We continue to breath.... to live without our princess.

Our lives seemed so "normal".  It was anything but normal, but to us it was imperfect perfection.  At 6:03am on June 21st, 2012 - our lives stopped in an instant.  I had just finished rubbing lavender scented lotion on the bottoms of her tiny feet.  I will never forget the smell, the touch of her tiny fingers.  Brushing my teeth so early in the morning will always be a reminder of her final breaths.  My brother gently spoke to me, telling me I needed to come back to her bed.  "It was time."  Our family was close, but scattered throughout the "house".  It was just before 6 and I crawled back up onto her bed.  I spoke in whispers to her, I held her legs and caressed her feet.  Everyone gathered.  The sounds of the ocean crashing onto the shore from her noise maker seemed to soften, the only sounds I heard was my sweet little princess taking her last breath.  My head was spinning, life ended.  Or has it just begun?

Life over the past sixteen and half months has been mostly in a fog.  Moments of clarity are few and far between.  However, we continue to live.  Our continuous heartache is a painful reminder of the fight she so courageously fought.  A piece of her baton passed on to each of us as we continue her fight against rare childhood disorders and our hope of victory against Mitochondrial disease.  

Our own lives moving forward will never be easy.  We will always grieve the loss of our princess.  We will never be the same.  Our lives will never be "normal"... but Mylee's spirit continues to light our way.  Through her research fund at TGen foundation, we are hopeful of new and upcoming treatment options for children like Mylee who courageously fight each day.  For more information about TGen and Mylee's research fund, please visit www.tgenfoundation.org or make a donation directly to Mylee's research fund, www.myleesfund.org.

Never Give Up, 

Sara

Random thoughts...

I have sat down many times in the past few weeks to update this blog and ended up having to put it away because my head was full of fog, much like it is at the moment but I decided to just start writing and I would re-read to see what I came up with before posting the written thoughts.

So here it is already midway through the summer and our Atlanta trip is now 1 day away. We leave very early on Monday morning. Mylee's appointment with Dr. K is on Wednesday. I am hopeful we have a smooth flight with our two little ones. So much has been going on it is sometimes difficult to figure out how to organize my thoughts let along all the medical information that seems to now be a daily task. Here are just a few items on the list of discussion points:

• Seizures activity and unusual episodes



• Extreme Fatiguing



• Increase in Behaviors



• CO2 Rentention



• IVIG therapy



• new brain changes; lesions, atrophy

Could these all the be the result of one major issue, like a seizure disorder or the result from the lack of wearing her Bi-PAP machine because of central sleep apnea. All results of a bigger picture which is progression of this ugly disease. We are hopeful we will get answers and perhaps helpful instructions as to how we better handle each day with Mylee. Our greatest goal and outlook for Mylee is to be able to have the best quality at life for her.

We have many procedures and upcoming appointments when we return from Atlanta too. Mylee is scheduled for a video EEG the first week in August. Our local children's hospital has just expanded and with the new improved wing to hospital more technology has been made available to children in our local area. We recently ran into some problems with having a procedure done here in Arizona and thought we would need to have a VER/ERG (retinal degeneration study) done in southern California. However, our local hospital is going to start doing these. We are in a holding pattern until this can be scheduled. Mylee will also pick out a manual wheelchair at the wheel-chair clinic the end of July.

It is too hot here in Arizona to play outside. I have become creative with ideas for the two girls to pass our time during these hot days. And I am thankful most days are consumed with therapies and appointments. In our downtime though we have had rock concerts, painted with passion and mastered our somersaults

School will be starting soon for the girls and we look forward to new chapters starting in each of their lives as they start a new school year.

As we continue in our journey, another little journey has ended. We are saddened by the passing of little princess Eithene. She graciously earned her angel wings yesterday morning. She fought an amazing battle. She will forever remain in our hearts. Mitochondrial disease awareness and the fight to find a cure has become a mission in my life. I ask you to join my mission and help bring a cure to this disease! ♥

xoxo

Finding a happy balance ♥

Realities really seem to be a struggle lately and even writing those first few words really aren't accurate because the struggles have been on going for almost a year! It must be due to her outgrowing the baby years and into a child. Why am I having such a hard time with the reality of having a child with disabilities?! Is it my faith that I believe a miracle could happen? Is it the HOPE that one day she could be healed on this earth? Bottom line is that my child is disabled and cognitively severely delayed!! I need to find a happy balance not only for me, but for my family. It seems like I must have posted something similar to this in the recent past. Maybe it is because I feel like I am waking up on groundhog day everyday, same routines with the same appointments, week after week after week. Ugh, okay off my soapbox now...

We are gearing up for our Atlanta trip to our appointment with Mylee's geneticist. We still have a lot to prepare for. It is difficult traveling with someone who has more equipment and other items than most. For instance, we need to pack a single tent to enclose Mylee in at night since she is too big for a pack n play crib yet we need to keep her confined to a small space due to her being a fall risk. It really gives new meaning to packing everything including the kitchen sink! I will need to touch base with her geneticist office to make sure they have all new records from out last local admission and to find out if they have received her results from the spinal tap. Unfortunately, we will not have the results from a scheduled ERG/VER that we were hoping to have completed before our trip.

We had a little snag in our attempt to have a procedure done in a local hospital that we are not too familiar with. Currently, only one hospital in Arizona conducts this procedure for pediatric patients. An active investigation is being conducted on the technician who seemed to be under the influence of something. We stopped the procedure not only due to this unfortunate circumstance but because Mylee was also being very uncooperative and somewhat combative. We thought we were going to be transported to UCLA to have the procedure done under sedation, however our local Children's hospital will be able to conduct the procedure later in the summer. Mylee will also be scheduled for another VEEG. We are checking to see if she is having seizures. Mylee's disease seems to have progressed since her last MRI showing both continued progression of atrophy in her cerebellum and now delayed mylination in the cerebral hemispheres. This makes her more susceptible of having seizures. We are anxious to discuss these findings as well with her geneticist to see if she could help us better understand what is happening with Mylee.

Finding a happy balance in everyday life is difficult, finding a happy balance in our life is almost impossible! I have a child who wants to walk, who wants to eat, who tries to keep up with her little sister but struggles in every way, shape and form. It honestly is heartbreaking! So we do what we can and make the best of every situation. Mylee has been working on power chair training for about 3 months now and we have to the conclusion that we need to hold off with continuing training with her chair. We will discuss getting a manual chair for Mylee and use the manual chair for her independence. And hopefully in a year or two we can try again with the power chair. We have seen a lot of neurological changes in Mylee and we will remain HOPEful that she can overcome these obstacles that continue to be thrown in her direction. ♥


xoxo

Differences yet the SAME!! ♥

I am always trying to remain positive because I have come to realize that if I put myself into the situation where I am constantly depressed and always looking at the cup that is half empty, well then I couldn't quite possibly be the best mommy I have promised to be to my two wonderful little princesses!! ♥

This year especially has been the most trying; Mylee is 4 (almost 5) and Khloe is 2 1/2 going on 15! I say the most difficult because it is the reality that Mylee has disabilities and it will constantly be a struggle to know that she may never be able to do the things every little girl experiences!! For her it seems to be a norm, I and even WE I think struggle with this daily!

The differences are clear cut; physically Mylee can not ambulate on her own! That means no dancing freely, no swimming on her own, not even doing the most simple things like walking or using the restroom on her own. And down the road; no bathing on her own, brushing her teeth on her own, or even playing on her own because of risks to falling, choking on objects she may place into her mouth, or the fact that she can't communicate with words and therefore someone would need to be with her at all times to meet her needs!


And yet we still honestly experience the SAME emotions HE has intended for us to have. The emotion of LOVE for one another and compassion when someone needs and extra cuddle or hug. The emotion of happiness and free spirit when I watch the girls play together, even when Khloe is happily giving her sister a helping hand. The joy of dancing together with music, even if Mylee has to use a piece of furniture to prop herself up. The joy in her face and the happiness I see from both girls is priceless. I have even been able to see recently the two of them playfully wrestling with one another on the floor; sometimes it gets a little rough and usually one ends up crying, but overall the friendship I see between the two of them is becoming stronger and stronger. ♥

I know we will always see Differences in our journey but I am confident the bond we continue to mold strong and firm will keep our family protected and our continued faith unbroken!

xoxo

Hope and peace

I went to gymnastics this morning with my youngest daughter Khloe and enjoy being able to do things with her one on one! Normally we have the gym to ourselves but since school is out for the summer the gym is full with gymnastic camps! It is fun to see all the little future gymnast perform, in fact it's funny to watch Khloe mimic some of the big kids! It also tore at my heart strings too because it brought me back to reality that Mylee will probably never be able to enjoy those types of activities on her own... I did however meet with a very special lady at the gym who teaches special classes at the gym for kids will varying disabilities. The classes are private and therefore will cost double in price to what Khloe's class costs but we will rearrange our monthly finances in order to make this happen for our princess! Mylee will be a part of the gymnastics world and I can't wait to buy her her first leotard!

We have been going through quite a rough patch the past month or so. My lee's behaviors are all over the place and we believe we may have part of our solution with the current medication to stabilize her mood. I don't believe it is the answer to everything we are seeing but it has made a pretty good change for the better at least for the time being! We haven't really seen any significant episodes like we saw a few weeks ago. And as strange as this is a little disappointing it also makes us very concerned! You see it is quite possible what we saw was not seizures and instead a stroke-like episode. No one can really be sure and we have been told to just keep monitoring. We are to return to ER when something occurs or if we see the behaviors increase to the height the physician saw first hand in her office a few weeks ago when Mylee was admitted.

We finally received a date for an appointment to see a new neurologist at Children's hospital. We will meet with Dr. J on June 16th. We are anxious to meet with her because we are fearful Mylee may be at a new baseline but also because we have heard wonderful things about her. She may be able to help Mylee not only with her neurological piece but the new issues with behaviors and Mylee's sleep patterns and sleep apnea issues which all go hand in hand!

Mylee will also be seen by her opthomologist on Monday to check for decline in her vision. We have been noticing her crawling into the walls and into stationary objects which she hasn't done before. We aren't sure if this is vision related or processing related issues in which case may be progression in her disease. Either way it will show a progression in the disease. We aren't sure which to hope for.... Please keep Mylee in your prayers. I want her to be happy always and to be at peace. And as long as I can see this in my child, I remain hopeful and myself at peace!

Looking back in time way before my marriage I remember watching an Oprah episode and seeing a little boy by the name of Mattie.... He was so cute and brave... He left an instant imprint on my heart... I have always been interested in fundraising and community service and both my parents instilled this wonderful trait into my life. In fact, to this day I try to live my life with these same virtues. I can even remember watching MDA telethon on television every year... Not realizing that one day I too would be faced with a child who battles this horrible horrible disease!! Mattie was an amazing little boy, he had a heart of gold and a profound spirit to life... That spirit lives on today and everyday!! Mattie lost his battle to his disease at a young age.... His words of Hope and Peace are expressed in everything he touched... Including my heart so long ago!

From the mouth of someone special:

"Think gently, speak gently, live gently, and the world will be touched gently with the essence of your existence.".

Mattie J.T. Stepanek

Xoxo,

Mylee's mommy
"Never Give Up"

For the love of.... Barney!!

For those who know him as the friendly purple dinosaur, in our home he is known as "bo bo" or "bar bor" or "bun bun"... it really just depends on how it comes out at that particular moment. We had ourselves a little meltdown right out of the chute because our little princess didn't wake in time to watch her beloved friend! You would think I could persuade her to watch another program that she would normally have no problem watching, for instance Elmo. Some of you know how much Mylee loves Elmo, however this morning it was all about Barney and nothing else. Note to self, please have 'daddy' DVR this program going forward! ♥

Our summer schedule for therapies has changed and for the most part the change is being handled by Mylee pretty well. She had a difficult time with her physical therapist on Monday, but I would consider these new changes still in a transitional period. I think Mylee should be settled by next week for sure! We are still waiting to hear from the neurologist office to schedule our follow-up since Mylee's last admission. Mylee has now been on the rispiradol for a full week and I can honestly say we are seeing a big difference in her overall behaviors. Our afternoons and evenings are much more enjoyable!

Hoping for a great day... and that our little princess can hold off on watching her favorite purple friend until tomorrow morning!!

xoxo

Summer breeze ♥

It's funny how just a little summer breeze can send you into a complete chilly penguin. You would have thought we were at the pool this morning in 65 degree weather. It actually was 85, blue skies and perfect! All except for that cool summer breeze... It wasn't all so bad, especially if you stayed in the water.

I haven't updated in awhile, but trust me when I say I will have more time now that school has ended for the summer. Mylee has started aquatic therapy (is that what you call it) with her occupational therapist since hippotherapy has ended. Applejack (Mylee's horse) is on a summer break from the heat. The pool is great! However, it is a bitter sweet adventure each and every time Mylee gets near water. I think we escaped with only 3 choking instances today. And to our surprise, Mylee is breathing great!!

We will be kept busy this summer with therapies, continued preparation for Mylee to start Kindergarten and Khloe starting preschool. We only have one planned summer trip to Atlanta for a follow up visit to see Dr. Kendall (www.Virtualmdpractice.com). And most importantly getting Mylee stabilized with some current progression in her disease and back to baseline. I will try update you with the short version since most of the updates have been made via facebook and her caringbridge site.

A few weeks ago we thought we witnessed what possibly could be a myoclonic seizure. And then again a few days later another possible myoclonic seizure. A few days after the second incident Mylee was admitted by her pediatrician due to unknown neurological status. Mylee had an emergency MRI, EEG and spinal tap done. We really don't have any information other than the progression of her cerebellar atrophy seemed to be significant compared to the previous MRI done last December. She also has a new finding of delayed Mylination in her cerebral hemisphere bilaterally. The easy explanation is this could be due to her progression in her disease. We will hopefully find out more once all the results come back from Mylee's spinal tap.

Approximately 6 months ago, Mylee failed a hearing evaluation at school. We have been working with both an audiologist within her school district as well as another pediatric audiologist who works with Mylee's ENT. Mylee is now diagnosed with mild hearing loss. Mylee's hearing aids will be ready in about 3 weeks. I will update once she gets them, it will interesting to see how well she wears them.

Our little Khloe bug is growing into a interesting little character and she is keeping us very busy. Potting training has been a little challenging but we know we will eventually succeed with this milestone. We will also be kept busy this summer with her gymnastics and her love for swimming at the pool!

Until next time...

xoxo