Chris’s Blog

We got a call from Rebekah’s neurologist office with the results of last Friday’s CT scan.  She had to have a scan of the sutures in her skull (the cracks between the plates in the skull) to see if they were starting to prematurely fuse.  This would be bad because it would keep her brain from growing any further.  The “fix” for this problem is a pretty extensive surgery where they separate the plates by drilling/cutting.  Afterwards, the child has to wear a cranial helmet.

Praise God her sutures are normal!  Of all the things we have to worry about, major head surgery was not one of the things I wanted to add to the list.  So, we’ll keep pressing on with testing to learn more about what we might have to expect and we’ll keep thanking God for providing this answer to prayer!  It has amazed us the number of people across the country that have been praying for little Rebekah.

Oh, and next week, we start all the paperwork to get enrolled in “Babies Can’t Wait”–the Georgia program for early intervention physical therapy.  As a little aside, last night, she grabbed hold of her paci and put it in/pulled it out of her mouth a few times.  She is also kicking her legs over, but hasn’t figured out she can keep going and roll over–just yet.

I don’t read much non-fiction.  Lately, though, I’ve been on a bit of a political kick and I’ve always enjoyed history, so why not combine the two?  I just finished reading Hamilton’s Curse by Thomas DiLorenzo.  Wow!  Warning: If the only American “history” you’ve studied has been provided to you by our government’s schools, then this book might turn some of what you took for granted on its head.

I’m not going to say the book was easy to get through.  The material was amazingly detailed, fantastic, and engrossing, but some of it was so very challenging to read.  I have to admit I dozed off a few times while reading it.  Don’t let that detract from the book, though–that was more a failing of me and the fact that Rebekah still doesn’t sleep very well.

I can’t even do justice to what Mr. DiLorenzo presents in the book.  From the fabrication of “implied powers” to the General Welfare Clause to how Lincoln was one of the worst Presidents our nation has seen, the author presents Hamilton’s America from the early days where he battled daily against Jefferson (his arch political rival) to long after his death as his ideas were implemented by the power elite in Washington.  It is a fascinating journey of how we came from an affiliation of self-governing states to the bloated, bureaucratic, overbearing central government we have today.

If you have any interest in liberty in America, American history, and politics, you owe it to yourself to read this book with an open mind.  You might just come out of it with a different opinion of Alexander Hamilton than our country’s public (and private) schools have conditioned you to believe.

I’m going to let my wife provide this blog entry.  She did a fantastic job of getting all this down on “paper” and communicating what we do know (and what we still don’t).

Hello friends and family  ~  Thank you sooo much for praying for our family!!

We got to go to the Neurologist this morning to have them read the MRI results and explain what has been going on for us.  She took the MRI results and went through them line by line and explained everything.  Things mostly look good!  Praise the Lord!

She said that there are no tumors, clots, or signs of stroke in the brain.  There is a “slight simplification of the gyral pattern” in the brain.  Which means that the folds are not as complex as they could be, but the doctor said that could change.  The main core of nerves running from the brain are all fine!  There is a lack of myelination in the brain (fatty insulation around the nerves that help send the impulses), but that could develop later too.

We are going for blood work next week for genetic testing for Lissencephaly.  If Rebekah does have this disorder, we may be looking at seizures in our future.  They will also do some metabolic testing to look for enzyme deficiencies.  She may be deficient in some enzymes that help her break down her food to produce the energy that is needed to help her grow.  Certain enzymes can be supplemented.  She also ordered another CT Scan for the skull.  Her soft spot is already very small and she is concerned that the plates in her skull have already begun to fuse.  If they have fused, we will have to do surgery to open them so the brain will have room to grow.

Rebekah will go back for another MRI at the age of 1 year so they can compare the growth of the brain, the gyral patterns, and the myelination.  We will go for another check up with the Neurologists in 4 months.

The doctor said that Rebekah looked good in her physical development.  She said that she is fine with head stability and other developmental milestones.  She mentioned that she thought her trunk control was a little weak.  She gave us a prescription for the Georgia program called Babies Can’t Wait.  They are a program that will come and work with Rebekah and do some therapy with her to make sure she is reaching her milestones.  Chris mentioned that Rebekah fights sleep SO hard.  The doctor said that people with Lissencephaly do have sleep disorders - so that may be connected.

She also said that her crossed eyes are a totally separate issue, so we are keeping our appointment with the ophthalmologist on the 27th.

Praise the Lord for His work in Rebekah’s life.  We are so appreciative for you and for your prayers for our family.

So, we still have a long road and lots of unknowns, but we know God has his hand on little Rebekah (and all of us).

We still won’t know anything until her pediatrician gets the results and gives us a call (and we may not really know much until her neurologist appointment), but the MRI went very well. It’s always a bit hairy with babies since the only way they’ll be still for 30 minutes is to sedate them, but the doctors and nurses at Scottish Rite are awesome and Rebekah was a trooper through it all.

Thanks again to everyone who wished us well and prayed for us. We’re leaning on God’s promise to be there for us and the fact that Rebekah was “fearfully and wonderfully made.”

I haven’t blogged in a while, but I can’t sleep right now, so I get to ramble on here.  Things have been a little crazy.  Rebekah is 4 months old now and definitely nothing like big sister Kayla (which is fine).  Kayla would practically put herself to bed and was sleeping through the night at about 3 months.  It’s been an interesting few months.

When she was about two weeks old, she began what we would later figure out was reflux, but until we did and got it diagnosed by her pediatrician, she screamed and squirmed every night for about 3 hours until she wore herself out.  She is now on Zantac and the reflux is much better.  Since then, we’ve been through “the crud” causing puking and eventually a minor ear infection (nothing 10 days of Amoxicillin couldn’t clear up) and now she’s on Albuterol treatments a few times a day as needed.

Tomorrow is a big day for little Rebekah.  At her 4-month checkup her head was measuring at a very low percentile.  She has always had a small head and it was even something they were concerned about before she was born.  Valerie had multiple ultrasounds and even a fetal MRI, but the doctors all gave her a thumbs up.  Rebekah’s pediatrician decided to send us for a head CT at Children’s Healthcare at Scottish Rite.  Due to some irregularities that showed up on the CT, she goes for an MRI (again at Scottish Rite) tomorrow.  The hard part is that due to the need for the patient to be very still, they have to sedate her (which is a bit scary).

Her pediatrician is supposed to get the results the next day and will call us, but we don’t have an appointment with a neurologist until 2 weeks later, so the waiting might be a bit tough.  Amazingly, the neurologist office they referred us to has 7 pediatric neurologists in the office.  SEVEN!  We are truly blessed to have some of the best pediatric facilities in the country not even an hour away.

So, we’ll be praying for little Rebekah tomorrow (as we have been all along).  Despite a radical change in how much personal attention she receives now, Kayla has been awesome throughout it all.  I will try to update about Rebekah when possible.  These next few weeks will probably be just as crazy as the past few have been.  On top of all that, we have two insanely huge projects in the works at the same time at work, so it’s no rest for the weary there either.