Thursday, April 21, 2011


There is a poem called Welcome to Holland that is shared amongst many who have children with disabilities.  The basis of it is that there are people going a trip to what they think is Italy, they want to go to Italy, are prepared and excited for Italy, but somehow end up in Holland.  Holland's not bad, just different that what they expected.  Most people who want to go to Italy, go.  Many of us who ended up in Holland, never expected to go there.  Again, not bad, just different.  It is a metaphor symbolizing that we don't always get perfection in life.  But having a child with a disability doesn't necessarily change life's perfection. 
Last weekend, I had the realization that I really was in Holland, but not alone.  I had the pleasure of having dinner with 4 other moms of children with Spina Bifida.  We discussed the kids differences, their similarities, their challenges and the successes.  We have all had very different experiences with Spina Bifida, but then again every child is different, even ones with out a disability.  At one point during dinner I had a brief moment of sadness that I was amongst these women because of our common bond, only to be over shadowed by the thought that I was incredibly luck to be a part of this group.  I have the support of other mothers.  When I am feeling overwhelmed or frustrated, I have someone there, who truly does understand what I am going through.  I have encouragement on my hard days and cheers on my good days.  I know there are people who aren't in touch locally with other Spinase Bifida families and they struggle.  I know that babies were born with Spina Bifida 20 years ago, before the Internet and weren't lucky enough to have the connections I have today. 

Evan brought us to Holland, and I am a glad to be here.

Tuesday, April 12, 2011


Evan has found his freedom.  He has had his wheelchair for one week now and is loving his new found freedom.  It took him about 5 minutes to realize that he could move around as he wanted.  His favorite place to be is in the kitchen.  The kitchen has a tile floor so he doesn't have to exert as much effort to get himself around, but also because there are treasures to be found.  He has no greater joy right now than opening the cabinets and drawers and taking out their contents.  As always, there is a price for freedom.  We now have to baby proof the house, I couldn't be more thrilled to do it. 

It brings a smile to my face each time turn around and he is not right there.  He is instead off exploring, on his own terms.  I am still holding on to the hope that one day he will walk and not have to rely on his wheelchair as his only means of mobility, but I know we have some work to do before that day comes. 

For today though, I am so proud of him and all the progress he has made. 

Tuesday, April 5, 2011

Differing Opinions

As a parent of a child with special needs, I spend a lot of time taking Evan to the doctor.  I put a lot of trust in these doctors and respect their opinions.  But at times, I must admit, I don't agree with their opinions.  These last few days this has happened A LOT! 

Evan started running high fevers on Thursday night.  It didn't seem anything in particular was bothering him, so we just kept him loaded up with Ibuprofen and Tylenol.  His fever continued and on Saturday, it finally occurred to me that he might have a Urinary Tract Infection.  We took him to the ER at Children's, was seen, they agreed it was a UTI and sent us home with some antibiotics.  Sunday morning when we got up I went to change Evans diaper.  His butt looked as though it had been scalded with hot water and his skin was peeling off in big layers and there were several blisters as well. So back to the ER we headed.

Anytime we are at the hospital we deal with a multitude of people.  The first line of visits always come from residents.  I don't have a problem with this as I know they have to learn somehow.  At times, I even find they are a little more detailed with their exams as they are learning and taking everything in.  The problem within lies when the resident says one thing and the attendings say another, and at times, my thoughts differ from either of theirs.   That was my thoughts during both of these ER visits. 

On top of all of this, we are still struggling with Evan's chronic ear infections.  One of the residents felt his ear looked infected, but the attending disagreed.  I felt sure his ears were still infected as he continues to pull on his ears constantly.  So, after 2 ER visits, it was still unclear what was causing his fevers and even more unclear what was happening with the issue on his butt. 

Monday morning I called Evans regular pediatrician who I have great faith in and we went to see her Monday afternoon.  She too, was uncertain what was going on with his skin, but was sure his ears still looked infected.  Several weeks back she had wanted me to set up an appointment with the ENT and cancel it if his ears got better.  I never cancelled it, despite multiple other doctors saying his ears looked clear (mothers instinct).

This morning was our visit with the ENT and he agreed Evan's ears still look quite infected.  A hearing test was done and his hearing is being affected by all the fluid build up behind his ears.  The doctor feels tubes are the appropriate next step.  I agree.  He had time to do the surgery this coming Thursday, but that's just a bit too quick for me, so we are headed for surgery number 10 next Thursday.