Down and Out with a Sick Little Lucy

Oh, Brother.  I am worn and weary tonight, friends.  It has been a very, very long day.  Mindy and I took Lucy Belle to her ORL/ENT appointment.  They were very busy, so we ended up waiting a very long time.  The doctor is just so wonderful and quick to listen to me.  He is also good at caring for Lucy and her "non-typical" needs:).

The good news is that Lucy's ears are clear!  Both tubes are in place, which we didn't think was the case.  No ear infections in our girl, thank the Lord Jesus (really and truly).  But . . . Lucy's throat is super red and her tonsils are really big.  She's also still screaming most of the time in pain.  It isn't screaming seizures, and I really don't believe it is a crying spell.  I believe she is hurting, so we have to do our best as a team (doctors included of course) to get to the bottom of it all and get Lucy feeling better.

Our ENT believes that we will likely need to get Lucy's tonsils out.  The problem is that he thinks this will be a very hard surgery on our girl.  He said to plan on staying at least a week (we don't have a date or anything yet, he was just preparing us).  It makes me sad to think of putting Lucy through something so hard, but I also HATE seeing her in pain!

After the ENT, we went straight down for a strep and flu test (boy, I am so very glad Mindy was with me to help!).  You may remember that Lucy has been positive for strep throat for almost a month now.  That has brought on the almost endless screaming, the need for narcotics, the extra doctor visits, the diarrhea, the antibiotics, etc.  In fact, she's been on four antibiotics plus the IV rocephin during our last hospital stay (we didn't swab for strep at that time, but we have all come to believe that she likely had it at that point).  NOTHING HAS WORKED. She tested positive again today for strep.  SIGH.  They even tested Lu Lu for MRSA because of the re-occurring, non-stop infections that aren't responding to ANY of the antibiotics.  As one of our docs said today, Lucy has had all the "big gun" antibiotics pulled on her, and nothing is touching the infection.

Because of the infection and pain, Lucy has had a huge increase in seizures.  We've seen seizures that are more severe, longer-lasting and seizures that are presenting differently than usual.  Because of this, we also visited neurology today, where our sweet neuro upped some of Lucy's seizure meds.  She also thought that Lucy may be having severe headaches or migraines since she's hitting her head and pulling her hair out in pain.  So, we are starting a med for that as well.

So, what do we do to stop all of this???  The Infectious Disease doctors are being consulted and will be added to our team for this situation.  I'm praying they can shed some light and offer some remedies.  They at least have to have some ideas for treatment, right??  We are waiting for those MRSA results, and we are waiting to hear from our team.  I am SO grateful to have all of our specialists at OU Children's where they can quickly and easily share information, confer and make plans.  It's a pretty amazing thing, and I'm anxious to hear what they come up with so that Our Girl can start feeling better.  And God-granted, the increased seizure meds and additional medications will help with the issues Lucy is having.

Here are some helpful ways to pray:

• Pray for Lucy's complete healing
• Pray for her ear and throat pain to stop (her throat pain causes her ears and head hurt)
• Pray that seizures will slow and that Lucy Belle will respond well to the med increases
• Pray for supernatural rest for each of our family members, including my parents and our nurses who are all doing more than their share to help us!
• Pray for God's provision for our family

On a VERY happy note, I'm posting a precious, precious video of Lucy Belle.  This was taken at our outpatient therapy yesterday with our Speech Pathologist, Lendy.  This is just a glimpse of how well Lucy is doing developmentally!  I wish I had taken the video longer.  This video is Lucy and her version of signing "more".  We are just thrilled and can't wait to see the other things that the Father will all Lucy to accomplish!  Praise God!  

Tired, Weary and Down and Out . . . 

Ryan

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