Simply Amazing Progress!!

Logan has not been to therapy all week.  I am so excited to return on Monday!  They will be SHOCKED!The progress we have seen in Logan is amazing.  I can’t believe how much he has been talking this past week.  His vocabulary has seriously quadrupled.  He repeats EVERYTHING!  This is something he just did not do about a week ago. 

He is jumping off furniture and landing on his feet.  He is walking up and down stairs without holding onto the rail.  He is running without tripping or falling.  His balance is amazing.  I have not seen him stiff or even have any tremors in over a week.  This truly is a miracle.  Cliff and I keep looking at each other and saying “Is this for real?  Are you seeing what I am?” when he does things we have never seen him do.  Even something as simple as turning the handle on his “Jack in the Box” until it pops open without stopping or getting stiff is huge.  

His smile is infectious.  He is so happy and proud of himself.  I can’t imagine what is going through his little mind. I’m sure he feels so free and excited that his body can do things he has been trying to do for over a year now.  It is an amazing thing to watch.  Thank You, Lord! 

Thanks to all of you for your prayers.  Please continue as we await the results.

Christmas Blessings!

We had a wonderful Christmas in San Antonio.  We spent most of our time over at the Duncan’s house as we have not seen them since last August.  The boys enjoyed seeing Na-Na and Pa-Paw again and getting spoiled this Christmas.  Logan continues to improve daily and it is amazing how much he is talking as well.  I am not sure if it has anything to do with the medicine, but I have definitely seen a huge difference in his speech this last week.  What a wonderful Christmas blessing this has been.  We had so much fun seeing family and spending time together.  We are SO BLESSED!!!

Logan loves to watch movies on my laptop.

Time to open all the gifts!

He is getting so big!  Love him.

Logan loves his new bike.

Corbin having a shootout with his Uncle Justin.

Naptime for all. Big and small!

I have a picture of Corbin just like this one taken 8 years ago at Nana and Pa-Paw's house.



We stopped at a rest stop on the way home to let the boys run and play!

Look what I can do!

Psalm 103:1-3
Bless the Lord, O my soul, and all that is within me, bless his holy name!
Bless the Lord, O my soul,and forget not all his benefits,who forgives all your iniquity,who HEALS all your diseases.

http://www.youtube.com/watch?v=xD_3djunjyE&feature=youtu.be

Praise and Prayer

I am excited to give you great news about Logan!  While we are still cautiously optimistic, I feel like this news is just too great not to share.  After a bit of a scare and a rough Thursday night, Logan is finally back to normal. 

Logan woke up at 11pm Thursday night crying and screaming, “Hurt”…..“Hurt” over and over.  He could not get comfortable; he fell to his knees in pain every time I put him down, and was running a 101 temperature even after giving him Tylenol.   It was one of the most helpless, terrifying situations I have ever experienced with Logan.   I finally decided to call the Neurologist at 2:30am to see if we should take him to the ER.  While he was concerned about the fever, he seemed to think that a double dose of Motrin and heat on his back would help.  Thank God, he was right.  Logan was having muscle spasms in his back and legs from the lumbar puncture.  He finally settled down after I massaged his legs and put a heating pad on his back.  By the time Cliff got back with the Motrin, Logan was fast asleep.  Friday we took it easy, and by Saturday he was back to his normal self.

 Given all the drama on Thursday, we decided to wait until Sunday to start his medication.  I gave Logan ¼ of a Sinemet pill at noon on Sunday afternoon; he ate lunch, and then went down for a nap.

 Here is what has happened since then: 

1.) I woke Logan from his nap; he was not stiff as a board when I laid him on the changing table.  Instead, he bent his knees up towards his tummy and relaxed his hips as I changed his diaper.   

2.) Logan usually shakes almost as if he is cold when he wakes up from a nap.  The tremors are especially bad when I wake him from a deep sleep.   When I woke him from his nap yesterday, he did not shake at ALL. 

3.) We went to our CG Christmas party last night.  Cliff went outside to watch Logan while I was inside; moments later Cliff came in and asked me to come outside.  I was shocked to see Logan RUNNING across the front yard.  He was sprinting across the lawn without an abnormal gait and without falling over and over again.  He was jumping and running without losing his balance.        Unbelievable!  It was absolutely amazing to watch as I stood sobbing in awe of God’s miraculous power!  He did not fall or seem the least bit phased by the uneven ground or steps on the porch.  There are no words!  Really…………NO WORDS!

4.) When we got home we watched Logan do leap frog across the living room floor; jumping until his little heart was content.  He was bending his knees and pushing off the floor, something we have never seen.  Oh, happy joy!

5.) This morning I was so excited to go wake him up bright and early to give him another dose of medicine, and see how he would react when I woke him.  He usually shakes and has tremors that sometimes continue even as I feed him breakfast.  The tremors usually go away after he is awake for 20-30 minutes.  When I woke him this morning he was not stiff.  Again, he bent his knees up towards his chest and let his arms rest loosely above his head.  He did not have any tremors at all this morning and seemed to be quite relaxed.  Praise God!

6.) When I took him to PT, OT, and ST this morning, he was more relaxed than normal in his car seat.  He kicked his legs, bounced up and down to the music and then crossed his legs in front of him. 

7.) His therapists watched him run and jump during therapy.  I was excited to hear that they also noticed a difference in his balance and gait.  Of course, they were not as excited as me, but they were very encouraged to see the progress he has made in just two days.

8.) Even with all this good news, I am a little concerned about his loss of appetite and dizziness.  He seems to be dizzy; putting his head down, and rubbing his eyes.  Please pray that these side effects are only temporary and that he will continue to have great results from the medication.

So there you have it……….that is the wonderful news with every detail!   I will continue update you on his movements and let you know how he is doing as he continues on his medication.   Again, please pray for success and little to no side effects.

Update on Logan and Quiet Reminders That God is Faithful!

As I sat in the waiting room and watched so many sick children be called into surgery one by one, I was reminded of how fortunate we are to have Logan.  Not only did he make it through heart surgery and so many other ups and downs throughout his 76 day NICU stay, he continues to hit milestones we thought may never be possible.  He is, for all intensive purposes, a healthy and happy little boy.  He is extremely active and full of love and so much JOY!  We are so blessed to have him in our lives.  

My heart was filled with compassion for two moms in particular as I watched them while we were waiting for Logan in recovery.   It was heartbreaking to watch them as they sat alone with their bald little boys, one waiting for chemo, and the other bone marrow.  All I could do was say a prayer for them and ask for comfort as they struggle through something so much more difficult than what I am experiencing.  I ask you all to say a little pray for these moms.  God knows them by name even if we do not, and he is able to give comfort to the brokenhearted and rest to the weary.   Pray for healing for their cancer stricken little boys.  Pray that if they do not know Jesus that they will find Him through this situation.

Logan’s procedures went very well and he did not have any problems with the anesthesia.  He seems to be his normal self right now as he watches his favorite “Blue’s Clues” episode.    He will start on his first dose of Sinemet tomorrow and we are praying for miraculous results.  Thanks for all your prayers and encouragement over the past few weeks.  We will not get any results back for about 4 weeks due to the holidays, but we are confident that whatever the results, it is all in God’s plan.  I will keep you all posted on his status throughout the next month.  No matter what challenges we face ahead, we know that Logan has the will power and fight in him to make the best of any situation.  We believe and trust in faith that God has a miracle in store for our precious little boy.

"It's Just Too Big For Your Suitcase"

This is such a HUGE week for our family.  I have so much going through my head right now.  Does that make for a good or bad time to blog?  I guess we will see…..I will just share my heart and ask that you please remember Logan in your prayers on Thursday morning.  I am filled with so many conflicting emotions…………..like fear, apprehension, anxiety, but at the same time, hope, faith, and peace.  How can one person have so many things going through their mind at one time?  It is not easy to put it all into words so if I sound like I am just rambling on and on, just skip to the next paragraph.  I have not felt this overwhelmed by God’s goodness since Logan made it through heart surgery at 2 weeks old.   In fact, I am so overwhelmed, that all I want to do is share with anyone who will listen how I am in awe of His precious love for me. 

A year ago when Logan was diagnosed with Cerebral Palsy we were devastated, but we were also grateful Logan would finally get the help he needed to learn coping skills to help him lead the most “normal” life possible.  What is “normal” anyway?   It was some closure to a year long struggle.  We finally felt like we had answers to what the future would hold for our sweet little boy.  As the year went on we began to accept his diagnosis and the fact that he was always going to have special needs.  We knew Logan would have many challenges ahead of him, but we also knew we would work hard as a family to help him overcome his disability.  We started extensive therapy and I began diligently working with him at home.  Logan has made remarkable improvements and hit milestones that have even surprised his therapists. 

You can imagine the shock when the same Neurologist that gave us a second opinion and confirmed Logan’s Hemiplegic Cerebral Palsy diagnosis a year ago suggested, “There may be a “cure all” medication for Logan, he may have been misdiagnosed with CP, and he may have a rare condition called Dopa-Responsive Dystonia.”  It was even more shocking as he continued to explain, “This may have nothing to do with the fact that Logan was premature and just a genetic condition that is very likely hereditary.” 
   
My mind began to race…………….all his rigidity, all his instability, all his lack of balance, all his tremors may be caused by DRD and it could all be gone with medication?  He may be able to run without an abnormal gait, he may be able to walk with ease, and there may be no struggle to eat or write or put together puzzles?  All the questions and joyous thoughts began running through my mind as I sat in the doctor’s office stunned by this encouraging, yet baffling news.  Genetic?  Hereditary ? What?  This played over and over in my head as he so eloquently explained the details using his somewhat intimidating medical vocabulary.  I felt like I was in a dream as he went on to explain he wants to do a spinal tap, another MRI, and some chromosomal blood work just to confirm.  It all sounded so scary, especially the part about putting Logan under anesthesia for the procedures.  

“How could my son have DRD if nobody in my family or my husband’s family has it?” I asked.   

The doctor explained that only one parent has to have the gene and the gene carrier may or may not ever show symptoms of the disease.  DRD is so extremely rare that only about 1 in a 1000 children seen by a neurologist has this condition. Many DRD patients are misdiagnosed as CP and never tested.  The fact that Logan is being tested for DRD at such a young age is a blessing in itself, as many are not diagnosed until age 8-10 when their symptoms have worsened from not being properly treated. 

DRD is so rare that I have only met one other individual in the medical field that has even heard of this condition.  The only reason I had heard of DRD was because I briefly read about it online (being the Google queen that I am) after panicking when Logan’s first physical therapist suggested he go see a hereditary disease specialist.  At the time, we were so scared just hearing the words “hereditary disease” and so “sure” she was wrong in her thinking that we chose to take him to the referred neurologist for a second opinion instead.  Praise God she had the foresight to refer us to a neurologist she knew had experience with DRD patients.  Even though she never specifically used the words Dopa-Responsive Dystonia, as she is legally not allowed to diagnose, I have to believe that this is what she was referring to when she suggested we consider looking into the possibility of a rare genetic dystonic condition. God is always working behind the scenes and I am confident that He specifically chose her to get us to the best pediatric neurologist. 

At the time, we were so confident Logan’s developmental delays and medical issues were due to his prematurity that we did not think it would be wise to just dismiss what seemed to be a logical explanation to consider a hereditary condition.  The beautiful thing about this whole story is, had Logan not been born 11 weeks early, and had the issues he did, he would not have gotten the quality of care he has had over the past two years.  The reality is we may have never known he might have this extremely rare condition that only the most informed and specialized doctors know exists.  Coincidence?  I think NOT!  God’s sovereign plan?  Most defiantly! 

His plan was so much bigger than my brain could ever imagine!  Or as our pastor would say, “Some things are just too big for your suitcase.”  I just can’t wrap my mind around how perfectly the past two years circumstances have  all come together to create one HUGE miracle.  As I sit here and type what he has done for our family, I am in awe of his all knowing, all powerful blessings, and I am humbled by his love for us.  It is so incredible how he has worked out every detail of every day.  This is just too much to believe.  Yes, too much…………… But, I believe!  I believe it, I hope for it, and I have faith that our Lord Jesus Christ will heal our son!  I truly believe in this miracle and I BOLDLY praise and thank God in advance for healing Logan’s little body.  I cling to Hebrews 11:1 and Ephesians 3:20. 

Hebrews 11:1- Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see.

Ephesians 3:20- Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us

I consider just the possibility of a misdiagnosis alone to be a miracle.  This is a second chance I never felt would be possible……A second chance I was fine without having.  Friends, we must NEVER forget that with God, ALL things are possible!  Next time you are discouraged when your prayer is not answered as you wish, I encourage you to take heart in the fact that it is possible His answer is only “no” for now.  So often we get wrapped up in the fact that we are not getting what we want right then, that we forget God has a plan and it is all in His time.  He may be working on you as a person, and simply answering your prayer with a “yes” immediately may not be in your best interest long-term.  He knows exactly what you can handle and he knows when the best time for you to receive a blessing.  I have learned there is not always a definite “yes” or “no” answer.  So often we forget he also answers with, “wait”.  Psalm 46:10, “Be still and know that I am God” comes to mind. 

If we hadn’t experienced this past year the way we did…………..Oh, how much we would have missed!  We would not have experienced the grace and the peace that only Jesus Christ can give to those who have a child with a chronic disease.  I both accept and embrace the fact that CP may still be Logan’s diagnosis, however; I also have faith that he will be healed through Jesus Christ.  We BELIEVE!  I am so excited to finally have some answers this week.  I am sure the test results will take longer than this week, but I am ready to start the process.  We truly believe there is a miracle to come.  Wow….that was therapeutic. Thanks for listening……………….I will keep you posted on his status.  Please keep us in your prayers.  I leave you with a verse that means more to our family than ever before.

James 1:2-4- Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.