Tuesday, June 23, 2015

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.