An Update on Logan

Finally, after days of back and forth with Logan's Neurologist's nurse, he agreed to work us in on Wednesday.  I have been praying all week that we would have a peace and know what to do once Logan was examined again by Dr. Marks. 

Our faith was restored!  He made us feel so comfortable, he was extremely apologetic for all the confusion and lack of communication with the therapists, and could not have been more sympathetic about our situation.  He was very patient , he answered all our questions, and he took his time examining Logan.  This time he did exercises with him, watched him crawl, and took more time to watch Logan's movements. 

Dr. Marks stands by his diagnosis of Hemiplegic Cerebral Palsy.  While he does see some dystonic movements, he is not convinced that Logan has anything other than CP.  He feels that it may be that he has Bi-plegic CP rather than Hemiplegic CP, but it is too early to tell and there is not a "code" for a Bi-plegic diagnosis.  Logan does favor his right side slightly, but he also does have dystonic movements in all four extremities.  Logan's case is mild and this makes it hard to diagnose because the symptoms are not always apparent this young. 

The only other possible explanation for his symptoms might be what is called DRD (Dopa Responsive Dystonia).  However, Dr. Marks thinks it is highly unlikely and does not feel that Logan needs to be tested at this time.  DRD is caused by low dopamine levels and can be treated with medication.  The only way to test for this is to do a spinal tap and Logan would have to be put under anesthesia to do the procedure.  Even if Logan does have DRD, Dr. Marks would not put him on any medication at this young age.  He said he would do the spinal tap if we wanted him to, but Cliff and I decided against the test. 

I was very encouraged that Dr Marks feels Logan's symptoms are not interfering with his ability to function on a daily basis and there is no need to medicate him.  Some doctors are so quick to medicate even when it is not needed, but he feels it is important to let Logan do things naturally at his own pace. 

Dr. Marks thinks Logan will be walking in the next few months and does not feel it is necessary to brace him at this time.  He decided against both braces and encouraged us to just keep working with Logan at home every day.  This is where his opinion differs from Our Children's House (the therapists).  We have decided to go with his opinion and at least let Logan try to walk on his own and strengthen his ankles before putting braces on his feet.  If he struggles and we see that he needs them, then we will revisit the issue. 

I asked him about the ECI (early childhood intervention) and he highly recommends the program.  His opinion is that it will help Logan to have a therapist come to the house and work with him in his own environment.  I tend to agree with him and I am going to switch him from Our Children's House (Outpatient Program) to the ECI program next week. 

In 6 months, after Logan is walking, we will go to the Spasticity Clinic.  There the Neurologist, Speech Therapist, Occupational Therapist, and Physical Therapist will all examine Logan and review his progress to make a final diagnosis.  At that time, they will determine if it will be necessary to do a MRI or a spinal tap. 

We are extremely grateful that everyone will be on the same page and working together to help Logan!  God is good!  He knows exactly what Logan needs and exactly what we needed to hear.  We have an extreme peace about the future and we are so thankful that we went back to the same Neurologist. 

Thanksgiving

On the way home from the Neurologist, a guy ran into the back of us while we were stopped in traffic! 

LOVELY!  Just what we needed to start our Thanksgiving holiday, a WRECK!  We are all fine, except the truck, but it was not Cliff's fault....so that's fine too! 

Our best friends from San Antonio came up for Thanksgiving.  They finally got to meet little Logan!  It was great to see them and Corbin had a blast playing with their kids! 

We met in 1997 before either of us had kids and Cliff and Troy were both police officers.  We looked at old pictures and reminisced about  the good old days.  Wow, how things have changed!   Cliff and Troy have both moved on to new careers and our kids are growing up so fast. 

 It was a great Thanksgiving!  We have so much to be thankful for this year! 

SAME PAGE.....PLEASE?????

I have so many things going through my brain right now....I thought what better time to blog....NOT!

Anyway.....I am thankful, but so frustrated at the same time.  Is that possible.  No answers...just excuses...well kind of.  Wednesday night my pediatrician called me and left a message with his cell phone number to call him back.  That in itself is a blessing....what doctor calls you personally and gives you his cell phone number to call him on his day off.  God answered my prayer in regards to personal attention from my pediatrician.  To make a long story short, after his conversation with his Neurologist "buddy", he said I need to call Logan's Neurologist and talk to his nurse about my concerns. 

Meanwhile, I went back to Logan's therapists today and they are still adamant that it is not CP.  However, they are so scared to call the doctor to tell him.  Nobody wants to step on any toes or should I say egos!  Everyone I have told that he got a CP diagnosis thinks it is incorrect ,except.....of course, the Neurologist.  I am stuck in the middle of this mess!  So frustrating.  So finally I convinced the physical therapist to write up all his symptoms so I could fax the letter to the Neurologist.  Hopefully this will do the trick and he will see me again.  What am I going to tell him????  I think you are wrong and try again. LOL....God help me! 

I did get the name of another Neurologist clear across town for a second opinion.  The problem is, everyone, including the therapist, is telling me that Logan's Neurologist is the best.  What?  Guess it can't hurt to see another neurologist.  However, I have a feeling that even if I get another Hemiplegic CP diagnosis, they(therapists) are going to fight me on it.  They just disagree on his treatment and here I am caught in the middle with no clue how to help Logan!  What a mess.....Please pray for all the doctors and the therapists and insurance company (lol) to get on the same page!  Thanks....and now I am done venting.  AMEN!

Second Opinion and A Blessing!

I am praying that my pediatrician is able to get me in this week for a second opinion with his Neurologist friend.  Logan’s pediatrician as well as his therapists feel that he may need further testing before a concrete Hemiplegic Cerebral Palsy diagnosis.  Whatever the diagnosis, I know that my Heavenly Father is watching over my sweet Logan. 

I am so thankful the Lord put me in the small group He did at bible study.  If I am truthful, I did question God's selection of newly married and young single girls that he placed at my table.  Of course, I expected to be with ladies my age with kids, but GOD knew exactly who I needed to cross my path.  What a blessing they have been to me…….so compassionate and encouraging.  I am so grateful I sat at table #8! J

Last night at bible study, I reluctantly opened up about the financial burden of Logan's therapy and the stress of the medical expenses that come with having a special needs child.  One of the girls told me about ECI, but I quickly dismissed the idea based on the fact that we have not qualified for any other government funded program.  Thank God she was persistent and sent a text to her friend (who has a son in the program) for the details.  I took the information (thinking for sure I would not qualify) and called them this morning. To my surprise, it looks like they will be able to come to the house to see Logan for therapy at a fraction of the cost we were paying for Our Children's House at Baylor-Grapevine.  What a blessing!

I am absolutely positive that God put Kim at my table 8 weeks ago to share this information with me last night.  Thank you Lord for the way You work!  I was on my knees the night before (literally on the floor in my bathroom and yes, it was clean), praying for a financial miracle!  I prayed "Lord I don't know how to pray because I don't know how to fix this, but I do know you are God and you can do immeasurably more than we ask or can imagine, so I pray that you intervene."  He did……and in a way I could have never imagined or figured out on my own!

I am so glad we have Him to lead us through the dark when we can't see the light at the end of the tunnel. He has NEVER let me down when I cry out for His help!  The Lord has brought so many great people into my life in the last couple weeks (Susan, Casey, Bethany, Jen, Kimi, Lacey, Kim, Jan, Angelic, and the list goes on....) and they might not even know that they touched my heart during this hard time in my life!  I am so grateful for His divine intervention and so thankful God knows who and what I need at the perfect time in my life!!!  Life is good......GOD YOU ARE GOOD!

Psalm 34:17-19

¹⁷ The righteous cry out, and the LORD hears them;
   he delivers them from all their troubles.

¹⁸ The LORD is close to the brokenhearted
   and saves those who are crushed in spirit. 

 ¹⁹ The righteous person may have many troubles,
   but the LORD delivers him from them all.

Logan's visit to the Neurologist.

Logan went to Our Children's House of Baylor-Grapevine for his 1 year NICU follow-up in August.  This is a place that has followed his development since he was released from the hospital.  They check to make sure he is hitting his developmental milestones within his adjusted age and make recommendations for needed therapy or specialist consults.  Logan has been seeing a Physical Therapist since his 6 month check-up due to some concerns with his muscle tone.  In August, they also had some concerns with his crawling movement patterns (Atypical movement) which caused him to move in a sort of "jerky" or "robotic" way.  They recommended that he see a Neurologist due to his trauma at birth.

When Logan was born, he had what the doctor's called an Intraventricular hemorrhage (IVH).  This is bleeding into the fluid-filled areas (ventricles) surrounded by the brain. Infants born before 30 weeks of pregnancy are at highest risk for such bleeding.  This is because blood vessels in the brain of premature infants are not yet fully developed and are extremely fragile.  Logan had a grade 1 bleed on his right side. This is the lowest grade as the bleeding occurs just in a small area of the ventricles.  Grades 1 and 2 are most common, occurring in about 75 percent of babies with IVH.  I was told by his doctor there was a chance that it would cause some developmental delays, possible learning disabilities, and maybe even Cerebral Palsy.  Often, there are no further complications so I was pleased that the bleed was not worse and took this as a blessing.

I called in August for the appointment with the Neurologist and was not able to get in until November 2nd.  This doctor is supposed to be the best, so I am thankful that we waited.  However, three months of waiting to see if Logan actually has CP was difficult.  I always hoped for the best, but I kind of knew in my heart what the outcome was going to be as I have watched him continue to develop.  He does not like to use his left hand as much as his right hand, keeps it in a closed fist position at times, and seems to balance most of his weight on is right side.  I have been diligently praying that God open my heart to accept whatever the outcome may be, and that is what happened when we went to see the neurologist yesterday.

The IVH on Logan's right side of his brain has affected the left side of his body.  He has Hemiplegic Cerebral Palsy on his non-dominant side (left).  Logan has a mild form of CP and I am confident that with extensive therapy and continued support from his doctors, he will lead a very normal life.  Cerebral palsy can’t be cured, but treatment will often improve a child's capabilities.   Many children go on to enjoy near-normal adult lives if their disabilities are properly managed. In general, the earlier treatment begins the better chance children have of overcoming developmental disabilities or learning new ways to accomplish the tasks that challenge them.

One of the side effects of CP is seizures that many times don't show up until age 2 or 3.  Please diligently pray that Logan will not develop these seizures.  Also, pray that he will continue to thrive in his therapy so that he can live the independent and joyful life that every parent wishes for their child. 

My prayer for Logan is that he will grow up to love and honor the Lord and use his story to share his testimony to all those he encounters.   I know this will be a struggle for him and our family, but I have great confidence that God will provide and protect us through it all!

Look how far I've come!!! The proof is in the pictures. :)



Walking His Path

On November 6th, my sisters and I will be participating in the Brain Tumor Walk for the NTBS (National Brain Tumor Society). The NBTS supports families by providing comprehensive support programs for patients and their loved ones.  They also fund results-driven research to accelerate the discovery of new therapies for adult and pediatric brain tumors.  Our team, Walking His Path, was named after my mom's favorite verse.

Proverbs 3:5-6 "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him and He will direct your paths."

My sisters both wrote beautiful posts on their blogs, Captured Moments and The Minivan Diaries, about the memories they have of our mom and the faith she showed through her struggle with brain cancer. So, I thought I would give it a shot as well. However, my numerous attempts at writing about that hard time in my life were unsuccessful. I could not get through the first few paragraphs without being overcome with sadness. I think it is because I am missing her now more than ever before. As many of you know, this past year has been a very difficult one for our family. So, I decided to just be honest and share from my heart where I am at this point in my life. She was such a beautiful example of how to live your life with grace and faith no matter what difficulty you face. As I watched her fight for her life and struggle with this disease, I was amazed by her growing walk with the Lord.

My mom gave me the book, 31 Days of Praise, before she passed away. This was a book that we read together for encouragement. I turn to this book quite often and read it whenever I need a "pick me up". On July 14, 2009, I had a terrible day at work. I was stressed about a new project that was not going well, I was 29 weeks pregnant, and I was completely exhausted from the workload. That night I read from 31 Days of Praise. I still remember reading this passage and thinking, "Wow, that is powerful...I wonder what God has in store for me?” Little did I know….it was so much more than my insignificant work stress! It read:

"Father, I'm so delighted that You are both loving and sovereign, and that You cause all things to work together for good to those who love You, to those who are called according to Your purpose. So I thank You for each disturbing or humbling situation in my life, for each breaking or cleansing process You are allowing, for each problem or hindrance, for each thing that triggers in me anxiety or anger or pain. And I thank You in advance for each disappointment, each demanding duty, each pressure, each interruption that may arise in the coming hours and days."

I closed the book, said a prayer, and tried to fall asleep....but something was bothering me. I realized I had not felt the baby move all day. This was not normal so I got up and drank a glass of juice, but still nothing. I was a little worried, but thought he must be sleeping and I was just overreacting.

The next morning I woke up on my stomach. This frightened me and I had a gut feeling something was not right. I ate breakfast on my way to work, but still felt nothing. I called my doctor when I got to work. Her nurse told me to eat some candy, drink some juice, and do a kick test. I found an empty conference room and lay down on the floor to see if I could feel him move, still nothing. I began to panic at this point, but just kept telling myself that I was overreacting. Almost embarrassed that I was so panicked, I called the nurse back to let her know he still was not moving. She calmly told me that I needed to come to the office for a sonogram. To make a long story short, there was little to no "cord flow" and I was admitted to the hospital immediately.

Logan was not getting any nutrients from me, had not grown at all from the sonogram a week prior, and was not getting the oxygen he needed to live. He was totally unresponsive to any stimulation and I was told he needed to be delivered by emergency C-section immediately. It is a true miracle that he is alive today. Only weighing 2lbs.2oz, he was unresponsive for 5 minutes as the NICU team worked on him. He was placed in an incubator under bright lights, intubated, and loaded with numerous wires and IV’s to keep him alive.

God placed it on my heart to know that something was wrong and I followed His voice. I will never forget Logan’s doctor coming to my bedside to give me a report on his status and telling me that if I had waited just waited 2 more hours, “we would be having a completely different conversation.” Even though I blamed myself for not noticing earlier, it was clear that God had worked a miracle through me!

I was brought to my knees that afternoon, but God showered me with His grace. I hadn't felt helplessness like that since the day my mom was diagnosed with brain cancer. Even though that day would be the beginning of the hardest time of my life, I was filled with a peace that surpassed all understanding. A peace that I believe my mom experienced during the fight for her life. It was that night in my hospital bed; I realized why I had gone through the loss of my mother. I would never have been able to draw on her life experience and example of a faith driven life had she not been diagnosed with cancer. It prepared me for the series of trials I was about to take on; a series of trials that I had just read about the night before in the book she gave me. God gave me the strength to make it through that night and he used her to do it. It was so powerful; I almost felt her sitting there right beside me in my hospital room.

My mom was an incredibly strong woman and had so much faith through such a terrible time. She was a witness to all those around her. I remember sitting beside her on her bed as she encouraged me and shared with me all she was learning as she studied the bible. She had such excitement in her voice and light in her eyes when she spoke about what God was doing through her experience. It was so apparent to everyone around her that she felt a true love for the Lord and pure joy in her heart. She never became angry or bitter about her situation, but used it to share God's love with others. I remember her quoting,

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

She would say, "Elizabeth, this is a terrible thing I am going through, but I would not change a thing. Of course I will miss you girls if He chooses to take me home, but I would not take any of it back because then I would not have learned what I have about the Lord." What a powerful statement! I am not quite at the point where I can consider all my trials pure joy, but I am grateful things turned out the way they did. I have seen God work in my life and do immeasurably more than I could ever hope or imagine. I have learned more about my Heavenly Father in the past year than ever before, and my walk with him gets stronger every day.

As we wait for results from the Neurologist concerning Logan’s future development, I know our journey is far from over. But I take great comfort in the fact that I have the Lord to direct my path, and even carry me down the path when I feel I can’t walk anymore. I truly believe that every trial we experience is a platform on which God reveals Himself, showing His love and power, both to us and others looking on. What a blessing it was to see my mom walk his path throughout her life!

On November 6th, my sisters and I walk for her and all she represented. We walk to show our support to those traveling down the difficult path that brain cancer brings. My prayer is that they will find the love and support that Jesus Christ can bring during their struggle. If you would like to walk with me or donate to the National Brian Tumor Society, click here.