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.

May 2016

May was a full month!  The kids and I went to Indianapolis with Grandma Kusch to visit with the Milligans and visit the Children's Museum.  The kids finished their year of school.  We had a lot of fun playing at parks and we enjoyed seeing what popped up in the woods behind our house.

going for a walk, all dressed up

Every time I saw a new wildflower I took a picture of it.

Fort Wayne Children's Zoo

I painted the planters that Denny, Dave's Dad, made for me so that they match the shutters and then my Mom helped me pick out flowers for them.

Lilly is always a big helper!

Liam with his cousin Gwen Hart

Grandma Kusch bought the girls dresses for the Princess Tea in September at Disney.  They had to try them on to see if they fit.  They LOVED them!

We get a lot of eye rolls these days.  This was because I said she couldn't comb her hair with her fork like Ariel.

shopping with Grandma

Detroit Zoo

Mothers Day

A magician entertained us at the Club while we waited for our food

Liam and Lilly with their cousins Adelyn and Gabe Koehlinger

An Astronaut sent Liam an autographed picture.  He was thrilled!

Liam saw two of his friends while he waited for Lilly at ballet.

Liam's Kindergarten Butterfly Program

Lilly's ballet dress rehearsal

Liam's Community Walk field trip

Kindergarten Games

Liam working in homework

Liam's last day of Kindergarten

Liam with Mrs. Germann (his teacher's aid)

Liam with his teacher Mrs. Huston

exhausted Lilly!

Indianapolis Children's Museum

We spent the day with Grandma's friend Ellen Milligan and her grandson Grant, who is the same age as Liam.  They get along really well.

planting the garden at the office

Lilly's ballet performance

Liam got out of school a couple days before Lilly did, so one afternoon while she was at school, we went to the zoo, just the two of us.

Lilly's last day of Preschool

Memorial Day Weekend

Highlights from Liam's last few days of Kindergarten

Field Day