Thursday, April 17, 2014

Feeling Thankful!




Checking out his batting skills!
Woohoo! We survived yet another round of appointments!  After we get done with all of the testing, and meeting with the Drs I always get the biggest sense of relief.  I hate that it is always so stressful!  Also what is it with kids and hotels?? Its like you get in the room and they turn into a crazy person!?  I swear there is something in the air at those places!!




Just waking up from his MRI

Now for the progress and updates from the brain and total spine MRI, as well as the renal u/s and Spina Bifida Clinic.  We started out with the MRI on Monday.  We had to check in at 7:30 which was early however it also didn't help that Westin decided to get up for the day at 2:30 A.M!!! Needless to say we were all dragging by morning.  This test went well.  We were nervous about them getting the IV started because last time was a nightmare.  They used numbing cream and were able to get it started on the first try! YAY!!  Westin didn't even flinch, but he didn't like having to be held down while they did it.  The scan took just over an hour which was faster then we were expecting, but that was just fine with us!  While Westin was still in the process of waking up from the anesthesia the Neurosurgeons nurse Peter came to meet with us and go over the scan.  While it hadn't officially been read yet by radiology he said things looked really good! Yay for more good news.

On Tuesday morning we had to be at the clinic at 8 and the day started with the renal u/s.  As soon as we pulled into the parking lot Westin looked out his window and said "No! Home!!" Talk about breaking my heart!  The ultrasound went good.  Travis was able to keep him distracted, hes soo good about that.  Once that was done we checked in a clinic and then met with Westins "team".  First we met with Orthopedics.  They were so pleased with Westins walking with and without his braces.  So much so that they wrote us a script for SMO's.  You probably remember me always talking about his AFOs.  Same idea except SMOs are shorter.  They only go to just about the ankle.  By having these we will be able to work on his calf muscles.  Here is a picture of what a SMO looks like.  This will still give his ankle the support it needs but give me more flexibility with walking.  We go in on Friday to be casted for these.  Then in a few weeks we will get them back!! I cant wait!
After Ortho we met with PT who also wanted to check Westins progress and to give us a few ideas of new things to try like getting him to try and walk like a duck "walk on his heels" just to get some different muscles a work out.

ButtercupWe then met with Dr. Vandersteen the urologist.  We were most anxious to talk to him about the process of potty training, and of course to go over the ultrasound results.  The ultrasound results came back great!  The kidneys were prefect.  No scaring and no swelling.  He also said the bladder looked good!  As far as potty training goes he wants us to keep trying and encouraging Westin to go on the potty chair.  Within a year he said we will know if he will be able to do it on his own or if we will have to intervene either with a cathing schedule or possibly a surgery, but that's a ways away.

Crusin in the back yard!
We then met with Neuro to get the official results of the MRI and again everything looked awesome!  No hydrocephalus and no syrinx on the spinal cord.  He has tethered cord but so does everyone that has spina bifida that has had surgery.  Its only a issue if it starts to have an affect on the bowel/bladder or cause lower extremity weakness.  He said that Westins is very minimally tethered.  I will take that as good news?!?!

Once we were done with all of the Dr's, Westin was able to have a little fun!  We were contacted by Gillette to see if they could stop over to take a few pictures of Westin.  If they were able to get a good picture then he will be one of the kiddos featured in their about Spina Bifida Handbooks that they give out to anyone who wants to learn more about spina bifida and the programs that they have available to help.  How awesome is that?!?!! Our little super star!!!  He was tired but I think they were able to get a couple good ones!  He was rewarded for his good looks and charm with a super cute book and teddy bear and a target gift card!  Next time we go to target he will be able to get anything he wants!!!


Thats all for now!  I will update more once we get the new braces!  Have a great day everyone!


Our little farmer in training!


Thursday, April 3, 2014

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!!