22q11 Clinic Visit Update

Height: 35.5 inches
Weight: 28 lbs 7 oz

Ear, Nose, Throat: Dr. Arganbright was on downtown on call instead of at clinic.  Disappointing.  She's our favorite.  We saw Bridget instead.  She was not overly concerned with the number of colds and ear infections Lydia had January through April this year.  Lydia's right ear tube was out of place and the left was still in place.  They cleaned out wax, removed the right tube and will see us in 6 months.  We'll do a hearing test then, talk about how Lydia has done with one tube out to see if we need a new on or can just go without.  They may need to scope and check for regrowth of her adenoids.  Lydia is a mouth breather and can't breathe easily through her nose, even after the T&A procedure last year.  She's going to continue to take Zyrtec, restart the Singulair and begin using Flonase.  

Endocrine: We saw Terri Luetjen, APRN.  She was not happy with Lydia's growth or lack of growth.  Her height isn't on the chart and is pretty linear right now.  Lydia's BMI is good.  We're hoping for a growth spurt over the summer to get us back where we need to be.  That coupled with hopefully easier breathing will allow Lydia to gain and grow.  Lydia will continue to have her calcium, thyroid and IGF-1 checked annually.  All are in the normal range but we will continue to monitor growth due to the increase chance that Lydia will be small in stature due to the 22q11 deletion.  Lydia's labs came back with a low iron reading so she is anemic and we'll start her on a new multi-vitamin with iron.  I so hope this doesn't constipate her! 

Immunology:  We saw Brenda Snyder, APRN.  She was not overly concerned with Lydia's illnesses over the winter and deemed the amount pretty ordinary for a typical kid.  Lydia's labs show that her T-cells have doubled!  Wuhoo!

Gastroenterology: Dr. Cocjin wasn't there.  Sad.  We're continuing on with the normal med routine to keep her gut relaxed and moving.  GI=all about the poop.

Speech:  The 22q11 speech therapist, Brenda, was happy with Lydia's progress and thought she was doing well.  Over the next year or two we will continue to listen for hyponasality in her speech.  That can be related to her palate, adenoids, etc.  If it continues and doesn't improve, there is a procedure but I want a procedure free 2019.  

Please, could this be the year of no surgeries for Lydia?  

This is how Lydia is entertained from 10am to 4pm at CMH.  Poor girl.  We ended the day with labs and she was a tough poke.  Had to try 3 times to get all they needed.  She peed on me.  That is all.