Heartbreaking Week……No Light At the End of the Tunnel

Another heartbreaking autoimmune diagnosis for Hannah with more to come, we are afraid.  This is now leading us down the road to another new specialist.  By the time we are done, Hannah will have a specialist for a every part of her body!

A heartbreaking decision that had to be made that not only affected us but friends who have become family.

Heartbreaking regression with Hannah happening right before our eyes.

It seems to be never-ending.  I try to keep going and I pray my “outward” demeanor continues to look as if I am handling everything fine.  I pray my aching heart and crushed spirit doesn’t show up in everything I do.  I continue to put one foot in front of the other and do the things that HAVE to be done, but in all honesty, I don’t accomplish much more than the “have-to’s.”  If I were being completely honest, I am devastated and wonder if the day will ever come where Hannah gets a break and where Dennis and I do too.  I hate watching my little girl in pain.  The tears, oh the puddles of tears she cries daily due to depression.  The anxiety that eats her up to the point even getting in the car is painstaking.  The obsessive compulsive behaviors and routines are awful to watch and yet, I cannot imagine what it must be like for her.  Please don’t ever “joke” about OCD…..it is a real and horrific thing.  Hannah obsesses over everything to the point of hurting herself by picking her skin, biting her lip/mouth, among other things.  The tics, motor, facial and verbal are awful and we won’t even talk about the anger and rage.  Watching it happen is heart-wrenching.  The repetitive behaviors and speech….the same phrases constantly all.day.long using the only voice she knows which is extremely LOUD has me some days wanting to scream.

My nerves are so raw, I even find myself yelling at God more often than usual.  I assume He understands and I am of the opinion He already knows my heart and thoughts so yelling at Him should come as no surprise.  I am not mad at God.  I do ask why a lot but I don’t blame Him.  I just wish Hannah could get a break…..a miracle cure would be wonderful and something I will never stop praying for.  I just pray my ability to stay sane and that my health continues to do well…..the “sane” part could be up for argument now……I think Dennis might wonder at times if I am, in fact, all there!  Here is a “funny” story for you….so, last Thursday Hannah had a Psychiatrist appointment and at the last-minute I decided to go without her.  I called sweet Lyndsay and she came and sat with Hannah.  I went to the Psychiatrist and when I got there she asked, “where is Hannah?”  I told her, “I didn’t bring her because her anxiety was off the chain and it is a 45 minute drive and she never would have made it, plus I had some things to discuss I didn’t want her ears hearing.”  The doctor was okay with that and we discussed Hannah.  About 20 minutes into our conversation I asked, “do you see adults?”  Her response made me laugh…..she said, “I think that is what I am doing right now.”  HA!    I just pray I don’t lose my mind in all of this.  There are days I wonder how we do this forever, if in fact that is the case and that healing miracle never comes.  I know she will get that healing in Heaven, but I am so praying for an earthly one.  I will be honest, I want to LIVE as a family.  I want to do fun things with Hannah and not worry about her anxiety, OCD, rage, and depression getting in the way.  I want her to be happy and enjoy life.  I want her to have the energy to run, jump, play and laugh.  I want her immune system to be such where she can have play dates and go back to school and church.  I want so much for her and for Dennis and me and yet, the tunnel seems so dark right now.  I don’t see that light at the end of it and after this week that tunnel appears to be getting longer and darker.

Just today, Hannah’s handwriting and math skills have regressed again.  We know this is part of PANDAS but it is so crazy.  She seriously cried all morning today until I finally gave her some Motrin which helped her get happy for a period of time (it works but doesn’t last too long and Motrin is so bad for her stomach, kidneys and liver, so we use it cautiously).  When have you ever known Motrin to help with behavior and emotion?  Well, when you are treating brain inflammation, it does.  This is what so many doctors cannot wrap their heads around.  Motrin helps treat the brain inflammation causing all Hannah’s symptoms.  It is the reason anti-psychotic drugs, antidepressants and other things don’t work…..it is inflammation we are dealing with, not mental health!  I am thankful to have a Pediatrician and a Psychiatrist that understand this and we are praying that Dr. Winesett (Neurology) will be willing to treat her with High-dose IVIG again in January when we see him.  IVIG might be our only hope to get Hannah back…..if it isn’t too late!

I truly didn’t sit down here to type a book….it was going to be a quick update and my fingers just wouldn’t stop typing.  This is therapy for me.  It really doesn’t matter if it is read or not…..it helps to write.  But, since I have typed it, maybe you will read it and say a little prayer for us?  Prayers of healing for Hannah and well…..prayers for healing for Dennis and me too…..this has been hard on all 3 of us and at this time we don’t see the light at the end of the tunnel.

Okay, in my heartache this made me laugh, although in all honesty....this is what it feels like!

Okay, in my heartache this made me laugh, although in all honesty….this is what it feels like!

Until next time………

A Little Baby Boy…….

Forty-six years ago today a little boy was born.  He wasn’t born into a rich or famous family.  He had no importance as far as the world was concerned.  He was just born into a regular family full of love.  He was raised to love God, country and family.  He was taught a strong work ethic, developed high morals and built a true and loyal character.  He grew up wanting to become a police officer and he fulfilled that desire and dream as a young man.

This baby boy who was born 46 years ago today turned into the man whom God had for me to marry.  I have had the honor and privilege of celebrating 16 birthday’s with him and each birthday that passes I love him more.

Our life together has not been what we envisioned but Dennis has sacrificed and risen above the hardships and stress of our life (especially the past 3 years) and he has taken care of us.  He works hard to provide for us financially and makes sure our needs and some of our wants are met; even if that means working overtime or off-duty jobs.  He comes home from work and pitches in with Hannah and the chores of our home; at times taking over so I can catch a break.  He sees to it that I have what I want and never questions me on money I spend or things I do.  He puts his own needs on the back burner and rarely asks anything of me.  He tries so desperately to make sure the stress in my life is eased, even if that means creating more stress on himself to make that happen.

Today, we celebrate my husband, the man God chose for me and the best father and husband on the planet (yes, I know I am biased).  I am so thankful for him, his love for the Lord, his love for me and his love for the little girl God blessed us with.  Life is not easy for us, but no matter what life has thrown at us with Hannah’s health issues and different situations over the years, one thing remains…..Dennis’ steadfast faithfulness to God.  With that steadfast faithfulness comes a love for me like I have never known.  I am so often undeserving of his love and devotion.  I am not an easy woman to live with and my OCD, nagging, germaphobiness (is that even a word), high-maintenance/anxiety-ridden, crazy and sometimes loony self; although I do keep him laughing (at me not with me).  HA!

I am blessed and I know it.  Men like Dennis are few and far between and so I know I got one of the good ones.  Today, we celebrate that little baby boy who was born 46 years ago and I pray for many more birthdays to let him know just how loved and appreciated he is.

Happy Birthday baby…..I love you!

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Until next time……….

Honesty

Time for some honesty:

  • I am tired of doctor appointments.  Last week Hannah had three doctor appointments and this week she has had two.  With each doctor appointment it brings the reason for yet another doctor appointment and with each of those appointments we hear another new diagnosis of something that is going wrong in Hannah’s body.  Yesterday, I heard more than I cared to hear.  It brought on more questions and answers that won’t come because, even as the doctor yesterday told me….”I might have the initials MD after my name but there are some things even I don’t understand.  All I can tell you, is that you have a chronically ill child who is complex and complicated and she always will be.”  She was nice about it, but it cut me to the core.  We have received some diagnosis’ regarding Hannah over the past 2 months that I haven’t shared, and I might not ever share them.  Dennis and I just sit here sometimes saying to each other “how much more does she have to endure and will there ever be healing here on earth?”  All I know is I am weary, but there are many more appointments in our future and even today, I need to find another new doctor in a specialty we haven’t needed yet, until now.  Tired, weary, heartbroken…..the journey never ends.
  • Let me go ahead and be honest here about the conference that I just went to as well.  It was wonderful.  I learned a lot and I received a lot of good advice.  What I also learned that I haven’t divulged yet is it is highly unlikely Hannah will ever be better than she is right now.  The disease of PANS/PANDAS is just now receiving recognition from the medical community and even that is still limited.  Research is beginning, but it is slow.  In a “typically developed” child that contracts PANDAS it is imperative that the child receives treatment quickly.  Hannah was already complicated when she contracted it back in March of 2014.  The treatment wasn’t quick.  When we finally figured out what it was (after Neurology and Psychiatry telling us it was a mental health disease like bi-polar or schizophrenia and trying her on a slew of antidepressants and anti-psychotics that didn’t work) and we finally got on the proper treatment of antibiotics, steroids and then IVIG, it was already too late.  It had progressed to the point of causing irreparable damage, most likely.  PANDAS is an autoimmune disease that waxes and wanes but even on the “good days” there are still many remnants of this disease.  She is never rid of the extreme, debilitating OCD, tics and anxiety.  The depression and aggression/anger calm down some when not flaring but then it will come back with a vengeance.  We never know when and what I learned at the conference is that there are several factors that cause a flare.  Infection or even just exposure to infection (bacterial and viral), vaccinations, including the flu shot (which is why she will never have another one) and stress!  The stress trigger I had no clue about.  It takes the smallest amount of stress in Hannah’s mind/life and she will flare.  All this to say, I learned a lot and I am glad I went but I came away from the conference grieving as well.  Don’t get me wrong, it won’t keep me from fighting and searching for a cure; but my focus now is figuring out a way to keep her from worsening.  Of course, after yesterday’s appointment even the thought of her not worsening seems far-fetched.  I don’t mean to be pessimistic…..I am realistic though and I know this journey we are on, without a complete and perfect healing miracle from God, is going to be our life and it grieves my heart for my little girl and us too.
  • While I am being honest here I have to comment on this upcoming election.  I have refrained from commenting and putting my 2 cents in about it on Facebook for a while now, but our country is in trouble.  The double-standard on the left side is astounding to me and the fact that Donald Trump is being crucified in the media and by everyone on the left side and some on the right side for something he said 10 years ago is beyond stupid.  What man hasn’t had “locker room talk?”  Give me a break!  What woman hasn’t had the same kind of talk?  I am no saint and I have said many things that I never should have said and shocker, some of it was trashy!  OH MY GOODNESS!  AND, the point so many people are missing is, he apologized for something from 10 years ago.  That should mean something!  When has Hillary ever apologized for anything she has ever done?  So, then you also have Hillary who is saying she is fighting for the family and she loves children yet she is okay with murdering millions of babies each year and making the taxpayers pay for it!  Makes me sick…..let me just leave you with this:
    • J. Christopher Stevens
    • Sean Smith
    • Glen Doherty
    • Tyrone S. Woods
      • If you don’t recognize these 4 names, you should google them and realize these are the 4 innocent lives that were lost in Benghazi that Hillary was responsible for……that alone keeps me from supporting her; among all the many other things I disagree with her on! #neverhillary
  • I will say one more thing…..this election will seriously split the country in half.  Come November 8th, half of America will be rejoicing and the other half will be pissed off.  I have seen many Presidential elections but this one is the ugliest I have ever seen.  It has pitted brother against brother, friend against friend and family against family.  The racial divide is bigger than I have ever seen and even in the faith-based communities there is great divide.  I do know this though……I will not debate or unfriend anyone who disagrees with me.  That is the basis of American freedom, to believe what you want and be allowed to voice it without consequences; to vote your conscience and heart.  Nothing I do or say can change anyone’s mind that is already made up, just like nobody will ever change mine.  I am sure my liberal friends and family think I am off my rocker, as they don’t see or feel like I do; just like I don’t understand and never will understand their position.  Come November 8th, the only voice you have is a single vote.  Don’t vote on the person, (because let’s face it, they are both awful candidates), but vote on the issues and the people the candidate has surrounded himself/herself (see I was even nice enough to put HER in here even though I would #neverhillary) with.  At the end of the day, you have one person to answer to…..GOD and you know what?  There is one thing that will keep me going even after this election is finished…….I might not get my choice for President, but I know the KING and eternity is all that matters to me.

So that is my honesty post…..even though I put my final thoughts here about the election, my heart, mind and soul are constantly surrounding my daughter.  There are more important things in my life than who the next President is going to be, although this is a very pivotal election, this is the last you will hear me talk about it.  I will not debate, comment or respond here or on Facebook.  My position is clear and my conscience is too.

Until next time……..

 

Absence Makes The Heart Grow Fonder

Oh my goodness!  This, I promise, will be a short blog post because my brain is actually fried and I am not sure I will be able to make many coherent sentences.

I am in Washington DC right now.  I have been since Friday.  I had the amazing opportunity to come to the PANS/PANDAS Conference.  Some of the country’s leading PANDAS Specialists are here and have led an amazing conference hitting on many of the topics we have concerns about regarding Hannah.  They spoke about the long-term effects of PANDAS, the new strides in research, new treatment protocols, and many other things including the mechanisms of PANDAS and how a strep infection can cross the Blood Brain Barrier to create this horrific disease.  There were question and answer sessions with the Specialists and interesting new studies that are happening.  I got some of my questions answered and now can take those answers home to our Pediatrician and Psychiatrist to hopefully implement them with Hannah; in hopes of healing her brain and body.

It is amazing how inflammation in the brain affects all aspects of the body…..even the GI tract.  Not to mention, the adrenals, hypothalamus, heart and even the body’s vitamin, mineral and iron supply.  No wonder Hannah is so sick.  This disease has not just affected her brain but every aspect of her body.  Infection and Inflammation…..very real things that cause very real problems.  So much of this conference reaffirmed some things I already knew.  This is not a mental health disease.  It is an autoimmune disease that causes inflammation that truly wreaks havoc on the entire body that starts in the brain.

Anyway……I am exhausted but I am glad I came.  I heard what I needed to hear, asked the questions I needed to ask and did what I came to do.  Now, I just have to type all my notes…..I seriously took 50+ pages of notes in 2 days!  Crazy!

I don’t get many chances to just get away alone and I didn’t realize just how much being away from Dennis and Hannah would make my heart grow fonder toward them both.  Dennis took off work so he could be home with Hannah and they have enjoyed their daddy/daughter time; although I do think Dennis is ready to get his freedom back!  HA!  He has been cooped up in the house with Hannah and he isn’t used to that!

I have had the opportunity to connect with PANDAS parents from all over the world this weekend.  There was someone here from Denmark!  I met people from Pennsylvania, Connecticut, Virgina, Nevada, California and Washington State (among other places).  Some of my best information came from talking to these parents who have walked this journey so much longer than I have.  Some, whose kids are healed and others still living the nightmare.  We saw a documentary film last night that will hopefully and prayerfully be released next year.  It was eye-opening and very emotional!  It needs to be seen by the PANDAS “non-believers.”  I think it would change some minds especially in the medical community.

Anyway, I am rambling……I have truly missed my husband and daughter and will be happy to hug them both tomorrow.  Tonight, I am meeting a dear friend for dinner.  We went to high school together and she and her husband live in Baltimore.  She is coming to meet me at my hotel and we are going to go get something yummy to eat and talk about anything and everything……EXCEPT PANDAS!  HA!

Until next time…………

Random Ramblings

My thoughts from the past week:

  • I am so ready for this Presidential election to be over.  Both candidates are sorry excuses for the highest, most honorable, most respected job in America.  Our Leader…..they are both jokes and it is so sad to me that THEY are all America had to offer for this critical position.  I tried to watch the debates and just couldn’t get through them.  The “he said, she said.”  The lies.  The hostility and anger.  The lies.  The arrogance (on both sides).  Did I mention the lies?  The lack of ethics, morals and character.  The lies.  Again, on both sides of the fence.  With that said….I will still vote.  I will vote my conscience.  I will vote for the candidate who is closest to sharing my beliefs, regardless of the things HE has said or done in the past.  I will stand up for the unborn baby, my 2nd Amendment Rights, protecting our borders and our national security.  I will back the blue and pray for peace.  This is all I can do!  Even though I am not thrilled with our choices, my only voice is my vote and I encourage each of you to vote your conscience and pray for our country.
  • I am so thankful that Hurricane Matthew is gone and we had no damage from it.  We were so blessed as our home is completely surrounded by trees on every side!  It could have been so much worse.  My prayers are with those who experienced damage, as I know many did.  The only things we lost were most of our refrigerator items, as our electric was out for about 20 hours.  That was a minimal price to pay for what could have happened.  So, I am thankful today that I had a home to come back to after the storm passed.
Our front yard. The backyard was much worse but it can all be cleaned up and there was no permanent damage; for that I am thankful.

Our front yard. The backyard was much worse but it can all be cleaned up and there was no damage; for that I am thankful.

  • Thankful for my family.  My brother and sister-in-law opened their home to us beginning Thursday evening so we could ride the storm out with them.  They have a built-in generator and plenty of space for us.  We honestly had a great time and watched movies and ate really well (my brother had smoked chicken breast and pork, made baked beans, mashed potatoes, fresh corn, and other things for us to eat).  We laughed and enjoyed watching 3 cats and 2 dogs interact.  Fun when the cats rule the house and the dogs bow to them!  HA!  Here is a picture of Henny trying to get to the cat toys….either that or she had too much to drink….lol!

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  • Seriously though…..I am so thankful for my family.  The fun we had, their willingness to allow us to come in their home and literally “take over,” with a kid and a dog.  They fed us and sheltered us and they didn’t threaten to kill us!  HA!  I will say though when we found out our power was back on Saturday we all started singing the “Hallelujah chorus” because we could go home!  I think my brother actually danced!  My parents fared better than any of us.  They stayed at their condo and never even lost power!  Dennis’ parents were probably the smartest of all because they evacuated and left town.
  • My extreme gratitude to our First Responders, police, firefighters, and EMT’s.  Also, our doctors, nurses and JEA crews!  So thankful for all these men and women willing to risk so much to take care of all of us!
  • Neighbors helping neighbors.  Friends helping friends.  Family helping family.  Strangers helping strangers.  We saw and still are seeing so much of this since before the storm hit.  Community coming together and helping each other.  What a wonderful sight to see in this day and age.  People are still really good and have big hearts!
  • Please pray for me.  I will be heading to Washington DC this week to attend a PANS/PANDAS Conference.  There will be a room full of doctors, nurses and parents wanting to hear about and learn more about this dreadful disease.  A disease that has literally stolen our child away from us for nearly 3 years now.  A disease that is so misunderstood and under-researched.  A disease that awareness needs to be brought to and a cure or at least treatment that insurance will pay for willingly, needs to be found.  I pray I can come back from this conference with new ideas on how to help Hannah.  More information and more knowledge to share with our doctors who are willing to try anything and everything to help Hannah.  Also please pray for Dennis and Hannah as they will be without me for 4 days.  I am sure they will have a grand old-time without the nagging, bossy, control-freak known as wife/mommy!  HA!

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Until next time………

If You Could Only See……

If you could see my heart you would see brokenness, aching, grief, loneliness……you would see hurt, sadness and hardness.  This has been a week……a week of difficult decisions, a week where we will ultimately break hearts of people we love.  A week where we have to decide on some things we don’t even want to think about.  A week where there are no clear answers and actually road blocks we cannot move.  A week where all we can think about is our family….the 3 of us.  A week that I vented about on Facebook a few hours ago and had to remove the post because people got the wrong idea.  That Facebook post completed destroyed my heart and I was left in a puddle of tears….tears which come so much easier now than ever before.  Tears of loneliness because Facebook is my ONE and ONLY outlet and then it all got taken out of context and I had to remove the post because it wasn’t at all what my heart would reveal….if you could see it.

Alone in this journey.  Lost in this journey.  Broken in this journey.  Tears and heartache abound in this journey.  Not only for me, but for Dennis.  Our ONLY concern right now is Hannah.  But, we have something standing in our way of making this better.  We need a BIG mountain moved and we need it moved soon! Road block after road block keeps getting in the way and in all honesty…..the life support for my family stands in this particular road block being removed.

Oh, if you could only see my heart………..you would see broken devastation……dear Lord please hear our prayers……..

Until next time……..