MERRY CHRISTMAS & HAPPY NEW YEAR!!!!!!

We continue to be thankful to all our friends, family, and to our church.  We are very blessed to have you in our lives supporting us and praying for us.  We hope you had a wonderful Christmas.  We had a great time celebrating together--this is the first time since Isaiah's birth that we were all healthy.  It was a miracle!!!  Thank you for praying.

Isaiah's surgery on November 20th, for his left hand, ears and G-tube site, went well.  We start rehab therapy on his left hand in January.  Dr. Chang, Isaiah's hand specialist, was so thrilled with the movement in his newly separated fingers, that he said to me, "I'm so glad you talked me into this surgery."  It'll be exciting to see how Isaiah progresses with his new hand/fingers and gains new movements, strength, and abilities.

Isaiah did fail his second sleep study test.  He is now on oxygen at night.  He will need a repeat MRI of his brain and spine to make sure there has not been any shifting since his spinal cord surgery.  The doctors are not quite sure why Isaiah drops his oxygen levels so frequently while sleeping.  Please pray that whatever is causing Isaiah's desaturations will be found and be treated effectively.  We would love for him to come off of the oxygen.

In the summer, Isaiah will have to head back to the feeding clinic in Bethlehem.  He continues to struggle with his daily tube feeds, and with pain, retching, and vomiting.  The doctors are all in agreement that if Isaiah starts eating again, many of his digestive issues may go away, and he can come off some of his medications.  We will give you more details as we get closer to that time.

PRAYER REQUESTS:
1. I was diagnosed with Celiac's disease 2 months ago.  It has been a very difficult path for me.  My body is having a tough time adjusting.  Pray that somehow God will miraculously heal my body, or at least allow my gut to be free of pain and severe digestive issues from having a gluten/wheat allergy.

2. For a healthy and pain-free New Year!!!  Even though Isaiah has some hurdles to overcome this coming year, he continues to have a wonderful and happy outlook.

3. My nephew, Jude Emr continues to improve.  He is as cute as can be, and we love spending time with him.  My brother, Dan Emr, entered Dave and Lori into a competition to win a car.  They are neck and neck for first place.  It would be a huge blessing to them to win this car that provides safe travels for their children.  Please see the instructions below to vote for them.  You can vote up until December 31st.  Thank you for your help!!!!

Follow the link below to read the entry their brother Dan wrote for them and then vote.

Here are a few quick answers to questions people have been asking:

- How often can I vote? Once a day EVERYDAY (this means one vote per person per day - we don't want to be disqualified for failure to follow the rules)

- How do I vote? Click here: http:// driventomakeadifference.com/ vote/78/ Once registered it only takes 5 or less clicks to vote - that's less than 45 seconds a day.

- What else can I do to help? Share that you are voting on your social networks. More sharing leads to more voting. The best link to share is http:// driventomakeadifference.com/ vote/78/ as other links don't work on mobile devices.
- What's at stake? A brand new Crosstrek or Jetta. All we need is the most votes!

- When does voting end? December 31, 2013
- Who can vote? Any one with a facebook, google, or twitter account. We have entire families voting for a win! If you have a gmail.com account you can vote - simply click on the register using Google+.

If you have any questions, please ask!

Thank you on behalf of the David and Lori family

 

RESULTS...

Well, the results finally came in from Isaiah's week long stay at CHOP back in October.  1)It was determined that a lot of the pain he's been experiencing is due to an overgrowth of bacteria in his gut.  Because of how Isaiah's bowel formed and his multiple surgeries, his gut has areas that don't push food through normally leaving little pockets where bacteria pools and grows.  He now has to be on antibiotics for the first week of every month to try to keep the bacteria in check. The antibiotics have helped to cut his pain down.  He is now eating a tiny bit of food each day.  2)The manometry test looked for nerve innervation to the bowels and bowel activity.  It showed that Isaiah's bowels do not contract or relax normally.  His bowels are relaxing when they should be contracting, contracting when they should be relaxing, and at times hyper-contracting.  This abnormal activity level does not allow food to flow through normally.  3)These tests all showed that Isaiah had damage done to his Vagus nerve, probably the result of some virus or from previous surgeries, causing bowel neuropathy. The good news is, the damage can be reversed over time.  The best way for Isaiah to improve, is for him to start eating again and to come off of his tube feeds.

This Wednesday, Isaiah is having surgery.  He is getting his ear tubes replaced, his g-tube site revised, and reconstructive surgery on his left hand to separate the webbing between his pointer and middle finger.  It wasn't separated before because his orthopedic surgeon originally thought he had no movement in the index finger.  Now that he does have movement, separating the fingers will give him 4 "more functional" fingers.  He will be in a cast for 2 weeks.

Please pray:

1. For surgery to go well on Wednesday, for a quick recovery, and no complications. There will be 3 surgeons operating: Dr. Chang, ortho/plastics; Dr. Germiller, ENT; and a general surgeon.

2. For continued health for my nephew, Jude.  He is home, and is growing, but still has a long road ahead of him.  Also, pray for his family, as they adjust to a new way of life.

3. For my grandparents, David and Georgina Solt, as they travel to Costa Rica for 4 months.  They are 87 and 90 years old.  We will miss them while they are gone.

4. That we can get Isaiah back into Good Shepherd's feeding clinic next summer.  He will need to be there again for another 4-8 weeks.

Thank you again for all your love and support.  We truly could not handle this journey without your partnership.

PAIN, PAIN, GO AWAY...

DON'T COME BACK!  JUST STAY AWAY!  This has been our prayer for Isaiah lately.  I know I haven't written in a while, and it's because we've been very overwhelmed and busy with many visits to CHOP and multiple tests for Isaiah over the past few months.  Isaiah has been in chronic pain for the past couple of years, with it increasing significantly since his strangulated bowel last June and the car accident last October.  We've been to multiple doctors, had multiple tests completed, and had a ton of blood work drawn.  So far, nothing has shown the doctors clearly what is causing Isaiah's pain or what can be done to decrease it.  Isaiah has been unable to tolerate his tube feeds for the past 4 months, and has daily retching and vomiting episodes.  It is heart-wrenching and exhausting to see our vivacious little boy in so much pain.  He often has to stop playing to lay down or he asks to go to bed early just to try to sleep through the pain.

Tomorrow, we head down to CHOP for a week long of tests.  The GI specialists are going to try to find out what is causing all of Isaiah's abdominal discomfort, and hopefully find a way to alleviate it.  Please pray that someone discovers the cause of Isaiah's abdominal pain.  Chris and I just don't know what to do anymore.  Our hearts are breaking for our son.

On the upside, Isaiah is really enjoying school and has made friends quickly, especially with the girls!  It's rather entertaining to watch him interact with his peers.  His teachers have been incredible with him, and we have been grateful for the support we have received from them. 

Funny story--Isaiah's teacher noticed that he was often playing with the girls in the kitchen and wasn't playing with legos like the other little boys.  We assumed he wasn't playing with legos because of his limb anomalies and difficulties with fine motor skills.  So, we worked with Isaiah's occupational therapist and with legos and he did phenomenal!  He never ceases to amaze us!  His OT then asked Isaiah if he would play with the boys at school the next day.  He responded with a straight face, "NO!  I need my lady time!"  We just busted out laughing.  We have no idea where "lady time" came from, but it was great for a few laughs!

Josiah has been doing much better since we started counseling with him.  He was experiencing significant anxiety and nightmares because of all the separation from us over the past 4 years, the 2 car accidents last year, and from almost losing Isaiah.  We've worked on memorizing verses and equipping him with tools to express his fears.  He also has a fantastic teacher that has been very patient and tentative to his needs.

At this point, we really don't know what the future holds for any of us.  We just continue to take it one day at a time.  We just really hope and pray that God decides to intervene soon and choose to take away Isaiah's pain. 

NO SURGERY!!!!!!!!

Praise the Lord for NO SURGERY this time around!  Isaiah's blockage has been resolving with bowel rest.  Thank you for praying.  God answered.

I really appreciate all the kinds words, encouragement, and  Bible references on faith, staying strong, and God's presence even during the dark times.  In my mind, I know God is in control, but my heart struggles with His sovereignty and love.  Life is just really hard.  And, when it's your child that is hurting and you can't do anything about it, but you know that God can heal and chooses not to, it can shake your faith to the core.  I know Isaiah is here to change the landscape of the life I planned out, but the journey we are on together has been excruciating at times.  But, it is a learning process, so I am learning.

Today at about 4pm, Isaiah took a turn for the better.  He has had a significant decrease in pain and in the frequency of pain.  He has started to ask for something to eat.  Hopefully, he will be able to start on some clears tomorrow.  So far, all his test results have come back negative, except for the Rotavirus.  Not sure where he could have caught the "cold", but once again, it has done it's damage.  Unfortunately, we are reminded again that Isaiah's body cannot handle the "common cold", because it will shut down his gut.  The doctors have been wonderful, and we just love our nurses as well.  Many of the nurses come by just to visit, even when they don't have him for their shift.  Isaiah loves the attention!!!!!!!

Thank you for continuing to walk this journey with us.  We love and appreciate you all so very much.

John 3:30, "He must increase, but I must decrease."  This is my life verse I chose years ago--what a process!

"I WISH MY BROTHER WASN'T BORN..."

This is what Josiah said to me last night.  I asked what he meant, and he continued after a pause with, "...this way."  It broke my heart.  What do you say to that?  How does a parent respond when we don't even know the answers?  What is the answer to the question, "Why did God create Satan and let bad things happen?"  Josiah is so sensitive and sweet that it physically hurts him when Isaiah hurts. 

Once again, our family is pulled apart.  Isaiah was rushed yesterday evening down to CHOP for severe belly pain.  He's been having increased episodes of pain and retching over the past 4 months, along with bowel slowing.  We've been back and forth with doctors and were down to a specialist on July 24th.  A barium swallow test was done. But, like every other test, it came back relatively normal.  It didn't explain any of Isaiah's increased pain, retching, nausea.  Last night's X-ray did show a blockage, and the doctors are trying to get the blockage to resolve without surgery.  Thankfully, Dr. Doolin, the surgeon who saved his life last June, was there to see and examine Isaiah. Currently, Isaiah has an NG tube to suction, his G-tube to gravity, IV fluids, and is not allowed to have anything by mouth.  He's been crying to me on the phone that he's thirsty and wants to come home.  I don't even know what to do anymore.

We were dealt another blow right before Isaiah's admittance to CHOP last Thursday.  Isaiah failed his sleep study test on July 8-9th.  Per his pulmonologist, Isaiah frequently dropped his oxygen levels into 70% while asleep, and even a few times into the 60%.  Normal is to be 92%-100%.  Now, Isaiah needs to sleep with oxygen at night and during naps.  This was really hard for me to come home and see my little guy hooked up to an oxygen tank.  I really don't know how he keeps going and keeps a smile on his face. 

I don't know what to ask for anymore.  I am beaten down, exhausted, unsure of what to do next.  Chris and I are trying to survive and trying to make our boys feel loved and safe.  Don't know how we are doing.  Don't know how to ask for God's intervention.  Don't know if He even hears anymore.

THE 3 "H's"...

HOME!!!!
HAPPY NURSES WEEK!!!!!
HAPPY MOTHER'S DAY!!!!

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 man...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.

SURGERY WENT WELL...

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.