Ready or Not....

Happy Spring Everyone!

According to the calender its spring however it sure doesn't look like it around here.  In fact its snowing right now......yuck

Well our next round of appointments is sure coming up in a hurry!  April 14th and 15th..... I always dread these appointments because I know anything can happen... and I'm not a big fan of surprises! All in all I am expecting things to go well.  My biggest concerns are with his bowel/bladder.  So we are going to bring up potty training.  Potty training a child with neurogenic bowel and bladder is way different then a kid without it.  So I'm hoping to get a plan in place.  We will also be having a sedated MRI of the brain and total spine.  This is to check for any changes to the spinal cord and also to check for tethered spinal cord.  This is really common in these kiddos, however it only becomes an issue if it causes changes to the bowel/ bladder function or if there is weakness in the lower legs.  If that happens then surgery is needed to untether the spinal cord.

Other then that things have pretty much stayed the same.  Westin has Early Intervention come in the home 1x/week.  We like when she comes to"play"  Westin always wants to see what toys are in her bag!  We are also continuing with PT once a week as well.  He does do therapy in the pool every other week.  He loves the water and its so fun to watch his kick away! 

We had his pre-op physical this week and Westin was 34"tall which is in the 28% for his age rage and also he was 30.8lbs which was in the 78% for his age.  He has grown 3" since we last measured him!!!! 

Its been 2 weeks since we got Westins new AFOS!  Things have been going great with them.  Its always hit and miss with a new pair of braces so these seem to be working great!  However I am really struggling to find a pair of tennis shoes that fit over them.. I have ordered countless pairs from the internet but so far no luck.

I will update once we get home from his next set of appointments and hopefully it will come with all good news!!

Dear Winter.......please go away

Is it just me or is Winter going on FOREVER................. granted I know I live in North Dakota where is it pretty much winter year round but seriously I have had enough!!

 Not much new around here.. Westin is still a little tornado.  He can tear apart a room in 10 seconds flat.  Its pretty amazing how big of a mess a 2 year old can make! 

A couple weeks ago Westin was casted for new AFOs so those should be here in a week or so!  We asked him what color braces he wanted and he said yellow.  So we found a pattern online that were yellow with bugs on them!  They said they would try and order that pattern in so now we will wait and see!  Getting new braces is such a love/hate relationship.  I like getting new ones because then I can get Westin a new pair of shoes but finding shoes is always such a struggle!  There are sooo many cute shoes out there however not very many come in extra wide or extra-extra wide....bummer.

Of course we had to make a stop at Caribou!

 We just received our decline letter from Westins secondary insurance for our appointments in  Minneapolis is April.  This happens every time and every time I have to jump through hoops to get them to agree for us to go.  I cant stand the fact that us getting approval is in the hands of someone who have never even met us.  Oh the things I would say to that man if I ever get the chance to meet him!

He always has to have the biggest bowl!

Thats all for now!  I hope everyone is staying warm!  Think spring!!!!!

Hes 2!!!!!!

How is that even possible?!  Our lives sure have changed over the past two years.  There have been a few up and downs, but definitely way more ups!  We are so proud of the little boy that Westin is growing up to be.  

Here is a really quick recap of some of the major highlights of Westins past year.

• -Started to feed himself
• -Talks like crazy
• -Loves to dance
• -Went to Baltimore for a 2 week PT session at one of the top spinal cord injury clinics in the country.
• -Learned to walk with and without his AFOS
• -Switched children's hospitals

I know there are a ton more I just cant think of any today!  Must be because its so cold out! We are sooo ready for spring!

Reguardless we are soo blessed.  There are days when I am sad for him but then I just need to remember hes not sad so why should I be.  We will get through no matter what is thrown out way one way or another!

Happy Holidays!

We hope that 2014 is your best year yet!  Happy New Year everyone!

The holidays sure came and went faster then I can even believe.  I don't know where the time goes.  However I did manage to make several batches of my favorite holiday goodies so that made up for the rest of the craziness!!!

We are continuing with PT once/ week, we still alternate every other week with pool therapy and I think Westin really enjoys it.  All of his hard work has sure paid off.  He continues to make remarkable progress.  We are still working on walking up/down stairs instead of crawling up them.  He still has a ways to go with this but is sure making progress.  We are also trying to get him to do more walking without his AFO's on.  He sure knows that they give him stability because most of the time when we take them off he will ask for us to put them back on.  

Speaking of AFOs it wont be long before we need to get another new pair made.  I hate that whole process because it takes awhile to get them just right.  Since we has to wear them all day they have to fit PERFECTLY... The pair he has now has been the best pair yet and I hope we can get the next ones to fit just like these ones!

Im also in the process of getting his next round of tests scheduled.  Working with two different hospitals has its challenges however I will make it work one way or another!  Right now we go back to the cities for tests April 14th and 15th.  The 14th we will have a sedated brain/total spine MRI at Minneapolis Children's and then on the 15th we will go to Gillette for a Renal Ultrasound and then we will have SB Clinic and then in the afternoon we will go back to Children's to get the MRI results! Wheew did ya catch all of that!

This past Friday Westin was suppose to have his tonsils removed, however we cancelled at the last minute.  We just didn't have a good feeling about this whole idea so we decided to wait and see.  Maybe once hes a little older we will re access the situation.

 We hope that 2014 is your best year yet!       

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