Tuesday, August 23, 2011

Day 1: Riley appts

The day started off at 10:30am with an appointment with Doctor B.  He is a developmental pediatrician and I LOVE him.  The first time he saw us, he spent over 45 minutes with us.  This time, it was over an hour.  He listens to all our concerns and is so thorough.  In a day where sometimes you feel like just a number at a doctors office, this man acts as if you are his only patient all day.  Some of his worries are Tyler's weight gain.  Although he is gaining weight, he is not going up on the WH growth chart.  He has us upping his caloric intake to hopefully pack on the pounds. Tyler will be five months on Saturday and is 10 1/2 pounds.  He recommended doing another swallow study in a month to check and make sure that Tyler is still not aspirating while he eats.  He wants us to get a sleep study done because Tyler is gasping in his sleep and he wants to make sure he is getting enough oxygen. 
Next, were the tests.  Ty had a renal ultrasound done to check his kidneys which was uneventful except that he had just fallen asleep and the tech moving him around woke him up.  Next, we had urodynamics (bum, bum, bummmmmm in the scary voice).  This test requires Tyler to have a catheter inserted and they fill the bladder with contrast.  They are able to check how much his kidneys hold before voiding (peeing) and check his kidney reflux while taking xrays.  They also stick a thing up his bum to measure which muscles he uses while peeing.  I was dreading this test all day.  Mind you, it's 2:00 and Tyler still has not had a nap. So the scene goes like this:
Tyler is laying on a xray table.  They ask me to hold to his legs.  Brian is up by his head talking to him.  There are 3 nurses in the room.  Another women comes in and her job is to help relax the children.  She has an ipad and asks if Tyler likes music or movies.  He loves music and she goes up by his head and starts playing some tunes.  Tyler starts cooing and flirting with this pretty little lady.  The nurse is getting the test ready and I am holding his legs when I start to feel warm all over my shoulder and shirt.  The nurse screams ,"Ahhhh!" and covers my peeing son with her hand.  I am in shock but we all totally cracked up and it lightened the mood.  Tyler didnt cry but his eyes got as big as saucers when they started the testing.  He is such a trooper.  We saw the urologist after the testing and found out his kidney reflux went from Grade I to Grade III in 3 months....not good.  Kidney reflux occurs when the bladder empties and instead of urine leaving the body through the ureters, some of it refluxes back into the kidney.  This can cause kidney damage and eventually kidney failure.  Additionally testing has been scheduled for Wednesday to check kidney function.  Little buddy has to have another catheter put in for the testing and I pray it goes as smooth as this last one , minus me getting peed on.  She also wants to speak with neurosurgeon about his spinal cord.  I got an explanation about this also: a normal spinal cord ends at between L1 and L2.  Tyler's ends at L2.  A spinal cord below L2 is considered a "tethered cord".  This could cause problems with kidneys and leg function from what I understand.  Sooooo, Wednesday we will get the kidney function test done and then go back to the urologist office to go over the test and see what the neurosurgeon has said.  I will update after testing later in the week.  I feel as if this update is one huge paragraph with no organization but it was the easiest way for me to regurgitate all the information I could remember.  Please continue to keep Tyler in your prayers but also all the children at Riley.  It breaks my heart when I see some of the things these kids are going through.  My sweet baby has given me such a new perspective on life.  I am reminded daily of Gods blessings and thank him for allowing me to be a mom to such an awesome little dude.  I also want to give a shout-out to my fantabulous husband.  Many aspects of our marriage has changed and there is an element of stress that def. wasnt there before.  He is such a rock for our family and I am so grateful for such a supportive and loving husband.  I <3 you B!!!!!
Until next time~
Rock on.


  1. I'm always glad to read your updates as they also put things into perspective for me. My name is Selena Bragg, and Mandy Taylor from Oak Hill shared sweet Tyler's blog with me. Our son, Lawson, attended Oak Hill for 2 years and our youngest son, Emmitt, was there for a few weeks before we moved to Columbia, Missouri which is where we currently live. We absolutely LOVE Mandy and I am thankful she passed your blog along to me. We miss her tremendously. I admire your courage as you care for your little fellow. He truly is preious. I will pray that the caloric increase will prove beneficial and he will start to grow like a little weed, and also that his kidney function will improve. Keep loving him up and I look forward to watching him grow and develop!

    We also have a family blog if you'd like to take a peek... I'm not sure if you were there when Lawson was there or not, but if so you may not recognize him as he is now 3... Emmitt is 15 months and super busy!!! :)


    Hang in there and hang tight to Him...

    Selena Bragg