Faces of Spina Bifida Video

This is a video put together by my friend Christy and I for a recent Spina Bifida Association of Colorado fundraiser.

http://www.youtube.com/watch?v=eKie0P46eJk&feature=share

On A Positive Note...

A while back I realized that every time I sat down to do blogging, something bad was going on.  Whether Evan was sick, or I was having a problem with insurance, or I was just having a down day.  I want this blog to be an outlet, but I  am not a negative person and I don't want this blog to represent me as that.  I tend to be upbeat and  positive on most days.  I know there are hard times and struggles, but somehow it always works out in the end, or maybe doesn't work out, but is the way it should be. 

The last time I sat down to blog, I was fuming about Evan not being able to get the insurance to cover the extra physical therapy he so desperately needs.  Half way through my ranting, I got a call from the nurse at my doctors office saying she just received the approval. 

Honestly, things are pretty good. I have a beautiful daughter who amazes me with how smart she is everyday and above all she is a great big sister.  Nothing sounds better when she and Evan are laying on the floor together laughing over absolutely nothing.  Evan has changed my world.  His smile...melts me. 

I have always wanted to be involved with something that I could contribute to and I have found it.  Well to be truthful, it found me.  I am working on two different committees with our local Spina Bifida Association and I take great pride in both of them.  I am doing some serious thinking about running for our board.  At first I was hesitant as I have never been on a board and wasn't sure I could offer much to them.  Now as I consider it more, I realize it could be a great learning and growing experience.  And, above all, it is obviously a cause I believe so deeply in. 

The lights of my life!!!

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.

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.

Seven!

I have a seven year old.  SEVEN. How did that happen? 

My beautiful daughter turned seven on Monday March 28th.  She came into this world 5 weeks early.  Her original due date was May 3rd, my moms birthday.  The moment I knew her due date, I knew she was meant to be mine. 

It is so amazing to watch your baby become a person.  She has a personality all her own.  She is defiant, curious, creative, funny, sweet,sassy and everything in between.  I have seen her be an observer, a leader, an artist a dancer and an amazing big sister. 

I couldn't possibly love her more!

Happy Birthday 3/28/2004

1st Birthday

3rd Birthday

5th Birthday



7th Birthday



Growning Up

Days like today remind that beyond all the medical terms, doctors appointments, medications and worries, Evan is just a baby, our baby.  He is our last baby and I am trying to cherish every moment.  Every first, every last. 

We started the day shopping for new clothes for Evan.  He is finally  putting on weight and growning out of his clothes.  Until recently he was still wearing clothes I got during my baby shower.  He is still so tiny he can still fit in some of the same clothes he did this time last year.  At last check he was 18 pounds!

We then took him for his first "real" haircut.  I have trimmed his hair a few times before at home, but nothing too much.  He did so good.  I held him and he just sat wondering what was going on.  I sat thinking, my baby is growing up...to fast.  But I must admit he looks absolutely adorable!!!!

BEFORE...

What are these people doing??

WOW!

I'm a big boy!








Broken Leg: Part 2

I took Evan back to the ortho today to see how his broken leg was doing.  They took and x-ray through the cast that was put on last week, only to show the bone had moved back to where it was prior to the first casting.  After some discussion we decided to take off his cast, reset the bone and recast him.  With a kid who has feeling, they would be put under IV sedation for this procedure, but they felt Evan would be fine with nothing.  He screamed the first time, he screamed this time.  I truly don't think he has much feeling in his lower legs, but I wish they had been able to give him something. 

After the new cast was put on they did another x-ray to see how it looked and the bone had slid again during the casting.  The PA who we were seeing said that a 2 to 10 degree angle on the bone was considered acceptable, but after the second cast Evans bone was at a 14 degree angle.  So, I realize it is only 4 degrees, but to me, thats too much.  I have a kid, who's walking ability is already compromised and I don't want to do anything additional to add to his challenges. So the options we were given were we could take the cast off, reset it again and recast it a third time, cut part of the cast away and put spacers in the cast to push his leg into place, but because of his lack of feeling wasn't the best choice becuase they sometimes cause issues and Evan wouldn't feel it as a way to let us know or do nothing and reckeck the leg next week.  

 I am not thrilled with any of these options.  I asked him if our regular ortho, who has seen Evan since he was 5 weeks old and has done several surgeries on him knew what was going on with him and what her opinion was.  She was at another office, so he called her, she said she was fine with the way the bone was and to follow up with her next week.  I am frustrated.  I explained my frustration to the PA.  I try so hard to advocate for Evan, but at what point is it advocating versus being a bitch.  I know I am not a doctor and I try not to second guess their knowledge, but this seems unacceptable to me.  I want his leg straight.  If that means surgery, than so be it.  I want his leg fixed. 

So we return again on Monday to see our regular ortho doc. I never try to sound negative, but I don't expect much improvement, what I do expect is better options. 

A Bump in the Road

The last two weeks have been great! Evan has been feeling well, happy and gaining weight! We were smooth sailing...until....

Yesterday I took Evan to his pediatrician for a recheck on the ear infection he had a few weeks back.  He had already had two courses of antibiotics for it and I figured it was probably gone.  I guessed wrong.  His ear still looks red and inflamed and we were started on a third course of an even stronger antibiotic.  Our pediatrician also gave us a referral to see an ENT to discuss the possibility of tubes.  She's not convinced that he needs them, but wants us to see them regardless since this is his first ear infection and it has been so resistant.  I can handle that.  All kids struggle with ear infections.  But then...

Last night as I was getting Evan ready for bed I noticed his lower right leg was red, hard and warm as it had the the night before.  The night before I thought it was due to his AFO being on too tight.  Last night I was feeling around his leg and could literally feel his bone move back and forth.  I was literally sick to my stomach over it.  We were just making progress with him after his surgery. Things had been quiet for a while.  I wanted to scream.  I took him to see his Ortho doc today and sure enough, he has a break.  It is a slanted break so I was told that they would try to set and cast it, but it was similar to putting a ball on the top of a hill, that there was a good chance that the bone would move back down itself on its own.  Because he can't move his lower leg, it help the situation, but if it doesn't work, we are headed to surgery. 

I was so enjoying some peace and lack of doctors around here.   It's just another bump in the road, but one I was not ready for.

This Week

There has been a whirlwind of SB kiddos in the hospital this last week and it has gotten my mind going.  We have also welcomed two new babies into our special SB families. 

It breaks my heart whenever I know another kid is in the hospital.  It is awful what our kids have to go through.  But it also really hard on us moms too, and dads and siblings and everyone in our lives how care about us and our kids.  We ache for what these kids have to go through.

Whenever their is an issue going on with our kids, our SB family surrounds that person with love, support and tons of prayers.  For me, I ache with them, as we have been there too.  Feeling alone and scared. Not always knowing what the right decision is.  Being stuck at the hospital, feeling like you are trapped inside this other world, where the rules are different and the consequences are monumental.  Missing your friends and family.  Missing other special things in our lives. Birthdays, school events, sports practices and games. Missing your own bed. It's hard, really hard.  

I worry about what will happen when Evan gets older.  How will he handle these hospitalizations?   Right now, he does so well.  He has spent so much of his short life having issues, in the hospital, going to doctors appointments, having therapy.  I wonder how that will change when he gets older and realizes not all kids have to go through what he does.  I hope he has a bond with other SB kids that give him the support I get from my SB friends.

So to the Summers, Ross, Honey and Deisher, families (and those that I may have missed) out there having a tough time, I understand.   I wish I could do more.  I wish I knew how to make it better for Evan, for all the kids. 

Congratulations to the Kern and Ramsumair families!!

Prayers to you all.

Sister Sunday

After 29 long days, Lauren finally gets to meet her baby brother.  It was love at first sight!

I often write about Evan on this blog, but it really is about our family.  A huge part of our family is big sister LAUREN! She is an amazing big sister.  She has loved Evan from the moment she first laid eyes on him.  When he was born, the hospital was not allowing kids into the hospital due to the flu season, so she had to wait 29 long days to meet her baby brother. 

I LOVE the way she makes him laugh, really the way she makes all of us laugh.  I am so proud of her for her protective nature of her brother.  He couldn't be more lucky to have her for a big sister!!


 




Christmas 2009

 



Easter 2010





Lauren giving Evan a push his first time ever in a swing





Evans 1st birthday! October 9, 2010




Christmas 2010





Mission to Medicaid

Earlier this week we had a Medicaid home visit to get Evan approved for the Medicaid Disability Waiver.  In the state of Colorado, in order to get disability Medicaid it is quite a process.  First you have to apply for Social Security Disability Insurance, even if you know you are going to get denied, as we did because of your income.  You have to have that denial before you can proceed in applying for the Medicaid.  Once you apply for the Medicaid they come out to do a home visit to assure that your child is truly disabled.  After the home visit, if you qualify, than you are put on a waiting list to actually get the Medicaid.  A 3 to 5 year waiting list... 

Colorado only has 1300 spots available for disabled kids at any given time.  We were told that right now we are approximately number 400 something on the waiting list.  So once you are on the waiting list you wait for a child to:

1. Get better
2. Turn 18
3. Die

I can only hope that a ton of kids get better or turn 18, and quickly...


It's a funny thing that they sent someone out to observe my sons disability.  The woman came and asked a ton of questions about Evan. After she left and I was replaying the scene in my head, I realized that a lot of my answers were, not embellished, but maybe dramatized.  I don't usually do this.  I often find myself telling people that his needs are just part of our day to day routine, that he is strong and can overcome his challenges.  I realized I did this though because I really wanted him to get approved.  We have great health insurance, but it costs us a lot of money out of pocket.  Also, sadly, there are things that we can't get for Evan through our regular insurance which we able to receive through Medicaid, and receive them for free. 

Now, we wait.  

Mostly Calm

Things around here have been fairly uneventful and mostly calm since coming home from the hospital 2 weeks ago, except one false alarm.  On Thursday I got a call from daycare saying that when they cathed him a lot of blood came out of the catheter.  I immediately assumed it was a bad UTI, so I called the doctor for an appointment that afternoon.  When I got to daycare to observe for myself what they had gotten out of his cath, it was an alarming amount of blood,  I thought it seemed a bit too much to be a UTI.  When we got to the doctor they cathed him again to try to send a urine sample to screen for a UTI, but they also just got blood.  They sent us for blood work to assure there was no internal bleeding somewhere and the pediatrician called our Urologist.  The blood test came back normal and they were unable to detect anything in the urine sample because it was pure blood.  .  The doctor came back to us and told us they thought maybe the catheter that had been used had an uncut sharp edge that made a cut somewhere inside his bladder, more than likely near his prostate because that is a very vascular area.  He had a Foley catheter put in so that we would not have to continue inserting catheters and aggravating the injured area.  He gets that taken out tomorrow.

While waiting for all this information I got on Facebook to the Spina Bifida Group and asked if anyone had ever experienced this.  As always, my fellow SB family was right there with reassuring information and prayers.  Other people had gone through this and it helped calm my nerves that nothing serious was going on. 

Other than this happening he seems to be doing really well.  We had a follow up with the GI doctor last Monday and he was only down 1 ounce since we left the hospital.  This is the least amount of weight he has lost between visits for a while.  He is still not eating the way he was before the hospitalization, but he is getting there. 

Tomorrow is the start of a new phase for Evan as he starts Speech Therapy.  As of now, he babbles and the only resemblance of a word that he can say is "dada" although I'm not sure he really understands that it has meaning.  I am so excited for him to start talking and being able to communicate with us.  I am so looking forward to hearing the sweet word "mama" from him. 

In the News

It's been almost a week since we have been home from the hospital.  Evan is doing amazing,  You would never know he had 2 surgeries just 8 days ago.  On Monday, I took him to the pediatrician for a follow up from our hospital stay only to find out that now he has an ear infection, so we had to start him on antibiotics.   This kid can truly not catch a break.  It took him a few days to get his appetite back but we are hoping that this surgery will be the answer.
Earlier this week I got word that our insurance company has finally approved a wheelchair for him.  He has a chair that is on loan, but it's too big and one his size will be easier for him to maneuver.  I am excited for him to have the opportunity to truly be mobile. It is hard to watch him observe everyone around him moving and see in his eyes how badly he wants to do the same.

This has been a craze of talk about the new study released regarding prenatal surgery for kids diagnosed with Spina Bifida.  A lot of other moms are questioning themselves and the decisions they made regarding being involved with it, as am I.  I never got a ton of information on the study other than the basics.  I knew with just the basics that as much benefit as it may have on Evan, there were risks.  Risks for him, for me and for our family as a whole. I worried about what it would do to Lauren for me to be gone for such a chunk of time.  I worried about how we would pay the bills if I couldn't work.  I worried I could lose the baby in my belly who I already loved so dearly.  It wasn't the right thing for us.  I must admit there is that small question in the back of my mind how differently he would be physically if we pursued it more, but in the end, it's his personality that makes him so amazing.  Even if he will never be a football star, or a famous track runner, even if he never runs at all, he is ours and he is perfect.

Give Love

This post came from a fellow SB mom, Joanna!  It seems so appropriate for Valentines Day and really any day which  you are lucky enough to love or be loved!!

Give Love

Because it's February.

Because I just decorated my house in pink and red hearts.

Because Valentines are not just for couples...but friends, mommies, daddies, siblings, classmates and neighbors.

Because everybody needs love. And not the romantic comedy, butterflies in your stomach, plucking petals off daisies kind of love.

They need the "I'm yours forever" kind of love.

The "we can do this together" kind of love.

The "can't stop starring at you" kind of love.

The "I'm always there for you" kind of love.

The "I can't keep myself from smiling around you" kind of love.

The "I promise to make time to laugh with you" kind of love.

The "everything you say is so important to me" kind of love.

The " I couldn't be prouder of you in this moment" kind of love.

The love that lifts you up....

Squeezes you tight...

Makes even hard times feel alright..

The love that teaches you all that you need to know...

And gives you support you need to grow...

The undeniable you were made for me...

And together we make a family...

What's mine is yours...

I treasure each kiss...

And everyone deserves to feel like this...

Kind of Love.

Because real love is something that cannot be bought - only shared. We need it from the time we are born - and those of us who having loving families know that NOTHING could have replaced that. The love of family - the love I was given as a child - made me who I am today. It teaches us how to love the rest of our lives. It can never be truly expressed in the form of greeting cards, chocolates, flowers, or jewelry. Those sweet tokens and gestures give momentary happiness - it's the feeling love behind them that really means anything at all. So with that in mind, and in the spirit of this holiday of love - I would like to propose the perfect gift for your loved ones.

Give the gift of Love itself.

Give Love.

You can bring joy and love not only to those who hold your heart -

but to child who needs your help.

Give Love.

By helping one little boy come home to the family who is waiting to give him this kind of love. The kind of love every single one of these children pictured above are given every day.

The kind of love so many of us are blessed to have.

The kind of love he deserves.

Give Love.

Shea's story is a remarkable one - and it is only just beginning. He now has a family ready for him - and Shea is WAITING to come home. His family is actively completing the adoption process - eager to give Shea the love, support and care only a family can give. The only thing we can do to help them bring Shea home as soon as possible is to GIVE.

Give what you have.

$5, $25, $50

It's not the size of the gift, but the size of the heart behind it.

GIVE LOVE.

It is so costly to adopt internationally - so much so that many people say "we can't afford that" or "it's just not possible for us". But this family has given everything they have not once, not twice, but 3 TIMES (read their blog - they are an amazing family)and is making that leap of faith to make Shea a part of their family - but they need help raising the last bits.

(And in adoption language, "bits" = $9,000!)

They need our HELP!

As a friend so honestly reminded me " Let's face it ... we all spend/waste $$$ on this every year. The chocolate is gone...the flowers die... and all you have is a distant memory of the token(s) you invested in."

How much more meaningful - how much more noble - how much more true to what love is all about - to give that money instead to this family - to this little boy -

to bring him home - to give him Love.

So help share the love...with Shea. :)

Isn't that the most adorable Valentine ever?!

It's message is simple - it's purpose sincere.

Make a donation (even just $5!) in the name of a friend or loved one - to Shea's Adoption Grant (through the chipin on the right hand margin of this page) or visit his family's blog and donate through their chipin (it all goes to his account.) Then print out these adorable Shea Valentines (see Donation Gift Cards for the printable link) and give them to your sweetie, your sister, your mother, your friend - and see their faces light up at the sweet face on the card.

I can't think of a sweeter, kinder, more beautiful way to Give Love.

Can you?