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.

Answers to all our prayers!

I am so grateful that I have my Heavenly Father watching over my every need.  I need not worry because he always takes care of us.  Thank you to everyone for all your prayer.   I felt it and I know that He was listening because every detail was taken care of over the past week.  I have an overwhelming peace that the Lord has his hand in this, He has provided a way for us to finance the procedures, and He has worked out the timing of the procedures.  His plan is so much better than my plan could ever be. He is able to do so much more than I can even imagine!  God is so good, what He does is so good, and He has the PERFECT plan for our family! 

He is good, what He does is good, He has a perfect plan for our family!

Thanks to everyone for your prayers. We received confirmation that Logan will be having all three procedures done on December 15th at 7:30am. I am so thankful the neurologist was able to schedule an emergency MRI on the same day so that we do not have to wait until the end of January.  God continues to bless our family and carry us through this uncertain time.  Please continue to pray for the procedures and for a peace that surpasses all understanding. 

I am reminded of Eph. 3:20 on a daily basis!  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

Pray for Logan

Last Monday we went to Logan’s 6 month Neurology check-up. The doctor is fairly confident that Logan may not have Cerebral Palsy, but instead a rare condition called DRD (Dopa-Responsive Dystonia). Unlike Cerebral Palsy, DRD is a treatable condition that , in most cases, is completely reversible with medication. Logan will undergo a spinal tap, MRI, and extensive blood work in the next couple of weeks.  I am waiting to hear back from the scheduling department at Cook Children’s Hospital to confirm the date. He will have to be put under anesthesia for the procedures.  He may have some discomfort from the lumbar puncture, but he should recover by the next day.

While I am trying not to get my hopes up, I am on bended knees praying that Logan does not have CP as previously diagnosed.  I wasn’t sure if I was ready to share this yet as I am trying not to get too focused on what is to come, but rather focus on the Logan I love and accept as he is today. Logan is such a JOY and so full of love and life. Of course, it is hard not to hope and pray that there is a magic pill out there to make his life a little easier. In the end, I decided to share so that I can ask for your prayer during this uncertain time.

 

Please pray:

Pray that the Neurologist will be able to fit Logan in before the end of the year so we can get some answers soon and not have to pay another surgery deductible next year.

Pray that the testing goes smoothly without complication.

Pray for peace and comfort for me and Cliff while Logan is under anesthesia again.

Pray for steady hands and wisdom for the doctors/nurses working on Logan.

Pray for financial provision.

PRAY FOR A MIRICLE FOR OUR SWEET LOGAN!

Blessings

I am so blessed to have these wonderful kiddos.  Corbin is such a smart little boy.  He is doing so well in school.  On Friday, he brought home his report card with all A’s and one B.  He also got the highest you can score for conduct.  I am so proud of him.  He is becoming such a little man.  He loves his little brother so much and is such a big help to me.  Logan’s eyes light up as he screams with joy, “Bu-Bu!”, every time Corbin returns home from school.

Logan is slowly but surely saying more words and seems to understand almost everything I say.  His therapy is going very well and I feel like it is well worth the money.  At least that’s what I tell myself to feel better about dishing out almost 100 bucks a week in co-pays……ha-ha.  In Texas there is a law that allows special needs children to go to school when they turn 3 so that they will be prepared for Kindergarten.  This is such a blessing and puts my mind at ease.  I know a couple ladies from church that have their preemie kids in the program at Keller ISD.  They rave about how great it has been for their kids.  Logan will get all his therapy at no cost through the school district.  He will go in the mornings for 5 days a week next year.  I am really looking forward to this program!

Cliff is doing great and enjoying his work.  He is up for a promotion this month.  I am so proud of him and so grateful that the Lord has blessed him with a job that he loves!  We have come so far in the past five years and have made so many huge changes through faith.  I am so thankful for all the Lord’s blessings!  God is so good.