As Summer comes to a close

Its hard to believe it, but fall is coming.  Countdown to school starting, football and for us our next round of doctor's appointments.  I spent two hours the other day just calling each of Thomas' specialists office and making his appointments.  At least now we have them all on a six month rotation about the same time.  My hope is we will see all the doctors by the end of September and get his MRI before the end of the year.  My other HUGE hope is that nothing has changed and he is still stable in all areas of concern: eyes, ears, neck, back and growth.  I have enjoyed playing 'normal' with the kids this summer.  Nothing fancy just a water hose in the backyard and ice cream the way it should be, life simple.  Loving and enjoying the time that I have with my three beautiful boys!

Please pray for Thomas that he is continuing to grow stronger each day and that everything is stable right now.  I will keep you updated as our appointments come and go.  We love each and every one of you so very much and I wish I could take Thomas on a tour so you could all meet him for yourself and get some of his sweet, sweet sugar.  He has such a fabulous personality about him and is so sweet with his little talking and how he talks to others (strangers) all the time.  That sweet little face with those big blue eyes looking at you just grinning.  His life is Fabulous!! He is having fun, learning and doing all he can to be like his brothers.  Most people don't have a clue that their is anything different with him and right now I just relish in that fact.  I share all my boys with all of those willing to love them.  They are special blessings from God and I cannot explain to you the amount of gratitude I have for my own children as well as all of the other beautiful children gracing this Earth. 

I do need to mention one other thing that I am SO, SO thankful for and that is the other mother's of KFS children that I have connected with.  So many times from my blog I get emails from other moms asking me questions and comparing stories and its heartbreaking and comforting in the same token.  I don't wish this on anyone of course, but to have someone to compare notes with and doctors and tests.  It helps to answer my own doubts and questions that I have as his mother.  Is this doctor the best?  Should there be more tests? Less tests?  Are we doing this wrong?  Did I miss something?  We are all able to share and figure it out together.  My heart is heavy with some of the information that is shared, I'm not going to lie.  But I would rather know what I might be up against and prepare the best I can than to not know or miss something.  Its actually pretty hard to miss anything with the team of doctors and wonderful pediatrician that I have in our corner.  Doubts are normal.  My fight is to not let them get the best of me and to take them as they are, keep my Faith and Hope and rise above for Thomas. 

Thank you to the other mother's out there who battle with the unknown, make countless phone calls, doctors visits, therapy, nutrition, etc.  To the mother's who have pity parties and often because this wasn't the fairy tale dream we thought we would have.  I feel your frustration, your fear, your loneliness and will tell you its okay.  We never have to truly accept this, after all, we are their mothers. 

Stay positive and show Grace.  Always remember that each day we are getting stronger and are becoming better mothers and better people.  It is our job to teach our children that despite their extra challenges they must stay positive and persevere.  This world is rough, people are mean and selfish, people leave and we get hurt all the time even by those who love us most.   I say show them Grace, real forgiveness from your heart as our heavenly Father has shown us.  In each person I believe there is a little child who is still wanting to know that they are loved for who they are, they are forgiven for their mistakes and will always have someone to wrap their arms around them when things get hard and whisper in their ear "it will all be okay". 

Thomas, my sweet boy, know that no matter what you are going to be okay.

 

Psalm 139:14

New International Version (NIV)

¹⁴ I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.

Summertime! God's promise of sun and warmth.

Its summertime around here without a doubt.  We have gone on vacation, went to the beach, ate ice cream, played outside A LOT, stayed in our pjs all day, swim lessons, played with bubbles and chalk. . . well, you get the idea.  We have kept up with our therapy with a few cut backs for summer.  I have been trying to balance the busy with the calm the best I could for the boys.  Thomas was able to enjoy the swim lessons a bit, they have fabulous lifeguards that are extremely helpful and fell in love with Thomas.

We have gotten into a great habit of working on some of our OT lessons while I cook dinner each night and he loves it and is getting SO good at it.  My goal is to always be working with Thomas to keep up his muscle usage and thus strength in fun ways.  Its best so he doesn't think he is working.

School starts up in three weeks and our next round of appointments will start kicking in.  We will have our follow up with the Ophthalmologists, Pediatric Orthopedic, ENT, Spine Care Clinic and our annual MRI by December.  I will keep you all updated as these things start coming down the pipeline.

As for me, the mommy, its been still been a roller coaster to be honest.  I like to think that we are normal and that its really no big deal when we are living our daily lives.  But the reality reminders are always popping up again and again.  I biohazardous package coming in the mail, CHOA statements, insurance EOBs, but the most heartwrenching is hearing the stories of other KFS sufferers. 

I have come to know and love them so dearly. It benefits me to know them and to stand with them to promote awareness and research for KFS.  I joined to learn more, to know what we were up against, to try and determine some type of prognosis for Thomas.  They are beautiful people just like you and me, children of God made specially by the makers hand.  There are good things I get to learn about and then their are the disappointing, disheartening things that you read such as this post:

After being given incorrect info about MRI yesterday and going to get report myself ...I am exasperated that Dr has no suggestions on who to see, lack of connection to the pain level, no ideas for new course of treatment and here I am in the same painful place with spinal canal narrowing, which is new. Sorry...just needed to get it out. And before you say, get a new Dr, I should list all the Drs I've seen. Running out of them.

The frustration is overwhelming, the pain is daily and barely manageable.  The medications are numerous.  I could go on and on.  I pray that her life is touched with healing and answers.  I pray that she knows that through her pain God loves her unconditionally and will help her through.  I pray that this will not ultimately be Thomas future.

Jeremiah 29:11
For I know the plans I have for you,” says the Lord. “They are plans for good and not for disaster, to give you a future and a hope.