Thursday, August 25, 2011

Unexpected outcomes and a Call for prayer

This week, C has had two tests scheduled.  The first one - a Swallow Test - was conducted yesterday.

With a Speech Pathologist, Radiologist, and Technician observing, it was determined that C is aspirating when taking in food or liquid that is thinner than the consistency of honey.  One physician strongly suggested that C be put under to receive a feeding tube, and he would have undergone the procedure last night, but Dr. Lotze was not available to write the orders. 

Aspiration has been a very real and major concern since the TM diagnosis in April.  Due to C's weakened chest muscles, he is not able to productively cough out irritants from his lungs as needed, which makes him more susceptible to pneumonia. 

By the grace of God, C has remained healthy and we will continue to pray for his health, healing, and recovery of muscle activity.

Jack & Danielle are waiting on a call from C's lead Physician to see if they will travel back to Texas Children's Hospital today to undergo the feeding tube procedure.

A feeding tube would make daily life for C and for the family even more difficult, and the family is shocked that this may be a necessary procedure.

While observing C, the Speech Pathologist suspected that one of C's vocal cords may be paralyzed.  A referral was given to Danielle to visit an ENT for a scope to see what is going on.

The second test is schedule for Friday - an MRI on his spinal cord.  This MRI will show any progression or regression to his TM.  Please pray that the hours of therapy and rounds of steroids have strengthened C and have paved a way to his rehabilitation. 

- Please pray for C's lungs - that they remain clear and irritant free.
- For his chest muscles - that he be strengthened and that his ability to productively cough will strengthen
- For the MRI on Friday to show significant signs of improvement
- For Jack, Danielle, & the girls to adapt, if necessary, to any changes that may be necessary
- For rest, peace, faith, hope, and perserverance for the entire family

Thank you for your support, love, and prayers!


  1. Please know that if he has to have a feeding tube I can supply you with the bags. Let me know you all are always in my prayers.

  2. I have been keeping up with your blog through Angel. My little boy has some of the same issues. Im sure TCH told you there are several diiferent tasteless thickening agents. My little one is two. Hes had a feeding tube since Sept. You will get through it! Love and prayers.

  3. You can thicken almost anything he eats or drinks to prevent the aspiration of the thin liqids.

  4. Praying for positive reports, peace and strength for Christian and family.