Thursday, October 9, 2014

A little update!

Ok! So things around here are still wild and crazy!  So I have a few updates from the pediatric dentist and also Westins speech and physical therapists.

So I brought Westin to the dentist for the first time.... Ok WOW! Talk about a total shit show.  I could tell when he was playing toys in the waiting room that he was feeling completely nervous about being there, which I understand.  It was a new place, new people..... ok so the hygienist came back to get him and he completely lost it.  He proceeded to scream as hard as he could for the rest of the appointment. It was awesome! I'm pretty sure everyone that was sitting in the waiting room thought someone was trying to kill him!  But they managed to get his teeth counted, and a sealant put on.... and of course they would like to see him back in 6 months for more sealants which im sure will mean more screaming!!

So on to the Speech/Physical therapists. I talked to his speech therapist about the horrible appointment from the week before.  She didn't have a lot of input but she did say that I was 4th person to ask her about oral motor therapy so she will be taking some classes to be trained in it in November so that will be great!  In the mean time I did contact a different therapist that works at the other place we went and set up an appointment for a consultation to see what she has to say.... I'm hoping this time around it will go a lot better since it will be with someone else.

I also talked to his physical therapists about a few concerns, so we have increased his PT.  He now goes 2x/week. Mondays and in the therapy room, and Wednesdays are in the pool.  So hopefully this will help keep the strength in his legs. Anytime he has a little growth spurt this happens and he starts to fall more so its just a continuous work in progress.

Other then that we will go back to Minneapolis in 2 weeks for a renal ultrasound and also Spina Bifida clinic.  I always look forward to these appointment so I can get the Dr's input on how they feel he is doing.  Some of my questions for them involve his leg braces, and see how they think he is doing with his SMO's since they recommended them the last time we were there.  My other questions have to do with potty training and how we will go about that!

Also I have to share a link to a little write up I did about Westin that was featured on Gillette Children's website.  I hope you all enjoy and have a great rest of your week!

Tuesday, September 23, 2014

Feeling Overwhelmed...

Call me crazy.... or just a parent of a child with a disability but some days I feel like I cant keep my head above water.  Don't get me wrong Westin is a happy, healthy, bright little boy who just takes each day as they come, but as a parent sometimes its hard to not get completely consumed by all of the Drs,therapists,appointments, and opinions.  Its hard to be able to sort out what information to keep and what to throw right out the window with the other crap I don't care about.

Sometimes I find it hard to not always be looking for something to be wrong with him, its either a leg brace that isn't fitting quite right, or the way hes standing is a little off, or the way he says certain words are hard for others to understand.

For the past few weeks I have noticed that Westin has been drooling more, and for the most part he is still breathing through his mouth.  I wasn't sure if these behaviors where from having his tonsils out and just learning how to breath with his mouth closed, after all hes been breathing through his mouth instead of his nose most of his life.  So because we were questioning these behaviors we ended up making an appointment with a speech pathologist who specializes in oral myology.  We met with her in Fargo and she played with Westin for a few minutes and she also had him blow bubbles and drink through a straw. After watching him for a few minutes she started with her laundry list of things that he does wrong.....which was pretty much everything.  We left feeling completely defeated... we have worked so hard to get him to the point that hes at and for someone to tell us in 5 minutes that pretty everything is wrong is so disheartening.  While I understand this is only one persons opinion it still sucks.

So I will talk to the local speech therapist and physical therapist on Thursday to see what they think and where we go from here, I also made Westin an appointment with a pediatric dentist on Friday to see what they also have to say regarding his bite, and the position of his teeth in his mouth and if the way he holds his tongue between his teeth is doing the damage that the other speech therapist said that it was.

Its times like these I wish there was a perfect answer or a parenting handbook to tell me what to do, but right now its just one day at a time......

Tuesday, August 5, 2014

Goodbye Tonsils!!

We survived Westin getting his tonsils out and he did awesome! We really weren't sure what to expect but I dont think we could have asked for things to go any better.  As soon as we got out of the car in the parking lot of the hospital he started to cry.  He just knew something was going to happen even though we made sure not to tell him about it because they he would of been even more worried and talked about it nonstop.  This poor kid, he has been through so much.  4 surgeries and hes not even 3??  Somethings in life are just so unfair.
The surgery took just over a hour.  I think the part that take the longest is getting him prepped once back in the O.R. After the surgery his ENT Dr. came out and talked to us about how things went.  He said that by observing him and how he was breathing before the surgery that there was no question that he had sleep apnea, which was being caused by the size of his tonsils and adenoids.  He also said that there was a piece of skin that was connected from his uvula down to his vocal cord which wasn't suppose to be there.  He also clipped that off and placed a couple of stitches.

Once in recovery he did take a could of sips of water for me.  He was then transferred back up to his room where he proceeded to cry for 4 hours.  The nurses said it was because of the anesthesia.  Once they gave him his pain meds again we could tell right away when they started to work.  He was more alert, not crying, and willing to drink.  Once we drake a cup full of juice they sent us home!  As soon as we got in the car, Westin was asking for chocolate milk.  Probably not the best choice, but he earned it!  So we filled his cup full and within a minute the milk was gone and he was fast asleep!  Once we got home he was happy, talking and asking for popcorn.  This time he didn't get what he wanted!  Everyday we have seen improvement in his sleeping.  There is no more snoring, or tossing and turning.  He is a much more peaceful sleeper.  The only problem with that is that he is a much earlier riser!

Have a great week everyone! Make it count!


Monday, July 21, 2014

Braces,Feeding, Toncils, Oh My!


The summer is just slipping right by! I cant believe we are sneaking up on the end of yet another month!  Things have been going OK.  Westin is doing really well with his small leg braces.  He is able to wear them full time.  Which is wonderful!  Its also nice for him because they aren't so hot to wear when being outside.

During my last post, I talked about Westin and feeding therapy.  That has since stopped because we weren't really making any progress. Once that happened we just knew we needed to go back for a second opinion about Westins tonsils.  Some of you may remember about 6 months ago Westin was seen by ENT and they had him scheduled for a tonsillectomy but at the last minute we changed our minds.  After getting a second opinion, we know that this is necessary for Westin.  His tonsils are just so HUGE.  They are almost touching.  So hes back on the surgery schedule for July  30th.  I am hoping it will happen this time, he has been battling a few different things, ear infection, ect.  So first things first we need to get him healthy!

Other then that we have just being having a fun summer.  Swimming in the pool, going on bike rides down to the park to feed the ducks, going to the zoo, and going over to see my grandma in the nursing home almost everyday.

More to come once surgery has been done!  Have a great week.

Here Ducky!!

Tuesday, June 10, 2014


Happy Summer!!

Its about time!  I was starting to think that summer was never going to show up!  Pretty soon we will be complaining about how bad the mosquito's are!  Im happy to report that we finally received Westins new braces.  I took 5 weeks!1  I guess there was a communication issue between Bruce our brace maker and the ordering Dr.  Whatever the reason was, we are happy to have them!  So far Westin has been doing really well with them.  We weren't sure how  long he would be able to wear them starting out, because he is able to use quite a bit more muscles.  As soon as we put them on he starting spining in circles and saying "fancy" So I think he likes them just a little bit!  Travis is also excited because I let him pick the design this time and of course he choose camo!  Typical male!!!

Getting fitted for the new braces

The final product!
With Wesins new shoes!
Two weeks ago we also started feeding therapy.  While I am not thrilled about adding something else to our weekly schedule, we knew something had to be done.  While Westin eats, he eats very little and not a very large variety by any stretch of the imagination.  When it comes to eating I had no idea how involved it is.  Its really interesting to see all of the steps there are!  We have had 2 sessions so far, and progress is slow but I kinda expected that.  I knew it wouldn't change overnight.  But we are working on it.  Its frustrating at meal time when you can make him a whole plate with sever choices and he takes one look and says "All Done!" ggrrrrrrrr...... so frustrating!  So we are are also learning that meal time has to always stay positive no matter what crazy things Westin decides to say or do with his food!

Helping Mommy water flowers
Other then that not much else is new in the world of Westin..  He is learning so many new words everyday and he talks so clear!  Its fun to watch him learn and explore.  He loves to be outside.  He would spend all day every day outside if I would let him!  He is also so polite.  My favorite is when its bed time I say OK Westin its time for bed, and he responds with " No, Thank You"!  Enjoy the rest of your week! 

 “We may not be able to prepare the future for our children, but we can at least prepare our children for the future.”
Franklin D. Roosevelt

Doing Great Grandmas hair

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!!