Sunday, July 27, 2014
Wow! It's been a crazy ride
Oh my goodness can't believe how long it has been since I have blogged! I can't even begin explain the craziness that was this winter. I will do a more lengthy post at some point soon but the big stuff is that Sam was diagnosed with an eosinophilic colitis again, this winter. He has had tons of other symptoms that we are still trying to work through, and missed the last several weeks of school. We were so blessed to have a wonderful tutor that kept him up to date and he continue on to the third grade. Sophia is now six and is reading so well now! My mom and dad have been so fabulous and have helped us pay for Sophia to take gymnastics. She does phenomenally well and is advancing quickly. Preston will be three the end of August and is doing well too. He is continuing to receive IVIG and we are thrilled to be doing it at our local hospital since march which makes life so much easier than trekking into Boston all the time. Sam switched to subQ infusions of the immunoglobulins this winter due to lots of complications. And little miss Paisley is going to be ONE on August 9th! This year has flown by with her. She had another incident of respiratory arrest, actually several in between thanksgiving and February. We had an apnea monitor and it was alarming multiple times a day. Her last admission to the PICU was in February. At that time they stated that her "ALTE" (apparent life threatening events) were caused by severe reflux. She was put on multiple medications and the reflux had improved greatly. She is currently having worsening symptoms again but we are praying for God's healing and protection over this little darling. My husband and I are continuing to both work outside of the home, he full time, and me part time at the hospital and full time at home.