Wednesday, December 26, 2012

Christmas 2012

This year we stayed home for Christmas instead of traveling to PA. It was nice, but I missed riding the quads in the snow with the dogs. That would have been fun. I got some pretty cool stuff and even some gifts wrapped in Bone Collector wrapping paper... It was relaxing to have Christmas day at our house and not have to travel. Everything went pretty smoothly. The ladies did their thing in the kitchen and Amanda successfully had dinner ready at exactly 5:30. Dinner was delicious and dessert was amazing! We had some friends and neighbors stop by. It was great watching the niece and nephew and neighbors kids open their gifts. We just want to thank everyone for coming here and making Christmas at our house possible this year.

Saturday, December 22, 2012

December 2012

Things started out slow, but got pretty busy after Novermber. In the beginning of December I was starting to feel a little better with the help of the Humira. The doctors decided to go ahead and lower my prednisone again. So I was moved down to 7mg. Then as long as things were going okay I could lower .5mg every two weeks and return to the doctors in the middle of January when I reach 5mg to discuss the next step. I can't wait to be off this stuff!Rehab medicine said the strength is increasing in my foot that had barely any movement when I left the hospital. Still can't lift up my big toe though. Christmas is only a few days away. Hope everyone gets what they want.

Thursday, December 6, 2012

Holiday's with the Fischel's

As many of you know- but for those who don't-- Our recent publication in the Philadelphia Inquire has led us to connect with the Fischel Family from Moorestown, NJ. (See publication here)

Sean is an amazingly strong 7 year old who is battling HLH and so much more than most do in a lifetime in the past few months and those to come. As we go through this Holiday season we ask you to continue to keep Sean, his parents, siblings, family and friends in your prayers. If this is the first time you are reading about Sean's journey, please read our first blog entry here.

Over the holidays we will update you on Sean's progress below. Please feel free to leave words of encouragement for his family below.

--Amanda & Eric

December 2,2012
Sean is going into a hyperbaric chamber tomorrow to help him prepare for his surgery on Friday. This unconventional treatment is supposed to infuse his body with 100% oxygen which helps in the healing process and fighting infection. I will update you with surgery info once family has been informed. Prayerfully in God's Hands.

December 6,2012
My dear friends, we are taking a big step tomorrow on Sean's road to recovery. He is undergoing bilateral below the knee amputations as well of amputations of all of his finger tips (except his left ring finger!). He sustained this damage due to being in septic shock for so long with very poor circulation. We are sooo truly blessed and thankful that Sean is alive and that he is mentally intact. Our Sean can do this!! He is so laid back, adaptable and happy. Please pray for the surgery to go well and for Sean's spirits to remain high.

All my love!-Kim(Sean's Mom)

December 7 (Post Surgery)
Sean is out of surgery. It was about 6 hours total. All the procedures went well with few complications. He was extubated in his room and spoke a few words. He was given more pain med rescues and is now sleeping. The reality of it all is becoming more concrete. We have a long journey ahead of us. Thank you so much for all your notes and messages of encouragement and faith. I can't tell you how much they mean to me. The Lord is my strength.-Kim(Sean's Mom)

December 21
Sean is our Christmas miracle! He got his wish this afternoon...he has been cleared to drink and eat soft foods! His first request was sushi!! He can't eat that yet but his next desire was mashed potatoes and icy cold water!!

Although we may not have all our festive trimmings around us, we have the true Christmas Spirit within us. We are so blessed!! Merry Christmas to all our amazing and supportive friends!

January 1, 2013
Update: It seems we have hit a plateau. Sean continues to fight the fungal infection in his lungs while we pray the HLH is in remission. His breathing settings have not been weaned in weeks and his chest tube is still producing fluid. He continues to present with intermittent fevers, tachycardia, and vomiting. We are entering our fourth month in the intensive care unit. The weeks are long, but the Days are even longer. The duration and severity of Sean's problems are really taking a toll on him emotionally. It is so hard to watch sometimes. Please pray that he has the emotional and physical strength to make it through this tough course ahead. I pray that each and every one of us can count our blessings big and small in this New Year.

Update: January 6 Update: Sean has been declining medically. A full body CT Scan revealed an abscess on his chest wall between his aorta and pulmonary artery. He went to IR to get it drained under a "live X-ray" for precision. His chest tube was also moved into a lower part of his lung for better drainage. Because of this recent development he will most likely need invasive surgical intervention. The extent of this surgery is being discussed by his PICU team, general surgery, and infectious disease. Keep praying please!!

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