Potty Training Jaxon

I just decided out of the blue, ok maybe not totally out of the blue, we should try potty training over Thanksgiving week.  Jaxon didn't have school or therapy for 3 whole days so I figured as good a time as any.

I did my research on potty training kids with sensory issues.  Not really much to research as each kid is different.  Sensory kids are weird like that.  They have their own little trigger points and you just have to figure them out and play along.  I knew one of Jaxon's would be sitting on the potty, so we started tackling it months ago.  He does this really well.  1 for the potty training team.  Next was figuring out how best to get rid of the diaper.  I've heard wear just underwear or go completely naked (CRAZY).  I've gotten so much advice from well meaning folks.  But lets be real this kid just does things a little different.  He doesn't eat much so candy and snacks as a reward are out.  He doesn't really care about stickers and charts.  Seriously you are gonna get the "Oh good for you MOM"  look if I tried any of this.  When you inject 4 oz of water at a time through a tube into his stomach.  Yeah you should be getting a mental picture of Niagara falls about now.  It isn't exactly your sippy cup of juice all day long.

So with all that in mind we decided to try going underwear only in hopes he actually cared about being wet.  And I'll tell you right now he DOESN'T.  We are also using pull ups for naps and going places.  On the potty chair (attached link is the one we are using and seems to work well for a 4 yo.)  we are letting him play music on the ipad with headphones.  This is really helping in getting him to sit for a longer period of time.

This works well for a 4yo.  We tried a couple others but they were to small.  Also very stable if you kiddo is scared of falling.  I'm also not getting anything to advertise this.

Day 1:  Started with big boy underwear.  I gave him his morning medication and a little extra water.  About 10min we went to the potty and waited and waited.  Nothing for about 20min so I let him get up, pulled up his pants.  Less than 2 min he was wet.  Dang it so close.  We tried again a little later and nothing.  So he climbed in my lap to watch TV and yep you guessed it we both were wet.  This happened at least 2 more times before I left for work.  So this went on all day.  Just couldn't ever quite catch him or get him to sit long enough.  By the end of the day we figured out we think he is holding it and waiting to feel the security of his underwear.

Jammin out and yes I'm covering him.

Day 2:  Started with big boy underwear.  I gave him his medication and a little less water.  Thinking I will spread this water out a bit and see if it helps.  So we hit the potty 15min after his medication.  We waited about 25 min and still nothing and he was starting to get a little impatient.  So I let him up and we go into the living room less than 2 min and he pees all over the carpet.  I change him thinking he's probably done for awhile let him run around.  Nope he proceeds to lean on me and pee all over my pants and carpet again.  So I put a pull up on him and he took a nap.  After nap I gave him more water and when I left for work he had been sitting on the potty for about 25 min.  I really think he was holding it because he kept grabbing himself and trying to get up.  I think with his sensory issues he likes the feeling of the underwear or diaper.  So his nurse was going to just try to wait him out and see if we could get a successful potty trip.

Lookin big in his underwear.

All in a Day's Work!!

Week 4 Feeding Study

This week was pretty low key.  The overnight feedings are going really well.  No major spills.  As for the daytime eating by mouth.  Well I can't say he is eating more per setting but he is eating more times a day than he was.  The variety is still the same chips, pudding, yogurt, crackers and tiny sips of chocolate milk.  He will get a appetite enhancer during week 10 of the study.  We are hoping this will make him wanna eat more and try some new things.

The study:  When we arrived the nurse took his height, weight, blood pressure, EKG, and blood work.  After this was all done the doctor arrived and prescribed a larger dose of the study medication.  And that was it.  The next three weeks we speak with the dietitian over the phone from home.  Yipeee we get a little break.  It can be a bit much going to Kansas City twice in one day.

KU feeding study

I just wrote this entire post and somehow deleted it.  So here goes again.

Jaxon is in a feeding study to wean him of his feeding tube.  Here is a article giving some of the information.  I will try to do a weekly/bi-weekly post on all the happenings.

Week 1 we just met with the study team and got all his baseline vitals, signed paperwork, drew blood.  We had homework to get 3 days of food log, and 2 video's.  He had several seizures on Saturday so his feeding logs were a little weak.

Week 2.  More vitals and blood work and received his study medications.  This week we had to move to 12 hour continuous feeds with his pump.  Meaning he will get pedisure for 12 straight hours at a slow rate.  Jaxon has never been on continuous feeds so I wasn't real sure how this was gonna work out.  At first I assumed this would be an all day thing.  I just thought about how long these 10 weeks would be with him taking his pump to school and his balance issues while carrying the weight.  However, they gave us the option to run it over night and boy were we relieved.

Night 1 was a disaster his tube came unhooked and pumped milk all over his bed for an unknown amount of time.  If you've ever smelled pedisure formula you understand.

Night 2 was a success.  He got all his food and when he woke up he now tells us "I'm Stuck"  meaning his tube is still hooked up and he can't get up until we unhook it.  This is a great thing just trust me on the details if he gets up and pulls it the tube out while knocking his iv pole with pump and everything over.  Yeah it's happened.  He even ate breakfast.  I can't even remember the last time he actually ate breakfast.  So maybe this 12 hour thing will be a bonus.

The study lasts 6 months and at the end the goal is to be tube free.  I would love for him to be tube free but I will not be disappointed if he's not completely tube free. I only be disappointed if he is not eating more by the end.

Daddy's little helper

Jaxon loves to be on the farm.  He loves riding the 4 wheeler, riding in the machines, and checking cows.

Helping daddy feed the baby calves

Checking the babies to make sure they are all healthy

Trying to keep up with daddy. 

Making sure the hydrant is working like it's supposed to.  It has a small leak and he kept telling Jason "Uh Oh"

Halloween 2013

We decided since Jaxon loved his 1st movie Despicable Me 2.  We would dress him up as a minion.
He actually had a lot of fun this year.  He loved seeing all the costumes and saying "trick or treat"

Trick or treat goodies.  It was a pop type gun with a ball on the end.  Like Christmas in October.