SPINAL CORD SURGERY MONDAY, MAY 6th...

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.

HOME AGAIN, BUT FOR HOW LONG...

We have been home for one week now.  Isaiah is still recovering from the Norovirus.  Now, he is currently fighting off a severe sinus infection. He's had problems with his sinuses since last year, but they have been hesitant to treat them because of how sick and weak he was last year. We are hoping that after 2 weeks of antibiotics, his sinuses will clear up.  He's been having trouble with breathing, increased retching, choking, and gagging because of all the post-nasal drip.

Isaiah has had new problems come up during this last hospitalization.  In the next few months, we have to follow-up with the following: neurosurgery (due to his tethered spinal cord), endocrinology, ortho/plastics for his hand, ortho for his hips/knees (due to possible calcifications on his knees), urology (due to continued urinary retention), IRP/Intestinal Rehab Program, pulmonology, and more.  This makes for many phone calls and trips down to CHOP.  It's exhausting for Isaiah and for me.

Please pray for me right now.  The last car accident on October 17th, where we were hit head-on, left me with 2 herniated discs in my cervical neck at C6 and C7.  The herniations have caused severe pain, numbness, and weakness down both of my arms.  Plus, they have caused an increase in migraines and neck pain.  Since the accident, I've had to go to physical therapy 3x/week, rehab/chiropractor specialist 2x/week, and I get 20-30 lidocaine injections into the muscles of my neck and back every other week.  Driving aggravates the herniations, so needless to say, driving to my therapies and to CHOP multiple times is not  comfortable for me.  Also, this type of injury can completely take me out of my nursing profession altogether.  I love caring for people.  I have trained extensively to care for people.  And now, I may never be able to do it again.  As of right now, I cannot even pick my boys up.  Talk about cruelty of life...we were home only 1 month exactly when this second car accident happened.  We just finished 3 months at CHOP where I couldn't hold Isaiah because he was hooked up to equipment, nor did I get to hold Josiah often because of the frequent separations.  Then, I get hit, and I still am not able to lift/carry my boys. The most frustrating aspect of this whole mess is that the 3 of us (Isaiah, his nurse, and me) in my car were injured, and the man that hit us walked away from the accident.

Please also pray for the nurse that was with us.  Her name is Alisia.  She is a wife and mom of three, her youngest also having disabilities to overcome.  Both of her knees slammed into the dashboard of the car and she had to have surgery on her right knee on January 10th, due to a torn meniscus.  She has been out of work since the surgery.  Please pray for a quick recovery for her.

Please forgive us for the late Christmas/New Year cards.  Things just have been overwhelming. Thank you again for your continued love and support.

UPDATE...

Isaiah is still at CHOP, but is finally recovering. He may be coming home tomorrow. Chris is with him right now, and I am home with Josiah. Turns out, according to his primary surgeon, Isaiah did have a small partial Ileus (narrowing of bowel), according to his first x-ray. It was possibly caused by the Norovirus, which was finally diagnosed yesterday. Normally, people have nausea, vomiting, diarrhea, etc. with the Norovirus. Isaiah, on the other hand, does everything the difficult way and it makes it very hard to diagnose him. His bowels just stopped moving/working. When that happens, there is nothing that we can do at home. He needs to go to CHOP for IV hydration. So, unfortunately it looks like that every time Isaiah gets some type of virus/bacteria that stops his bowels, we will be at CHOP getting him rehydrated through his veins---sounds like fun, right?!?!?!?!

Thankfully, Isaiah has been a trooper with a great disposition. He's been very cooperative, even when in extreme pain. He loves his nurses/doctors/ancillary staff, and they love him. Josiah has been doing well also. Chris and I are surviving. The doctors are hoping that as Isaiah gets older, he will grow out of becoming so sick with every cold/illness. We hope desperately that they are right.

Thank you again for all your help, love, encouraging words, prayers, and meals.  We know that we could not continue on this life-long journey without your constant support.

ISAIAH KEEPS HAVING PAIN

Isaiah was admitted again to CHOP yesterday (1/16/13). In the morning he woke up with severe stomach pain and retching. Joy was able to take him down to the hospital for x-rays and evaluation, and I stayed at home with Josiah. It turned out there was no blockage, and we are still waiting for some lab work to come back to see if anything else is going on. Since being in the hospital, Isaiah has developed a high fever, his bowls have stopped moving, and he is not able to keep anything down. They are currently just keeping him hydrated through IV fluids and trying to keep the fever down.

Josiah and I got to speak to him last night and he seemed in pretty good spirits even with belly pain still lingering. Please continue to pray for him and for us with this latest trip to the hospital. Isaiah was in the hospital right before Christmas for 3 days due to similar symptoms, but it turned out to be the flu that affected his bowels on top of having croup. Josiah also had croup with the flu, and Joy had the flu on top of bronchitis. Needless to say, it was not a great Christmas, but at least we were all home together. Somehow I didn't get sick so I was able to manage the household while everyone else rested.

One thing new we learned during these recent hospital visits, is that we have to be extra careful with Isaiah and what sicknesses he is exposed to. Certain viruses/bacterias can cause his bowels to stop working (ileus) which then could lead to a blockage of the bowels. Because Isaiah often appears healthy, many forget he is medically fragile with a delayed immune response to illnesses. He cannot fight off viral/bacterial infections like "normal-functioning" children. Please remember this when you or your children are going to be around him. It could be a matter of life or death for him. Please help us protect Isaiah and if we are going to be getting together with some of you, please let us know if anyone may be sick or not feeling well.

Thank you for your prayers and help,
Chris

THANK YOU GOD AND THANK YOU HONDA...

Once again, our lives were spared by God's protective shield. On Wednesday, October 17th, on our way down to CHOP, my car (Honda Pilot) was hit again, only this time more seriously. I was taking Isaiah down for his first post-hospitalization visit with surgery and pulmonology. Isaiah's nurse was also with us.  We were just coming out of a gas station when a car came driving up the middle of the road (not in a lane) and hit us almost head-on.  All air bags deployed. Thankfully, I received the brunt of the force and not Isaiah, who was sitting behind me, or his nurse.  All 3 of us were taken to the hospital.  Isaiah hit his chin and left leg, but otherwise was ok.  He was really shook up and kept his paci and bear with him all day.  The nurse hit her knees and her neck is hurt, but she is currently recovering slowly. My right arm had some radial nerve damage/injury and I lost all feeling, strength, and movement.  I thought it was broken at first. Thankfully, it's not broken, just sore with some severe air bag burns and resolving weakness.  My neck needs further evaluation by MRI for possible herniation of discs.

So, thank you for continuing to pray for all of us.  God continues to protect us.  Pray for continued healing for all our bodies and that the injuries to my neck are not too severe. Please pray for safety as I need to drive down to CHOP next Wednesday for Isaiah's surgical check-up.  Does anyone have an armored tank I could borrow?

With everything that has happened to us over the past year, it has reminded us once again that life is short and we can't take it for granted.  Please take the time to hug your family/friends and make sure that they know how much you love them and value them. Know that we love you all very much--don't ever forget that!

THANK YOU! THANK YOU! THANK YOU!!!!!!!!!

We cannot thank you enough for all the prayers on our behalf for the grant for the flooring. WE GOT IT!!!!

We could not believe it when we received the call from our social worker at CHOP that Freddy's Footsteps approved the grant to replace the flooring in our home.  We are just so grateful for the work our social worker, Megan, did on our behalf, and for the generosity of the grant program.  We were so overwhelmed with trying to figure out a way to do the floors ourselves after all the damage from Isaiah's vomiting for the past 2 years.  Now, we don't have to!  PRAISE THE LORD!!!  THANK YOU, THANK YOU, THANK YOU!!! Construction/Destruction (or "struction" as Josiah says) has begun in our home.  Please pray for grace, safety, and patience as we work on replacing the floors over the next month.

Another BIG praise---the bill that originally passed to charge additional co-pays to families that have children with disabilities has now been placed on hold.  What a HUGE relief! Thank you to those who wrote to the local and state governments on our behalf and on the behalf of all the other children with challenges.  This is a small victory in the midst of many battles, but significant none the less.

Isaiah has been enjoying being home---we all have.  He still has occasional bad days with stomach pain and has lost weight again, but he continues to take small steps forward.  This Wednesday we see his surgeon and pulmonologist.  Pray that the visits go well and we can continue to find ways to make Isaiah's life healthier and less painful.  Thank you again for all your love, prayers, support, meals, gifts, cleaning, and helping with our home.  Your willingness to follow God's leading continues to give us the strength to take each day as it comes.  

PA RESIDENTS.....PLEASE HELP US PUSH BACK

Hello Everyone,

I would like to share with you something I feel passionate about and feel something needs to be done.  What I'm about to share with you not only affects my family and puts us in a bad spot, but also affects many of our friends who also have children with disabilities.  Just when we thought we could start moving forward to try to get out of debt, we now have new unexpected expenses.

The PA Department of Public Welfare (PADPW) just imposed copays on all services for children and people with disabilities if you are over the poverty level.  Isaiah currently receives medical assistance for his nursing, medical supplies, medications, therapies, etc.  For most families, Medical Assistance kicks in after the family's primary insurance pays their part.

These new copays can add up rather quickly for children dealing with disabilities.  The PADPW did put a cap on the max amount each family can be charged each month.  However, it is set to 5% of the families monthly income, which adds up to a few hundred dollars (a car payment) each month that these families now have to pay.  This does not take into consideration the fact that these same families already pay for Insurance Premiums from each paycheck for their primary insurance.  The purpose of Medical Assistance is to help families dealing with disabilities cover the medical costs that are not covered by their primary insurance.   Now the government wants these families to pay more to help balance the state budget.

http://www.phlp.org/state-budget-alert-copay

Please help us push back to get this bill over-turned.  There are other ways to balance the budget without hurting families that are already dealing with added expenses and stressful situations.

The links below are Letter Templates you can use to send to the Governor and your Local Senator and Representative.

Letters:
PA Senator
https://docs.google.com/file/d/0B06GM2qruw_dQ1BvcVowYkwtdVU/edit?pli=1

PA Representative
https://docs.google.com/file/d/0B06GM2qruw_dY2pjVGp3M2Q4RVk/edit

PA Governor
https://docs.google.com/file/d/0B06GM2qruw_demdqdkRoWTN5Vm8/edit

Once you click on the link, a new window will open showing you the template.
Click on "File" and then "Download" and save it to your desktop. 
Add your name and address and change your local Representative and Senator.
Print, Sign and Mail.

If you need to look up your Local Representative or Senator, please use the following link.

http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/#county

Thank you for helping us fight back as we continue to try to protect our family as well as other families dealing with children with special needs.

Chris Miller