Monday, January 28, 2013


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.

Monday, January 21, 2013


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.

Thursday, January 17, 2013


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,