Doctors

Just as every child is different, every child with Spina Bifida is different. Each requires a different set of doctors and specialists. Sure, there are some that are common across the board. But sometimes, there are a couple that it seems only your child has to deal with.

I remember the comfort in talking about Clinic without having to go into an explanation. Because the family we were chatting with already knew. They had walked the same road. They had sat in a room waiting for doctor after doctor to examine their child. What a relief!

And that is what this blog is about. Shared experiences. Encouragement through differences. Holding each other up and standing in the gap for each other when the going gets tough. Or the going just stops.

What a blessing Kari is to have started SpinaBifidaKids. And what an honor it is for me to contribute bits and pieces of our journey each week.

So, what do you want to know? What doctors do you visit on a regular basis? What doctors seem new or unique to your child's situation? What do you want to know about? What do you want to read? What makes you curious? Jealous? Oblivious? What have you learned along the way?

Next week I'll start a series on doctors and medical professionals. I would love some input as to which doctors you typically deal with.

Thanks for being part of the community.

"Clinic Day"

I remember when we were discharged home from the hospital and they schedule our first "clinic day" and I was slightly confused on what this meant. The nurse said "In a nutshell you will see lots of doctors and other people in one day." Okay sounds great right? So our first "clinic day" arrives and my daughter and I check in at the front desk of the Special Needs clinic and we are called back right away and taken to a room. We see neurosurgery right away and when he is done I start packing up our things and heading back out to the waiting room when a lady stops me in the hallway and says "Oh hunny you can't leave yet, you have so many more people to see." Okay...embarassing, I had NO IDEA how "clinic day" worked.

So a quick run down of "clinic day" from a new mom who still remains slightly clueless! You will see multiple people (ie doctors/therapists/nurses/social workers) and have multiple tests done. For example in a week my daugther will be going to her 3rd "clinic day." We will arrive at 8:15 AM and they said plan to be in clinic for 5 hours. She will see her urologist, neurosurgeon, orthopedic doctor, and physical medical and rehabilitation doctor. She will also have Xrays done and a Renal ultrasound. Other times they may have head ultrasounds, CT scans, MRI's, Urodynamics, just to name a few.

"Clinic day" can be VERY nice for someone like myself who drives 50 minutes to see these specialists; it makes your time seem more worthwhile. However, it can be a very stressful day. Some words of wisdom, pack accordingly...
-Diapers -Toys -Snack and drink for yourself
-Wipes -Snacks
-Catheters -Books to read
Hospital food as we all know can be very expensive so pack a lunch if you are going to be in clinic during lunch. Some clinics will provide lunch, so ask if this is offered at your clinic. Also when you are in clinic take advantage of any infomation that is made available. At our clinic they have information booths set up and the Spina Bifida Association there to answer questions you may have. Also, making a list of questions that you have for each specialists is particularly helpful. And my last words of wisdom....GET REST its going to be a long day!!!
Until next week...
Nicole