Wednesday, July 13, 2011

My Pity Party...

I started writing a blog last night, but got interrupted with family things and never finished.  It started out saying something like "things have been quiet.  No illnesses, no doctor visits, no hospital stays, no news....

That still mostly holds still today, but perhaps my outlook has changed on it. 

We have had some concerns over Evans hips for a while now and at the last Spinal Defects clinic we talked to the orthopedic Physician Assistant who sees us there.  She agrees that we may need to do something about them.  Both of his hips have been dislocated since birth and the general consensus is that if they are symmetrical (both out) you leave them alone.  The problem now is that the muscles on one of the hips is very tight and one is very loose. The PA had us schedule an appointment with the doctor.  I called that afternoon and got her next available appointment...six weeks later, which was for this Friday, July 15.  Today, July 13, I got a call that our doctor is actually going to be out of the office on Friday, but they could get us in at her next available opening, on Friday, August 12th.  I was not happy and expressed my discontentment to them.

Early August is already a very full two weeks for us with appointments.  On August 3rd we are scheduled to see our new GI, since our other one moved out of state.  August 8th we are having a repeat swallow study.  I have been trying to control my anxiety about the swallow study, since the one we did in January went so badly.  I am hoping we get some better answers this time so that we can begin moving forward with getting Evan to advance with his eating and drinking.  Then the next day, August 9th, Evan is having his first official head and spine MRI which will require sedation.  And now we get to finish the week with an ortho visit to talk about possible hip surgery. 

I realize in the big scheme of things, maybe all of this is not such a big deal, but in some ways it is.  I hate that I have to constantly ask for time off work for appointments.  I am lucky enough to work with people who are very understanding, but I still feel badly.  I try, when I can to spread appointments out, to not have such a noticeable absence, but this time it couldn't be avoided. All of these appointments were difficult to schedule and were scheduled many weeks and some, months ago. 

So after getting off the phone with the Orthopedic office, I was feeling upset and frustrated.  It saddens me that there are so many children out there that need to see these specialist that it takes so long to get an appointment.  It frustrates me that...we have to deal with any of this.  Some days I get angry at Spina Bifida, and today, ok, really this week is one of them.

I want simplicity.  I want a break.  I want a moment to have a pity party.

It does make it easier that he is pretty cute...

Sunday, July 3, 2011

Spina Bifida Conference

We just returned from attending our first (and hopefully) not last National Spina Bifida Conference.  I am still in a state of awe.  It is almost overwhelming to even sit down and write this blog post and figure out how to include everything without writing a novel.

First and foremost, it was absolutely amazing to have the chance to actually meet in person the women, men, and kids that help keep me going.  They are my resource when something new comes along, my cheerleaders when I feel down and my new family.

The conference started off with a presentation from the doctor who headed the MOMS study.  This was a study that was conducted in three states where mothers who were pregnant with a child who had Spina Bifida were initially interviewed to see if they qualified for the study.  Once qualified they were divided into the prenatal or postnatal groups.  The prenatal group underwent surgery to repair the babies lesion while still pregnant and the babies lesion was closed.  The postnatal group was also followed but their babies lesion was not closed until after the birth.  The study was so successful in showing that the prenatal babies did better that the study was ended early.    During my pregnancy I was given a very small amount of information about the study, but knew that it would be difficult to adjust our lives to be able to participate.  I would have to leave my job quite early in my pregnancy and be away from Lauren for several months.  Looking back, I maybe should have done more research on it, but I've learned not to dwell on things which I can not change.  Evan is who he is...and he is perfect.

Over the next few days of the conference, I attended a variety of sessions covering orthopedics, neurology and urology.   I learned so much in such a short period of time.  I learned how much is really involved with a child/adult with Spina Bifida.  We have a long road ahead of us with many unknowns.  I have a lot to still learn and I can only hope that I am knowledgeable enough with my decisions to give Evan the best outcomes when the time comes for those decisions to be made. 

As enriching of knowledge as these sessions were, they also at times were mentally exhausting.  As I would look around at all of these sweet kids and kinds adults who were living with Spina Bifida, it was heart breaking and unthinkable of why they were chosen to be born this way.  Each of them are stronger and braver than I will ever understand.

While I was at conference Evan attended Kids Kamp.  He had the opportunity to spend a few days with other kids his age who also have Spina Bifida.  My hope is that in years to come we are able to attend more conferences and he can get to know these kids better.  I learned how important it is through my own experiences it is to have people in your life who truly understand what you are going through.  I worry about how Evan will relate to his peers once he starts school, but I know that no matter what his SB friends will always accept him for who he is. 

On Monday evening a big group of families met for some social time.  These are some of the moms that I have gotten to know well over the past few years.  It was a night I will always remember.