Ho, Ho, Ho Merry Christmas!!!

Happy Holidays everyone!

I cant believe another Christmas is just around the corner!  Only a year ago at this time I was on bed rest awaiting our little Westin!  With so many fears and worries, I just wish I knew then what I know now.  We were back in the cities on December 5th-7th.  On the 6th we had a full day of tests again to finish of the year.  The day started reallllly early! Westin decided to get up at 5am!  We had to be at the hospital at 7:30 to get him ready for his sedated MRI.  We were both really dreading this test, one because he had to be put under for it, but mostly for the results.  This is a test where you can really get the best picture at his brain and spine.  Once out of the MRI he has another bladder ultrasound and another RNC, which is the test where they insert a catheter and fill the bladder with a radioactive dye so they can watch to see if there was any reflux.  Then they also watch to see if he initiates voiding on his own.  All of these bladder tests are done frequently to watch for any changes in his voiding or to see if the level of reflux has changed.  There #1 goal is to protect those little kidneys.

Once done with all of these tests we were of to meet with the Dr's for the test results.  First we met with Peter who is the nurse for Westin's neurosurgeon.  Hes a great guy, really easy to talk to, and tells it like it is.  Once is his room he pulled up the test results for the first time so we could go over everything together.  For the MRI they were checking for symptoms of tethered cord: Tethered cords are a group of congenital developmental malformations in which the spinal cord is fixed to surrounding tissues within the spinal column and cannot move freely at the lower end. As a child grows, his or her spinal column grows, but the spinal cord may not grow at the same rate. This fixation of the spinal cord as the spine lengthens causes tension on the spinal cord and nerves, producing various symptoms.

There were also looking for Syrinx.: A syrinx results when a watery, protective substance known as cerebrospinal fluid, that normally flows around the spinal cord and brain, transporting nutrients and waste products, collects in a small area of the spinal cord and forms a pseudocyst.

Lastly they were looking at the ventricles to check for hydrocephalus and they were also checking for Arnold Chiari Malformation type 2, Chiari malformations are structural defects in the cerebellum. That's the part of the brain that controls balance. Around 90% of kids with Spina Bifida have AC11.

Once the test results were pulled up. He looked at us and shook his head.  He said that the MRI couldn't have looked any better.  His ventricles were at the correct size, which means there is no sign of hydrocephalus which means NO SHUNT!!!! This is something that is very exciting!!!  Also there were no signs of tethered cord or any syrinx.  Also through the MRI we learned that he doesnt have Arnold Chiari type 2.  This is really rare that he doesnt have this because Spina Bifida and AC type 2 pretty much go hand in hand. 

What a relief it was to have this test over and done with, and to top it to have awesome results!  We are so blessed.  He continues to prove that he is one special kid!

Once done with Peter we were of to meet with Dr. Marker to go over the bladder tests.  These test results continue to be good.  Both kidneys measured equal in size, there is still a small amount of reflux on the right side.  This has been the same since Westin was born, at this time isn't enough to worry about.  So we don't have to have any more tests with Peter for a year, at that time Im guessing another MRI will be done to check the ventricles again.  As far as any more bladder tests, we won't go back until this coming summer!  It will sure be nice to have a few months break!

We also had some fun, lots of shopping, good food and meeting new people!  We were able to meet up with another family who has a little girl who also has spina bifida who just turned 1 in November.  We had soo much fun with them.  And I'm pretty sure Westin has a crush on Leah.. They were so cute together.  Both just happy, smiley and so full of life!  What blessings they are!  If was fun to chat because Leah also has the same Doctors as Westin.  We had lots in common with them and look forward to getting together next time we are in the cities!

Here are a few new pictures, I hope you enjoy!

“Life is an opportunity, benefit from it.
Life is beauty, admire it.
Life is a dream, realize it.
Life is a challenge, meet it.
Life is a duty, complete it.
Life is a game, play it.
Life is a promise, fulfill it.
Life is sorrow, overcome it.
Life is a song, sing it.
Life is a struggle, accept it.
Life is a tragedy, confront it.
Life is an adventure, dare it.
Life is luck, make it.
Life is too precious, do not destroy it.
Life is life, fight for it.”
― Mother Teresa

Oh where does the time go!

As usual Westin has been keeping us busy!  He has made some GREAT progress this week with his gross motor skills.  He has 4 point crawled a few times.  The first time I saw it I thought I was imagining things!  He has also pulled to stand on his own a few times.... These are such huge accomplishments, we couldn't be more proud of him!  He is one determined little boy.  He has alot started to babble a lot more, and I have even heard MaMa a few times!! he also says DaDa, Dad, Daddy and Hi Daddy... there is something very wrong with this picture! He also loves getting into things, like the dogs food and water dishes.

He is still going to PT 2x/ week, and meeting with Marcy from Early Intervention 1x/week.  Its a lot of running but it is so worth it when we look at how far he has come.  Westin has also been approved to go to the Kennedy Krieger Institute out in Baltimore.  He will participate in there 2 week physical therapy program for spinal cord injury.  We wont go until April 8th.  I decided to wait until he's a little older as I think he will get more benefit out of it.  The program is 3 hours of PT/Day.  They also work a lot with E-Stim therapy so I'm excited to try something new!!

We are headed back to Minneapolis next week for more tests.  He will have a sedated MRI as well as another renal ultrasound, and RNC.  We will also meet with a few of Westins Drs to go over the test results.  So say a prayer for more good news!

Here are some new pictures!!

And we lived through another Spina Bifida clinic

Wow am I glad to be home!  For as much as we look forward to clinics we also dread them....Its makes for a few long days, but we are home, happy and healthy!

There is something about clinic days that I love.  It makes us feel like we aren't on this crazy journey alone.  As we were sitting in the radiology waiting room there were two other families waiting for tests as well with little ones with Spina Bifida.  It was fun to listen to their stories, and to know that as Westin gets older we will be okay.

As normal, Westin was run through the ringer with all of his tests.  He had a head, bladder and kidney ultrasound.  He also had a RNC "Radionuclide Cystogram" which is a diagnostic imaging exam that determines if Westin has vesicoureteral reflux.  When he had this test in June we were told he reflux on the left side which was a grade 1-2.  The test results this time reviled that this was unchanged.  Which Dr. Glasser was very excited about.  He even stated that its possible that Westin could outgrow this reflux, which he said is very rare, but possible.  He said there is no need to start cathing! YAY!!!

We also met with Dr. Marker who went over the head ultrasound.  This will be our last head ultrasound because Westins soft spot is closing and once that happens the only was to view the ventricles is through an MRI.  These results were also wonderful.  Thank God!

They were all so happy with Westins progress.  The tests couldn't have come out any better.  We will head back down to Minneapolis on December 6th for a MRI which is standard for babies with Spina Bifida around a year old so they can get a baseline for when he is older.  We will also have another bladder ultrasound and another RNC.

So for now we will continue with physical therapy 1x/ week as well as early intervention 1x/ week.  He still isn't crawling on all 4's but he sure can get around.  Hes into EVERYTHING.  Its sure fun to watch him get into things and to see how excited he gets when he finds something new. 

We have sooo much to be thankful for.  Westins is always happy, smily and he just rolls with the punches.  We thank God everyday for bringing him into our lives. 

Here are some new pictues! I hope you enjoy!!!

Teeth, smiles and DaDa!

Once again I'm going to start out by saying I'm sorry, I'm so slow on these updates. Life with a husband,two dogs and a baby gets real interesting.  Westin is keeping us busy as usual. We have physical therapy 1x/ week and we also meet with early infant development 1x/ week.

Westin is growing like a weed.  He loves everything he eats, his favorites are peaches, strawberry pear granola and blueberry yogurt.  We also started to put Cheerios on his highchair, he hasn't quite mastered the hand mouth thing yet but the dogs sure love cleaning up his messes!

This past weekend Westin said his first word!  We were playing on the floor and he looks up at me and says dada... Well im not quite dada but we were so exited!!! He also has teeth!  Just the bottom two but its so cute with he gives that big grin of his!  He is also now getting up on all 4's and will rock back and fourth and will scoot backwards but no forward crawling yet, but I have a feeling that will be here before we know it!

We have a few appointments coming up. We get his new set of AFOs on the 26th and we are hoping that the 3rd times a charm. Since these are being made at a different place we are hoping for better luck.  We also head back to Minneapolis October 16th for another round of tests.  We will have the standard head, renal and kidney ultrasound, as well as a RNC.  We are curious to see how the bladder tests come back and see if things have changed since last time.

This just in...Westin is starting to army crawl..so cute...

Here are some photos and a few videos...

Westin when he started getting on all 4's and starting scooting backwards

Westin's Gerber Smile!!

Westin acting surprised by Daddy

Someone just turned 8 Months:-)

Even with a cold can't take my smile away

 

The CASTS are OFF!!!!

Well another three weeks went by with Westin in casts.  So not only were we ready, but Westin was ready to get his casts off.  Hopefully once and for all!!   So we drove up to Grand Forks to get them removed and for his new AFO bracing.  Westin didn't handle the removal of the casts like he normally does.  Usually he does it with a huge smile on his face.  This time however they decided to use the loud saw, and it scared him.  After the casts came off we went across the hallway to get his AFO's.  The appointment didn't go as well as we wanted.  The guy whom worked on Westin's bracing wasn't the nicest man around and didn't seem very professional.  In the end, we don't care about all of that.  We just want Westin's bracing to hold his feet in place and provide support. Now that we have new bracing and are out of CASTS we are hopeful that he soon will be able CRAWL!!

After all that we have been through he just keeps plugging away with smiles and happiness.  We are blessed to have him in our lives and nothing will ever change that!!

All our Love
The Wibergs

Westin Loves His Food

I LOVE LOVE MOMMY AND DADDYS BED

Here we go again....

On Monday June 25th we went back to Grand Forks to have Westin's feet looked at again. Ever since we got his AFO's we have struggled with them. They don't stay where they are suppose too, no matter how tight we adjust them. We even had them adjusted but still we knew something with this just wasn't right. So after meeting with the Dr. he decided that we would need to go back to casts for a few weeks to hopefully get the positioning back that we had lost due to the poor making of the braces. We decided to hold off for a week on the casts so that we could enjoy our family vacation, and we did just that.  Westin went in the pool for the very first time!! Here is a photo of it...

Westin amazes us everyday with how he preservers through it all. No matter what gets thrown his way he handles it with smiles and giggles.  His giggles definitely put smiles on our faces.  When we got back from our vacation we had to make a pit stop at Altru in Grand Forks to get those darn casts back on.  Boy did they make them large this time.  It's crazy to see how Westin can even lift up his legs with these on.  We are keeping our fingers crossed that we will gain the position that was lost after only 2 to 3 weeks of casting.  Then who knows, but we are hopeful that with the correct AFO's that this headache will go away for awhile.

My half birthday

 

Daddy holding me up after the fishing tournament

Hanging out with Mommy on a stroller ride!

Spina Clinic

Well Westin had his first ever Spina Bifida Clinic last Tuesday which basically is where they do a set of tests in the A.M. and we see a group of doctors at one time later in the afternoon to go over.  So in the morning our little guy had the following tests done: a renal, kidney, bladder, and head ultrasounds.  Sounds like a lot and probably was for him, but they really didn't take that long to get done.  We spent more time waiting throughout the day then the actual tests and doctor time.  Well there was plenty of good news in that Westin's head, and kidneys are great!! Still no hydrocephalus which is still amazing.  We thank god everyday for that!  Also, the doctor said that his kidneys looked and I quote "perfect."  The one thing they talked about was his bladder, and it wasn't necessarily bad, but wasn't great either.  The doctors told us that Westin has a thickening of the bladder wall or "muscular bladder" would be the medical term for it.  It basically means that his bladder doesn't expand and contract like a healthy bladder does.  However, they still didn't see very much reflux which is another great thing!!  So like I said we had and have plenty to be thankful for.  So all in all we had a great trip and are very proud of our little man.  We don't have to go back for 3 or 4 months now until our next check up to make sure everything is still going well.  So hopefully Westin will continue to progress in the right direction.
That is it for the update, and we hope you enjoy some of the photos:)

The only way of finding the limits of the possible is by going beyond them into the impossible.
Arthur C. Clarke

What a cutie!!

Just hanging out with my Grandpa

Another smile:)

Watching the Twins win with Mom and Dad!!

Cast Free!!!

Happy Sunday to all,

Well we have lots to report.  Westin is finally cast free!  We didn't think the day would ever come.  He now has his AFO "lower leg braces" which will help keep his feet in the correct position, because of his spina bifida the muscle tone in his lower legs/feet isn't like me or you.  So these help give the ankles and feet more support so he is able to bare weight on his legs.  We are struggling a little bit with the braces because its really hard to keep them in the correct position, We have already had to go back once and have them adjusted.  

Westin has also started rolling over from his back to his tummy.  He learned to do this with his casts on, so now that he is cast free,he can really roll.  I think it is enjoying his weight loss. :)  I know Travis and I sure are enjoying it.

Bath time is also a lot more fun!  no more sponge baths for us!  He doesn't seem to mind them to much.  Little by little he seems to like them more and more. 

Now that we are done with casting, its only natural that we are on to the next thing.  We leave tomorrow afternoon for another full day in Minneapolis on Tuesday.

Our day starts at 8am with a Head/ Renal and Bladder ultrasound.  The head ultrasound will check to make sure the ventricles are still within the normal limits and there is no sign of hydrocephalus, which thankfully we have been so fortunate to avoid so far.  

Then at 9:15 we have a RNC which is where dye is put into the bladder and then they watch to see if there is any reflux back into the kidneys.  When this test was done when Westin was born he did have level 2 reflux on the right side.  This is something that can also change at anytime.. it can get better or worse.  This has to be closely monitored because its so important to protect the kidneys.  If the reflux is to much of a problem them we would have to start cathing Westin.  This is very common in kids with SB.

Then at 10:30 we meet with Neurology to go over the head u/s results.  

We then will hopefully get some lunch and then get in a meeting with the Orthotics department to maybe get Westins braces adjusted again.  This would save us a trip to Grand Forks.  Then to end out the day we have Spina Bifida clinic at 1 p.m.  This we will have probably every 3 months and then after a year maybe it will go to 2 times a year.  During clinic we meet with Westins team of Dr's  Which include Dr. Marker-pediatrician who specializes in Spina Bifida, Dr Glasser who is a pediatric neurologist, who will go over the kidney/renal u/s and the RNC, and Dr. Seizert who is a physiatrist who focuses on the musculoskeletal system. I'm pretty sure the only thing missing is a partridge in a pear tree.

If given the opportunity I wouldn't change a thing.  This is just a part of this crazy thing called life and Westin makes every bit of this bumpy road worth while.

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves

Hope you have a great week, enjoy the pictures of the cutest baby I know! 

Waiting to get fitted for AFO's

Westin's Little AFO brace

TUBBY TIME!!

At the Zoo

Another at the Zoo

Just hanging outside on the deck with Mommy & Daddy!!