Wednesday, May 19, 2010

I Have Been Humbled

Man..I can't believe it has been almost a month since my last update. Time flies and with that I have so much exciting news to share about little Harrison. Before I share, let me give a perspective of where we were according to Doctors and where we stand today..according to Harrison..:)
In January, as I stood at Harrison's bedside after his 1st liver surgery, he was not only healing from a major surgery, but he was fighting to stay alive from the SEPSIS infection he got days after the surgery. Both doctors and nurses came in to discuss with Jamie and I Harrison's quality of life. We were told to consider what life will be like for him to suffer from liver disease, consider what life would be like for him with his syndrome and all the unknowns, consider what life would be like with all of his "complicated issues." I knew what they were wanting us to "CONSIDER" but in my mind and Jamie's mind it was not a decision for us to make. Only God knew the answers of my son's life, but I knew in my heart and soul that God had a plan for his future. So that was January..prognosis according to doctors was grim and had many unknowns. And he we are today..5 months later..celebrating all the wonderful blessings of his life..and according to Harrison..he is the healthiest he has been since the day he was born.

DEVELOPMENT- Harrison has been making good progress with his therapy. He can lift his head up while on his tummy, he can grasp and play with toys with both hands, he can bear weight on his legs and push to stand when being held, he can coo, his cry and sounds are louder, he smiles his beautiful smile and almost laughs and he GOT HIS FIRST TOOTH. He now receives therapy twice a week and is making good progress. Praise God for all of these blessings and abilities. Please continue to pray for his development.

Growth- Harrison now weighs lllbs 4oz a pound more than he was in the last update. This is the best weight gain he has had since coming home. He is still tiny for his age and not even on the charts, but he is growing. Praise God for the great weight gain, and pray that it will continue.

Feeding- Harrison has now started on solids with rice cereal. Please pray that this will go well and he will tolerate solids with no issues. He is doing a little better with the bottle but it is difficult since he has never really experienced true hunger. Overall though he is tolerating his food and I praise God for the progress he has made.

Liver- Harrison had his latest liver function tests and his bilirubin has come down from 13 to 9.8 as well as his GGT which indicates biliary function, his liver enzymes were slightly elevated, and his clotting factors were normal. So PRAISE GOD for the lower biiirubin levels and that his liver function is still stable. Please continue to pray that his levels will continue to come down, he has already defied the odds with the levels coming down so long after the KASAI procedure.

Upcoming procedure- Harrison met with the pediatric surgeon to discuss the repair of his impeforate anus. Creating the colostomy was the 1st step and there are 2 steps remaining. The surgeon sent him for a dye test to determine exactly where his connection is. Since he stooled through his urethra at birth it had to be to the bladder or urethra. The radiologist doing the test thinks it is to the urethra but I do not have his final report. The connection is very close to the area of the bladder so he could not say for sure. IF it is to the bladder, it will require abdominal surgery as well as bottom surgery to do the second step in his repair. If it is to the urethra, he could do the pull through from his bottom only. Either way, the surgeries will have to take place and they are still surgeries with the risks of complications. My prayers are this: That the area of his connection will be one that requires the least invasive surgery, that his repair will not destroy any muscle or nerve tissue that may aid in the function of his bowels, and that he will have a complication free surgery and recovery. The surgeon doing Harrison's repair is the same surgeon who did his liver biopsy, gut surgery, and KASAI, he is also the doctor who told the rest of Harrison's medical care providers that Harrison was a unique case and that each of his issues should be looked at individually and that he definitely had a chance of having a great quality of life. He has been one of my favorite doctors to work with due to his positive outlook and great care for Harrison. When he saw Harrison in his office the other day, he was so excited to see how good he looked and was in awe at how well he was doing. He couldn't wait to get back to the hospital to share the news with the others involved in Harrison's care in the NICU. Please pray that God will give him the wisdom and knowledge to make the best decisions in this next step for Harrison.

Thank you again to everyone who has provided for Harrison either through prayer, tangible, or monetary gifts. They have proved to be invaluable. There has been such a tremendous outpouring of support for Harrison since his birth and I feel so guilty that I have been unable to write each of you a thank you note. But please know that your support and generosity has not gone unnoticed or without great thanks. We have been receiving medical bills for Harrison since his coming home and they are quite astounding. To give some perspective: Harrison's first two days in the NICU cost $23,000 and no surgeries were performed. He spent a total of 106 days in the NICU and had 4 major surgeries and countless other tests and procedures. Even now, Harrison has numerous doctor visits, and weekly home health nurse visits and those are also billed. IN addition, we also purchase items for his development as suggested by the therapist, and purchase five different medications monthly for his care. So if you have sent a monetary gift of any amount, it has definitely been put to good use and we are so thankful that you have so generously given to our family. I have been greatly humbled by the generosity of my family, friends, and even those who do not know me or my family personally. I have also been humbled by the miracle that Harrison is and I hope that you too have been blessed in seeing the miracles of his life. He has been a testament to those in medical field for sure and I am again reminded that the one who wrote the book on Harrison's life is not wearing a white lab coat and working at Levine Children's Hospital, it is HE who gave the gift of life, the ever present and omniscient Lord himself. Praise God from whom all blessings flow.