Spring Time

Happy almost spring!!

I am patiently waiting for it to warm up where we can go outside without coats and mittens! Its been awhile and I wanted to update on a few things going on in the world of Westin!  Its so hard to believe that he turned 5 in January and will finish preschool in May.  We are currently in the process of picking where he will attend kindergarten.  My baby is growing up way to fast! Time just needs to slow down a little....

In two weeks Westin will have surgery # 6.  This one however has nothing to do with his Spina Bifida but his teeth.  He clearly inherited that quality from me .. yikes!!  He needs to have 4 cavities fixed and 2 "baby root canals".  I am not looking forward to this, however they need to get fixed.

We go back to the cities for SB clinic in May.  We will have a busy week!  We have SB Clinic on Tuesday, he will also have a renal ultrasound and meet with his team of Dr's.  Wednesday we have a seating evaluation appointment.  To discuss getting Westin a wheelchair for long distance, so he doesn't waste his energy just walking form point A to point B.  This is a concern for me is the new elementary school because it is so large.  This would also be helpful when at the zoo or the mall.  On Thursday we have an all day appointment with pediatric neuropsychology.  So will have a really busy week, but we are hoping to turn it into a fun camping trip.  There is a KOA campground close to where we normally stay.  It will be nice to not have to eat out for every meal especially with the picky little eater that we have!  Lots of updates to come following all of our appointments!

Summer fun comes to an end

Well time has once again gotten the best of me!  On the other hand no news is good news.. right?!?! We have had a great summer packed with camping, going to the zoo, playing outside, swimming, bike rides, ice cream and smores.  Our summer also brought a new addition to our family, a new puppy named Charlie.  He is so full of spunk and energy, I forgot how wild puppies can be.

We had Westins annual check up in April.  This went pretty good.  He has such anxiety about all of the tests, Drs and machines, but over all he did pretty well.  He did have a hip x-ray since we haven't had one since 2013 and that looked good!  We also met with the usual, PT, Neurosurgery, Orthopedics, Urology, Physical Med and rehab.  All had pretty good reports.  Westin continues to be our little miracle, Uro had no concerns, even though Westin is still wet had night, he said its not uncommon at his age to still be in a pull up at night.  Everything else is going good, he is dry during the day and goes pee when he needs to.  We continue with the daily mirilax and that seems to work well at keeping things moving.

Ortho has some concerns with Westins endurance.  As he gets older he of course will get taller and heavier and with that comes more weight that your legs have to hold up.  With Spinda Bifida of course the lower extremities have the most weakness.  Westin has spotty feeling in his calfs and left foot and pretty much no feeling in his right foot so most likely he will need a wheelchair for long distance walking.  This is something that people close to us seem to have a hard time unerstanding and grasping.  He can walk and run yes, however when hes older and heavier I dont want him to use all of his energy just walking from one place to the next.  Studies have been done and people with Spina Bifida that walk use 3 times as much energy as those that dont.  Thats a lot! That is one major bonus to the school that Westin is in right now.  Its very small and everything is very close.  He doesnt have long hallways to walk down just to get to his room. When we looked at another preschool in town Westin would talk to the room and by the time we got there he would say "My legs are out of gas"  That just broke my heart.  So while everyone one may not agree with this, chances are it will happen at one point or another.

He has been cleared for another year!  We will go back in May 2017 where he will see his "team" oDrs again.  He will also have neuro-phyic testing done, I guess this is pretty commoon with SB kids.  We will also have a wheel chair eval to see what options are out there if and when the times comes to ordering one. 

Overall Westin is doing awesome!  He has started preschool and really loves it once hes there.  He does wake up and tell me that hes not going.. just because he thinks hes missing out on something great at home.  He has also gotten taller, I feel like he grew overnight. Its hard to believe how fast he is growing up considering its already been 5 years since we found out about his diagnosis.  Its amazing how things have changed in that time, I wish I could go back in time and tell my self them what I know now.  He is such a gift!  I would change him for the world!

The other day I was thinking about the blog and realized that I haven't posted for a few months so I knew it was time for a little update.  On the flip side no updates is usually a good thing because that means Westin doesn't have anything to major going on.  We made it through the holidays which was both wonderful and very sad.  My Grandma passed away unexpectedly at the beginning of December, so we have been dealing with that the best that we can.  Westin and her were very very close, she lived here in Wahpeton and we would go see her almost every day. Its been a difficult adjustment for us, but we take it one day at a time.

As far as Westin goes, we have taken a month break from speech therapy.  I hate the hour drive when its soo cold so I decided just to take a little break which has been good for both of us.  He will start going again on Feb 17th.  He continues doing PT once a week which he enjoys, I don't feel like hes doing anything new, only maintaining the leg strength that he has which is very important as he gets older and heavier.  He has been falling more then normal so that is a concern for us.  Also when walking he tires very easily, so I am guessing we will be going back to the taller braces for more support when we get our next pair.  We will be bringing both of these things up in April when we go back to Gillette for Spina Bifida clinic.

I cant even believe I am writing this but Westin turned 4 on January 13th.  How is that even possible???? It so overwhelming to think how far he has come in that amount of time.  Its so fun watching him grow and learn so many new things.  Most of the time he is to smart for his own good.  He also loves to test the limits... I am afraid he gets that from me :)  We are also starting the hunt for preschool.  We are looking for a 2-3 days a week for 3 hours a day.  I think that he will love it.  It will also be a nice break for this Momma!

 We are ready for spring.. OK, I'm ready for spring...Westin loves to play out in the snow.  He has his own snow hill in the backyard that he farms on with his tractors from the sandbox.  Its so fun watching his imagination run wild.

Our little superstar

Happy Thanksgiving Week!

I cant believe Thanksgiving is almost here.  Where does the time go??  We had a pretty uneventful fall.  We did a little camping, enjoyed being outside playing in the leaves and no mosquitoes!  I always enjoy fall, the weather is beautiful.  Another reason I enjoy the fall is because October is Spina Bifida awareness month.  This is very special to me.  If I can educate one person on this disability I consider it a success.  This October however we were presented with a very special opportunity.  We were able to share Westins story in our states largest newspaper.  If was such a fun time and of course Westin was full of smiles for the camera.  But we received such a wonderful response from our friends and family and even complete strangers.  If you would like you can read the article at the link below.


http://www.inforum.com/variety/3864503-hes-typical-3-year-old-family-learns-adapt-sons-spina-bifida

A couple of weeks ago we picked up Westins newest pair of SMOS/AFOS.  They needed a couple of small adjustments but overall will do the job just fine!  When we come in from outside he is quick to take his shoes and braces off.  He says that if I get to take mine off then he does to! We will need to work on this! 

As I look forward to the week ahead which will be spent with lots of family I really reflect on all of the things that I am truly so grateful for.  We are so blessed to have Westin in our lives.  He is the biggest blessing we could of ever been given. 

 “A mother’s love for her child is like nothing else in the world. It knows no aw, no pity, it dares all things and crushes down remorselessly all that stands in its path.” – Agatha Christie

Loads of fun!

Wow summer is flying by!!  School has started and pretty soon the leaves will start to fall...... yuck.  Our summer has been very BUSY, but soo much fun!  We bought a camper so we have been spending our weekends traveling the country side.  We have also traveled to see family and friends, had pool parties in our back yard, spent several days at the zoo and just played outside in the sand box.  This summer has really been fun with Westin,  He has such an imagination so he loves to make up games and play with the neighbor girls.  He just adores them!

 Over all things this summer for Westin have been pretty low key which is very welcomed for this Momma!  We decided to take a therapy break in July and that was very nice.  We are starting to get back into the swing of things though and it will be nice to have a schedule again.  We are going back to doing PT every Monday and every other week will be pool therapy which Westin loves! We also have Speech every Wednesday, and we are starting back into the feeding therapy as well.

A few weeks ago we made a little road trip back to Minneapolis for the day.  Westin needed to have some ultrasounds redone of his bladder.  When we were at Gillette in April there were some questions about him being able to empty his bladder completely.  So first they did a bladder/ kidney ultrasound. Then had him go to the bathroom and then they did another ultrasound to see if there was any residual urine left in his bladder.  I was really nervous about this, but we were able to meet with Dr. Vandersteen who said everything looked really great! Yay what a relief!!! So once we left the clinic we promised Westin he could pick out a toy at the toy store for being so strong and brave.  He managed to pick a big box of trucks and cranes.  He could hardly carry it, but boy was he sure proud!

Westin wont have to go back to Gillette until next April, unless there is a issue that comes up sooner! That is some very exciting news.  Other then that not much else is new, I'm excited for the cooler weather, the changing of the leaves, and cool nights.

Yay for Summer!

Im so happy that Summer in finally here! It is by far my favorite time of year, I love the flowers, the beaches and of course s'mores!! Its hard to believe that its almost the end of June, but time flies when your having fun!

We have been pretty busy since I last updated so let me get everyone caught up.  Westin had surgery on his upper lip and tongue in the middle of April, this was a really quick procedure which was good, but he did have to be put under for it.  Things with this went well, and didn't slow him down one bit.  2 hours after the procedure he was asking for potato chips! Um NO WAY!!! It has helped some with his speech but I was hoping for more... his speech therapist seems happy with his progress so I guess I should be to.

We also were in Minneapolis for Spina Bifida clinic and a bunch of tests.  We were not looking forward to these tests because they are painful for Westin but its something that has to continue to be monitored for the rest of his life. There was a lot of good news and also some not so good news.  The good news was that his bladder is appropriate size for his age and that also his bladder can hold the appropriate amount of urine that he should be able to hold.  His bladder walls have not gotten any thicker, and when his bladder was filled with saline his pressures didn't rise and he didn't leak.  Both which were very very good news. We will need to follow up with Urology with in the next 2 months for some more testing on his bladder because the one test showed that he wasn't emptying all of the way, and there is some concern that this can cause UTI's.  Also the one test showed that he was really constipated.  I had a feeling about this, he was getting a natural laxative daily but it just wasn't enough.  Constipation is a really common problem in kids and adults with SB, things just move along a little slower and it causes issues.  So we were instructed to do a clean out and then switch him to Mira-lax daily to keep things on track and moving as they should be :)  We are still getting the hang of it and I don't know if this is a long term solution or if we will need to figure something else out down the road.... time will tell.

The neurosurgeon was happy with how he is doing as far as mobility goes.  We just need to monitor for symptoms of tethered spinal cord.  Which happens in about 25% of kids and its more common during growth spurts.  Physical therapy was also happy with the exception of his right leg.  His right leg has always been weaker, same with his right foot.  He has very little feeling in his right foot so he may need a little more support on the right side as he gets bigger.

We have continued with speech therapy 1x/ week and also PT 1x every 2 weeks.. However we are taking a therapy brake in July which I'm really excited about.  This will be good for Westin... I think hes wore out with all of it and I cant blame him.. He has been doing therapy since he was 5 months old.. I think he deserves it! 

Westin has also started T-ball which makes me so happy.  We were never sure if this would even be an option for him, so its really fun to see him out there running the bases and hitting the ball.  After about 30 minutes he complains about his legs being tired.  He has started to do this more and more.  So we will continue to monitor this as well and see if the next time he needs a new set of braces if we will need to go back to AFO's at least on the right side.

  

Hello Spring!

Wow, time has sure slipped away from me!  I hope this finds you all doing well.  We have a very busy April planned.  In April we are going back to physical therapy 2x/ week.  Just to help with some balance issues as well as changes in textures under Westins feet.  This really can catch Westin off guard which causes him to fall.  I don't want this happening when we are outside so its important to get him as stable as possible!  We were doing speech therapy 1x/week for the past couple of months but as of last week that is currently on hold.  His speech therapist felt that his tongue tie is just tight enough to cause him to not be able to lift his tongue to the roof of his mouth. Which doesn't seem like a really big issue, but as he gets older it causes issues with teeth and jaw placement. So he is scheduled for surgery on April 16th.  I just hate the thought of this, because this could of been taken care of when he had his tonsils out.


We also go back to Minneapolis April 20 and 21st for a round of tests as well as SB clinic.  This time he will have some testing done on his bladder and kidneys that we haven't had done in over a year and half.  Last time we had a couple of these tests done we weren't able to complete them because they were simply to painful for Westin.  I pray that things go better this time and we will be able to distract him with the I pad.  These tests measure the size and thickness of the bladder as well as how much its able to hold and also what grade of reflux he has.  It also measures the pressure in the bladder.  All of these things are very important, because you need to have a healthy bladder and kidneys.  On the 21st we will meet with Westins team of Drs's and go over the test results as well as what our plan is for going forward.  We will get a new RX for braces for Westin.  It will be interesting to see what they suggest.  If they think SMO's will still be OK or if they will want to move him back to an AFO.  His local PT thinks that hes doing well with the SMOs and that we should be just fine continuing with those.

We also have the BEST news for Westins Urologist.  Back at the end of February Westin stayed with my mom for 5 days and she was able to potty train him!  This is almost unheard of with Spina Bifida kiddos.  This is such a HUGE accomplishment, words cant even describe how proud and happy we are for him!!!!  

Now if it would stay warm, so we can get outside, play in the mud, and find bugs!