Medical Madness

The last few weeks have been a whirlwind of appointments.  Last week Evan came down with a high fever that was not subsiding.  He was lethargic, sleepy and refused to eat.  Of course as any SB mom would do, I immediately thought shunt....
The fever started on early Saturday morning and on Tuesday I finally decided to take him to the pediatrician.  They did the usual urine culture and blood work they do when he gets this way.  We are always hoping its just a bad UTI.  That sounds funny to say, but I would take a UTI over a shunt revision any day. 
On Thursday when the urine culture came back it showed a mild infection but our pediatrician wasn't convinced that it was our culprit and after 2 days of a strong antibiotic things were not improving.  If I've never mentioned it before I LOVE our pediatrician. We were just assigned her when Lauren was born and fell in love.  Of course with Lauren we really only saw her for well checks and the occasional cough and cold.  When I was pregnant with Evan I found out our insurance was going to change and we would not be able to see her anymore.  I cried, and cried, for days.  After a year our insurance changed again and we were able to see her again!! When we go, she never makes me feel like I am paranoid for bringing him in, yet again.  She spends tons of time with us and never makes us feel rushed.  She emails to check to see how Evan is if she happens to get a note that we saw one of our specialists at Childrens.  She calls on weekends to give us test results, and she calls from vacation to make sure things that he needs are getting done.  She truly spoils us and I hope she knows how much we appreciate all she does for our family.  As much as I love her though, I was not to excited when she thought our best course of action would be to go to the ER just to assure nothing was going on with his shunt.  So Thursday night we trekked to the ER.  He had bloodwork, another urine culture and MRI and renal ultrasound.  We were sent home...with nothing.  They assumed it was just a virus and it would go its course.  Friday, our doctor wanted to see him again, as she was concerned his fever was still there.  When we got there, in perfect Evan style, his fever was mysteriously gone, his smile was found and a rash appeared.  They diagnosed him with Roseola. 

Thankfully, he has been well since then.  Yesterday we had our long awaited swallow study and he did amazing.  They cleared him to have all liquids except water.  They said since water has no smell and no taste some people have don't trigger their swallow reflux and choke.  This means that we are one step closer to getting rid of his g-tube!!!!

Today, we took him in for his first brain and spine MRI under sedation.  As always he was such a stud.  He work up from the anesthesia happy as can be.  We were lucky enough to be able to meet with the neurosurgeon today as well and get results.  All is good!!  Nothing looks concerning at all.  It seems like this was the first test since I can't remember when with normal, good news. 

Thank goodness school hasn't started yet and Lauren has been at her daycamp everyday having fun, while all this was going on.  Sometimes I like for her not to know the day to day stuff.  She is a kid and needs to have fun and not worry about her brother.

Now we get a few days off before meeting with his ortho doctor on Friday. 

Evan and Lauren never ceases to amaze me with their spirits and resiliency

Playing in the waiting room while waiting to see the neurosurgeon.  You would never know just 4 hours ago he was under anesthesia.

 Waiting patiently for the doctor!

His perfect spine!

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...

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.