He Touched Me

The other morning at 3am I awoke to Hannah mumbling softly in her room.  Her room is right across the hall from us and I wondered if she was awake or just talking in her sleep, (which she is known to do).  I walked across the hall and she was awake but she wasn’t talking….she was singing.  I stood there for a moment and heard these words:

Shackled by a heavy burden, neath a load of guilt and shame.  Then, the hand of Jesus touched me and now I am no longer the same.  He touched me…..Oh, Oh He touched me and oh the joy that floods my soul!  Something happened and now I know, He touched me and made me whole!

How do you get upset being woken up at 3am to the sweetest little voice singing Southern Gospel songs?  I did touch her back and pull the covers up and told her that was beautiful but it was still night-night time and to go back to sleep; but I couldn’t help but smile at her singing and her choice of song too.  It’s no secret that I am not a huge Southern Gospel music fan, but Dennis and Hannah are.  Don’t get me wrong….I love the words to the music, it is just the slowness and twang of the singers singing the songs that drive me batty!  But, if you really listen to the words of some of the old Southern Gospel songs, they are filled with God’s love, peace, healing and grace!  Songs like He Touched Me, The Old Rugged Cross, I Believe among others…..the words…..they bring tears!

What is really a crazy concept for me is Hannah’s speech and language is difficult at times to understand, especially for other people.  I understand everything she says but I am with her 24/7.  But, when she is singing the words are crystal clear.  She knows so many songs.  Music definitely speaks to her.  She loves her Southern Gospel but that isn’t all.  She is a huge Carrie Underwood, Katy Perry, Maroon 5, Toby Keith, Martina McBride, Mandissa and Taylor Swift fan and many times will just sing at the top of her lungs.  Most mornings I wake up to Katy Perry’s “Firework!”  HA!

Music has never been a huge thing for me.  I love music and there are so many songs that I hear that will bring back memories of years gone by, (some good memories and some bad).  But, I can’t carry a tune to save my life, so I don’t sing and I have ZERO rhythm, so I don’t dance.  The few times I have tried to dance I look like Elaine from Seinfeld; actually much worse!  So, as much as I like music, I am not a music person.  In fact, in the car if I am alone I usually turn the radio off or way down where I can barely hear it, just for peace and quiet!  But, Hannah is just like her daddy.  They love music.  It speaks to them and they both love to sing and dance.  Well, not sure Dennis loves to dance but he will with Hannah.

We all have the things in our life that touch us to our core……I think for Hannah it is music.  She has always loved it and there is nothing sweeter than hearing her sing it; especially touching are the songs about our Lord!

music

Until next time…………

Slowly Learning and Applying

I have always been a slow learner, not intellectually or educationally based but instead in life; with choices and life experiences.  I have always been one to make bad decisions or poor choices several times before the light bulb switches on and I realize…..”oh, if I had just not made that choice AGAIN and if I had learned from the previous bad mistake, I wouldn’t be where I am.”  So, I guess the light bulb doesn’t come on real quick for me at times.

One of the hardest things I have had to learn is trusting God through everything and can say after events this week, I think it is finally “clicking” with me.  Knowing you have NO control, can’t fix things, can’t make the end result go in your favor, everything completely and utterly out of your control is not an easy thing to go through.  I have been through MANY situations in my life, as I am sure most of you have, that require us to sit, wait, watch, pray and trust that it will all work out in the end.

Dennis and I had a HUGE event this week where we were totally helpless and things were completely out of our control.  The doubt crept in, the “I want this outcome, but it isn’t guaranteed.”  The stress, the wondering “what if this doesn’t go our way.”  So much anxiety, worry and doubt.  It is always worse for Dennis since he is a man.  You know, men are fixers….give them a hammer, a screwdriver, some duct tape even and they fix it.  When situations come our way and we can’t fix it; it is incredibly frustrating.  Yesterday was a HUGE day for us in our life because of some big changes that are coming our way so Monday evening to say we were stressed out is an understatement.  Finally though, Monday evening I actually looked at Dennis and said, “Baby, this is out of our control but it is solely in God’s.  God’s hand is in this and has been since the beginning and we just have to trust that NO MATTER what the outcome, it is His plan and His will.”  Then, I just prayed and I left it in God’s hands and I slept soundly Monday night.  That was huge for me because even though the stress was there, I stopped worrying and fretting over a situation I had ZERO control over.  It gave me such peace to just say…..”I have no control and so I am letting go.”  If you know me at all, you know I am a control-freak!  I control everything around me and if you don’t watch out I will control everyone around me too.  I am certainly not an easy and laid back person…..my personality won’t allow it.  I never fly by the seat of my pants.  I am a planner to the point where it takes any fun out of events because I plan them to death!  HA!  So, having zero control has never been an easy thing for me, not that it is for anyone; but my anxiety goes through the roof.

We still don’t know exactly for sure how yesterday went…..we should find out more tomorrow but I am at peace.  I know that no matter what happens in the next month or two that God knows the outcome and He is in this big change for us 100%.  Learning this and applying it are two different things and I think I am finally getting the hang of this…..I guess at 44 years of age, it is about dang time!  HA!  The whole “let go and let God” is becoming more and more real to me, especially with this journey we are on with Hannah and now with more changes in our immediate future……I am finally learning that nothing happens to us that is a mistake and I am thankful I serve a God who is all-knowing, all-loving, all-kind and always there.  He goes before us and then He walks with us and carries us if the need arises!  I am thankful that no matter what,  I am in His tender, loving care!  I might be a slow learner, but at least I am still learning and applying it more than ever before!

Now, for grins and giggles.....when I mentioned men fixing this and said duct tape, this is what I was referring to.  Our potted plant blew over on Sunday with the wind we had and split the pot in two.  My very efficient husband who didn't have another pot and didn't want to run to Home Depot fixed the pot with....yes, duct tape!  But, it served its purpose and it has made quite the conversation piece in our front yard.  Yes, we live in the country, yes, this proves we are rednecks and yes, as Dennis said, it is better than potted plants in a toilet sitting in the front yard; so I guess we are good!  HA!

Now, for grins and giggles…..when I mentioned men fixing things and said duct tape, this is what I was referring to. Our potted plant blew over on Sunday with the wind we had and split the pot in two. My very efficient husband who didn’t have another pot and didn’t want to run to Home Depot fixed the pot with….yes, duct tape! But, it served its purpose and it has made quite the conversation piece in our front yard. Yes, we live in the country, yes, this proves we are rednecks and yes, as Dennis said, it is better than potted plants in a toilet sitting in the front yard; so I guess we are good! HA!

Until next time……..

Sore Toes

Have you ever had your toes stepped on so hard that it left your toes sore?  That happened to me today but probably not in the way you think.  Let me explain:

If you have been reading my blog for any amount of time, you know that due to Hannah’s health issues and lack of immune system she and I do not go to church.  Dennis usually goes every Sunday morning but she and I stay home.  Now, let me be honest…..it has been nearly 3 years since I stepped foot in church and at the beginning I missed it greatly.  Sunday’s were (and still are) my least favorite day of the week.  You see, I was raised going to church.  It is instilled in me and I will be the first to admit that I didn’t always appreciate it and I took the ability and freedom to go for granted.  Now, I am not one of those people who believes you have to be in church to be a Christian.  It is a building full of sinners, just like me.  Going to church, getting baptized, serving in some ministry is NOT going to get you to Heaven.  Only a belief in God, asking forgiveness and acknowledging He is the only way to Heaven and a desire to honor Him (even though I fail daily, that is where grace comes in) is gonna get you there.  So, let me state very plainly…..I don’t care if you never darken the door of a church….it won’t keep you out of Heaven.  With that said, I feel as if I have had an excuse the past 10 years and especially the last 3 years not to go…..kind-of a “get out of jail free” card, if you will!  HA!  There have been only a few opportunities for me to go to church and in all honesty, I have let those opportunities go.  The few Sunday’s in the past that Dennis wasn’t working or for one reason or another didn’t go where I could have, I haven’t.  Not because I couldn’t, but because I chose not to.  The longer you stay away, the easier it is not to go.  So, the longer I have been away; the less I miss it and the desire to get up, get dressed and drive to church isn’t there.  Again, doesn’t make me any less a believer or a Christian; just once you have been out of the habit, it is harder to get back into it.

For the past few months though, I have started missing it again.  Being in a service, hearing the music and hearing a Pastor preach God’s Word.  For me, sitting in front of the computer watching a service stream online just isn’t the same and if I am being perfectly honest; I usually get up and walk away.  Why?  Because I can and I get distracted with other things……like Hannah!  So, watching it online has never been successful for me until about a month ago when I started listening to an old-time dear friend preach.  Now, this pastor and his wife go all the way back to when I was a child.  They were dear friends of my parents and at the time David was a Police Captain with the Sheriff’s Office here in town.  In fact, he is the one who talked me out of becoming a police officer when I was 18 years old.  I was dead set on going through the academy and becoming a cop.  David gets all the credit for convincing me, that wasn’t the road I should take.  So, I still blame him for not following my dreams….HA!  I know he was only looking out of for me.  On the flip side, he is probably one of the reasons my brother became a cop…..

Anyway, I reconnected with Drena, his wife about a  month ago and I started watching their church services online.  WOW!  It was like David was talking just to me.  I was mesmerized and drawn in.  I have been searching so long to be connected; longing for a small community church.  Nothing at all against the big mega churches, as that is all I have ever known; but my needs are different now and the desire to be part of a small community church has been my hope.  I mean, let’s be real…..if the day comes where Hannah can go back to church, she has less likely chance of getting sick if she is around fewer people.  The church I grew up in and the church where I am still a member is just too large for Hannah and her needs.  She gets overwhelmed quickly.  She can’t handle too much going on around her.  She and I both need understanding and community.  I have become a recluse in so many ways and crowds tend to cause me a great deal of anxiety, as they do with Hannah.  I don’t do well in large groups of people anymore.  So, a smaller, more intimate setting is what I desire and need.  Now, we are nowhere near ready to take Hannah back to church. I have to know for a fact her health isn’t in jeopardy and Dennis is in no way ready to leave our home church.  He still loves it there and frankly, we can’t go as a family so there is no need to be looking or moving churches.  So, I am not making any big radical changes; just if I get the opportunity to go to a smaller church, this is the one that I feel suits me well due to my needs changing, nothing else.

Now, about my toes……boy, did they get stepped on this morning.  No, they got bulldozed this morning.  I sat there as Dr. Peacock spoke about offenses in our lives.  Heck, in this day and age we live in, someone is getting offended by something all the time and I too, have been offended at times.  People have hurt my feelings, lied to me and about me, at times I have felt neglected and unloved.  I have held bitterness and resentment in my heart towards people and been unforgiving.  But, something he said this morning jumped out at me.  The Bible says to forgive……70 times 7; which in other words means always!  But, what about the person who doesn’t ask for forgiveness?  The person who is never wrong?  The person who continually time after time after time hurts you?  What about that person?  How do you forgive someone who doesn’t want your forgiveness?  The answer I learned this morning……JUST LET IT GO!  Holding on to the bitterness and resentment is only hurting you.  If the person who has wronged you is unwilling to ask forgiveness and make amends you are just hurting yourself and allowing them to continue to have a grasp on your life.  You are allowing them to rob you of joy, peace and your relationship with Jesus.  If you are staying awake at night worried about the people or circumstances that have wronged you, you are only allowing those people or circumstances to have control…..JUST LET IT GO.  I had another dear, wise friend of mine (who I credit for saving my life years ago), Dr. Rick Marks tell me forgiveness wasn’t about the other person, it was about you and just because you forgive someone and let the problem go, doesn’t mean you must have a relationship with that person.  Some people are just toxic and if they have hurt you once, twice, three times then most likely it will continue to happen.  The illustrations that were used this morning were perfect and taken right out the the Bible.  Things I have never seen in the Bible (probably because I don’t study it like I should); but truths that as old as the Bible is, can still and very effectively be applied today.  I wish I had the sermon notes as I would type them here for you all to read, as it was that powerful!

We all have people in our lives who have hurt us.  We all have a past….whether we have been divorced, lost jobs, lost friends, been hurt by others, treated poorly, lied to and about…..whatever the situation is we all have a past.  Before our past, our bitterness and resentment hardens our hearts, crushes our spirit and destroys our life and relationship with The Lord, JUST LET IT GO.  It hit me this morning of all the bitterness and resentment that I have had over the years (especially the past 3 years) and it made me realize not everyone is going to like me, you can’t please everyone and the hurt of the past needs to be left in the past.  It doesn’t matter what your past consists of….leave it there, move on and find the joy and peace again that only God can give.  Forgive those that trespass you but just because you forgive doesn’t mean you must have a relationship with that person.  Some people will never be happy unless they are hurting others and exalting themselves…..learn from the past…..forgive those who ask for it and let the others go!

With that said, now my toes are even more sore because I just preached the same sermon (in a much condensed version with not near the explanation or illustrations) that I received this morning.  It did my heart and soul good to be at Bible Believer’s Baptist Church this morning and getting my toes stepped on because I needed to hear that sermon I am sure more than anyone else there!

Until next time………….

Sweetest Words Ever

Every night when I put Hannah to bed she says her prayers.  Really sweet prayers too, I might add.  She prays for certain people by name; some family members, and 3 of her doctors.  She then will pray….. “fevers go away; go back to school, back to church much better.”  Then she ends her prayer, “in Jesus name pray Amen.”  Usually that is the extent of it and due to the medications she is on, normally she is sound asleep 2 minutes later.

Last night her prayer was a little different.  When she prayed for Dennis (who was out-of-town), she said, “bless daddy come home right now.”  That made me chuckle.  Then, when she prayed for Boompa, she said, “bless Boompa good grief Miss Agnes.”  HA!  She says that all the time now since it is my dad’s favorite saying.  Is it wrong to laugh during bedtime prayers?  If so, then I need forgiveness because I did!

Anyway, after the Amen she was quiet for about 2 minutes and then she said the sweetest words ever in the quietest little voice….”Mama, I love you so much all my heart.”  Be still my heart……I responded, “oh baby girl mama loves you so much with all my heart.”  With that, she was asleep.

There aren’t many days that I can hug and kiss her and even fewer days where she tells me she loves me  (without prompting).  But, last night, totally on her own, she hugged and kissed me before bed and then after her prayer said the sweetest words that I long to hear more often.  This journey has been difficult to say the least and I have many moments during the day where I wonder if I am doing the best job I can and question why God even entrusted me with this precious, medically fragile, special child.  I feel most days worn and tired by the time her bedtime comes around and usually no hugs, no kisses, and no I love you’s from her.  But, last night was different and for the first time in a long time I walked out of her room, after she was asleep, with a smile on my face and joy in my heart.

I know she loves me.  I have never doubted that.  In fact, I will take it a step further and say she probably loves me more than anyone because she feels safe enough to take all of her rage, aggression and anger out on me and me alone.  But, the heartbreak that comes with that aggression, rage and anger can be so difficult to accept; even knowing it isn’t her and she has no control.  Knowing it is all due to inflammation on her brain doesn’t make it easy.  But, those “God moments,” where He gives me a glimmer of hope or allows something to happen to bring joy, even for just a minute; even with the smallest little thing, it is those moments that give me strength, courage and determination to carry on and not give up and be hopeful that God is going to turn those little moments into bigger and longer periods of time eventually, in His timing.

So, last night and even into today (two times already) those sweet words are giving me joy, hope and strength.  Thankful for these moments and cherishing them today!

Just because it is "Throwback Thursday" and this picture makes me smile and brings me joy!

Just because it is “Throwback Thursday” and this picture makes me smile and brings me joy!

Until next time………

I Had A Dream

No, not a dream like Martin Luther King had, but pretty appropriate since yesterday was MLK Day!  My dream was different, and yet so sweet, special and sad all wrapped up into one.  What causes you to dream?  Too much to eat before bed?  Something weighing heavy on your mind?  Sure would like to know.  I know there are some nights I don’t dream at all and other nights where I dream, but yet cannot recall what the dream was about.  Some nights are nightmares and some nights are sweet dreams.  Last night by far was one of my favorite ever dreams…..so sweet in fact, that once I woke up (in tears), I tried so hard to go back to sleep and pick it up where I left off.

I don’t remember the first part of the dream but as I rounded the corner there he was…..my sweet Grandpa who passed away in 2010.  He was standing there with his infectious smile on his face and the moment he saw me, tears started falling and he held out his arms.  Both of us in tears, he told me how much he loved and missed me while hugging me.  I was able to tell him how much I loved and missed him and then I woke up.  I literally woke up with tears streaming down my face.  I tried so desperately to go back to sleep because I wanted to see him a little longer and feel his hug.  It was so very sweet.  I am sitting her typing this with tears in my eyes as it felt that real.

You see, my Grandpa was the sweetest man who ever lived.  Anyone who ever met him would tell you that.  He loved people…..everyone!  He never said an ill word about anyone or to anyone.  He was kind, compassionate, loving, sweet, giving and really…..a saint!  His smile was so sweet and his eyes so very kind.  He gave the best hugs and loved his family like no other person I know.  He was so proud of his 4 kids, their spouses, his grandchildren and great-grandchildren.  He was always there to lend a hand and help in any way he could.  I remember one Wednesday evening I was in the hospital with Hannah after her first open-heart surgery.  She wasn’t doing well and I was alone.  Dennis had to work and about 5pm the door to Hannah’s room opened and there was my sweet Grandpa bringing me dinner.  It was one of those rare moments that I had him all to myself.  We talked and I cried.  He sat there and held my hand as I told him I just wanted my baby to live.  I told him I didn’t know why this had to happen to my sweet girl.  He looked at me with his eyes full of tears and told me this……”I don’t know either doll, but God does and He, in His infinite wisdom gave Hannah to you because He knew that you would be exactly who she needed.  You are the best mom to Hannah and God chose you because He knew if anyone could handle it, you could.  I love you and I am so proud of you.”  I will never forget that as long as I live.  The moment Hannah was born she had Grandpa wrapped.  He didn’t care that she had Down Syndrome and was “different.”  He loved her from the moment he met her.

I was always a “Grandpa’s girl.”  From the time I was little until the day he passed away he had my heart…..I think a piece of me died when he did.  No one ever loved me the way he did.  He was always there.  He was a man of few words but I think his entire family knew that he loved each of us with a special kind of love.  He was a rare gift……and a loss I still feel to this day.

The dream was so bitter-sweet……I wanted so badly just to have a few more minutes but I am thankful for the dream I did have.  Yes, I know it wasn’t really him and it wasn’t real but it sure felt as if it was and that moment was exactly what my aching heart needed.  I don’t always dream, but I am so thankful that last night I did.

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This picture was taken on his birthday one year. I believe this was July of 2009, the year before The Lord called him home.

 

My favorite picture of Grandpa and Hannah. Oh, how he loved my little girl and she loved him!

My favorite picture of Grandpa and Hannah. Oh, how he loved my little girl and she loved him!

 

Until next time………

Difficult Day

I speak a lot about the rollercoaster ride we are on each day.  Some days are worse than others and sometimes we can have a really great day and then 3 bad days, then an okay day, then a horrific day, then a great day and on and on and on.  We don’t know from day-to-day the slew of emotions that Hannah will face.  We can literally be sitting here with her laughing one second and then like the flip of a light switch, she is crying for hours.  It is baffling with no rhyme or reason except for the inflammation in her brain spiking for reasons unknown.

Today has been difficult.  Hannah had a fabulous day yesterday but today has been full of anxiety, depression, tears and lethargy.  She looks ill, but isn’t.  She is sad but doesn’t know why.  It breaks our hearts each time she cries and can’t tell us why; of course if we could fix it we would, in a heartbeat, but we can’t.  Motrin helps since we know the emotional rollercoaster is due to inflammation in her brain, but it is still heartbreaking to watch.

Today, while she was crying non-stop she kept saying, “Henny here….Henny back to Hannah’s house.”  She has said that many times before but it hit me today more so than usual because this “self-professed cat lover” is missing Henny more than usual too.  I don’t know why, but today for some reason hearing Hannah say she wants Henny to come home, made me wish the same!  In fact, I went in the kitchen to make “cookie balls” (they are healthy energy bites actually but Hannah calls them cookie balls) for Hannah and as I scooped the peanut butter I had a flashback to when Henny was here and she would sit patiently as I scooped the peanut butter just hoping for a lick!  Henny loved her some peanut butter and carrot sticks….crazy dog!

So, today we are missing our sweet dog so much.  I do know we are getting her back soon; just not quite sure when.  We have a lot going on that I haven’t spoken about on my blog or Facebook so we are trying to get through this really hectic change and then proceed with bringing Henny home.  We don’t want to bring her back prematurely either.  We want Hannah to be ready…..after today’s tearful cries of missing Henny, I think we are close!

Just a difficult day all around for my sweet little family as Dennis is struggling with other things himself and well, a few extra prayers wouldn’t hurt if you don’t mind saying a few for us!

Here are some pictures of happier times and we are looking forward to making more memories soon when Henny comes home!

At CCI in February.....just finding out Henny will be our dog!

 

This is JOY!

 

Nighttime snuggles!

 

Our Team Picture

Until next time……..

 

 

Crazy, Busy Week…..Recap

What a crazy, busy, whirlwind of a week.  Normally our weeks are not busy.  I mean, how busy can you really be never leaving the house.  I keep myself busy with housecleaning, laundry, cooking and school work with Hannah but usually we are always home.  This week was not our normal week.  We started off Monday morning going to Hannah’s dentist appointment, which by the way she did wonderfully!  She is such a trooper at ALL doctor appointments and even let them take x-rays (she is braver than me).  After we left there, we went to my 2nd mama’s house and she fixed us a delicious lunch and cut Hannah’s hair.  Hannah couldn’t see out of her eyes her bangs were so long.  After Adrienne cut her bangs, she hugged Adrienne and said “thank you so much Adrienne!”  HA!

Hannah and Mrs. Paulette.  Hannah told me she was a "brave dragon."

Hannah and Mrs. Paulette. Hannah told me she was a “brave dragon.”

 

Hannah and "Aunt" Adrienne!

Hannah and “Aunt” Adrienne!

Tuesday we had another busy day as we had a consultation with a new Psychiatrist for Hannah.  Now, let me say this.  Most of the Neurologists and Psychiatrists we have heard about and seen refuse to acknowledge PANDAS as a real diagnosis.  There are only a handful of doctors in the country that will recognize it and treat it.  They will recognize “autoimmune encephalitis,” which is basically the same thing, but not PANDAS!  Crazy!  Anyway, Dr. Kim really wanted us to see another Psychiatrist.  The one we saw in St. Pete (she diagnosed Hannah with PANDAS along with our Neurologist, Dr. Winesett), had left her practice and couldn’t see us anymore.  She corresponded often with Dr. Kim and said it would benefit Hannah to have a Psychiatrist here in town to help manage the OCD, tics and aggression.  I refused to go back to Nemours as it was the Neurology and Psychiatry group there who refused to diagnosis or treat Hannah for PANDAS.  In fact, the Psychiatrist at Nemours put Hannah on 3 different mental health drugs at different times that wreaked havoc on her emotionally and mentally.  The three drugs had the adverse reaction in Hannah due to the inflammation on the brain.  What we do know about PANDAS is it is not a mental health disease.  It is a Neurological disease.  You cannot treat it with mental health drugs as the brain will respond adversely.  You have to treat the inflammation…..PERIOD!  Once you get a handle on that, then you can use a few medications to treat symptoms; which we are working on now.  When a child with PANDAS is exposed to germs/illness/live viruses then the child “flares” and the incredibly heartbreaking, life-debilitating symptoms return full-force causing extreme depression, anger, rage, anxiety, OCD and tics.  The goal is to get the right medications to help make the “flaring” times more manageable.  I have learned through this whole process, a cure will most likely never occur (unless my miracle-working God sees fit to heal her); but we have to work on managing the symptoms and building her immune system.  We are trying to do both but it is a very slow process.

Anyway…..Dr. Kim and I kept running into roadblocks as all the Psychiatrists that our insurance plan covers were not taking new patients and we were going to have to pay out-of-pocket, which was going to be extremely expensive.  It just so happened though, I called again the one that Dr. Kim really wanted me to see and found out she had left her practice and moved to another one.  I called the new practice on January 4th at 8am and they got us in to see Dr. Fritschle this past Tuesday…..Miracle #1 that we got in and didn’t have to wait months!  I had asked Danielle, Hannah’s ABA Therapist to go with me, which she willingly did.  Mainly I asked her for backup so when I mentioned PANDAS the doctor didn’t look at me like I had 2 heads!  Danielle has seen Hannah at her best and at her worst and has witnessed Hannah flaring and raging; but has also witnessed her being sweet and loving and then turning on a dime!  I was very nervous and I even told Danielle as we drove over there that I didn’t see this appointment going anywhere and would probably be our first and last visit!  (Yes, I don’t have much faith in Psychiatry….at least not until Tuesday).  I instantly liked Dr. Fritschle as she was young and seemed ready to listen.  About 15 minutes into our conversation I came out and asked her the dreaded question, “do you believe in PANDAS.”  Her response blew me away…..she said, “I not only believe but I have a patient I have been treating for it for quite sometime.”  WHAT?????  She believes in PANDAS?  I was shocked, joyful and hopeful all at the same time……miracle #2….she believes!  She did say it was a controversial diagnosis and that the medical community is split down the middle but she has witnessed it and believes it and knows that it is a real and debilitating disease.  The thing that separates it from mental health diseases is that IVIG, steroid therapy, antibiotics and plasmapheresis help PANDAS instantly and none of those things help mental health disease.  On the flip side, mental health disease drugs don’t usually help PANDAS; only make it worse!  YIPPEE…..HALLELUJAH….another doctor on board with us who believes and one that wants to work hand in hand with Dr. Kim to come up with the proper protocol and treatment that works for Hannah; giving her quality of life instead of merely existing!  After a 2 hour appointment, Danielle, Hannah and I left there so excited and hopeful!  Well, Hannah was just hungry but Danielle and I were excited about this new doctor.

Wednesday and Thursday turned out to be crazy busy days too where some unexpected things happened that kept me from having even one free second to sit down both days.  Although, I did work on the house Thursday as it had been so neglected this week.   I cleaned out closets and the entire house from top to bottom; so therapeutic for me.  I love that feeling of accomplishment!  It was nice to wake up this morning on this dreary, rainy day and not have too much to do besides laundry and cooking dinner.

For the first time in this journey I feel hopeful.  I think we have a good team of doctors willing to work with us and doctors that are willing to work together. Dr. Kim has almost pulled her hair out through this journey just trying to get all the doctors on board working together.  Now, we have a team of doctors from Infectious Disease, Genetics, Hematology, Neurology (that is a long story in itself that I will talk about later) and Psychiatry that are going to work with Dr. Kim to get Hannah living life again!  A long road ahead……Yes, but a road with doctors, friends, family and of course the Lord walking with us….it gives me hope that there is a light at the end of this long, dark and winding road!

Until next time………