Happily Ever After . . .

Fourteen years ago tonight, we never dreamed of being where we are today❤️.

Our Wedding Day - 8/2/2002

On this day, I've literally driven all around town from appointment to appointment, visited pharmacies and several grocery stores. I've been on the phone with doctors and nurses and purchased diapers and pj's for our almost 5yo little angel. Instead of a big celebration or romantic getaway, we are saving to hopefully make an NKH conference and PANDAS conference this fall. We're spending the evening as a little family, eating take-out, and it's wonderful❤️. Our anniversary has been a typical day in the life of a special-needs family and one I will treasure in my heart.

A Few Months Before Our Wedding

Fourteen years ago, we never thought we'd have an 8yo who feels his job is "seizure watch" for his sister, while his 12yo older brother takes pride in pushing his sister around everywhere we go, despite the stares.

Our boys know how to tube feed and have spent enough time in the hospital that they know to ask for "a big room", and they know which foods to eat in the cafeteria. They carry so much on their shoulders, but their shoulders are broad - just like their Daddy💙.

Dating - 2001

We never would have guessed that we would be thrown into the world of special needs or that God would give us a family mission through two beautiful daughters that He would entrust to us for but a short time on earth💖. We had no idea how much we would learn medically, relationally and spiritually through these Two Loves. Our Girls have made THE lasting mark on our Family - Reckless Love to ALL💚.

God has continued to provide spiritually, financially, emotionally, and in every other possible way. He has taught us just HOW FAITHFUL He truly is! What an honor it is to be a family that gets to show God's faithfulness, goodness and glory💜!  Thank you, Father.  

Even though this life isn't anything like we planned - it is a GOOD life.

How could we ever ask for more?

Michael McLaughlin, I adore you. Thank you for choosing me that day fourteen years ago and for choosing me every day since.

💞

.You continually amaze me with your faithfulness, kindness and laughter and I wouldn't want to walk this journey with anyone but you! I am yours in sickness and in health, for ETERNITY!!

Mike's Anniversary Card for me - waiting patiently on the fridge

You continually amaze me with your faithfulness, kindness and laughter and I wouldn't want to walk this journey with anyone but you! I am yours in sickness and in health, for ETERNITY!!

💖💖💖😍😍😍😘😘😘💘💘

A Whole Lot of Updates

There are just so many updates, ya'll.  Updates on Mike, on Lucy, on Conner, on Henry . . . where do I even begin?  Let's make it easy with some bullet points . . .


Michael -

• Mike had an MRI last Friday and we are waiting on the results which will tell us whether or not he will need surgery for his ankle (which he severely hurt by falling out of the attic on Dec. 22nd).
• He has still been in pain, especially upon waking and at the end of the day, but he is a champ and is pushing through.  The ankle is still quite swollen and doesn't yet look like it's old self.
• Mike turns the BIG 4-0 on January 21st and I cannot wait to celebrate this man who loves and serves his family in so many beautiful ways!  Seriously, he comes home late from work and gets right to parenting, taking over for me, helping with dinner (or making it for us), etc.  He doesn't stop until around 1130, when we finally get kids asleep in their OWN beds (he stays in the boys room until they fall asleep).  How many daddies do these things?  God is good to give me THE BEST husband for me! 

Conner -

• Conner has begun the braces process and had spacers put in last week
• He is super nervous for those bad-boys and his heavy tears remind me that he is still a soft-hearted little boy and not a teenager (or pre-teen, tween or whatever they are calling themselves these days). 
• Conner now regularly helps me by feeding Lucy and he can do it all by himself, even checking residuals and cleaning up afterwards.  He is a GOOD boy, you guys.  I don't ever want him to feel forgotten in the midst of our chaos. 
• He didn't get that computer for Christmas but is working hard for it for his birthday in Oct (if you see him, he may ask to do some odd jobs for funds;)). 

Lucy -

• Lucy currently has severe infections in both of her sweet, little ears.  It all started about a month ago and I'm afraid that the infection just never truly went away.  I feel like I've failed Lucy as her momma and waited too long to have her ears checked by the doctor. 
• She is now on some good pain meds and is receiving rocephin shots (we had our first round last night, our second round tonight and will end with the last two shots tomorrow evening). 
• Even with the pain meds, Lucy was literally up ALL night screaming out in pain.  It breaks our hearts and I can only hope that she understands when we tell her that we are helping her and that it will get better soon.  Holy Spirit, will you show those things to Lucy's heart so that she knows she will feel better soon and that she will know her mommy and daddy are working hard to help her?
• Lucy is screaming as I write this (11:23pm), so please pray for relief of pain in the name of Jesus.  Pray for immediate healing.  Pray for peace to surround her body.  Pray for stinging and aching to go away.  Pray for angels to visibly surround her in her room tonight so that she will feel extra comforted and cared for.  Pray for our night nurses too, as they care for Lucy while she is so agitated. 

Henry -

• Because of God's goodness, we were able to see a PANDAS specialist this past Monday!  It was WONDERFUL to be validated and to hear that all of Henry's symptoms and behaviors ARE INDEED PANDAS symptoms!  There aren't any specialists here in OK and many of the doctors don't yet believe in the disorder at all, so it was a huge deal to know that, "without a doubt", Henry's testing, bloodwork and behavior all clearly pointed to the dreaded PANDAS. 
• For the very first time, we had a doctor explain PANDAS to us!  It was incredibly helpful, seeing that we've been getting most of our information from the real experts - other PANDAS parents, as well as from other places online. 
• We set up a plan and have started all-natural supplements.  We will also be tapering down Henry's strong meds because, as we have read, they can cause more HARM than good in children with PANDAS.  Henry has done well in the actual taking of the new pills, which is a good thing.  He understands the new plan, and he now understands PANDAS better. 
• Unfortunately, Henry had a very hard time at school today and had to come home.  The teachers and staff did the best that they could and my Dad even went up at one point to calm him down and get him back into the classroom.  Henry is currently struggling from EXTREME separation anxiety (with me) and from OCD (specifically with him thinking he has a temp or feeling the need to check his temperature).  These things are causing him to be a prisoner. 

          Conner overheard Henry in the office today and he wanted to be sure that I knew that Henry 
          wasn't throwing a tantrum.  He told me about Henry's "crocodile tears" and how "he couldn't
          catch his breath because he was crying so hard for you, mommy!".  Conner didn't want his
          brother to get in trouble for this particular outburst.  He said that some of his friends heard it
          and were making fun of Henry and Conner quickly put an end to that, telling them that, "He
          can't help it!  It's his disease".  It warmed my heart that God is allowing Conner to better
          understand what Henry is dealing with.  It made me so happy to hear that he had taken up 
          for his little brother!

        Mike and I are still researching, still pushing, still asking questions - I want to know how to

        help Henry at school.  I want to see him succeed.  He is so intelligent, of that we all are sure

          of. I just want him to feel safe and secure wherever he is and right now, he doesn't feel those things.  He cannot control his thoughts and he cannot control his body either

          (he is also having verbal tics).  Would you pray that God would give us wisdom as we try to parent and lead all three of our earthly children well? 

 

 

• We are still learning SO much about PANDAS/PANS and want to share that information with you, just as we have shared with you information on NKH for so many years (leave it to us to teach you the rare stuff - ha!).  There are many resources out there, but one of our favorites is the Pandas Network:  http://pandasnetwork.org/

• For a simple list of PANDAS symptoms, check out this link: http://pandasnetwork.org/understandingpandaspans/about-pandaspans/symptoms/

• There is also a special site for doctors and medical personnel: https://www.pandasppn.org/

• Lastly, I share with you a link to a movie trailer concerning PANDAS.  The movie itself will be released later this month, from what I understand.  We invite you to watch, even for a few moments, to really see and to better understand this disease and all that it involves, particularly in the patients and their families:  http://www.mykidisnotcrazy.com/

 

 Oh, Jesus!  Rescue Our Son!  Deliver him from PANDAS!  Heal Henry in the name of Jesus, for YOUR glory alone!  Show us how to love him well, how to parent him well, Lord.  Thank you for entrusting this Precious Treasure to us.  We trust you to provide, Father.  We trust you with Lucy and her infections and ask that you would touch her, relieving her pain, even as I type.  Touch Conner's heart tonight as well, letting him feel the warmth of the love his mommy and daddy have for him, letting him know what a gift he is - showing him that he indeed is an important part of our family, God.  You are GOOD, even when we don't see it even when we don't feel it.  Thank you for answering our prayers and getting us into a specialist, Lord.  Your timing is perfect and we choose to trust you on this journey. 

In Your Holy Name I pray all of these things.

Some Very Special Birthdays!

Today is a VERY special day for many reasons.  Today we celebrate the birthdays of several people that we love dearly:  Michael, Miss Jill and Baby Lyla.  What a special day! 

Miss Jill is Lucy's OT at Jim Thorpe Rehab.  She is in charge of Lucy's Occupational Therapy, just as she was with Ellie Kate (she is going to hide in embarrassment about me posting this, by the way, because she's just that humble - don't worry, I know she won't be mad).   Miss Jill is very special to us.  We've seen her pretty much every week for the last seven years.  Seven years is a long time, ya'll!  And of course there's the part where she has loved, taught and cared for our two special girls.  What a treasure.  Happy Birthday, Miss Jill!!  We love you so dearly. 

Another special birthday being celebrated today is the FIRST birthday of Miss Lyla Grace.  Lyla is the daughter of Lexi Ryann Hall, which means she is the granddaughter of OUR Mindy (yes, she is a young grandmother!)!  Obviously, Lyla would be special to us just because she's in Mindy's family.  But, she's come to mean so much more than that - she's become part of our healing story. 

You see, Lyla was born on Michael's birthday.  She was born less than a month from the exact day that Ellie went to be with Jesus.  And through the Lord's kindness, we were there for Lyla's birth, just as Mindy was there with us for Ellie Kate's death. 

Through the Lord's sweet direction, I was able to be in the delivery room with Lexi as she delivered baby Lyla.  I was even able to help Lexi as she had that sweet baby girl (and I loved it!)!  In less than a month, Mindy and I watched a daughter die and we watched a daughter give birth to a grandbaby.  How amazing is that??!!! 

There has been healing for all of our hearts in the life of Lyla, but Mindy and I both have had healing in the birth of Lyla.  We've shared intimate times, and God and His sovereignty have allowed us to witness both LIFE and DEATH within less than a month.  Think about that, ya'll.  Surely the Lord has done great things! Precious, intimate, life-changing things come in witnessing both of these incredible events, and I am so grateful. 

And last, but certainly not least, today is my Dear Husband's birthday!!  This man - the Father of my children, the Leader of our home, the Love of my life . . . I celebrate him today especially.  There is no other person I would rather go through this crazy journey with than Michael Wayne McLaughlin.  He makes me laugh when I don't want to (and also when I do).  His hugs envelope me and make me feel safe and protected.  His shoulders carry the burdens of a thousand men, as well as one wife.  He was born to be my husband, to be our children's Daddy.  He was born for VERY great things, and the best of those are yet to come!  How grateful I am to be matched with this man, our genetic mutations and all!  I wouldn't trade it for the world.

 It is an honor and a joy to be your wife, Michael!  I am so proud of you and I pray the Lord Jesus blesses you richly and in tangible ways this very year.  I pray that your heart is pulled towards His, and that our hearts will be knitted together even more.  I pray that this year will bring desires for intimacy with Jesus, a passion for His Word and even more opportunities for us to grow together.  Happy Birthday, My Love. 

It's hard to imagine that all three of these very important people share the same birthday.  What are the chances?!  Thank you, Father for these special people.  Thank you for bringing them into my life and keeping them there for such a time as this.  Bless them today and bless them this year.  Grow them in a deeper knowledge of you, and may they feel your love, your arms, your peace today especially.

Ryan