Sunday, December 14, 2014

Pomp & Circumstance

When my youngest sister Toya, went to Tennessee to attend college I made the decision to re-enroll in college with the plan to get my degree before her (I couldn't let my little sister get her degree before me).  It was a hard decision because my mind was so scattered. I didn't really know what I wanted to pursue. I loved to cook, I was honing on my baking, I enjoyed working with graphics on the computer, and I wanted to open a small restaurant.

Juwan was always a fan of the University of Michigan football team. A DIE HARD FAN! I decided to enroll at the University of Michigan-Dearborn. I attended classes part time and usually took the summer months off because my plans were not clear. I entered into their School of Business trying to maneuver the various courses that really didn't interest me.

When I found out that I was pregnant I was enrolled in 3 classes. I had a new goal to focus on immediately.  After the confirmation of Mylahs diagnosis, my drive changed. I wasn't interested in school anymore. My focus was not on my classes, especially the one that wasn't really interesting. I failed it and passed the other 2. The goal of obtaining my degree before my sister wasn't fulfilled and she was prepping for her graduation as we prepared to welcome Mylah into our world.

I took the semester off after Mylah's birth and once we came home with her I once again felt a purpose to continue with my education.  I decided to re-enroll for summer classes. As we prayed on what heart surgery we would decide on for Mylah, I was also trying to focus on passing my classes.
As Mylah was in the hospital recovering from heart surgery and her unplanned tracheotomy, some days I would leave the hospital the night before to go home so I could go to work and then go to class afterwards and my younger sister the graduate, would stay with her niece in Ann Arbor.

Many nights during those rides home it was the thought of Mylah's uncertain future that gave me strength and reminded me of what the ultimate goal was; a better life for her. After we brought Mylah home from Mott Hospital in October 2012, I knew that I needed to speed up the process. I could no longer move at the snails pace that had gotten me to where I was. I needed to suck it up, buckle down and take as many classes as I could at a time in order to hurry up and finish; no matter the sacrifice.  I wasn't getting any younger and I needed to be able to free up my time to spend with my daughter. I met with my counselor to get a final plan together and once again I had a new goal.

After discussing my plans with Juwan I enrolled in classes full time and decided that I would not take any breaks, I needed to be done in a year so I had to attend every semester including summer. It was hard and when you are a procrastinator it makes things even more difficult, but I tried to convince myself that I work good under pressure. Every semester, during finals I would find myself burning the midnight oil trying to finish a paper or study 4-5 chapters for a deadline or test that was usually 12 hours away.  I had to adjust my schedule at work in order to be able to attend the classes that I needed in order for this 1 year plan to work.

I found myself also being put in situations where I could share Mylah's story. Each time there was an assignment or presentation, I found a way to incorporate Mylah into it. Not only was I being educated, I was also advocating for Mylah and educating about Trisomy 18 along the way.  Sometimes I wasn't sure of how our story would be received, but once my marketing professor, assured me that a product idea I presented at our mock Shark Tank presentation was a great idea, I knew that I needed to continue sharing our story whenever I could.

Ever been so close to something you could feel it? taste it? smell it?? That's how I felt earlier this year. I had one of my last meetings with my counselors last fall. We outlined all the classes I needed to take and she wrote on my goal sheet "graduation Dec 2014".... Graduation? "wow" I thought.
I never thought I would see those words. Now it was basically etched in stone, I just needed to deliver on my end of the bargain.

Then Mylah had a seizure one night in April 2014, a week before finals, just days before I was scheduled to present in class along with 3 others. My team assured me that I would be ok and that they would handle things for me and even talked to my professor and they all agreed that I should remain at the hospital with Mylah and I would get the group grade.... We got an A. I never used Mylah or any of her medical issues as an excuse to get out of something and I never expected and/or wanted anyone to feel sorry for me because of what I might have been going through. My teammate(s) assured me that what they were doing for me was what they would expect anyone to do, have compassion and understanding. I was brought to tears by what they did for me.

I emailed my counselor at least once every 2 months to just have confirmation that I was on the right track and that there were no surprises. Then I received a email this summer that said I could apply to graduate! I did and for the next few weeks I would receive other communications and instructions regarding graduation, cap & gown, degree frames, graduation fair all the things that lead up to the walk across the stage.

I downloaded an app for graduation countdown on my phone as I entered my last semester of classes. Almost every week I would text the number of days til graduation to my classmate followed my some type of inspirational sentence; "we are almost there", "getting closer", "1 week left".

I ordered 2 dresses, tried to decide on whether I would order a few announcements or pictures for myself for memories sake because for months I had been operating in secrecy.  I was excited but upset, ashamed, and depressed that I was completing undergraduate studies at the age of 34. I felt like a failure even though this was an accomplishment. I couldn't really be proud of myself. I had a number of people rooting for me and encouraging me, but I couldn't do the same.... With each positive encouragement from a friend or family member, there was always the bad girl on my shoulder putting me down with something negative. "You're 34 and just getting your Bachelors degree", "It took you so long to do what others do in 4 years",  "You are 34, come on there's really nothing to celebrate", "People your age have their Masters degree". I felt like a failure for being the oldest child, but the last to get my degree. I was supposed to be the example for the other 2. They were supposed to follow in my footsteps. I was supposed to be someone who they could look up to & say "I want to be like my big sister".

When I tried on my cap Wednesday night, I looked in the bathroom mirror and smiled. I made it. Further than I ever thought possible. I would be getting a degree with my name on it to display however I saw fit. I crossed the tassel, once, twice...a third time. I had not seen myself in a cap since June 1998.  It looked good on me. I liked the person I saw in the mirror. She had been through so much in the years since she was last in a cap and gown; did many things that she wasn't proud of, made lots of foolish mistakes, cried a lot of tears, felt a nice amount of pain but in the end she could smile.  She made some great decisions, accomplished things she deserved to be proud of, stood in the face of adversity and faced it head on, fought a lot of fights, cried many tears of joy and now she was here.....

I saw the maize & blue curtains.... the bright lights... the smiles on the faces of mothers, fathers, daughters, sisters, & grandparents. Each person full of excitement. We all traveled a journey seperately and we had arrived at our final destination. It was our moment, this was our day. "You can be happy, you deserve to be proud, some people never make it this far and you did it.... it doesn't matter how long it took you"... YOU DID IT!

Some people in their congratulatory expressions often say "Girl, I don't know how you did it"....

Faith, Family, & Friends........

That's how I did it.... I couldn't have made it alone.....


















Friday, December 5, 2014

CNN iReport

This morning when I checked my Facebook feed I saw that CNN was doing a piece on Raising A Child With Special Needs.  They solicited families to share their own stories so of course I obliged.

Here is the link to my submission. Maybe we will get lucky and CNN may contact us....wishful thinking! Lol but as Mylahs Advocate and mother, I know that one of the ways I can help her is by bringing awareness to her condition. 

Here is the link for you to view 

Wednesday, December 3, 2014

Parenting Handbook

Let's be honest, there isn't a book in the world that could capture all the aspects of parenting. No matter how hard physicians, therapists, and specialists claim they have all the answers to every parents dilemma we all know that life throws you curve balls that you can never be prepared for.

For a psychology class assignment, we were tasked with reading a book and presenting key aspects of the book to our class. Of course I chose a book that discussed special needs children. 
What I found was a 8 chapter, 115 page book that was full of my very thoughts! 

Jonathan Singer, provided important information to parents in his book, The Special Needs Parenting Handbook. His book provides tips on how to manage life with a special needs child and the various experiences parents of special needs children are sure to encounter. I highly recommend this book to not just parents with special needs children, but parents and individuals in general. I think that many can learn so much from this book. 

After my presentation in class a classmate expressed that he had enjoyed my presentation. I gave him my blog address and thought to myself "you better update it then!".   

I know that I have been absent since earlier this year, but the motivation to blog took a backseat. 

There has been so much going on in our family, blogging no longer was a priority. 

We celebrated Mylah's 2nd year of life and her 2nd Heart-versary this summer (July 5th). It was a beautiful gathering of our family and friends. The first year of Mylah's life I decided that I wanted her to have a summer party outdoors, so we made that happen. It was a luau theme complete with colorful lei's, a beach cake, and of course my favorite the Kona Ice Truck! We also collected new toys to donate to CS Mott Hospital

Mylahs seizures seemed to resolve with the medications she received after her April seizure and we were happy. 

She began a wean of her seizure medications in late August, but her body didn't seem to agree with the decision and 4-5 weeks into the wean she began having seizures multiple times a week. The months of September and October were extremely hard for us. We were in and out of the ER more times than I could count. The seizures were different than the ones she had before and now included cyanosis and apnea spells that resulted in us having to breathe for her for as long as an hour! At one point I was so upset at the number of seizures she was experiencing, I was convinced that she didn't have much longer to live because of the reoccurring seizures and blue episodes.   

Very scary to say the least! 

She was even life flighted from a local hospital to CS Mott Children's Hospital in Ann Arbor. 

Those 2 months were extremely frustrating for our family. The seizures just seemed to take over our lives.  I was so happy that Mylah didn't require her pulse-ox  (I think of it as a tether), but it proved to be a lifesaver. We had to dust it off and now it's used every day, and she has to sleep with it on.  Sometimes the seizures started while she was sleeping and the pulse ox alerted me to trouble in those late hours; a not so good alarm clock, but thankful nonetheless. 

My frustrations at that time and still present is the lack of active listening by physicians.  I wish that doctors understood that there are parents who know the ins and outs of their child's disorder and could probably teach them a thing or two.  

What was extremely frustrating was miscommunication between multiple physicians, medical tests not performed thoroughly, and feeling that I wasn't being heard by doctors. 
This adds so much stress to an already stressful situation.  
There were a few times where I had to use my "not so inside voice" to get my point across and it's not something that I like to do. 

We spent 5 days in the hospital for EEG monitoring in October and of course Mylah went from having seizures 2 times a week to 1 seizure that lasted "40 seconds" according to the physicians in the hospital.  It was kind of weird that we were hoping she would have a seizure, but we needed answers. We still have questions. 

Once again we have adjusted to this new normal of ours which now includes seizures. We know what we should be aware of and what to do; we don't panic nearly as much as we used to. 

So I press on....... There is no other choice. 

We are planning Christmas card pictures, and even bought the Elf on The Shelf! (I think I'm more excited than anyone else). 

Mylah has been well. Her personality has changed a little, she gets irritable quickly but we just attribute that to her being so spoiled *wink*. 

We celebrated her 3rd Thanksgiving this year! 

Yes!               THIRD!

Remember when doctors said she would never make it?!  She's growing well and her physicians like the pattern her growth is taking. UP!  She's moved on to 18-24 month clothing and a size 4 shoe! (I wear an 11 so I knew she would have a nice size foot).  I'm happy! 

The Special Needs Parenting Handbook indicates that you should Celebrate Progress, Not Perfection & Be Prepared, Don't Get Scared! 

It's all progress in my book and now we are better prepared to handle these situations. 

There are still days that are challenging but it's nothing prayer can't solve. 

I'm extremely grateful to those who continue to provide support, words of encouragement, and pray on our behalf.  We love you and will never be able to thank you enough. 

Here are some pictures to update you! 




Mylah and her Godfather

Mylah's Toy Box

Sweet Nothings in Wyandotte, MI never disappoints!

Whose ready to celebrate? 



Our little Hula Girl!

Mylah with the Toys her party guests donated!



Catching up on her beauty sleep

EEG monitoring! a girl's gotta have pink shoes right?



Crying.. hoping the therapist will stop! NOPE

Sleeping... Hoping the therapist will stop... NOPE

Pretty Smile... 

Sweet Dreams I guess! 

Celebrating Mommy's 34th birthday!

Our little glow worm... 

All bundled up! 

Sunday, October 5, 2014

Updates coming soon...

So sorry for my absence.....

I will be updating the blog soon.

Sunday, April 20, 2014

If By Chance We Should Ever Meet Again.....

This is a continuation of "In The Blink Of An Eye" 

As I rode in the front of this sky blue ambulance, I cried. The tears fell continously. How did I go from trying to find the right shoes, the perfect shirt, the best shade of aqua trying to coordinate her Easter outfit about 4 hours prior, to riding in the front of an ambulance praying for the life of my child?

My legs were cramped under her portable suction machine and her diaper bag; both filled with extra supplies that the hospital may have needed.  We pulled up to the hospital and I could see my family waiting for our arrival. They greeted us like a medical team ready for action. I hopped out and moved to the side. I felt the stare, that awkward feeling you get when you feel someone is looking at you. A great big panda bear with a smile gazed at me. We locked eyes, his smile met my frown. Panda One, the ambulance for kids.  This panda is supposed to be soothing I suppose, but I'm aching.  Hurting because on the inside of this ambulance that is adorned with this large smiling Panda is my child and this was not a situation that warranted a smile.

Mylah emerged from the ambulance, strapped to the gurney and she was briskly wheeled into the hospital emergency doors, up the elevator, 4th floor, ICU.

We were welcomed by a team of nurses, who were waiting on her arrival.  They moved quickly about the room. Nurses, Respiratory Therapists, more nurses. They moved rapidly. The transfer was complete. We settled into the room, unsure how long this stay would be. Hopefully short, but I began to mentally prepare for hospital living again.

As I sat there hoping, praying for my child I saw her. A face that looked so familiar. I couldn't be sure it was her.  Memories began to play in my head. I went back, back to where we started. Back to where this journey began.

I stared at her from across the room and tried to convince myself that it wasn't her, but I knew it was. I never forget a face, and I could never forget the face of someone who touched my life in such a profound way. She walked in and out the room a few times, before I gathered up the courage to attempt to confirm what I suspected.

"Excuse me, did you use to work at (insert name of my birthing hospital)?"
"Yes" she replied as her eyes gave me a confused look.
My arm extended towards Mylah, as she lie in the hospital bed. "You gave her a bath when she was born"
Her eyes now wide open, her mouth formed a look of shock. She darted to Mylah's bedside and grabbed her small foot, she looked at the finely printed name on the tag around her ankle.

"Oh my goodness, It's her!" she yelled, almost as if she quickly forgot we were in the ICU.

I blogged in the days after Mylah's birth and about my experience. Specifically regarding the nurse who bathed Mylah, and afterwards who expressed that it was a honor to participate in her life. That encounter though brief, left a mark on my world. I always wondered what happened to all of the nurses who participated in Mylah's birth specifically the one who bathed her. I later found out her name was Lori, but had no way of contacting her about how much her words impacted me that day. After she expressed such thoughtful words to me I never saw her again; until now.

She told me that she wondered about us since Mylah's birth and always wanted to know how Mylah was doing. She remembered that I created the blog, but couldn't find it because she was unsure about the spelling of Mylah's name. She contacted her old coworkers, but none could provide her with the information she needed. Who knew a seizure would bring us back together.

In that moment, at a time when my heart was so sad for Mylah's current condition, it was also happy. I would get the opportunity to tell Lori how much I appreciated what she did and said that day.  I wanted her to know that I never forgot her expression of gratitude. There were many things that happened that day and some of the memories I wanted to file in the archive section of my brain, but every now & then her words would play back in my mind and bring a smile to my face.

As I expressed my gratitude that I held for over 2 years, my tears began to fall from  and I could see her emotions gather in the wells of her eyes.  She remembered everything. The negativity, doubt, the judgement.
"She is the reason I left" she said. "Remember the doctors said she wasn't supposed to live, she wasn't gonna make it" It was a statement she definitely didn't have to remind me about. I had heard it from the beginning. It was just nice to know that not every person in that room on March 24, 2012 felt the same way as those doctors. I was glad that she was able to see that she deserved to be elsewhere.

She was happy to know that Mylah had been doing so well up unto that present moment. We embraced and she walked out and she took with her the happiness that had distracted me for the moment.

Now I was forced back into the present to deal with the issue at hand. Trying to figure out what was wrong with my daughter. Why suddenly had things gone so wrong? I couldn't be too sure, but Mylah was as stable as she could be for the moment. Intermittent seizures ran through her body, just like the ones she had before, not like the one that brought us here. I rested in a chair on the other side of her room and watched as they placed her on a ventilator, just like the ventilator that was scheduled to be picked up from our home on the upcoming Tuesday.

She had made so much progress, we couldn't go back to where we had come from. I hoped that we wouldn't be there for long.

Thursday, April 10, 2014

In The Blink Of An Eye...

things could change. Literally.  Everything was fine on Saturday; we shopped, she played, we shopped some more, she ate, she napped, & she played again.  I noticed she was a little hot, but she's always sweating, it's what she does. I laid her in her crib, covered her bare legs & feet, so she wouldn't be cold and off to sleep she went.

There is nothing like being startled from your sleep by the sound of someone calling your name in a concerning tone.  I jumped up, because that's what I've learned to do and what I saw next changed the course of my days to come.  I felt like my feet were stuck to the floor, I couldn't move fast enough, my mind went blank, I couldn't remember numbers or names, my hands shook. "What's the number to 911" literally I asked the question because I didn't know, couldn't recall.

Her face was blue, grey; eyes fixated towards her eyelids, arms extended straight, and her body rocked... Back and forth. A slow, rhythmic motion. I knew something wasn't right. "Feel her chest" my sister said, I placed my hand on the heart. That strong little heart that was fixed almost 2 years ago and it felt as though it was about to explode out of her chest. The beating rate wasn't normal It was too fast. Heart attack?  I couldn't be sure but I knew she needed help.

Toya began to bag her, I pulled out my cell but I knew that might delay help. I searched for the house phone (for this very reason is why I won't cut it off) it wasn't on the charger. Suddenly, Juwan handed me the phone. He'd already dialed 911, the connection was quick, the operator understood what I needed. I tried to remain calm, so that I wouldn't give out the wrong info. The training I got from the vent team at U of M kicked in. I remembered, "tell them you have a trach baby, it's critical information". Toya continued to bag, giving out directions the whole time. Juwan and I ran back and forth through the house trying to find what was needed. She was the calming voice I needed. I followed her instructions, when my body didn't do what my brain was thinking.

I called my parents, put on some clothes, gathered emergency supplies and waited for help to come. They arrived, Mylah wasn't any better. One held her head, the other her lower half.  They walked in unison, sideways. They guided her frail, seizing body out the front door. Loaded her onto the stretcher,  into the back of the EMS. Under bright lights there she was seizing, biting down, eyes wide open.  In the back of the EMS I began to pray. I asked God to allow her more time.

Mylah has had seizures before but NEVER like this.

She arrived at the hospital, was given some medication, it didn't help. Another dose, still nothing, the 3rd time was a charm.  I stood in the corner of that room and watched them as they worked on my 14lb. child. I tried to give as much information as they needed. Hoping for answers. She had a fever of 106, her heart rate got above 200.

The nurses in the room noticed the little pink painted toenails. I painted them for her 2nd birthday pictures. The pictures I edited but hadn't printed or mailed. I kept telling myself that I'll get to it tomorrow, and I stood in that emergency room as they worked on my baby wondering what if tomorrow doesn't come?  I felt bad for putting it off.

She stopped seizing, I answered lots of questions. Some of them 3 or 4 times. The nurse said they cut her onesie off and asked if I wanted it. "No", I replied. I wanted no memory of this moment. I already had the image of her helpless seizing body in my mind, I didn't need a material reminder.  She needed to be transported to a different hospital.  She was stabilizing, the medicine was helping.

As soon as she was getting ready for transport she started to seize again. More medicine was given. She was loaded into another EMS; one for kids, babies, sick babies that need help and she needed help.

I prayed she would get the help she needed.....

It's been very hard for me to get my thoughts together. It's so much going on and I'm pretty frustrated at times. I just ask that you continue to pray for Mylah. Pray for answers and clarity. Pray for a full recovery. I will continue this tomorrow. Thank you!

Monday, March 24, 2014

TWO!!!!!!!!!!!!


Mylah is officially 2!!!!!!!!!    I am so overwhelmed by the emotions that today brings. These 2 years have definitely flown by! It seems like just a few months ago I was planning for her 1st birthday!.  She is starting to look more and more like a toddler now and it's so weird because she is just in 12 month clothing.   This year has brought a lot of changes and it's been a year of adjustments. We no longer rely on the ventilator to provide Mylah with breaths and she now sports a nice purple speaking valve on the end of her trach.

It's so funny to see her changing and growing. Her little personality just shines through.  Today we celebrated with family the BIG celebration will come at a later date.  I just love watching her grow and I'm blessed to be able to see her do new things. GOD has truly been good to us. Yesterday in church, I broke down crying because of the memories. When I looked back over the last 2 years, I am so blessed to be traveling this journey with her. I'm so thankful for each day we have with each other and I look forward to creating more memories with her.

Thank you to all who called, sent a text message, email, or posted birthday wishes on social media!

Mylah thanks you very much!!!







Monday, February 17, 2014

Music To My Ears….

Have you ever looked at a person or noticed a individual daily, and when you finally hear the sound of their voice thought to yourself "that is not how I expected he/she to sound"

Now I know if you are someone who has followed our journey you may be recall reading about us hearing Mylah's voice.  Yes, Mylah made noises in the past when she was attached to her ventilator, but those sounds have been heard lesser since she is no longer dependent on the ventilator.  

As I previously explained in prior posts, due to her graduation from the vent she would be eligible for a speaking valve to attach to her trach. This speaking valve would allow her to be able to be heard and she would be able to hear herself.  Well today was that day. Of course I didn't get too far ahead of myself, and I understood that not getting the speaking valve was a slight possibility.  It's a behavior thats been learned throughout this process… 

Juwan & Toya took her to her appt and while I was in class I got the most inspiring text message. 


Of course fate would have it that my 6:00 pm class was cancelled due to the anticipated snow storm that's headed our way. I rushed home naturally, eager to hear that sweet voice.  Mylah had a different agenda however. She wouldn't make any sounds no matter how hard we tried to make her. 

Then a few hours later I heard the sweetest sound my ears have been longing for….. 


video




Now you should know this turned into a family event, via Facetime so that everyone could witness this beautiful little raspy voice…. 

I've never been so happy to hear a cry in my life! And you can tell that at a certain point Mylah was just listening to the sound of her own voice.  Toya kept reminding her that it was ok to just make the sounds that she didn't really need to cry! LOL! 

I know some may not grasp the significance of this moment, but I hope it shows you to appreciate the small feats and the things that are so "natural" to your everyday life, because they are momentous occasions to parents like me. 

Praising GOD for favor, blessings, and forward movement in our journey! 

All you have to do is BELIEVE!



Monday, February 10, 2014

#Rakweek

Today marks the first day of Random Acts of Kindness Week! For all my social media gurus it's known as #Rakweek. This is a designated week which gives you an opportunity to pay it forward. I love the Pay It Forward concept. If you have ever had a chance or been the recipient of a kind act then you know what I mean. 

Sometimes we can get so caught up in our own issues, problems, and stressful situations that we don't take the opportunity to make someone else smile.    I'm not suggesting trying to put an end to  world hunger but just something small and as simple as a smile can make a difference in someone's day. 

I know that sometimes a smile from a stranger just makes my day. 

I will be participating in #Rakweek and I hope you may consider as well!! 

Visit www.randomactsofkindness.org for more information 

Tuesday, January 14, 2014

Blog, Blog, Blog….

I keep telling myself that I need to, sohere I sit on a Monday night gathering all the information that I want to share with you.

Great things have been happening in 2014 so far, we've been getting good news and we are only13 days in. 

Mylah has been off of her vent for a month! Yes, one full month. She's been sleeping off the vent just fine and thankfully we haven't had any issues. She'd been doing so well on her weans that we just felt she was ready to be off fully. 

She went for her follow up appointment with her cardiologist on the 3rd and her next appointment is…………….. Jan 9, 2015!!!!!! I knew the appointment would go great because her last one was positive, I didn't expect a full year for the next follow up visit.  When I got the text (Juwan and my sister took her), I couldn't do anything but cry. Tears of joy, certainly, but so many memories played back in my mind at that moment, as I sat at my desk I went back in time.  I recounted conversations but what I heard was so vivid.  

"There's no need for heart surgery because it won't make things better" 

But the truth is it made everything better. Heart surgery was a hard thing to decide on, especially when the decision we made, had to be changed; but it was for the BETTER.   Those days in the hospital, eventually got us to better days, better nights, better holidays, better birthdays… It made everything BETTER. 

Had we allowed the physicians to make the choice for us, who knows if Mylah would be here right now.  

This past Thursday, we went to our quarterly vent clinic appointment.  I was kind of skeptical about this appointment only because one thing was likely to have a domino effect.  The team was surprised that she was off the vent fully (we tend to do things on our own). So the vent is no more! She is off completely!  When we follow up with the Ear, Nose and Throat specialist (for her trach) they will evaluate her for a speaking valve. The valve is a one way valve, so Miss Mylah must learn to breathe out her nose/mouth. This speaking valve will allow her to make noises and we will be able to hear her voice much like we used to when she was on the ventilator.   If she does well with that the next step is to cap her trach. Once she has worn the cap during all waking hours and the doctors are satisfied with her progress, she will have another bronchoscopy to assess her airway, which is the last step before they take it out! Possibly by May/June she may be trach free. I won't get ahead of myself, but it was great news to hear of the possibility of being trach free!!  

Feelings of fear and joy were running through my mind at the same time. In addition to all of this, we have started to wean Mylah from her diuretics and in late Feb she may be on only 1-2 medications.   

I left the appointment with a headache. As I drove us back home, my mind raced on the things that needed to happen in my life in order to prepare our family for these possible changes and the affects it may have on our everyday life.  As we rode down the highway, I went back to all the memories I had of our visits to U of M which lead up to our 89 day stay in the Summer of 2012.   That highway holds so many of the talks I had with myself, the many thoughts that pierced my mind along the way, and the pavement caught the many tears of joy and uncertainty that flew out my window along the way.  That road is also symbolic of our journey.   When we first started taking the 30 minute ride, each trip felt as if it got longer each time. On days when we didn't get the news we hoped for, the trip seemed like an eternity.   Home seemed so far away sometimes. Now, it feels like the ride is as quick as the blink of an eye. The journey has gotten much easier since we first started.  I know it's not over, but there were times when  I thought the hard days were here to stay.

The recent appointments just confirmed that hard times don't last always. I'm so happy for where we are right now.  There are some things that we struggle with but they aren't things that can't be solved with a little work.  Now my concentration is on what will we do if she is decanulated this year? (trach removed). That means possibly school for Mylah (if she qualifies), I find myself just going through the motions in my head; School???? for a child that was deemed unworthy..WOW…

There are no words to express my true innermost feelings. I am happy and thankful, but there are so many more feelings that I can't describe. I have to remind myself to just take it one day at a time, one thing at a time.

It's a complicated when you have to deprogram yourself and allow new feelings to enter. I have to allow myself to feel ok with losing the ventilator; what was once a life saving device and security blanket is no longer needed. It has provided Mylah with what she needed at the time and it helped her grow and get stronger. Ironically, I am kind of sad to bid it farewell. The day the ventilator is actually removed from our home, will be another significant date added to our journey. I remember being told that Mylah would probably need the support of the vent for the rest of her life. As much as I knew and believed that there would come a time when she wouldn't need it, I relied on it as well. It was my reassurance that she was getting the proper number of breaths her little body needed. As she was weaned, we depended on the pulse oximeter to let us know if she was having a problem (She never did).

Then we started to allow her to sleep like a normal baby. With no machines & no monitors but my nerves were on edge at all times. Sometimes I would enter her room and she would just be too still for my comfort. I would slightly shake her to get the movement that would ease my mind. She would look up at me like I was nuts and slowly drift back off to sleep.   Honestly, I still do this "check" on occasion, but I've had to try and talk myself out of thinking the worse and just trusting that she is fine.

Right before Christmas, I made the decision that Mylah deserved to be as normal as possible. She no longer needed to be watched 24/7 so there was no need to keep her in our living room. We made the decision to move her back to her actual room; the room I designed for her before I even knew her, the room the holds her name on the wall, the room she slept in before she left for her heart surgery. Her first night in her room she slept like a baby who missed that room.  

I know that GOD has been the writer, producer, and director of all that has happened in our life. There is no other way to explain the things that I've witnessed in the past 2 years. It is because of GOD that my daughter is almost 2 months away from turning 2! It is because of HIM that my daughter has been able to maintain her own breathing for over a month. With each accomplishment, doctors and nurses are so stunned and shocked by her progress, all I can do is say "thank you Lord, you've been good to us" and it's because HE has.