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!!