God has been gracious to us and has been with us through our journey of love and life. He has carried us through some of the most difficult times and has given us joy in the midst of sorrow. He has also been loving and given us abundant blessings. Most importantly, He has provided us with faith. May we share that faith with others.

"For I know the plans I have for you, declares the Lord, plans to give you hope and a future." Jeremiah 29:11
"God's gifts put man's best dreams to shame".
Elizabeth Barrett Browning

Tuesday, June 14, 2016

Lilly's Surgery, June 2016

Every December Lilly attends a Cleft Clinic.  At the clinic, a team of doctor's evaluate Lilly's progress and make a plan for her upcoming needs.  At the last clinic, I expressed that I was concerned about Lilly's speech delays.  She has been doing speech therapy for a long time and has been immersed in speech through Preschool, so she should be saying more than she is.  I also expressed that it is not due to a cognitive delay, since she is communicating through sign language, and is demonstrating what she knows.  The team of doctors agreed that Lilly would benefit from a scope, which is a camera they put down the back of her throat to see if she is physically able to make sounds.  In February we had the scope done and it showed that Lilly has great muscle strength in the sides of her throat, but she still had a hole in the roof of her mouth.  Most of the air was escaping through her nose.  This causes hypo-nasal speech and makes the formation of some sounds almost impossible.  We decided to move forward with a pharyngeal flap surgery.  The flap surgery can cause sleep apnea, so the first step was to remove Lilly's tonsils and adenoids.  This would create enough room in her throat to breath, even with the swelling from the flap surgery.  In March Lilly had her tonsils and adenoids taken out.  She did well with that surgery.  After she healed from that surgery, she was ready for the flap repair.  On June 2nd Lilly had the pharyngeal flap surgery.  They took a rectangular piece of skin from the back of her throat, attached it to the roof of her mouth, and then stitched up the back of her throat.  The surgery took a little over 2 hours.  She did very well.  Lilly has become a pro at surgeries and being in the hospital.  After surgery Lilly was admitted into the Pediatric ICU.  The nurses kept up on her pain management.  They also monitored her breathing, since sleep apnea was a concern.  Lilly was anxious to get home the following day, but was not discharged until she could prove that she could swallow.  She was stubborn at first, but finally ate some ice cream and yogurt.  She recovered well at home and no longer needed pain medication after a week and a half.  Dave and I could tell a difference in her voice right away.  She seemed much louder.  We won't fully notice the difference in her speech until she heals completely which will take 2-3 months.  We are excited to see how her speech will improve.




Lilly really enjoyed watching princess movies while she recovered.  She had never seen Brave before.

Liam came to visit.  It was nice to get out of the hospital room for a couple minutes.  Liam was not a fan of the hospital ice cream.

Liam and Lilly were so excited to be re-united.  Liam pushed the wheel chair out to the van.

Despite all that Lilly went through, she did well with recovery.

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