Special Child

A meeting was held quite far from Earth It's time again for another birth Said the Angel to the Lord above.. This Special Child will need much love... her progress may seem slow... Accomplishments she may not show... And she'll require extra care From folks she meets way down below... she may not run, laugh or play... her thoughts may seem quite far away.. In many ways she won't adapt... And she'll be known as handicapped..... We want her life to be content... U Will do this Special job.....U will not realize it right away The Special role YOUR asked to play But with this child sent from above Comes a richer much stronger love... Soon YOU WILL know the privilege given In caring for this gift from Heaven Their precious gift so meek, and mild she is Heaven's Special Child xxx

A post from another mito mom that hit a nerve or two....

Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?” God paused for a moment and replied, “Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.” The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this – it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer – to unlock this love – to create this miracle – for the good of all humanity.”


Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, “I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!” God smiled and said, “You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you. God and the brave little soul shared a smile, and then embraced.

In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.” Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys – some regained lost faith – many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased

Surgery Success

Today was a huge day.  Megan had the surgery to close the fistula where her tracheostomy was.  I had mentioned how scary and tramatic thi.s could be - but - Megan has beat the odds again.  The way she does with intubation was the real risk when on anesthesia.  Normally if she came out of surgery at 9 am we would not count on her being awake enough to extubate until afternoon sometime - maybe 3ish.  By 10 am Megan was fighting for all that she was worth.  The respiratory therapists exact words were "We have to sedate her or extubate".  There were about 8 doctors, nurses and RT's around her in a frenzy.  I took one look at her rigid muscle tone and knew she was good to go.  They pulled the tube and her O2 sats went straight up into the high 90's.  The admit was for a mandatory one night stay in the PICU to make sure she was doing okay.  After 8 hours of her doing fine breathing with no airway complications we were sprung and got to come home.  Hallelujah!!!  We got home at about 7 pm on the dot.  Her culture DID NOT grow MRSA which is awesome - cant believe we actually killed that one.  The next step is to concentrate on her seizures and her diet.  I feel like it is time to come off of the ketogenic diet and go back to a casein/gluten free diet.  The Keto Diet is really hard on her stomach and her reflux which is tricky in itself anyway.  If we go back to a normal diet I would be able to hopefully start to introduce baby food again and let her enjoy some food.  Of course we'll need a swallow study, etc, etc to make sure she is swallowing okay and not aspirating. 

I have an appointment set up with an immunologist to consult with him about IGIV.  It helps some kids with refractory epilepsy and infantile spasms and it can't hurt her immune system - we know it could use some help.  It also is being used to treat fool allergies some so it could be a win/win or her. 

I am so thankful this went smoothly.  There was not an inbetween here and we knew it.  Pat, myself, James and Ryan.  It was looming over our existence every day.   It was all or nothing - sink or swim. I cried so hard last night I thought I broke myself.  Hadn't cried that much since March of 2009 when she was still intubated and pre-trach during the life choices we had to make.  It was that intense.  Although I know Megan's medical issues and disabilites are great and will always be there I am feeling pretty satisfied and happy right now.  Thankful - Grateful - Lucky - Enamored by what an amazing child she is - by what a will she has all of her own.