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!!

And then there was.....

Lucky number 13....sets of casts that is and we hope that is it. Westin's surgery went well, and he is now in his final set of casts!!!!!! We head back to Grand Forks to have them removed and to get him fitted for his AFO's on May 25th. I don't know what part we are more excited about. Being able to dress him without needing two of us to pull his pants on or being able to give him a normal bath. I'm so over these sponge baths.  For the 4 months he's been alive he has had only 4 tub baths.  First we couldn't give him a normal bath due to his umbilical cord/his stitches in his back.  Now of course it was because of the casts. I think we will have to have our own tubby time photo shoot :)  Below is a picture of our little trooper before his heel cord lengthening surgery.

Its about time....

that I update everyone!!! I'm sorry for the delay in updating.. its hard enough to find time to even find matching socks to wear to work!!

Just to give you an idea of what we have been up to.  Westin is now 3 1/2 months old! I cant even believe it.  we are also in our 12th set of casts, and Westin in finally ready for bilateral heel cord lengthening.  The surgery is scheduled for tomorrow the 2nd.  He was ready this past week but Westin got RSV from daycare and that delayed his surgery because he has to be able to pass his pre-op.  So our goal is to be cast free by June 1st.  We are excited to be done with those stinky things and get his AFO's.  It will be good to get him in those so we can work on teaching him to bear weight on his legs. 

Also we has Westin baptized on April 22nd.  He was a perfect little angle throughout the whole service until we stood up to bring him to the front of the church... right on cue he started screaming at the top of his lungs and didn't stop until we sat down.  :)  but other then that it was a beautiful day spent with
family. 

Also on Thursday the 3rd we have a head ultrasound scheduled in Fargo.  We haven't had one since March 2nd and to me I feel like his soft spot has changed a little bit which is something we are always monitoring because hydrocephalus can develop at anytime.  We are praying that everything is the same and that I'm worrying for nothing.. but its better to get it checked.

Please keep Westin in your thoughts and prayers over the next few days as we go through with his surgery and head ultrasound.

God didn't promise days without pain, laughter without sorrow, or sun without rain, but He did promise strength for the day, comfort for the tears, and light for the way. If God brings you to it, He will bring you through it.

- unknown

Love the Wibergs!

Happy Family!

Photo Shoot!!

4 generations

4 generations

Big Boy!!

6 Months Ago Today.....

Six months ago today we found out that our little blessing, Westin would be born with spina bifida.  Of course we were crushed after that appointment because nobody can prepare you to hear news like that.  We went from having a normal happy pregnancy to worrying about what the outcome would be after 9 months.  Over that time Heather was able to learn many things about spina bifida by blogs.  She eventually got hooked up with the website called babycenter.com which also was a great tool for us.  The things she learned helped us understand what Westin would possibly go through and helped us look to the positive.  Westin is an amazing little boy and we are very proud to have him in our lives.  We hope that you enjoy the videos! 

I'm reporting with....

SUPER NEWS!!! Our appointment in Minneapolis again couldn't have been any better. Westin's ventricles were still unchanged...hooray!!!! Now...drum roll please, we don't have to go back until June!!!!

Casting is still moving right along. Although we finally got it figured out. When we were in the see the Dr. last week for Westin's cold/rash we mentioned what a pain it's been to soak off the casts... Well I guess we should have said something 4 weeks ago because Dr. Halvorson said.. Well I can cut them off!!!!! I bet the look on our faces was like a kid at Christmas! So Monday morning we headed in to get them cut off. The saw was loud but Westin didn't mind it one bit.

Monday afternoon we were back in Fargo for another set. We are making progress, the Dr thinks we will need two more weeks of casting and then we will be ready for Westin to have his tendon release. But time will tell. Monday night I could tell that something was wrong with the right cast. So we called and sure enough Tuesday we were back in Fargo again........ Puke! But they put a new cast on and he was good as new.  Not to mention they gave us a $5.00 voucher for the Sanford Cafateria for our troubles...haha!

So now we are getting the process started for MA, medical assistance.  At first we were told that he didn't qualify, which was totally wrong.  Now we got to sit down with a lady from Fargo that deals with this.  She went over everything and helped us get all of the paperwork completed.  Our next step will be for another home visit where a lady from Wahpeton will come look over Westin.  Eventually we will have people coming into our home weekly to work with him.  That part we are not really excited about, but overall we know that it will be good for us and Westin.

Please keep Westin in your prayers.

Quote of the day:  You have to stay in shape.  My grandmother, she started walking five miles a day when she was 60.  She's 97 today and we don't know where the hell she is:-)

Casting.....YUCK

We have met a new enemy.. casting Westins feet. Yuck We all know that this has to be done but oh my what a pain this truly is. I had no idea it was going to be so much work.m From finding clothes that fit over the casts, to diaper changes.. to our weekly cast on session in Fargo to our end of the week soak off session.

The first week we removed them it took just under two hours with scissors, plyers and a razor blade. No babies were harmed in the process!!

3 weeks later we got a pretty good system down, this past week it only took 30 minutes and me, Travis and my mom. Westin developed a pretty bad pressure sore on his left foot so this week we only have one cast.

This past week Westin got his first cold.....talk about no fun, so we brought him into the dr to get that checked out as well as a rash that he developed 2 weeks ago... Turned out to just be baby acne and exema. After a few days of hydrocordozone he looks like a new baby!

We head back to the cities tomorrow for a head ultrasound, as well as a meeting with the Dr. to go over the results.....fingers crossed that his ventricals are unchanged. We feel his soft spot everyday along with measuring his head. From what we can tell things still look good but we will find out for sure tomorrow.

Westin has learned to smile at his mommy and daddy, and also another accomplishment....he slept a 6 hour strech last night!!! Woohoo...let's hope he keeps that up!

Of course im including pictures... They change so fast!

"A baby will make love stronger, days shorter, nights longer, bankroll smaller, home happier, clothes shabbier, the past forgotten, and the future worth living for. ~unknown"