I am worried about Norah. While I worry about Norah every day, this worry is different.
Today we saw Norah's pediatrician and shared with him all of our concerns about Norah that have developed over the summer. How things have emerged that previously haven't been a problem before or have gone unnoticed because she was an infant. Some things just aren't as noticeable until your get to the point where a child should be able to do it without difficulty or can tell you it's different than the norm. I am not willing to sit around letting little things turn into big things, or to see Norah lose progress and abilities she has previously been able to do.
Our pediatrician listened to all of our concerns, really listened, probably got behind seeing other patients because we discussed and reviewed everything listening. He referred us to new doctors, who practice outside of the children's hospital but are still affiliated if Norah was to need inpatient care. He said that he has seen some of these doctors for his own kids, that makes me feel better. I left his office with a plan and feeling better about my concerns.
The plan, call the neurosurgery team and relay all the concerns, stressing Norah's appointment should not be delayed for another month. (It was cancelled and no appointments were available until the end of September). They agreed with all of our concerns so Norah's MRI for next week is still on with appointment to follow after she wakes up from the sedation (amazing how that appointment reopened). Meanwhile, Norah will have an upper GI x ray to see what kind of swallowing problems, if any can be detected. An appointment with an ENT is also being scheduled to see if Norah's tonsils and adenoids are causing problems. We were able to make an appointment with a new neurologist. Norah's weight continues to be below the 3rd percent. Bless him for not using the statement failure to thive. She drinks two Pediasures a day to help gain weight and will continue to do that for now, with a weight check in four months. We are also contacting a new feeding clinic for additional help with eating behaviors and weight gain. Norah is also going to the eye doctor this week to check on her vision. I am sure there is more but for now that's what is on my mind after I spent lots of time on the phone making appointments and speaking with doctors this afternoon. All this while trying to set up some training at work so I can keep my job as a nurse and return to work in a couple weeks.
I feel like we were able to find a nice place this last year - Norah was healthy and thriving, making slow and steady progress. Then since late spring things have been building and I feel like now I'm sitting on an active volcano about to blow.
For now this is a verse that I turned to while I was pregnant with Norah and am using to remind myself to put that worry away.
Philippians 4:6-7: Don't worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
Please keep Norah in your prayers as we head into lots of appointments in the next couple of weeks, as well as surgery to repair her hernias.