Baby its cold outside!!

Well December sure came in with a bang!  Less then a week ago it was upper 30's and no snow.  Today its -14 below and we have about 8'' of snow.  YUCK!  Every year around this time I always ask myself.. why do we live here? 


A couple of weeks ago we had our consult with ears,nose and throat up in Fargo.  The Dr definitely thought it would be a wise decision to have Westins tonsils removed.  While I figured this is what he would say and I know he will benefit greatly from it.. the thought of this surgery makes my stomach turn.  Its about a 2 week recovery time.  The surgery is scheduled for January 10th.  3 days before his 2nd birthday... what a present he is getting from us....  I guess we will just have to celebrate a little later then planned!

The past few days have been a little rough around the Wiberg house.  Travis has been gone this week for work and Westin and I both ended up with the flu..  Nothing like cleaning up chunks of hotdogs from his bed at 3am.  Oh the joys of being a parent!! YUCK!!!

You can learn many things from children. How much patience you have, for instance. ~Franklin P. Jones

Theres always something!

Happy November Everyone!

I hope your fall is going well.  Its hard to believe that Christmas is just around the corner again.  The holidays seem to sneak up on me so this year I decided I was going to be ahead of the game.  We put the tree up along with all the decorations 2 weeks ago!  I little early.. maybe to some but what the heck I say just go for it!  Travis also decided today to be Clark Griswold and put out a bunch of lights.  I love this time of year!

Now for what Westin is getting into, how about.....EVERYTHING!  what a wild age!  Also the terrible 2's are in full force.... 2 months early?!  No one told me that was going to happen!  Although we are getting smarter about this.  We have child proofed all the cabinets that we don't want him in, which has cut down on the amount of times I am saying no a day, and also the amount of melt downs.  Of course we have a house full of toys.. but instead the Lysol wipes are so much more appealing. 

He is also a little copy cat.  He is my little cleaning buddy.  He always wants a wet rag to wash the floors... he says "Clean..Clean"  I cant wait until he can vacuum!  I will have my own maid service!  He also loves to color, paint, play with tractors, read books, pick on the dogs, and dump all his toys out and then leave the room. Go figure.

As far as his health for the most part things have been great.  This week we have been dealing with some constipation so I'm not sure what that is all about but we are keeping an eye on things.  Also over the past 2 months I have notice when he sleeps that he seems so restless and that he has also started to snore.  A week ago I brought him is to his Pediatrician and sure enough he has HUGE tonsils.  So we have been referred  to a ears, nose, throat specialist.  This appointment isn't for a few weeks so It will be interesting to see what they say.  His pediatrician said he wouldn't be surprised if they wanted to take them out...    UGH! Just when I think we will have a break.. NOPE! Westin sure knows how to keep us on our toes. 

He gets better and better every day with his walking... he is even trying to run..  He can also walk without his AFOs which is fun.  I am looking into maybe switching to a SMO which is still a brace however it only goes up past his ankle.  He has pretty week ankles so he still needs that support.

We are so blessed with such a determined and stubborn little guy!

I hope everyone has a great Thanksgiving.  we sure have a lot to be thankful for!

“Be thankful for what you have; you'll end up having more. If you concentrate on what you don't have, you will never, ever have enough”
― Oprah Winfrey

 

 

 

Trick-Or-Treat!

Out for one last fall walk

Shopping in the news paper for a tractor!

Update from our visit to Gillette

Hi everyone!

I just wanted to write a few updates on Westin and then tell you about our first experience with Gillette.

Well once Westin started walking he hasn't looked back!  He is loving his new found freedom.  Every day he gets better and better on his feet.  The other day at Trader Joes he even had to have his own mini cart and pushed it all through the store.  At one point I looked over and he was filling his cart with boxes of Mac-N-Cheese!  SO cute!!!

Also since he has started walking his left foot isn't turning in really at all anymore.  This is great news, this means that when hes walking he doesn't need his de-rotation straps.  Amen! Those things are a pain in my you know what! 

He is also saying more and more words everyday.  This is such a fun age.  I wish he would stay like this forever!! :)

Now for the update of our process of switching care from the Children's Hospital of Minneapolis to Gillette Children's.  While the initial thought of doing this made my head spin because Children's is all we have known since I was 20 weeks pregnant.  Also, lets face it change is scary.  Over all we were "ok" with Children's.  We love the neuro Dr. and his nurse.  For the rest of Westins team.  They are very smart and knowledgeable however every time we left SB Clinic we were frustrated and felt like it was a waste of a day.

We had a very different feeling when we left Gillette.  It was clean, modern, up to date, the Dr's were all very helpful, and the nurses were great.  We knew this was going to be a pretty long appointment considering the amount of people we would be seeing along with any questions we had.  From start to finish we were there around 2.5 hours.  One thing that they had that was different but very nice was there was a nurse in our room the entire time.  When each Dr came in and talked to us she would sit in the corner on a laptop and type up what the Dr was saying to us.  This gave us a chance to focus on what was being said without having to try and remember everything or take our own notes.  How Helpful!!!  Also anytime Westin would start to get a little restless the nurse would leave and come back with new toys for him to play with.  One time she even came back with a small dvd player with Elmo on it.

After meeting with all of the Dr.s there was one really big difference between the two hospitals.  At children's every time we would go Westin would have some sort of testing done.  Either on his bladder, head ect there was always something.  However Gillettes philosophy was testing is fine to get a initial understanding of how things are going or to get a baseline, but why continue to repeat the same tests if nothing is changing or there are no issues.  I agree with Gillette.  Why continue to complete the same tests over and over again unless there is a issue or if you plan to do something with test results.

The Dr. I was most interested in meeting with was the Urologist.  This is the area that I have felt we have lacked the most when it comes to Westins care.  Dr. Vandersteen came highly recommended, everyone that had brought there kids to him all said the same thing.  The LOVE him.  I now know why.  He is very easy to talk to, he also took the time to explain everything in a way that we understood it.  Also he said we are the ones in control  When we decided we are ready to start getting Westin potty trained we will let him know.  We are the ones making the decisions, not him.  In the past the Urologist we were seeing had this timeline... For example at age 2 start giving Westin a suppository at night so "he gets use to it"  Um no thanks.

We also saw a Physical Therapist, A Dr. from Physical Medicine and Rehab, an Orthopedic Dr. and a Neurosurgeon.  Again all were very knowledgeable.  They took the time to go over any questions we had.  They also gave their future recommendations and we will be back in 6 months.

It was a great experience and we plan to keep continuing Westins care there!

“Change will not come if we wait for some other person, or if we wait for some other time. We are the ones we've been waiting for. We are the change that we seek.”
― Barack Obama

Progress is impossible without change, and those who cannot change their minds cannot change anything.
George Bernard Shaw
Read more at http://www.brainyquote.com/quotes/topics/topic_change.html#WMEIVeOOLuDzIkl2.99

Progress is impossible without change, and those who cannot change their minds cannot change anything.
George Bernard Shaw
Read more at http://www.brainyquote.com/quotes/topics/topic_change.html#WMEIVeOOLuDzIkl2.99

Progress is impossible without change, and those who cannot change their minds cannot change anything.
George Bernard Shaw
Read more at http://www.brainyquote.com/quotes/topics/topic_change.html#WMEIVeOOLuDzIkl2.99

Progress is impossible without change, and those who cannot change their minds cannot change anything.
George Bernard Shaw
Read more at http://www.brainyquote.com/quotes/topics/topic_change.html#WMEIVeOOLuDzIkl2.99

Back in the saddle again!

Happy Thursday!

Well we are back into the full swing of physical therapy!  Westin is starting to adjust.  He has had a long break since the surgery.  While he was in casts we chose not to go because there wasn't a whole lot that they would be able to work on.  Since the casts have come off he has gone a few times and he is adjusting ok.  One thing is for sure he always has a BIG smile for the ladies at the front desk!  He loves them!!!  He hasn't had pool therapy yet so it will be interesting to see how he does with that again!  We are hoping he loves it since he was really starting to enjoy the pool at home.

We have also made the though decision to transfer Westins care from Minneapolis Childrens hospital to Gillette Childrens Hospital.  While this was a though choice we feel that it will be best for Westin.  Our first set of appointments with them will be October 15th.  We will see them at the Minnetonka Location.  They have just started a Spina Bifida Clinic at that location.  It will be really interesting to see how it is different from what we are use to at the current hospital.  Change is hard, but sometimes its for the best! 

More to come on how that all goes!!

The 2nd Anniversary

 

"My wish, for you, is that this life becomes all that you want it to,
Your dreams stay big, and your worries stay small,
You never need to carry more than you can hold "



Well I cant believe yesterday marked the 2 year anniversary since we received Westins diagnosis.  It feels like it was just yesterday.  Ill always remember, we were sitting in the cold Sioux Falls Ultra Sound room..... and hearing the words.. Spina Bifida

While those are no words any expectant couple wants to hear, they are a part of life... our life.

Its funny the things that stick out in your mind, the things that you remember.  After going though months of infertility treatments to be told we were pregnant was the best thing we could have ever heard.... and at my first Dr visit in Wahpeton the Dr. told Travis and I to close our eyes and to think to ourselves about the following question.  If we were told we were having a child with Down Syndrome or Spina Bifida, would it change our minds if we would keep the pregnancy or not.  We both at the same time said No way, this is our baby he was given to us for a reason.  How I still remember the words Spina Bifida coming out of his mouth, at the time I didn't even know what that meant.  Funny how things change.

Fast forward to today.. and we have a son who is wonderful, happy, smart, cute and soo full of life.  He has a smile that can light up a room and a laugh that is contagious.  While I know god has a plan for all of us, I believe my plan was to be Westins Mom.  While I have days that are tough, I know things can always be worse.

I'm thankful for my different support groups.  I am a part of several online groups that know exactly what its like in my shoes... which is nice. We also have a great support group with family and friends.

Cousin Love

While the initial sting may be gone, the scar will last forever

To switch or not to switch....

Hey there!

I hope everyone is doing well.  I cant believe that summer is coming to an end.. Bummer!  We really didn't get to enjoy the last month of summer like we would have liked to!  However there is a end in sight.  The casts come off for good on Friday and we cant wait!!! I think I should throw a party or something to celebrate.  We are really looking forward to see how the new AFO braces work with his "new" feet.  We are hopeful and optimistic.

As for the title of my post well.... we are trying to decide if we want to switch where we have been taking Westin for his Spina Bifida care in the cities.  While we "like" the Dr's and they are "nice"  those are not reasons enough to keep us there.  We aren't looking for "OK" care for our son, we are looking for the "best" care.  Everytime we leave the Childrens hospital we say the same thing.  We are frustrated, we feel like are concerns are pushed to the side and that we are told the same exact thing the person before us was told.  

I want individualized care for Westin.  He deserves the best chance possible at everything he does and everything that is thrown his way.  I have started to be in contact with a few other moms that have also recently made the switch from our current hospital to the new one we are looking at going to.  They have all said the same thing.. We wish we would have switch sooner.

I have received the name of the lady who runs the Spina Bifida Clinic at the " new hospital" so I will be in contact with her soon to figure out the process of getting set up with a tour so we can see if we think it would be a better fit for us as well as Westin.

More to come.......

“You'll never find a rainbow if you're looking down”
― Charles Chaplin

More Casts.....

Happy Summer Everyone!

I cant even believe tomorrow is the 1st of August.  Seriously where does the time go?! 

So many things to update everyone on that I don't even know where to start... so I guess Ill start right here :)

Since our last post Westin got his new braces that were recommended from Baltimore.  They were terrible.. they didn't hold his foot at all.. so we had to have another pair made.  These were the same style as his past pair which worked will for him, however because of ongoing issued with is feet these new braces aren't working well either.. which goes to tie in with the title of this post... however I will get to those nasty casts in a minute.

Westin also has gotten his new gait trainer which is adorable!  Its lime green and cute as can be.  He thinks he is one cool dude in that thing!  It also has pretty much every attachment under the sun, which is nice however he is so mobile that he doesn't really need most of them.  He is learning how to use it and has even walked into therapy with is a couple of times, but again we haven't gotten as much use out of it as we would like because of the bracing issues.

We also received out E-Stim unit for home.  We are suppose to use this on Westin 2x/ day for 30 min each time.  While I would love to say I am using it this much.. I'm not... its not possible.  I use it as much as I can, but I need to get in a better habit of using it. 

Now on to our crazy, fun, full of life little man!  He is officially 1.5 years old.  How is that possible??? It seems like it was just yesterday that we were walking through the door with out little bundle of joy.  He is such a blessing.  We simple cant imagine what out lives would be like without him.. He sure keeps us busy with therapy, and early intervention, and Dr appts but I wouldn't change it for the world.  He is a busy little boy!  He loves his trucks, tractors, and anything that he can throw.  Man does that kid have an arm on him.. maybe we have a future baseball star on our hands!

He is also starting to talk a lot more and he wants to be Mr. Independent.  He has learned to open containers, screw off lids, so anything that was once safe.. no more.  He knows how to open his bubbles and pour them into his "tubby" he can also pull all the lids off his markers.. so the dogs now have a beautifully decorated dog bed.  I knew when he was quiet for more then 6 seconds he was up to no good.. and I was right!  He is using his spoon and fork a lot more. and when he really wants something like fruit snacks or his gummy vitamins he says "peeeeeese" 

He also loves to be outside and blow bubbles, be pushed in his green car, ride in the wagon, ride on his little power wheels tractor or ride in the bike carrier.  He loves to be outside, he would be outside all day if we could. 

Now on to the casts... yuck  just typing that makes me cringe.  I never thought we would end up with more casts.. I think he has had his fair share of them.. I believe it was right around 20 weeks with them the last time, But after soooo many issues with his feet and them not staying in a neutral position, we knew something had to be done.  So we met with Westins Orthopedic Dr. and we decided he needed surgery again.  So this past week Westin had bilateral heel cord lengthening tenotomy as well as a posterior ankle release.  He did well with the surgery, and the Dr was pleased with how flat he was able to get his feet... but we wont know how successful it was until we are done with the casts in 5 weeks and try him with his braces again. 

Even though we have to put up with more casts, hopefully the end result will make it all worth it.

Thats all for now! Until next time....

Home Sweet Home!!

Were back!!  Talk about a long two weeks away from home!!  It was a productive two weeks too.

We flew in on Saturday and were able to get settled in a little bit before the excitement started on Monday.  Westin did really well on the airplane.  I was so nervous about this, but with the right toys, we were able to keep him calm the whole time.  He even took a little snooze, Yay!  Also.. when renting a car, never choose the economy size when traveling with 3 large suitcases, a stroller, and a baby! As soon as we go to the car rental place I saw this tiny little car and started laughing and told Travis wouldn't that be so funny if that was our car.... and the guy goes.. "it is"! hahaha I thought I was going to die laughing.  Google Chevy Spark.. and you will see that little beauty.  Good thing the guy decided to upgrade us to the next size for free!

We were so glad we decided to get a rental car.... I think we would have go stir crazy without it.  Plus we were able to get in a bunch of sight seeing, which was a major bonus!

The first Monday started out with a bang.  we learned quick that a 2 mile drive in Baltimore isn't the same a 2 mile drive in Wahpeton.  One takes 20 minutes the other takes 1 minute!  The first day started out by going over all of Westins medical history.  Good thing I was prepared because there is A LOT!  After that we were on to our first day of Physical Therapy.  The first day was pretty much just watching him to see what he can and cant do.  They also learned very quickly that what Westin wants Westin gets.  We started in a huge room with people of all ages getting treated for anything and everything.  We knew that this type of environment wouldn't work well for Westin.  To many things to distract him.  So we went down to the Peds floor which was much better.  Not sure why we didn't start there in the first place.  There were LOTs of toys and they also had smaller rooms which we ended up using a lot.

The next few days were spent using Estim, which we also now use at home.  Westins muscles respond well to this type of PT.  It help keep the muscles strong that he isn't voluntarily using.  By the middle of the first week we were able to get Westin in the pool.  Talk about a awesome pool.  The entire floor moves up and down as one so they can adjust it to whatever level that they want to work with him at.  At home he really enjoys the pool so we were excited to try it here.  The first 10 min went great and then they brought out this floating walker type thing.  BIG MISTAKE.. once he saw that, he freaked out and that was the end of pool PT.  We tried two other times while there.. and no such luck, just the sight of the pool made him upset.

They had some other cool equipment out here that we don't have at home, like a small treadmill, and some gait trainers.  The treadmill was really cool.  They would harness him in and it would take three people working with him.  One would hold his hips, and one person working with each leg to make sure the placement was just right.  By the end of the two weeks, Westin was doing about 25 min each day.... Of course we had Bob the Builder on the dvd player, he also had to walk holding his lovey "aka Blanket" and his little white puppy.  While being bribed with mini M&M's but, Hey! whatever works!

 We also were able to try out a Riffton Mini Pacer Gate Trainer.  Its the upgraded version of his current walker.  These gate trainers offer pretty much even option you can think of.  It was nice because he was able to explore on his own without us having to keep an eye on him every second.  We are in the process of getting one ordered, so hopefully within a few weeks we will have it!

While out there we also wanted to see another orthopedic Dr. to get a second opinion on Westins feet.  Im glad we did this because we got a recommendation for a new type of leg brace.  Its made from the same material as his current ones, but its like two braces in one.  Its from Sure Step, its the Indy2.  He also suggested that at night Westin sleep with the Ponseti Brace.  We are NOT excited about this at all.  This has been mentioned in the past and then at the last minute his current Orthopedic Dr changed his mind.  This is pair of sandals that has a bar between the legs.  They like this type of brace to be wore every night until the age of 5!!!!  This is to help with the position of his feet, and also to assure they don't become clubbed again.

Of course we also had to have some fun and go sight seeing.  While there we went to 2 baseball games, ran a 5k for the Ronald McDonald house, went to the National Aquarium, the Maryland Zoo, we also walked around the inner harbor where there were some fun stores, and restaurants. We also drove to Washington D.C.  Neither of us had ever been there so it was really fun.  We walked around the Washington Monument, Lincoln Memorial, we saw the White House, The Capitol Building, WWII Memorial.  We also drove past the Pentagon and Arlington National Cemetery.  We sure had a lot of fun!

The first question everyone asks is if we are glad we went and if we thought it was worth the trip.  The answer is yes, while it was a LONG two weeks away from home.  We learned a lot, we saw a lot and we can see am improvement in Westin and his leg strength.  So we are happy we went and plan to go back with in the year. 

Here are some pictures of our trip!

At the baseball game

At the Maryland Zoo

Washington Monument

The cherry blossoms were in full bloom!

Lincoln Memorial

Ready for the 5k!

Stopped running for a quick picture!

SPRING YET?

Is it spring yet?

I seriously think that winter is going to go on forever.  Wow once again I have forgotten to update the blog for quite some time so please let me get you caught up to speed with the wild life of the Wiberg's!  I have officially been home with Westin for just over a month and we are loving it!  Other then Westin's therapy appointment we come and go as we please... although this time of year there really isn't anywhere in this town to go.....but its still good to get out of the house.  Westin is busy with PT.  We go 2 times a week.  We have started doing some E-Stim therapy so that he is used to it once we get out to Baltimore because part of the spinal cord injury program that he will be doing really focuses on E-stim.  He actually does amazingly well with this type of therapy.  Sometimes when the machine quits he almost cries, it must feel good on his legs?!  He has also started pool therapy.  He is slowly getting more use to this.  Heck I would jump right in as the therapy pool is a cool 92 degrees!

He has also started to become more vocal.  He loves to say "HI" with such enthusiasm to complete strangers.   He also says:

Mom
Dad
Dada
Mama
Daddy
Fish
Glasses
Chasey
Auntie
Yup

Those are a few that come to mind.  He sure has one heck of a wild personality though.  When he wants something, he wants it like yesterday.  I wonder where he gets that from.... :)

He loves to be around other kids.  Today we took part is a pre easter "party" at a elementary school in town.  There was a Easter egg hunt, arts and crafts, pet the real bunny.  He was also able to see some of the kids that he use to go to daycare with.  While there he wanted to go on his feet soo badly but what his head thinks and what his feet think are two totally different things.  It breaks my heart to see him with other kids his age just running all over the place, but he doesn't feel sorry for himself so I can't either.  No matter what I need to be his cheerleader.  /

I cant even believe we head out to Baltimore 2 weeks from today.. where did that time go?  I'm so nervous for the plane ride with Westin.. I'm trying to think of everything I can possibly bring with me to keep him busy, because we all know he WON'T be napping!  While we are out there we are also going to make it fun.  We have too, we have no other choice... not our ideal vacation but you make the best of the situation that you are given.  We have baseball tickets for the day after we get there, the Orioles play the Minnesota Twins! I bought really good seats for Travis Bday gift! he was soo surprised that little old me could pull of a surprise like that!   We also plan to tour Arlington National Cemetery. It's only about 15 minutes from where we are staying.  I would also like to tour QVC so we will see if I can squeeze that is somewhere.  From all the research that we have done it seems like a really fun city.  We are very hopeful that we will leave with a lot of great information, in terms of Westin and his development and also a plan to get that kid a moving one way or another!

Here are some of the latest pictures.  More to come after we get home from out trip! See ya in a month!

Mommy and Westin drawing a bunny

Marley making something for Westin

Mommy got me some silly glasses since I like to pull them off peoples faces:)

Another silly photo of me rockin the shades:)

 

I think Justin Timberlake wrote his "Suit & Tie" song about me. haha

And hes 1!

Once again sorry for the delay in updating the blog.  All we can say is life happens and soon enough a month has passed and we still haven't updated the blog.  Well what is new in our lives is that Travis got a new position with his company which is going to allow me to be a stay at home mommy!!  Westin is growing like a weed and is starting to do more and more silly things.  He now sticks out his tongue when we ask which makes us smile every time. 

His development is coming along, and Travis says that he sees Westin do a bunch of new things every time he gets back home from a trip.  Westin will be going to therapy 3 times a week to help strengthen his ankles.  He will also get some swim therapy which will be interesting.  Westin is crawling all over the place and will stand next to toys.  He will sometimes take a step or two with some help when behind his walk behind toy.  He is also saying new things all of the time.  Its fun to watch him grow. We are starting to get excited for our trip to Baltimore in April for Westins therapy.  We also don't have to go back for more tests in the cities until June.  Its sure nice to have a little break from those.

We tried scheduling a 1 year birthday party for Westin, but the weather hasn't cooperated yet.  So we keep having to reschedule it for another date.  During the weekend of his birthday, Travis and I decided to have a little mini party for Westin anyway.  Here are some photos of our cute silly boy.