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....