a miracle!

Today I spoke with my endocrinologist.  I have been waiting over a week to hear about my blood tests.  Let me back track a minute.  When I went in to see her she did a great job explaining things to me.  As you may remember, she also discussed my weight.  One of the other things she explained to me was that they (I don't know, the powers that be) changed the level of acceptable (insert medical term) as markers of cancer.  Those who were once considered cured were no longer considered cancer free.  They were still fine, just not cancer free and needed to be watched.  The number use to be something like a 3 and now is more like a 1.  My number...... undetectable!  That's how low it was!! .03 She said she has NEVER seen a number this low! She said I am basically 100% cancer free!  How many people ever hear that?  100%!  Not me.  As some of you might know, today is JT's 5th birthday.  I was told there was a 99% chance he wouldn't come for 2 more weeks.  He arrived less than 24 hrs later.  So I don't take 99% to mean much, but 100%, I will take 100%!
As I am sure you can tell, I am Beaming with joy!  I am praising God and thanking him for the miracle and the prayers that have been lifted up on my behalf.
The only numbers that didn't look good were my sugar levels, hence the insane diet, as well as my meds.  My meds are so high I am to skip my meds 3 days a week to get it back down!  So, other than the sugar which I am diligently taking care of my numbers are awesome! My B12, great, vitamin D levels, fantastic.  So, if I can lose this weight, I am actually going to be healthy again.
I keep telling Jake sorry he married a lemon.  Maybe I won't be a lemon anymore, maybe I can redeem myself??
Thank you all so much for praying with and for me, for my family.  I am so incredibly thankful!

Peace in the sadness

I am part of a mommy group on FB.  Today one of the ladies posted that she would appreciate prayers for her sister and her family.  Her sister had a premie and the scans of his brain came back abnormal.  Later in the day the mom of the premie (Laura) posted that her son has PVL.  Most of you might remember that JT's has PVL as well.  My heart sank for her.  It took Jake and I months to learn how to say periventricular Leukomalacia.  Now it simply rolls of our tongues.  PVL is a brain bleed.  The same brain bleed that lead to Justin's CP.  I prayed for Laura, that she would know the peace that passes understanding.  The peace that only God can bring in a time of confusion and sadness.  If you go back to one of my very first blogs you can read about JT's diagnosis and what I went through, but I will tell you know what I told you then, it's as clear as day to me.  Sitting there with the doctors, by myself because Jake had finally gone back to work.  I felt nothing but peace.  I wasn't anxious or sad.  I heard God say to me "It's going to be okay."  I didn't know what that meant, I hoped it meant that JT was going to show the world brain bleed or not he was going to be just fine! And in many ways he has.  Justin will be 5 next week.  As of right now he does not sit up, crawl, walk unassisted, or use the toilet or bathe himself.   However, Justin is one of the most amazing people I have ever come across and I am so blessed to call him my son! What a gift! What a blessing! My kid makes people smile on their worst days.  He makes people see that life isn't that bad.  He makes people laugh.  He loves people and is kind and thoughtful with his words.  He is incredible.  Knowing what a blessing my son is to me, my family and so many others, my heart still broke for this family.  There will be so many doctors appointments to go to.  Oh how I wish this didn't happen to others.  Our life is so hard, so challenging and so exhausting.  We don't get to do many of the things so many other families get to do.  There are weeks, months where I have so many doctors appointments I can hardly see straight.  The bills pile up faster than you can imagine and the stress of caring for a child with challenges is a lot.  Yet, In all of that there is this peace.  A peace that lets you know, it's okay.  Its going to be okay.  I am so thankful for that peace.  It brings me joy and it allows me to see all of who Justin is.  My prayers for Laura are the same as the prayers I pray for myself.  To know that peace daily but especially in the darkest hours.
If you have time pray for Laura and her husband, their child (first born, not sure if it's a boy or girl) and their son in the NICU.  Pray for their strength and peace.  Pray the PVL does now worsen in any way.  

My health

I know many of you saw my posts on Facebook yesterday stating that it's time to lose weight or die.  From that I received several messages, texts... checking in on me.  First, thank you.  Second, I am not going to die tomorrow, but if I don't get my weight under control it is going to lead to more health problems.  So here is the deal.  Yesterday I saw a new endocrinologist.  I chose her because she specializes in me! What I mean is that her expertise is my thyroid issues exactly.  When we first met she was asking me questions that I had no idea how to answer.  She drew pictures to explain things to me, something that has never been done before.  She explained how my body works, in regards to my thyroid.  She was also very blunt and told me I must lose 40lbs ASAP.
What she told me was that my thyroid disease (not the cancer) is an autoimmune disorder.  It is a genetic thing.  She said they travel in pairs and if my white blood cells were attacking my thyroid then there is most likely another part of my body under attack too.  Question is, where? She also said that my medication is 2x what it should be.  Why?  I have no idea, it's never been mentioned to me.  I have never been told to lose weight (but let me state, I know that I need to.  I am not blind to that! Let me also state that although it's nice to hear you look good or you don't need to lose that much weight, I would rather hear encouraging words to help me reach my goal instead of feel good words.)
 She said that my weight could be causing my liver not to properly process my medication so my numbers are off.  The thing is, my doctor in DC never question that.  He just followed the numbers and upped the meds.  I felt like I was in good hands and trusted him. I still think he is a good doctor, I just wish I knew to ask more questions.  I have learned to advocate for my kids but not for myself yet.  I never ask enough questions.  When it comes to doctors I just sit and listen and trust.  Anyway, she also said that she believes I have Celiac disease.  So, as of today, I am on a gluten free and a sugar free diet for a minimum of 6 weeks, maybe longer.  When I say sugar free, I mean all sugar, even natural sugar.  So, no fruit, no honey in my tea, no coffee creamer in my coffee, which lets be real, no coffee.  I feel good about this.  It was time to lose the weight and to stop making excuses.  After E I lost all my baby weight.  After JT I had 3 knee surgeries, a miscarriage, then I had Caleb.  Then dealing with JT and his therapy, E was in school.... then I got pregnant with the twins, got diagnosed with cancer, had the twins, had the cancer removed and here I sit.  Although I feel they are slightly valid excuses, they are excuses non the less.  My field hockey coach in high school was a retired marine, his saying "Excuses are like assholes, everyone's got em and they all stink!"  And yes, those were his exact words.  Point is, he was right.  It's time to stop putting this painful diet aside and get to it.  So here I go.  Thank you for your prayers and support.  Remember, I am fine, I am just trying to get even better!!!

Prayers for JT

Yesterday my sweet little boy passed out on the sofa about 1 minute after he got home from school.  He was exhausted.  I don't usually let him nap because if he does then he won't sleep at night.  But, this time, he just looked so sweet and so tired, so I let him sleep for about 40 minutes.  When I went over to gaze at his sweet beauty I noticed that his lips had no color.  I have seen this before in the mornings when he has woken up but I thought it was because he wasn't feeling well.  When he ate the color would come back.  This time the color came back once I had woken him up.  I am concerned that he isn't getting enough oxygen when he sleeps.  I just left a voicemail for the neurologist.  We didn't have a very good first appointment with this office so I am hoping they get back to me today! I am hoping they take this serious and prioritize it.  Right now we are assuming a sleep study will be ordered (yay in sarcasm). My prayer is that we can resolve whatever is going on without the use of a sleep machine.  I don't want him hooked up to a machine all night, he will hate that too.  Please, please pray there is an easy answer and an easy solution.  My sweet boy has been through so much and he is such a fighter.  We are so truly blessed that he has never had a seizure and our prayers are that he will never have one.  But this breaks my heart and scares me too, the colorless lips, it's scary.  Anyway, pray for him, for us, for the doctor and his staff to take our call and message seriously.  Pray for protection of his brain and organs.  

My sweetly sleeping angel, what a beautiful blessing he is!

professional student, and my kids are the teachers

Every day I feel like I am learning more and more.  As a teacher and as a parent my goal is to help my children become life long learners.  To love to learn, to be engaged in learning, curious, growing, strengthening their minds and bodies.  I may not be the life long learner I once was.  I can't remember the last time I actually sat down to read a book.  This is as close as I get to writing much of anything.  But now my learning comes from my children.  I know that we all learn from our children but what I also know is that my children are all so unique.  I would be failing them if I didn't let them teach me about them.  Sounds crazy, I am sure.  But what I am also sure of is that God made them to be who they are.  He gave me the gift of raising them.  They are not mine forever, they are his.  They are a gift that I have been given to mold and guide, but he made them.
Ethan is a 6 year old genius.  I say that literally.  He is one of the smartest people I think I have ever known.  With that comes learning about who he is and how he ticks.  He is not like me, he is more like Jake.  He is very serious, sensitive, focused, scatterbrained, creative, and has a wild imagination.  He can learn things before you can, and never forget them.  He can follow the directions for a puzzle or a lego one time and never need to use the picture or directions EVER again! He can build things from memory.  He can have melt downs at the drop of a hat for what seems like no reason at all.  He can frustrate everyone in the house in a matter of seconds and he can read with tone, punctuation, and joy. He loves his little brothers! LOVES them!
I don't actually give this kid enough credit in life.  He is not the norm yet he is expected to act and behave like the norm.  He receives little grace and his life is spent by those around him (including Jake and I from time to time) trying to conform him to someone he is not.  Trying to take away his joy because of responsibilities the world has set before him.  He is 6! When did a 6 year old become and adult? When did a 6 year old need to have so much responsibility?  Why are we doing this to our children.  Be honest, if you could go back and be a kid again, wouldn't you want to? The daily grind, the struggles of work, little time to relax and play.  Why are we as a society depriving our children of these precious and oh so short years?
I have spent the last month really learning about homeschooling.  How would I ever do it with all the little ones home? Do they all need to be homeschooled? What is best for one isn't always best for another.  How am I going to balance life, doctors, therapy...? Ethan is teaching me daily.  He is showing me the parent I am vs the parent I long to be.  Yes, I believe in responsibility and chores, and being a family working together.  But I also believe that each one of my children is unique, different and should be treated as such.  Don't get me wrong, the others are teaching me too, but it's Ethan who is making me intrigued again.  Eager to learn and to grow.  Eager to learn about who he is and what would help him succeed most in life.
Having young children I hear "it's not fair" way too frequently, but no, life is not fair.  If it were we would all have drones for children.  Instead, I have a brilliant child who tests me to my core daily; a child with special needs who lights up the room with his smile and who loves the Lord with all of his being; a 2 year old whom I pray doesn't kill himself jumping off the roof of a house or go car surfing or any other crazy stunt he is likely to pull; twins who in their own right are so very different.  Life would be easy, life would make sense.  Life is not fair and to be honest, I don't want it to be.  My kids might push me to my limits some days, okay most days but I am a life long learner because of them.  I am here to do my best, to love them and to pray for them.  I am here to help them be who God made them to be.  I am here to learn!

Dylan's kidney's

I got a phone call at 8:30am to make an appointment with the nephrologist for Dylan.  The woman on the phone said they had an availability at 9am today.  So, with Jake home, I called my neighbor to see if she could watch Caleb.  She graciously said yes and we loaded Jt and the twins in the car for the doctor.  (we took JT too b/c he had an apt at 10:30 and we weren't sure we would have time to come home between apts) We arrived and the doctor was wonderful.  It turns out that Dylan has no cysts at all!!!! NONE! Instead, Dylan has hydronephrosis.  Long story short, it is not life threatening and at this point we do not need to be overly concerned.  It turns out he could have reflux of the kidneys, or bladder, or both.  Anyway, part of the track that leads from the kidney to the bladder might not be working right, causing urine to go back up towards the kidney.  We are on alert for UTI's at this point.  If he gets a UTI at any point he will have to have a nasty little procedure, one the doctor doesn't want to put him through unless she has to.  If we can keep him healthy, he has a great possibility of outgrowing this.  How awesome is that!! She was delighted to give us the news too.
So, the prayers for the next 6 months (that's when his next sonogram will be) is that he continues to be healthy and have no UTI's.  I think for now, we will take it 6 months at a time.  It could be years but for now, 6 months of prayers are greatly appreciated! Thank you so so much for your prayers.  I feel so blessed and thankful.
In other prayers, pray this medicaid stuff works out quickly and properly this time!

lemons, lemons and more lemons

I am naturally an optimist, thank the good Lord for that! This past week has been a rough one and seem to only be getting worse.  Last week I told you that Dylan was having his kidney's examined.  After calling the doctors office for days trying to get the results, a nurse finally told me that the doctor says he really needs to be followed by a nephrologist.  Then she used some big term, he has (gibberish doctor terminology) kidneys.  Okay, what does that mean?!? hello?  Anyone want to help me out here? No, great, thanks for the referral to another doctor.  I just want to scream! Just when I think life might be settling down, things are going well BAM! I get knocked down again.
In more bad news, we got a lovely denial letter for JT from medicaid.  I have spent the last hour and a half on the phone with medicaid only for them to tell me to reapply and wait another 30-45 days! Isn't there a faster way? Can't we do anything else? No? Super, thanks!
Sorry, I am an optimistic person, really I am.  I am just at my end.  I am also an extrovert who is homebound in a new state with no friends.  I am trapped inside my house because I can't get an aide for JT until we get medicaid.  I can't go anywhere with all 4 boys by myself unless I have to (therapy and doctors appointments, no where fun, it's just too much and too chaotic!) and the afternoons are reserved for the 3 littles to take a nap.  I know I am venting here and I am sorry, but hey, life just likes to throw me a lemon tree and all I want is a tree shredder! Forget lemonade, it's overrated! (lol)
Okay, so let's try to focus on the positive..... I can't I am too frustrated and angry and overwhelmed! So, you focus on the positive for me and pray that I see it soon.  I am sitting here with tears sliding every so slightly down my cheeks.  I don't like to cry, I feel weak, but in this moment, I am weak! I need help! I need God to show himself to me! I need him to love me and to tell me he cares, because right now I am at my limit.  I serve a big God with big plans for my kids and for me.

Lord, help me to listen closely, to follow you when I want to run away screaming.

The impact you make on other is real

The other day I got the news that my youth pastor has stage 1 non smokers lung cancer.  He is still a youth pastor in NOVA.  He was getting ready to take a 3 month sabbatical, (trust me, time well earned) to ride his motorcycle and visit his kids.  Before he was to leave he got the news.  A week of tests and such, things I know all to well, were done and he has surgery in a few days.  My heart rejoiced at the fact that they found it so early, knowing how it feels to get the good news that it hasn't spread and that it was caught early.
I guess I am here to say that this is a man who has dealt with some great kids and some really tough kids.  Jim is a guy who never judged anyone! Not even the worst of the worst.  Instead, he encouraged, loved and mostly called you out when you needed to be called out.  His love was tough but it was real.  Every teen that has been loved and challenged by Jim knows he cares.  I doubt Jim knows how many lives he has changed.  When I was in high school first going to the youth group with Jim, he would call me "the swimmer" because he couldn't remember my name.  Over the years he taught me to read my bible, study God's word, put God and others before myself.  In college, I slipped away from all of that.  I still had my faith, but it was on the back burner, the way back burner.  My point is that the foundation Jim helped me build in the Lord is what eventually brought me back.  Back to a real, true and trusted relationship with God.  There is no way I could have made it through all I have been through without my relationship with God.  I would have crumbled and broken long ago.  But here I stand, strong in my faith, strong in my hope, knowing God is bigger! I attribute all of that to the foundation Jim helped me build.  We all have an opportunity to impact others, are you taking the opportunities you are being given to help mold people, or are you walking away?  I hope I am taking the opportunities put before me.  I hope I can make a difference in lives, in my children's lives, in the lives of friends, family, those who work with JT.  Jim has impacted my life in such a way that I am a different person.  I am thankful that he took God's calling and has put himself out there to love and cherish so many kids.
My prayer is that you all will join me in praying for Jim.  For praising God the cancer was found early, that it hasn't spread.  Pray for his surgery and recover, pray he is gifted with the peace that passes all understanding.  Pray for his wife, for her peace, for her comfort.