About Me

My photo
Hi I’m Jen- I'm one lucky lady to be married to the most wonderful man, Jason. I am a mother to three beautiful children, Grant, Norah, who was born with hydrocephalus, and Mason. I love spending my time with my family. I also like to challenge myself with new things. I'm on a constant quest to become more organized, it may never happen but it's a dream. I currently work part-time as a RN in an emergency department. I love this journey of life that I am on with God by my side, knowing that all things are possible when you Believe.

Monday, April 12, 2010

What a Norah day!

First, the biggest news of the day. We have booked our trip to return to Duke for Norah's second stem cell infusion. We'll be heading to Duke in May. We traveled to North Carolina in September for Norah's first infusion, and believe that her first treatment helped her her little brain heal especially after such a rough start. We want the best for our daughter and think this is an answer to our prayers. While the treatment is expensive and not covered by our insurance, the chance it could benefit our daughter is worth it. Duke has been fantastic to work with throughout the process. June has been prompt in returning emails and setting up Norah's infusions. Barbara has worked with us to set up hotels to stay at for reduced cost. The billing department has been great helping reduce the cost of our bills since we are having to pay for it without help from our insurance company and setting up payments. I haven't even memtioned how wonderful Dr. Kutzberg was to meet and all of her staff, and the hospital staff, they were very attentive to our litte Norah. Our overall experience has been great!!

Next part of our Norah day, physical therapy. I can't boost enough about how much PT has helped our little girl. Leslie, Norah's therapist has been so wonderful and helpful. Norah's is now rolling over, pushing up on her little arms, and getting so close to sitting. We have even been able to get Norah to sit unsupported for 15-20 seconds a few times. Keep up the good work baby girl!!

Finally the last part of my Norah day...the frustrating part. The neurology office called to cancel Norah's appointment, again. Norah saw the neurologist in November for the first time after being born in July. See was 3 months adjusted age at that time, the plan was to followup in 3 months, February. An appointment was scheduled the day we left the office in November for the first week of February. I received a phone call with a week of setting up that appointment to reschedule for the end of February, the neurologist would be out of the office. Mid-January came and another phone, the doctor was going to be out of the office that week of February a new appointment has been made for March. While at work in February, my husband gets the third call, the doctor will be out of the office, a new appointment has been made for April. Today, as I worked on setting up someone to watch Grant on Wednesday.  Jason and I wanted to go to this neurologist appointment that we have been anxiously waiting for together withour Grant in tow, and then another call from the office. The neurologist is now on a medical leave. This is some kind of cruel joke, right? I pray that everything for the neurologist is ok, but I'm a concerned parent of my daughter, born with hydrocephalus, and have questions that other doctors and specialists have deferred, telling me to ask the neurologist. This time no appointment could be rescheduled because the person who does the scheduling was out of the office. I do believe we will begin seaching for a new neurologist in the area, hopefully one covered by our insurance. Tomorrow is a new day when will begin to work on that. Goodnight!

No comments: