Saturday, May 11, 2013

THE 3 "H's"...


Yesterday, Isaiah was discharged to HOME straight from PICU, and we arrived at our house around 5pm.  This was a short stay considering he had major spinal cord surgery!!!  Thank you for praying for a speedy recovery.  Isaiah is doing relatively well.  He has a moderate amount of pain, but it is well-controlled with Tylenol.  He is having a tough time standing up straight due to pain and is unsteady on his feet, which makes us very nervous because he is at a higher risk for falls.  Thankfully, he didn't lose any feeling to his legs or nerve innervation to his bowels or bladder, which is a HUGE praise!  We are very thankful that this surgery did not cause anymore disabilities.  Thank you, Lord!!!

It was pretty amazing at CHOP...I was really nervous not being with our same surgical team that has taken care of Isaiah for the past 2 years.  Well, God took care of that by providing us with several of our 4th floor nurses that had previously taken care of Isaiah.  I couldn't believe it!  I didn't have to explain my craziness all over again...they already understood my anxieties and how Isaiah's body was put together differently.  Our nurses were wonderful and took great care of Isaiah and of us.  Then, after we came home, we had our wonderful nurses from Bayada waiting for us to help transition us back home.  A BIG THANK YOU to all our nurses for all your love, support, and help!  You are amazing and we are so blessed to have you on this journey with us and with Isaiah!  Happy Nurses Week!  If you know a nurse, thank them.  They have a very hard job that is often thankless and heart-breaking. We don't know what we would do without them.

HAPPY MOTHER'S DAY to all those fabulous moms out there!  A special thank you to those moms that have been given the special blessing of a child with disabilities or with chronic illnesses.  You are super heroes in your own right!  You may not feel like it, but your child would not be where they are today without your dedication, support, and love.  Having a child with disabilities requires these moms to be on 24/7/365.  They deal with guilt, heart ache, loneliness, and a deep pain that never goes away.  Though they are elated when their child exceeds at the impossible, they often are waiting for the other shoe to drop, for the next devastating event to occur.  Some of these moms have had to make the impossible decision to place their child, that they love more than life itself, into a facility because they can no longer physically keep their child safe.  Some moms have the burden of choosing an experimental drug, treatment, or surgery because they are trying to do what they pray is best for the life of their child.  Some of these moms have had to make the most impossible decision known to stop treatment and let their child go.  Hug one of these moms this week, this Mother's Day.  They need it and deserve it more than you know. They are all around us, often in the background, fighting an insurmountable giant known as disability or chronic illness.  I am so grateful for these moms in my life.  I am a much better woman and mother because of them.  They are examples of what God is like---He loves us no matter how hard or difficult---He loves us no matter what---just like moms love their children.

A special thank you to the Philadelphia Ronald McDonald House for taking us in again and giving us a home away from home.  You will always have a special place in our hearts. Thank you to whomever covered our costs at the house--that was a huge surprise and a great birthday present to me!  Thank you to my mom, Lois, for being flexible with going between our home, the hospital, and the Ronald house.  Thank you to Chris's mom, Viviane, for allowing my mom use of her car for the week.  We are truly grateful for all of our family and friends, and for the graciousness of our Jesus Christ.  And, we are abundantly blessed by our 2 precious boys, Josiah and Isaiah.  We couldn't have asked for better children.

Tuesday, May 7, 2013


Arrival time at CHOP yesterday was 6am.  Isaiah was taken back for surgery at 8:15 and was finished 2 hrs later.   He has 1.5 inch incision at his low back.  He is having moderate amount of pain, but wants to get up. First thing he said as he was coming out of anesthesia was, "I want to get up and go home to see my brother." Unfortunately, he has to lay flat for 48 hours.  Please pray for him to follow instructions to prevent damage to his back/cord.  Also, he has to remain calm for the next month.  It's going to be tough on all of us, especially him. How do you make a VERY active little boy sit still?  We are open to any suggestions! ;O)

Isaiah is such an amazing trooper.  I don't know how he goes through everything and still manages to smile and flirt with the nurses.  Dr. Sutton did feel the surgery went well and that the cord was definitely tethered, so we did the right thing.  Now it's just time to heal. Hopefully, we will be discharged this Thursday or Friday.  Thank you for praying. 

Please pray for Josiah.  He is really struggling with this current operation and separation.  I received a call from his teacher at school today--Josiah was crying cause he really wants to see his brother.  I talked to him and tried to comfort him.  His little heart hurts.  It is really tough to watch him deal with such grown-up issues at such a young age.  Life really is not fair.  

Thank you for your continued support, love, and prayers.  Some have asked what can they do to help--meals for my mom and Josiah at our home and gas cards are the most helpful right now.  We appreciate all your support.  As always, please pass this on to your friends and family.  The more that pray, the more strength and peace we gain from God.  God bless.

Sunday, May 5, 2013


We know this is a really late notification, and we apologize.  It's just been very crazy here over the past few months.  Last we posted, Isaiah was in the hospital in January.  Thankfully, it was just a short stay.  February, he was sick the whole month, but able to stay home.  In March and April, we spent the months visiting many of Isaiah's specialists and having multiple tests run. He's been having increased problems over the past few months which needed further investigation.

After all the testing and specialists, we were told that Isaiah needs to have his spinal cord released from the tissue (phylum) that is holding it taut.  Because the nerves of the lower cord are not free flowing, Isaiah has been having increased bowel and bladder problems, as well as lower leg pain, tightness, weakness, and tip-toe walking/running.  The surgery is to release the cord and prevent any further nerve damage.  The damage that already has been done is not reversible.

Dr. Sutton, top neurosurgeon at CHOP, will be performing the surgery.  Please pray for wisdom, grace, and steady hands for him.  Pray for Isaiah, that the surgery and recovery period will be painless, easy and uncomplicated.  Pray for Josiah, as having Isaiah back at the hospital always stresses him out.  Thankfully, my mom, Lois, was able to come up from Tennessee to stay with him and help us out.  We are so grateful to her for all her help.  She definitely needs a lot of prayer as she has been up here for the past month away from her husband and home.  First, she helped Dan and Steph. Then, spent 3 weeks with Dave and Lori, and now she is with us.  I don't know what we would do without her.  She is such an incredible support person.

Lastly, please pray for Chris and me.  We are really struggling with going forward with this surgery.  We are pretty freaked out.  Though it is supposed to be "easy", according to the surgeon, it has been a terrifying road for us.  We've prayed and consulted many doctors, and have all come to the same conclusion--surgery is necessary.  However, Chris and I are very scared, more than we have ever been before.  We don't want Isaiah to come out of surgery having more disabilities or struggles than he already deals with on a daily basis.  We just need peace.

We do have 4 very important praises that have happened over this past year!  They are:

1. Josiah asked Jesus into his heart this past year.  He now understands that Jesus is his personal Lord and Savior.  He knows without a doubt that he is on his way to heaven.  It was all very exciting!!!  Tears of joy were shed.  Josiah is such a sweet boy with a tender heart.  We just love him!

2. Last June, Chris's sister, Theresa, gave birth to Kaitlyn!  We get to celebrate her 1st birthday soon!  She is too cute and we love her bunches!  Josiah and Isaiah can't get enough of her--they have been praying for a baby sister for over a year now--I keep telling them to take it up with Jesus, and they do!  Gotta love their faith!

3. In March, our newest nephew, Jude James Emr decided to make a surprise, early appearance at only 25 weeks gestation.   He is the 3rd son of my brother Dave and his wife Lori. Even though he is early, he has been stable, growing, reacting, eating, peeing, and pooping.  He has some hurdles to overcome, such as a brain bleed and apnenic episodes (where he drops his heart rate and oxygen levels).  Please pray for the whole family as this is an exciting time, but also a stressful and heart-wrenching time.  Thankfully, Jude is now over 5 weeks old.  It has been wonderful to watch him grow and move!  He is a perfectly made, beautiful, little man, and we can't wait until he is able to go home with his parents, sister and 2 brothers!

4. My brother, Doug, and his wife Sarah, are expecting a little girl in September!  We are thrilled to pieces for them.  We are grateful to God for these little blessings that keep coming!

Thank you again for all your support and prayers.  We feel them.