I am Julie, Daniel's Mom. Daniel has Polymicrogyria. His brain is deformed, caused by a virus in utero. He has seizures, developmental delay, motor dysfunction, severe reflux, respiratory problems,etc He is unable to speak, eat by mouth, or walk. Visual strength and a gentle touch are his means of of communicating. Daniel has strengthened my belief in miracles and faith. Enjoy. Share. Follow. Help. Laugh, Pray, make a new friend.
Tuesday, January 31, 2012
Pneumonia. Times three.
Here I sit again.....while my sons lungs try to recover from another infection. This is the third pneumonia admission in three months. I know that it's a chronic problem. It's also a very fearful one. Sitting all day in a hospital room starts to wear on your sanity after awhile. All of these antibiotics and why does this child have to suffer so much. ? Yesterday on my way bringing Daniel to the hospital I saw a bumper sticker....it said "psalm 91". Which made my weird mind think of TUCK number 91 for the NY Giants. I ordered Thomas a jersey and I hope it comes in. But , yes, alas I did review Psalm 91. And it is so appropriate as we sit here fighting infection.
Friends and family make this so much less of a burden. And I am thankful beyond words for the continued support...food, gas cards, money, visits, phone calls, cards, and especially the prayers and love. Daniel has a very long road to travel. A very very serious spinal surgery will straighten the spine to put less compromise on the lungs. But the surgery itself is terrible and getting through recovery will be crazy.
For now, we sit at CCMC in Hartford fighting off the infection and I am missing my normal life. I miss Sarah and Thomas. Daniel was supposed to get a haircut today.. Such a normal thing. We just can't seem to get there. Or anywhere. I am so worried about this boy. Pneumonia is terribly dangerous. This hospital incarcerated Mom is now going to try to nap..... No sleep to be had last night.
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment