Monday, August 22, 2011

From surgery to school- the past 6 months

Hello again! We have surfaced again after dropping off the face of the earth once more with life too full of blessings to sit down and share them! Most importantly, thank you to all of you who have asked for and prayed about Brady's surgery and recovery. We were given a massive measure of peace that passes understanding to feel so confident in His care!!! Surgery was shorter than expected, he was out of the helmet sooner than expected, and doesn't have another check-up til 2012! God is good!
Here is a pictorial recap...

This was from Brady's 3 month session before surgery at 4 months.

This next one shows the shape of his head as it began to show the need for surgery.
This was the day before surgery in February. We had a fun day, and wanted the latest images of him before the unexpected months that would follow.
The long day in pediatric ICU after surgery. He stayed here (with Mac and I sleeping on one chair beside his bed) for 24 hours before moving to a recovery room. This was the hardest day.
Only 2 days later, in spite of his condition, he was smiling at nurses, and seemed just like himself. Praise God for the ways he shows his love!!
March and April didn't slow down for us. But more blessings followed. Canaan was able to lead singing at worship following months of leadership training in song leading and prayer. We were so proud of him, and he was proud of himself!
Our family's only picture on easter! We enjoyed our traditional lunch at Aunt Terri's house. We were allowed one hour per day out of Brady's reconstructive helmet, so we had the helmet off for the holiday at church.
Our nearest and dearest joined us for the March of Dimes Walk for Babies in Brady's honor. The "Bell's Helmet Heroes" team walked in helmets of all kinds, as Craniosynostosis is considered a birth defect, and that is what Mac works daily to prevent. Thank you friends and family for your support!
Mac and Brad ran in their 2nd 1/2 marathon this year, and both had injuries either prior to, or after, but they both completed the race. No announcement of another Bell baby this year though....
Canaan competed in basketball, soccer, and baseball. He is such a little all-star. Here he is in action.

This is the helmet head. It started out white, but looked too institutional so we went to an airbrush artist in Cabot to go blue. It eventually had football helmet stripes down the middle, and his monogram on the front. Little Boy Blue.
This was our facebook profile forever since we were poor status updaters....
Here you can see his incision. It was a zig zag across his head.
Fun with mud after a rain!

Canaan getting his diploma from kindergarden graduation! His face says it all!!
We hosted a going away party for some friends, and the kids played on the slip n slide. This picture looks like we are camping, but no...just the backyard in Arkansas. :)
Our beach vacation!!! This was the only family picture we have because it began to rain and we all grabbed camera equipment and ran under a beach tent for cover. This is also obsolete now because Becky added another member of the family now! (see below)
2011 was the year of the wedding. (Our chinese new year name) Cousins Jamie Graul and Brett Fielder each had a wedding this summer, then Becky's in July. This is Macy with Jamie before her ceremony.
Most all the boys at Brett's wedding waiting for the ceremony. Such a fun time!
Macy learned to LOVE weddings (where did she get that?) so she roll played bride all summer. Her favorite movies right now are Father of the Bride and My Big Fat Greek Wedding. This was her marrying a plant stand in the studio.
Announcing Uncle Justin!!! Becky married Justin BELL and didn't have to change her last name! We love him, and don't think they're related at all..... :)
Their wedding was in our home on July 16th, and it was an honor. A wonderful day. More pics of that day in another post.
Studio Bella went on location to Aunt Patty's for this shoot with her family. She is battling cancer after being diagnosed in December of last year. Please lift her up to the Great Physician for healing!!
The sisters with their old lady glasses.
Momo and Mama with Brado Potato. He is a hefty little guy, so we nick-named him tater tot.
Canaan doing his stunts off the diving board. Look at those ribs!
Macy got to meet my Barbies that Mom and I had saved for 30 years for just this moment. She was in heaven, and Barbie, of course, got married a lot.
Brady meeting mom's garden. It is like a member of the family.
I was obviously not prepared for pictures, but the neighbors offered so, I joined in.
Brady is eating solid foods, has 6 teeth, and crawling. He wants badly to stand on his own, and at this rate that is not far away.
Canaan's first day of 1st grade!
Macy's first day of PK3.
Well, that is the high points so hopefully I'll post some more before Christmas!!! Thanks for your love and support of our family.

Thursday, January 20, 2011

Surgery slated for February 21st

Wednesday 1/19 we met with the 2nd surgeon who will assist with Brady's surgery at ACH. He is Christian Kaufman, a neurologist, who will be back-up (as we understand it) in the event of any complications with the brain during the skull surgery. He said it is a very straightforward surgery, and provided more details about anesthesia and recovery.

We learned that blood donors can begin that process 2-3 weeks before the 21st, (rather than 24 hours before) and hopefully we will have more details about that soon.

Brady has to be healthy a full week before surgery or they will push it back, so we request prayers that he will not have even a runny nose at that time, and we can proceed!

He will be in ICU for 24 hours after surgery to monitor blood loss each hour and continue transfusing if necessary, then about 3 days more in a recovery room.

We can expect to see some facial swelling even to the point of his eyes swelling shut, but that is normal after surgery and should go down by day 3.

His pain tolerance should be high as infants don't have the learned responses to pain that adults do, but they will do what is necessary to keep him comfortable during recovery.

We are pleased to know a date so there is an end in sight, and pray that in all things, God will be glorified!

Mac and Amy

Thursday, January 6, 2011

Brady Bell

I have not even had the chance to announce Brady's birth on our blog yet, but not only is he here, but practically perfect in every way. A jewel of a child, and such a joy to our lives. We couldn't be happier. He now faces an extensive surgery on his little head, so we request your prayers for our little boy.

Here is the long version of his recent diagnosis.

The result of Brady’s appointment at ACH on 1/6/11 with Dr. Honnebeir is as follows (quotes are her descriptions to us).

Brady does have Craniosynostosis with a Sagittal suture closure. The sagittal suture runs from the top of the head to the middle of the back of the head. This condition creates a classic “boat-shaped” head.

This is essentially a “birth defect”, yet his condition is “mild” which means only that is has been caught early in the process, and his head is not already mis-shaped.

This is “not a self-correcting” condition, and does require surgery. If not treated, his brain function would not be affected, but his skull would deform as growth occurs. In his case, with the sagittal suture closure, his forehead would enlarge to allow his brain to grow, but there would be no expansion from side to side. (i.e. the narrow “boat” shape). His soft-spot has already enlarged to allow for brain expansion.

Our next step is a CT scan probably on the 11th, to be read by a neurologist, Dr. O’Brien on the 13th, mainly to get the best picture of his condition prior to surgery.

The surgery needs to be done around 4 months of age, which is February 18th for Brady. There is no date scheduled yet, as Dr. Honnebeir and a 2nd neurologist will perform it. There will be about a 4-inch horizontal incision across the top of his skull in a zig-zag formation. The zig-zag is so that his hair will part more naturally afterward. Dr. Honnebeir will open the closure and scrape the sides of the skull all around for more symmetrical re-shaping.

The greatest risks include bleeding. He will need a blood transfusion during the surgery. Family members may donate blood, but no more than 24 hours before the procedure.

Technically, risks also include damage to the brain, but Dr. Honnebeir has never seen that occur. Ever.

The surgery we elected is about a 4-hour operation and will be more “middle of the road” regarding the intensity of the surgery. This option is invasive, but controls the risk of blood loss and requires only a 2-3 day recovery in the hospital.

Laparoscopic options lessen the surgeon’s control of the cuts and could cause a prick of the sinus drain of the brain. The more invasive procedures include removing pieces of the skull, reconstructing, and replacing them, requiring significant blood loss and longer recovery.

Brady will have an orthotic reconstructive helmet to wear for 2-3 months 24/7, to mold and shape the skull to the appropriate shape. This is a laser-measured model, custom fit, and designed for Brady. It can be scraped inside to expand and allow for growth as it occurs in those 2-3 months. The new shape of his skull will fuse normally. He will have routine check-ups for years to follow.

Misc. notes:

  • This is not hereditary that they know.
  • He will still be able to participate in contact sports later in life if he so chooses.
  • Our referral to Dr. Boop at Semms-Murphy clinic in Memphis is encouraged as a second opinion in Memphis if we so choose, but close proximity to home is to be highly considered due to Brady’s recovery and the multiple trips to the hospital in the coming years.
  • Dr. Honnebeir (pronounced Oni-Beer) is new to ACH (about 6 months). She is polish and trained at Cornell and Penn. She has performed hundreds of these surgeries during her fellowship, practice, and missions. She was hired at ACH to build a better craniofacial surgery department within neuroscience, as ACH is lacking surgeons. We feel confident in her ability and knowledge, and have been extremely supported by her staff.
  • We are thankful and so generously blessed by all the work done in expediting this process, the prayers, fasting, and words of encouragement on our behalf by all of our friends and family, and know that the Great Physician will be healing our boy! We love you all.

Tuesday, October 5, 2010

What have we done all summer?

...and why has it taken this long to post? Life is full and fantastic, so this will be the short version of it all.

For the grandparents, today was Grandparents day at school, and I was your representative, so here is a video of Canaan's song to you.

Since the beach, Gran was diagnosed with pancreatic cancer and passed into the healing arms of God in August. We are all so grateful to have had our week in Gulf Shores of quality Gran-time, but we really miss her.

The baby is due any day now!! Officially 10/10/10 but we will see. That is only 5 days away!!!
Canaan started kindergarten at his brand new elementary school and loves it. There is a photo gallery on facebook to check out the first day pics there.

Macy turned 3 yesterday! She had a party at River City Gymnastics with all her friends, and is so proud to be 3, and almost a big sister. She can also use the bathroom like a big girl (except for the occasional #2) and we are very thankful for that!

I turned 30 this summer, which was pretty non-eventful due to the fact that Mac and I spent all our money on remodeling our bathrooms. We have done a lot of the work ourselves and are pretty proud! Our finishing crews are almost done, and it should be completed tomorrow!
Branson vacation and Razorback games galore, we always have fun on the road!

Our next adventure is bringing baby Bell into this world soon, and Lord willing all goes well, I will not be too long in posting again!
It was on this day 9 years ago, that I said, "yes" to the most wonderful man in the world. Thanks for asking me to be yours, Mac, and I would give you the same answer again and again!

Love you all!
Mac, Amy, Canaan, Macy, (and baby nickname, Rufus Cooter) Bell

Monday, June 21, 2010

Beach Bells 2010 and the oil...

This is our family on the last day of our annual vacation in Gulf Shores!  We had a great time and Mac's great-granny even braved the trip with us and was so much fun!  We couldn't make it to the sand with the camera because there was a thunderstorm looming and sprinkling on us for this picture, so this was outside our patio door. 

This begins the BP oil disaster pictures.  All of these are from only one day, Sunday, June 13th when the tar washed up the worst.  The rest of the week we did enjoy the water, and hope that this crisis will not linger too long.  You will see effects here.
The shoreline.
This is best described as melted tootsie rolls on the sand, that stick to your feet, buckets, chairs, etc.  Yucky. 

See?  Tootsie Rolls is the kinder description....

We saw more dead crabs on the sand this year than ever.  Coincidence? 
An oily feather. 
The clean up crews were out most every day, and this was the scene to the immediate left of our shade tent. 
It is amazing to see all the life that the Lord has created to expand further and deeper than we can know.  And in turn, amazing to see how humanity can mess it up.  Our prayers are with and for the gulf coast and its and out of the sea.