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

Child's play....♥

We enjoyed the beautiful weather yesterday and took the girls to the park... it was a suggestion by Mylee's physical therapist to meet at our local city park in our neighborhood. It was amazingly beautiful outside, I think the temperture was almost 80 degrees!








Mylee did great climbing the stairs to the playground equipment. She was quite proud of herself as she climbed up each play apparatus. She did very well sliding down the playground slide. We gradually introduced to her the sand beneath her feet. First she walked on it with her shoes on, then we sat her down in it with her shoes on, and eventually we were able to take her shoes and braces off to let her feet touch the sand. I am pleased to annouce she did GREAT!!! In fact, so well that she created angels in the sand (us desert folk make sand angels instead of snow angels!!).... ♥

xoxo

Bonded forever ♥

Sisters

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at indentifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your heart and soul. You are ...compassionate beyond the expectations of this world. You are my "sister".

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICU units, in obstetrician's clinics, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world.

We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us in line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip to Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat". We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left of the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith anyways. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in al they will accomplish as they pass through the world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

~Author Unknown.

xoxo,

Sara

A smile like no other...

She is my teacher, she is my hero..... she is my daughter and has a smile like no other!! It always amazes me no matter how bad my day has gone, no matter how frustrated I am because I have dealt with tantrums, diapers explosions from an almost 5 year old, having to change bed sheets multiple times a week from a medical bed that when I see her smile.... all those frustrations melt away!!! I love it so much!! ♥



It is almost 8am this morning and I have decided to let my little princess sleep instead of waking her up for school. We may be in a mad dash to get ready when she decides to wake but for now she is my sleeping beauty!



I am interested to see how bloated she is today, she has slept long enough to get her entire overnight feed which consists of 600ml. She has been having this strange on and off again retention in her skin, mostly noticeable on her face and around her eyes. We are not quite sure what is causing this and it will be something we mention to her pediatrician when we see her next week.



Mylee's right lung again sounded bad the beginning of the week, but as of yesterday afternoon she was sounding more clear. This respiratory season has been very strange for Mylee. It has been great we haven't been in patient and her over all health has been great! However, she seems to have junk in her lungs that she is tolerating, which is great! The question now is how long can she tolerate this junk. And is it a virus causing this (slight temps) or is she aspirating and tolerating the aspiration?! Is it time for another modified barrium swallow test?



Mylee will have hippotherapy later this afternoon. I am excited to see more smiles from my precious little princess!!










xoxo,

Mylee's mommy ♥

The start of a New Year!!!

I haven't updated in so long.... I am back in action and will update soon! We have started the year off perfectly - no inpatient stays for Mylee!!

Life is great at the moment!! ♥

xoxo

"Never Give Up"