Author Archives: Chris Wheeler

My lovely wife posted this and I had to shamelessly steal it and share it here for everyone who might still be reading my blog.  This means so much to me right now, I can’t even put it in words.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this……

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

There are really two reasons I’ve been so silent out here in blog-land.  I’ll cover them separately and try not to be too wordy.

McAfee Family Protection

For the last 7-ish months, the team at InternetSafety.com has been quietly working away at the largest project we’ve ever tackled (and considering we conquered the entire continent of Australia, that’s saying something).  We couldn’t talk about it for a long time, but this past Tuesday night at around 10:30pm all our hard work came to fruition when McAfee released the McAfee Family Protection to the public.  Try a 30-day trial if you’re not sure it’s for you, but this is just another way that InternetSafety.com is helping to make the web safe for families.

I will say this about the project.  We have a great team.  Despite the fact that we spent more time every day with each other than our families over the past few months (and even a few nights), I can say that we still like each other afterward and can still stand each other enough to want to get together outside work (like lunches almost every day and a gaming party tonight).  You don’t get that with every job.  Go team!

Rebekah Anne

I can honestly say that this has been the most challenging 8 months of our lives yet.  Since my last update, Rebekah has begun Physical Therapy and Occupational Therapy (yes, she has an occupation–it’s “baby”).  While she still has a long way to go (she still can’t sit up, roll from tummy to back, or crawl), her progress has been amazing (she now rolls from back to front, reaches for and fumbles around with toys, plays while strapped into her high chair, can sit up assisted, and has two teeth–not therapy-related).  Her neurologist checkup yesterday went well and Dr. Janas was pleased with her progress.  She’ll have another MRI in 3 or so months when she turns 1 and a followup/checkup after.

We know God has His hand on her.  Pray for her continued progress with the therapy.  It has been an amazing blessing that Valerie has been able to stay home with the girls since January.

Work is still busy and exciting, but not quite as crazy as the past few months and we’ve been learning a bit of a routine with Rebekah (although, she still sometimes just decides to get up at 3am and not go back to sleep until 7), so I will try to be more faithful with updating the blog (even if it’s just using a few spare minutes to post a stupid link or picture).  Thanks for being patient over these last few months.

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’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).

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.