Wednesday, October 23, 2013

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







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3 comments:

Laurel’s mom said...

We live near a great Children’s Hospital so we have never taken our son to a spina bifida clinic. Instead we schedule appointments with the doctors independently as it is much quicker. We also see a orthopedic doc, a physical medicine doc, a adaptive equipment specialist, a couple of therapists and a social worker comes to my apartment to help me with paperwork. In addition we have some nurses and meet with other people as required.

June 27, 2019 at 2:23 PM
Laurel’s mom said...

Forgot to mention his urologist!

June 27, 2019 at 2:24 PM
Thara said...

I completely agree. My SB kid is 2 now. I refuse to take him to clinic more than once a year. It does not make sense really. Unless there is a problem why bother doing the same tests every twelve weeks because you will only have access to the same results. We are currently looking at neuropysch testing. I have asked for the name of a recommended educational psychologist who can answer my questions and do testing too.

June 29, 2019 at 3:01 PM

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