Still a work in progress!

About a week ago we went to my friend Bethany's house.  Her little boy is about the same age as Logan (adjusted age) and he started walking last month.  I think Logan was taking notes and watching him because when we got home, he stood up and took his first steps.  Since then he has been practicing and can take about 6 or 7 steps at a time now. 

Here is a video....I am so excited that he is even able to do this because his physical therapist said that she did not think he would be able to walk without ankle braces.  Praise God from whom all blessings flow!!!  Logan is such a fighter and a blessing to all those around him!

"I prayed for him 18 times last night."

Corbin is so sweet!  I am so proud of him and I can't believe he is growing up so fast.  I enjoy his company so much and I love that he still enjoys my company.

Every day when he gets home from school he says..."So mom how was your day?", and he really is interested as he listens to everything I did that day.  I love it.  And you know how when you ask a kid what they did at a friend's house, they usually just say nothing and shrug you off.  Not Corbin.  He gives details of every war game, video game, trampoline jump, or hide and go seek game he played.  I love that he likes to talk to me. I'm pretty sure that will end soon though as he enters his teenage years. So, I will just enjoy it while it lasts.

He has such a sweet heart that is filled with so much compassion.  I love that he sits on the couch next to me and pats my shoulder or rubs my back.  He tells me he loves me at least three times a day!  He always tells me I look beautiful, even when I know I don't look my best.  He loves to buy me jewelry (even if it is out of the gumball machine sometimes) and he likes to go through my jewelry box and pick out the "diamond" I should wear.  I'm not sure why he is obsessed with digging for gold and searching for diamonds, but he is. :)

He is such a great kid!  I know that he always strives to do his best and the right thing.  He is so honest too.  When he does something wrong or gets in trouble at school, I think he punishes himself more than we do.  I am so thankful that God gave me such special boys!

When Logan was rushed to the hospital by ambulance for his breathing difficulties in October, Corbin was so scared.  I asked the doctor at the clinic if Logan would be okay in front of Corbin on purpose.  The doctor explained that it was serious and Logan needed to get on oxygen because he might have pneumonia, but that he would recover just fine.  Cliff took Corbin to Sara's and I followed the ambulance to the hospital.  That night I think I talked to my dad and Cliff talked to his dad, but we were so busy I never really called anyone else.  I did not give it a second thought and called the girls in the morning and Logan was released.

When we picked up Corbin the next day, this was our conversation: (sweet, but broke my heart)

Me: "So, how did you sleep?"

Corbin: "I slept terrible."

Me: "Terrible?  Were you uncomfortable?"

Corbin: "No, I was worried about my brother.  I did not want to have a funeral for him."

Me:  "Honey, you heard the doctor say he would be fine.  He just needed some help breathing.  He is doing just fine...see he missed you."

Corbin:  "I know, but sometimes doctors don't tell you everything because they may not want you to know." (Ugh....I guess I need to watch what I say in front of him)

Me: "Oh honey, I think in this case he told us everything and Logan is just fine.  I am so sorry I did not call you and reassure you that Logan was okay."

Corbin:  "That's okay.  I knew he would be okay because I prayed for him 18 times last night."

Me: "Wow, 18 times!  That's great.  I am so glad you talked to God about your concerns. You also could have told Sara or Brian that you were worried."
 
Corbin: "okay....but mom?"

Me: "Yes?"

Corbin: "I don't think Sara knew anything either.....next time you might want to call her too."

Me:  "Okay, I will keep that in mind, but hopefully there won't be a next time."

Bless his heart!  How selfish of me.....It just never occurred to me that he had become such a sweet young man.  He was a concerned big brother who cared more about what was going on with his baby brother than playing with his toys or watching cartoons.  That was such an eye opener for me!  He is not a baby anymore.  He understands!  He was worried and he prayed!  I love him so much....what a sweetheart!  He is growing up so fast and I am so thankful that he already has a love for the Lord!  What a blessing.

When we went around the Thanksgiving table to say what we were thankful for this year, he said, "I am thankful for my little brother and that he made it through this year and for his health!”  What a little grown-up.....with such a beautiful example in his life of what God is capable of doing!  He saved our little Logan over and over this year!  Thank you God for your blessings.  Here is a video of them together.

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!