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.

Summer

As I sit down to write this, it's a relief to not have to write any medical updates on here (knock on wood). 

I love summer time.  I never knew this before this summer, though.  I love being able to come home from a long day of work and not have the stress of homework, and dinner and baths and early bedtimes.  We can relax.  We have time to breathe.  We get some much needed extra time in our day. 

This summer will definetly be a summer to remember.  We are about to embark on a life changing journey.  In just 9 days we are heading to Anaheim, California for our first family vacation.  We are headed to the place where dreams are made.  I am lucky enough to be able to get a two for one deal during this trip.  I am attending the National Spina Bifida Conference!  . I am so grateful and blessed to have such an amazing support system of other SB moms and families and I will finally get the chance to meet some of these wonderful people.  While I am at conference Evan will be a Spina Bifida kids camp.  I realize that he is young and very possibly will not remember this trip when he is older.  I love the fact that he is going to get the chance to be around other SB kids his own age and observe their mobility skills.  While Evan and I work on our SB educations, Jeff and Lauren are going to be spending 4 fun filled days at Disneyland.  The conference is being held at the Disneyland Hotel, which is where we will be staying, so it only seem fitting.  I am so glad they will get this daddy/daughter bonding time.  Evan and I will join them for the last 2 days at Disney to end our amazing trip.  One of the best things about this trip is that Lauren has NO idea, whatsoever that we are going!!!!  Jeff and I have been talking and planning this trip since January and we have never said a word to her about it.  I can't wait to see the look on her face when we arrive at Disneyland.  The smile on her face is the only way to start a dream vacation!

Spina Bifida Clinic Update

We had our first Spina Bifida clinic in a while today.  We were supposed to go in February but it was right after Evan had been in the hospital for 10 days and I just couldn't imagine spending anymore time there, so we rescheduled and today was the next opening they had.

I have a love/hate relationship with Spina Bifida Clinic.  I hate the long days.  I hate the worry I have for days before.  I love seeing the doctors and nurses who we have gotten to know over the past year and a half and I love seeing other SB families and often meeting new ones.    Today we met a new little girl named Lilly who is 3.  Her mom brought her down the long hallway in her stroller, stopped, Lilly got out and walked over to the rehab nurse.  A new accomplishment for Lilly in the past 2 weeks.  I am thrilled for Lilly and her family. A take that, SB, moment!!!!

We have had some concerns over the last few weeks about Evans right hip.  Although they are both displaced, there has never been a concern since they were symmetrical.   After some x-rays today we realized they are still symmetrical but he may need to have a surgery done on some of the soft tissue to help the rotation of the right hip.  We are planning on making an appointment with our Ortho doc to discuss this further.

After several weeks of waiting we finally got the final results on his renal ultrasound.  He is having some very minor reflux and so they are going to up his medications, which he was due for anyway because of his great weight gain.

We were also informed that it was finally time to get an official MRI of his brain and spine.  This time he will have to be sedated for the procedure.  Not a huge deal in the big scheme of things, but I hate the thought of him having one more thing. 

Overall, clinic went well.  It wasn't as long as it sometimes is, but we came straight home and both had a good nap.  Now we are off to enjoy the great weather outside!

Mothers Day 2011

I opened the blog today and realized that it had been some time since I posted.  To me, that's a good thing.  It means nothing blog worthy has happened.  When you have a child with chronic health issues, boring is a great thing.

Today was Mothers Day!  I feel it is a day that I should thank my children for allowing me to be their mother.  I have two amazing children and I couldn't be more blessed. 

For the past few months I have been working hard to raise money for our Walk N' Roll, which takes place every year on Mothers Day.  The money raised helps the Spina Bifida Association of Colorado do many wonderful things.  I have been fortunate enough to be a the receiving end of those things several times.  The most recent being that they are paying for our family to attend the National Spina Bifida Confernce which is taking place this year at Disneyland!!!

I am surrounded by an incredible group of friends and family who helped our family to raise just short of $1800.  Thanks to each and everyone of you who donated!!

I was asked a few weeks ago to be a testimony speaker at the walk today and tell our story.  I was so honored to be asked to do this.

Thought I would post it here for others to read.

June 10, 2009 was a day that changed our lives.  We walked into our doctors office for an ultrasound, knowing that my triple screen had come back abnormal, but also believing that those results much be wrong.  We walked out with the reality that those test results were correct and that our lives were about to make a dramatic change.  We learned our son has Spina Bifida.

Upon finding out, like many other families who are given life altering diagnoses, we were dealing with a whole array of emotions.  We felt anger, sadness and confusion.  We felt torn between celebrating this new life we were bringing into this world and mourning the loss of our normalcy.   We asked WHY, why us, why our son?

It didn’t take long before I decided to deal with this only way I knew how.  I thrive on information.  I am a planner.  I needed to know what was going to happen when he was born.  What kinds of medical issues would he have?  What kinds of doctors did I need to have lined up?  What was our new normal going to look like?

Soon after getting our diagnosis my husband and I met with a multitude of doctors to try to prepare ourselves.  I got on the internet and started looking up information.  As we all know, the internet can be our worst enemy.  There was such devastating information about kids born with Spina Bifida and I kept reading astounding statistics about how many people choose termination upon learning that their child would have Spina Bifida. 

In my heart, I knew that wasn’t the right decision for us.  I felt confident that our baby would beat the odds.  I felt a connection to the baby inside me and it was important to me name him immediately, because he was already a part of our family.  We chose the name Evan Samuel, Evan meaning “young fighter and Samuel after my grandfather, one of the strongest men I’ve ever known. 

Not every day was an easy day.  On those tough days the thought that got me through, was that if I could see my son smile and be happy than that was enough.  It didn’t matter that his bladder may not function properly or that he many never walk or any of the other things that may come along with Spina Bifida. The possible physical issues he could face didn’t matter to me.  After he was born, and to this day, I still feel that way, his smile brightens our lives.

I realized that it was to my benefit to look for more reliable and positive resources to prepare for the unknown.  I wanted to seek out others who had made the decision to work through the challenges of Spina Bifida and continue their pregnancies.  I needed to connect with others who had already traveled this unfamiliar scary path. 

My first connection to the Spina Bifida Association of Colorado came about in a very coincidental way.  Shortly after getting our diagnosis, I was talking to my cousin, who is a former 2^nd grade teacher.  She was telling that years ago, she had a student whose mother had a baby with Spina Bifida.  She remembered that they somehow had found a way to be happy.  She had lost touch with them over the years, but she had remembered the mothers name as well as a website they had put their story on.  I got on the website and read their story.  It was the first personal  experience I had and it gave me some reassurance.  At the time I thought it may be as close of a connection I would make with others dealing with Spina Bifida, at the time, not knowing how truly common it is. 

Several days later, my cousin was at a park near her house with her kids, and by some miracle, so was the mother of this former student.  The mother Cheryl Veenstra, the baby, Cassidy, by then an 11 year old girl.  Within 2 weeks of our diagnosis I was emailing with Cheryl and had a sence that I was no longer completely alone.  It wasn’t long before Cheryl had me in touch with other members of the Spina Bifida Association. 

In July, the association was having their annual summer picnic and we were asked to come and meet other families.  At the time our diagnosis was too new and our wounds were fresh.  We weren’t quite ready to face what our future would hold.  It seemed that everyone accepted our reservations of not attending  but still continued to give their support.

When Evan was born in October 2009, I felt armed with information that I had learned from doctors and members of the local Spina Bifida community.  During our long 29 day NICU stay, I finally had the opportunity to meet Cheryl in person.  She brought with her a care package from the Spina Bifida of Colorado Association as well as an abundance of reading materials and resource information also provided by the association, and I felt officially welcomed into this new family.

Shortly after Evans birth we attended our first Spina Bifida Association of Colorado event that Christmas and it has become one of our favorite events of the year.

It has been nearly two years since we heard those earth shattering words and I still ask why.  Except that now I ask why I was chosen to go on this amazing journey.  Why did I get to be so lucky.  Why did one life changing decision, become one of the most amazing experiences of my life.  I couldn’t be more blessed, not only  by my precious little dude, and rest the of my incredibly family who has stood by our side on the good days and the bad, but also by the great friendships that have emerged through our involvement with the Spina Bifida Association. 

It is so great to have people care about your kids and truly understand what you are going through.  Although we all may not see each other but a few times a year, we are a family brought together by a common bond.

My family is fortunate enough to be embarking on a wonderful journey this summer as we attended the National Spina Bifida Association conference, thanks to the assistance of the Spina Bifida Association of Colorado.  I hope to bring back a wealth of knowledge to help educate others who are in the position we were in not all that long ago.  I look forward to meeting many more families along the way and help to welcome and support them as I once was.

Happy Mothers Day to all the great moms out there!!!

Holland

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.

Freedom

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. 

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.