families and friends.

To those who lost a parent, grandparent and child this year, I pray for peace in your heart.


Happy New Year!!!



I have put together a quick 30 second recap of Mylah's 2013… She is definitely my HERO!

video

Sunday, November 10, 2013

I Want...

to feel normal… Sometimes I just do. NO I don't have any regrets about Mylah or any decision I've made regarding her life and/or care, it's just hard.

Some people will never get it, and I actually know that no one knows how I feel daily unless you've walked this same path.

When I started on this journey I wasn't sure how much our life would change. I knew that it would be a dramatic change from what we were used to, but there's nothing to prepare you for THIS…

I'll explain… A fellow Trisomy mom, Lori whose son Kingston has a Trisomy 13 recently posted this to her Facebook page.  I knew exactly what she meant and how she felt.
 Here are some excerpts from that post…she gave me permission to post this. Thank you Lori!


Lately, I have started to feel myself becoming resentful of my life...resentful that I have to be home by 4pm every day and can't leave with the boys to go anywhere after that. Not being able to go to church or dinner at friends or family's houses...just normal every day things. I feel like a 15 1/2 yr old who is so close to their drivers license but just can't drive yet...I feel "grounded" every day and if I need something for dinner I better make sure I have it before my nurse leaves or I will have to make a meal plan change. The list can go on and on...but basically I have been overwhelmed with feeling like my life that I use to live has been robbed from me...my freedom had been taken away and I just couldn't swallow it anymore.

Well, yesterday I hit my breaking point...or dare we say my awakening? I DECIDED TO START LIVING LIFE!!!

Now I will be honest and say that if you find yourself in my position I am in no way saying "my way" is the answer. People have tried to tell me for years to just drive with Kingstonor to just get him out and he would be fine...that THAT is what they have to do. The last thing anyone in this position wants to hear is that the way they are doing things is wrong. No one could tell me what to do. I had to come to this epiphany on MY own...it's like a journey of self discovery. However, now that I am here, I am finally at such peace after nearly 3yrs of "torture" and "solitary confinement", that I had to share my experience - hoping it will help someone reading this.

On Monday, Zachary fought to hold back the tears as he said, "Mom, you never go outside with us...can we just go to the park?" It broke my heart and his words plagued my mind constantly into the next day...I just couldn't shake his words echoing over and over through my head. I knew the way we had been "living" had been robbing me and the boys of life but I don't think I realized how deeply to the core it had rocked the kids. This was my "aha moment".

Yesterday, after we pulled in the driveway I told the boys, "How would you like to go to the park today?" They both were elated but confused because they knew our Nurse was leaving and also knew Kingston was at home. As I continued to unfold our "new plan" on living life again, expressions of "pure relief" and indescribable joy came over their faces. It was all the confirmation I needed that this new path on our journey was right for all of us.

I loaded all three of my boys up, all by myself (which takes a while with all of Kingston's gear) and headed off to our local park! We had the time of our life and stayed for over TWO HOURS!! We stayed long enough that their Dad was even able to join us at the park for some play time on his way home after work! Kingston had his first ride down a slide and me and my boys all got to experience it together!! Best of all, I captured it on video so we can watch it forever! It's funny because as I unhooked Kingston from all of his equipment to carry him all the way up to the tall twisty slide, I noticed all the parents around us staring like "what on earth is she doing?" "Is she crazy?" Lol...All while Kingston is laughing hysterically in delight!! I mean who can blame him? What 3 yr old doesn't want to take a trip down the slide? As I sat down with k to prepare for his first trip down, I took one more quick glance out at the people in the park to soak in the moment - all of them staring at the 4 of us waiting to see what would happen I guess?! What they witnessed was more powerful than they could ever imagine. Little did they know the prison we had been living in for nearly THREE years!! I can only hope that the loud squeals of excitement made some kind of impression on them!

On your journey in life you may get a lot of stares or people looking at you in disapproval but regardless of how they react, YOU have to choose what is best for YOU and YOUR FAMILY and do what you feel like God is speaking to your heart. It may not be easy in the flesh but if it's what you are suppose to do, God will not only help you do it but you will feel better than ever!

Long sorry short, I made the decision yesterday to re-claim my life and live the life as a Mother of three that I had always longed for...It was just our season...it was time. I don't regret the way we have chosen to do things up until now, but rather I am glad that once I felt like we needed to take a new road on this journey, I took it and didn't look back!! I didn't doubt myself or second guess it, I just jumped back into life and man, does it feel good!!! Wow!! My entire thought process has changed!! No more feeling grounded!! Now it doesn't mean I'm going to be stupid and risk Kingston's health in in-climate weather or expose him to knowingly sick people HOWEVER, I came to the realization that what I thought was helping Kingston stay alive was actually slowly "killing" all of us...even him. The joy I saw on my boy's faces yesterday cannot even be put into words. I feel liberated...I feel set free...I feel like I got cut loose early from a death sentence...I feel like I just got my life back and gave my kids a second chance at their childhood! Sigh...I had truly forgotten how good it felt to be free...I had forgotten what the fall evening air smelt like...all the little things you take for granted until you don't have them anymore. I had forgotten what it felt like to live. Most importantly though, I forgot how good it felt to be ME: a Mom of THREE!!"


As I read her post I wanted to cry because I knew the feeling she spoke about. I felt like she read my mind. I know there are a number of Trisomy mothers & mothers of special needs children who feel the same way. I didn't generalize the thought to all mothers because honestly, mothers of a healthy child don't go through the motions we Trisomy mothers go through so there is no comparison in my opinion. Not to dismiss any other mothers, it's just we have have to think and worry about things other mothers don't have to. Like oxygen saturations, breathing patterns, weight gain, medications, physician appts., numerous surgeries etc. 

Some days I just want to have a conversation that doesn't center around Trisomy 18. I just want to go somewhere with my daughter by myself and not need the "other mandatory adult" the hospital advised I must travel with at all times.  Don't get me wrong, I am HIGHLY thankful for Mylahs current condition. She is doing great, so well that we have gone a few places without her ventilator. It feels good to just grab one less piece of equipment, but I still desire to take my daughter out by myself, grab a bite to eat or go shopping like I see so many other mother's do. 

I got my first taste of feeling normal again on my birthday when Mylah slept with me for the first time since being home from her heart surgery last year. It was a great feeling! That is the feeling I desire. 

Once Mylah started tolerating sleeping off the vent, I had made up in my mind that she and I would go somewhere. I wasn't sure where that place would be, but I would pack up my baby in the car & I wouldn't feel guilty about it. I had butterflies for sure and then I saw the Facebook post that reassured me that I would be ok. It validated my feelings and it felt so good to know that I wasn't alone in struggling with wanting to feel normal again. 


Thursday, October 3, 2013

Another Anniversary….

Yesterday, October 2, 2013 marked one year since we have been home from the hospital.

No cake or party, but still it's something to celebrate.  I was able to reflect on so much yesterday. When we entered the doors of U of M CS Mott Children's hospital on July 5, 2012 I knew our lives would change, but I never expected the road to be as rough as it was.

Our stay at the hospital opened my mind to so many things and other perspectives that I never considered & I gained an abundance of knowledge.

It's funny because so many things; music, seasons, movies, & food, take me back to last summer. For example, Nas, (the rapper for those who don't know who he is) released an album last summer and there are a few songs that remind me of driving around Ann Arbor, trying to get away from those walls for a moment to clear my head. When certain songs play, they take me back to when my sister and I would ride down Washentaw Ave. trying to gain some sense of normalcy by shopping or going out to eat. I first saw the Hunger Games in Mylah's hospital room, so that movie will forever remind me of summer 2012, and Domino pizza thanks to Tiffany, who introduced us to their pan pizza & chocolate molten lava cakes.

I remember logging that my assigned chore was "complete" at the Ronald McDonald house each night, Toya and I deciding who would be staying with Mylah and who would go across the street to stay at the Ronald McDonald House for the night.  I remember feeling bad for Juwan and missing him because he was staying at home all by himself. Although we only lived about 30 minutes away, it felt like we were hundreds of miles away from each other.

One night, Toya & I went home to stay because we had arranged a girls day at Painting With a Twist with some of our family & friends.  We had been so used to staying at the hospital, so I looked forward to sleeping in my own bed and being back at home. The lighting in the house seemed to be dim and there was no happiness in it at all, just silence, an awkward silence.  The house was clean and the only thing on the kitchen counter was Mylah's bottle warmer and her bottle station. Both hadn't been used in months. We were sitting at the table talking and Toya began to cry. She said that she didn't like the feeling the house had; it felt like there was no life, it felt sad.  She was right. There wasn't any hope, or love in the house. It just didn't feel right sitting there trying to prepare for a fun day when Mylah was 30 minutes away in the hospital separated from her family.  It was at that moment that I felt even more sad for Juwan because I knew that feeling was how he felt every day as he stayed home alone.  When we talked that night, I brought up the feeling of the house, he said that all he wanted to do was to be able to make Mylah a bottle. That's all he wanted. Something so simple, meant so much.

I have a new appreciation for so much because of our Summer 2012 journey. You never know how much things mean or are needed until you find yourself or a loved one in need.
Handicap accessibility is so important to me; parking spaces, automatic doors, wider door openings were so over my head last year, but now they are a necessity to our lifestyle.
Vinegar has a new value to me LOL .. yes.. Vinegar & I thank GOD everyday for a double stroller.

I can't believe a year has gone by so fast. It really does feel like we just were discharged from the hospital. Those 89 days were life changing for me. The Mina that left home on July 5, 2012 wasn't the same Mina that returned on October 2, 2012.  She was much more wiser, stronger, understanding, and grateful than before.

A piece of my heart still remains in Ann Arbor. Each time we go for an appointment, I look at the faces of the parents, the children, the grandparents and I am taken back in time. Each family that walks through those doors enter with one thing in their hearts… HOPE…  HOPE for good news, HOPE for a cure, HOPE for a diagnosis, HOPE for a healthy baby, HOPE for things to work in their favor, HOPE that THIS is the last time.  I just say a prayer for those who remain, who don't get to come home, those who don't get the good news, those who can't get a diagnosis, & those who enter but don't get the opportunity to leave with that same HOPE they entered with.

As always I thank everyone for their love & support. I make it a point to always let our supporters know that we love them and appreciate everything.

This journey has shown me what I am made of, it has helped me realize I was made for this story.  I'm thankful for every step that we've taken and am always looking forward to the next chapter.


Such a Big Girl!!!! 18 months! 

Having fun… I think :) 


Monday, September 30, 2013

Last Day!!!!!

Tomorrow is the last day for the impact statements. I appreciate those who have sent me theirs already!

Please help us make an impact!!!

Here is the link to the video I put together when I put the call out for this project.

See my August 28th blog post as well. 

Shaniperk@gmail.com is where you can send the statements. Thank you!!!!

Link to the video

Wednesday, September 25, 2013

Mylah Update!

Today we went to yet another vent clinic appointment to see how Mylah is progressing.
The team felt that Mylah was doing very well so they implemented another vent wean.

Mylah is now able to nap on pressure support from the vent. The breaths from the vent will be turned off.  If she does well for 2 weeks, we can then allow her to nap fully without any support from the vent!  If she is able to tolerate the latter wean, then we will get another wean from the vent team via phone(we won't have to wait for our next appt. in 3 months)

This is EXCITING news!!!!! I am so happy with her progress.  Things are definitely moving in the right direction.  We are getting closer and closer to no vent and it's so funny because although I'm very happy, it's a scary feeling at the same time, but the team has agreed that we will just gradually move forward. Not too fast so that Mylah and us are able to adjust.

We started the coconut oil therapy a few weeks ago and I have already noticed changes in her behavior. She is using her voice a lot more; especially at 2am. She is VERY loud and vocal about something we just haven't had a chance to figure out what her demands are LOL.
She is also trying to roll over but gets stuck before she can fully roll.

Mylah has been doing very well. We are having issues with constipation due to a new formula, but we are working through natural ways to combat it.

She also turned 18 months yesterday! On the 24th of each month I just take time to reflect on our journey. I look at pictures, read my old blog posts, and I listen to old voice memos that I have of various encounters we've had with doctors regarding Mylah's health. I'm always brought to tears looking back on the memories of our journey.  It humbles me tremendously and reminds me of where we have come from. I know that we are truly blessed by GODs grace and mercy.


We are also still working on the project for Mylahs Impact Book. This is the collection of stories, pictures and statements that we will take back to the hospital where Mylah was born. We are praying that this book will move the hospital to change their protocol in dealing with Trisomy 18 children.  We have witnessed firsthand what prayer, faith, love, and hope can do.  We are praying, hoping, and remaining faithful that we can make a difference in the hospital policy.

If you wish to participate, please send your statement on how Mylah's journey has affected your life and based on what the hospital told us, how would you like to see the policies changed.

The statements can be sent to Shaniperk@gmail.com by October 1st. I have received 5 so far so I would like to say "Thank You" to the people who have taken the time to write these and send them to me.

Finally, in talking to a friend about the impact project she mentioned that she no longer reads the blog because she thought Mylah was "okay". I would like people to know that this blog serves as my public diary. My thoughts and feelings I share with all who follow this journey with us. School, Work, and LIFE keeps me from blogging as much as I did before, but this blog is still very much active. We still have more great news, milestones, and birthdays to celebrate so please don't leave us!


Wednesday, August 28, 2013

This Journey…..

started out very uncertain.  On October 19, 2011 my whole life changed. Some would argue that it changed for the worse but that's their opinion.  We've seen more good days than bad days, & like the song says…. I won't complain.

We were basically guaranteed that Mylah wouldn't be here today.  We were made to think that she wasn't worth fighting for. I'm so glad that I know a GOD who answers prayers because doctors don't know everything.

I've contemplated since Mylah's birth, how I planned to follow up with the hospital about this wonderful little girl who is LIVING with Trisomy 18.  I've had many ideas. A few weeks ago, while at work the idea came to me.

We never traveled this journey alone. We had GOD, our families, friends, and made new friends who have supported us along the way.  I'm always told how Mylahs journey has affected the lives of our many supporters. So, I decided that we would show the hospital how this life, that was deemed so worthless is valued by many more people than just 2 parents who refused to take "no" for an answer.

YOU, yes, YOU can take part in this memorable moment.

See the video below and I hope you participate.
video


I really do think that this could make a huge impact on the hospital's policy. 

If you wish to send me your statement, you can send it to

Shaniperk@gmail.com

I will accept statements until October 1, 2013. 

Thank you to all who will participate with us! 


Monday, August 26, 2013

Chicago….

was the destination for Mylah's 1st trip.

We visited The Windy City this weekend and everything was great. I didn't plan too much because I wasn't sure how Mylah would be away from home, but she had a blast.  She spent the weekend smiling, laughing, talking and just enjoying being away from home.

It was like she knew that she was on her 1st trip.

Friday we walked the Magnificent Mile. We did some shopping for Mylah and walked down Michigan Ave.  I wanted to go to the observatory in the John Hancock building but someone didn't want to go because it was too far up. LOL.

Saturday, we walked to the Navy Pier and spent Mylah's 17 month birthday on Lake Michigan. Sunny, warm and not a cloud in the sky. The view was BEAUTIFUL, and Mylah just chilled out in her cool sunglasses.

One of my dear friends came to visit us and she spent some quality time with Mylah.
I love when I can have conversations about LIFE & the person just gets me. I thank her for our conversation this weekend. I was able to express some things that I haven't expressed to anyone and I love her for that comfort.

Mylah has been doing pretty good. Aside from something going on with her eyes, she's been doing great. We go to the vent clinic next month to see what the next step; if any, will be. Praying for good news.

In the next few days I will be blogging about a project that is very near and dear to my heart. I hope all who know about our story will participate.

Dad checking the diaper for a surprise

Her very own bed….


Mylah and Mommy at dinner

"How far up is it again?"

I LOVE city lights at night

Mylah's HOme away from home

We travel with everything!


Sleeping Beauty...

CHilling!

THe ROnald McDonald House in Chicago-Just passing by 

Navy Pier

Mylah & Mommy at the Navy Pier

Mylah & Daddy's first time on a boat…  
CHICAGO

Mylah waving to everybody- LOL

Mylah paying homage to Chicago's own Michael Jordan… LOL

Auntie Wynter gets a smile


Mylah sleeping on the Magnificent Mile


Friday, July 5, 2013

Heart-versary

July 7,2012.

Will forever be a significant date in my life. 

As we drove up I-96 to M-14 to U of M hospital I wasn't really sure what the future held. The decision to opt for heart surgery for our 7lb, 3 month old daughter wasn't an easy one. Sure, we knew we wanted her to have the best chance at life but heart surgery was a life changing decision. 

As we handed her off to the anesthesia team, I knew she was in good hands. So small, but so big. So weak, yet so strong. It was the hardest decision I made as a mother. 

Dr. Richard Ohye-Mylah's Surgeon
Waiting for the word seemed like an eternity.  Our family & friends were there for comfort but my nerves didn't understand.  I'd never been so nervous & scared as I was that day.

Seeing my daughter the first time afterwards was tough. She was so strong. She gave me strength. I was overwhelmed by the sight of her small frame among all the machines. It was a feeling I will never forget. 
My  1st time seeing Mylah after surgery




















As I reflect on this day last year I have so much to be thankful for. We are truly blessed. Mylah did what the other hospital said she wouldn't do. She survived! By Gods grace & covering she survived. Sure, this journey hasn't gone as planned but every trial & tribulation we've endured has made us all stronger. 

Mylah has shown so many what living, loving, Faith, & Hope is. 

I'm so thankful for all our family & friends who waited with us last year, I'm grateful for those who came to visit Mylah during her stay and I'm overjoyed that GOD has continued to show his mercy on our family. 

Today one year ago, Mylah got another chance at life. She was given a chance to do what she was put on this earth to do. Give HOPE & show that God has the final say.



All of Mylah's machines


Mylah in the PCTU

HOPE

Mylah's HEART-VERSARY cake


GO BLUE


Our Family-One Year Later

Mommy & Daddy Love her!


Nothing but GOD!

Tuesday, June 25, 2013

Walk With Me.....

When we got the diagnosis of Trisomy 18 in October 2011, it was the most life altering experience I'd ever been faced with. In our meeting with the doctors, geneticist, & social worker we were never given any HOPE that Mylah would survive.

We left the meeting with a listing of funeral homes & cemeteries who would arrange services for free. I was told to expect a call from a local hospice resource that would help us "plan" for Mylahs death.  I remember not wanting the help because I just knew their job would be to drill death into my head & I wanted no part of speaking death unto the life that lived inside me. 

Walk With Me proved to be the opposite of what I expected it would be. The team were the 1st medical professionals who told us to celebrate Mylah's LIFE no matter how long or short it would be. They gave me so much encouragement. They believed in Mylah's abilities from the beginning. They stressed to me that Trisomy 18 was different for every child. Yes, they wanted her to be as comfortable as possible but they encouraged us to continue to fight for our daughter, & they never made us feel guilty for wanting unbiased care for our daughter.

When we saw that one hospital shut the door on Mylahs options for assistance, they told us not to continue wasting time & to proceed to a place where Mylah might be able to get the care she needed. 

Our Walk With ME team has done just that...they've traveled this journey with us. Sometimes walking behind us, many times walking right by our sides but they've always been there walking....

We've cried together, prayed together & rejoiced together. They have shared in our sad moments, our times of despair & uncertainty, our days filled with worry, & the days filled with joy. 

The team has become our extended family & Mylah has gained 4 aunts along the way. 

Walk With ME has proved to be a positive, supportive, caring resource that has played a pivotal role in the LIFE of our daughter. 

On October 18, 2013 I am honored to serve as one of the Honorary Co-Chairs for their annual charity event which helps raise money for this wonderful program. 

Sharing our story with others is something that I'm looking forward to. 

In the coming months I will be posting information on how you may be able to help us raise money for this wonderful program because I know other families would benefit from their services. 

Sunday, June 16, 2013

Happy Father's Day!!!

Today we honor the men in our lives. The Fathers, Grandfathers, Uncles, Brothers, Coaches, Pastors, all the men who have taken on the role and helped influence and raise a child.

We HONOR the men who have created children and have both gladly & readily accepted responsibility for their blessings.

We HONOR the men who for whatever have no biological children of their own, but have accepted the role of Father in the life of a child who has become theirs.

We HONOR the men who have bravely stood up in the life of a child & passed down wisdom that will help that child make it in this world.

On THIS day, we simply say …….
                                                              THANK YOU!


I have been privileged to never have a day when I was fatherless. My father is 1st Love, My 1st HERO, My Teacher, My Friend, My Protector, My Confidante, My Provider, My EVERYTHING.

My Father had the influence of his Grandfather to help shape his life. My Father could have easily walked away from his responsibilities as a dad, but he didn't. Instead he began to shape the life that I would live.
I am a 100% Daddy's Girl. No matter how hold I get, I will still feel 5 years old when I'm with my him. I thank my dad for all he's done for me & my sisters. For all his mistakes, accomplishments, decisions, hard work, sacrifices.. Everything.

My dad is the best grandfather than Mylah could have. He's loving & caring and yes, he's wrapped around her finger.

I would never be able to thank my father enough for all he's done for me.

Juwan didn't have his father growing up. He didn't know him, He never saw him, didn't even know his name until a few years ago. He too, had a grandfather that helped shape him into the man he is today.

Sometimes when men lack the connection with their birth fathers there is pain, heartache, suffering, resentment, and anger. These feelings can manifest in a number of ways and for some men it can change the entire dynamic of their lives. Most times it's not for the better. Many people repeat what they are taught, & if a boy has experienced disappointment since the womb and he lacks a male figure in his life to help guide and show him how a real man should be, most times it will result in another fatherless child.

My husband and father could have easily been eaten up by the streets. At some point in their life they decided not to be like their fathers.

Being a mother to a child with special needs isn't easy so I know being a father to one isn't as well. It's not an easy situation to deal with or adjust to.

I thank my husband for staying with me. Us. He could have easily taken the easy way out.

I thank him for not being like the man who helped create him.
I admire him for the father that he is.
I know he probably thinks about the things that he may never get to do, but it doesn't stop him from being the best father to Mylah that he can be.

I know that she's a Daddy's Girl just like her mother because I see the joy in her face when he is with her. I hear the words (that she thinks she's pronouncing) when he cradles her in his arms.  I see the love in her big eyes when she stares up at him;  no doctor can convince me that my daughter doesn't know her DADDY.

The love that they share is a unique one. It's built on a foundation of strength & courage.

I know that they are made for each other.

So to my own DAD & my husband, the father of my child I say…….. I love you & Thank you! & I know if Mylah could say it she would say the same thing too!

The link below is a dedication to my husband, Mylah's Father Juwan.

I believe in capturing life's moments in photos. It's the one opportunity you have to freeze time to remember later. I know that he doesn't have any pictures of his own father, so I want to make sure he has an abundance of photographic memories of our daughter.

No matter what the future may hold, I know that you will AlWAYS be her Father and I know she will ALWAYS be Your JOY.

Happy 2nd Father's Day

Wednesday, June 5, 2013

Update & Apologies!

I am SO very sorry for not posting in such a long time.

I actually have a couple "draft" posts that I have lingering which obviously never got finished.

There has been so much going on in my life that I have failed to make the time to do what I loved doing and that is update my blog.  Days pass and I tell myself that I need to blog, but when I grab my computer I don't click the link to update. 

My last post was about the death of 2 other Trisomy babies and honestly I was emotionally and mentally drained. This journey as I've always stated isn't easy and it can be a toll on a person.  You will go through a million emotions from one minute to the next. The hours in a day seem to fly by with each minute, second that passes a new emotion.

I had been having a rough time emotionally because I'd been feeling very guilty about some of the decisions I made with my life; past and present.

In talking to different people I have come to realize that the sense of guilt isn't just a Trisomy mother thing, it's a universal feeling that many mothers get from time to time.

I feel like I'm in a race against time to accomplish some things that I've set as goals for myself and I never want my daughter to feel like I don't care about her. Honestly, the things I'm trying to do are for her. I want to make sure she has the best life I am capable of giving her; so I sacrifice at the moment. Sometimes though in those "moments" feelings of guilt & failure sneak up on me, so I wasn't really dedicated to blogging like I was previously.

I realize that there are those who don't use social media so this blog is the space where you were able to keep up with Mylah's progress. Please accept my sincerest apologies. I appreciate all the support that I've received through the blog and I will commit to updating at least once a week.

This blog served as my open diary and it did help in getting those emotions out in the open which helped lift the weight I felt I carried at times.

What have we been up to?
A lot!

Mylah is talking so much!! Especially at night. She waits until about 9:30 then she just starts rattling on & on.  It's one of the sweetest sounds I have ever heard.

She's 14 months now! almost 14 lbs and 26 inches long. She's all legs.

Her last cardiology appointment went really well. She is off her Sildenafil and her pulmonary hypertension is not an issue. We had started to wean her months ago. The cardiology team doesn't want to see her for 6 months. Which is great! One medication down 5 to go!

Wednesday we went to our vent clinic appointment. Mylah was previously getting 36 breaths per minute (bpm) from the machine which was weaned down to 20 bpm in March. Her respiratory therapist has since weaned her down to 16 bpm and she is allowed to be totally free from the machine for 1-2 hours a day twice a day. If she tolerates this well, we've been advised to increase each week. This was HUGE news for us! I was honestly happy with her progress and went to the appointment not expecting any changes as drastic as what we received. She seems to be adjusting to the changes quite well.

Mylah's look is also changing. She's starting to look more like a toddler than a baby. It's bittersweet.
Often times you hear mothers say "oh I wish they could stay this little forever". I've actually had a piece of that "forever". Although she's approaching 15 months, she's the size of a baby that's about 5 months.  I grown accustomed to her small size, to see her changing into this "little girl" makes me sad, but its happiness too.  She's growing; still slowly, but that's all that matters.

We've figured out that Mylah isn't really a people person and doesn't like to be out for long periods of time. Her Diva-ness starts to show after about 2 hours out. She just will have to get used to being on the go because that's what her summer will be like.  We missed most of the summer last year in the hospital so we will be making up this year!


Mylah is doing better than ever. She's growing, maturing, developing her own attitude, and yes still defying odds every day. 



Mylah before shopping…




Mylah AFTER shopping.. LOL

What do you think? 



& she did just that…..

I guess we did huh Mylah? 

Definitely GOD's Little Blessing all for us!

Such a BIG Girl! 

Mother's Day 2013! 

Sleeping Beauty

EKG time… 

She most certainly is! 

Mommy's little angel

I LOVE some of her facial expressions!

A.D.I.D.A.S.

Those hands are ALWAYS busy… 

So excited to head to her 8:30 am vent clinc appointment… Can't you tell? 

Where's that baby face at???? 

It's time for BED Mylah.. not playing!

Mylah… June 2013 14 months Trisomy 18 SuperKid! 

Thank you for continuing to follow our journey. Thank you for taking a few moments out of your busy day to check up on our daughter.

We love & appreciate you!