Excellent News!!!!

Cleft Team Rundown:

• Our surgeon was in the ER himself, so we couldn't see him.  We go back on May 29th to see him and schedule Kenzi's palate repair.
• Ears for both girls look great.
• Jacinda had her endoscopy procedure.  It was a little rough, but she hung in there and got it done.  Her palate is PERFECT.  Structurally, there are no issues.  The Cleft Team Speech Pathologist thinks that Jacinda has some bad habits from having her palate open for so long as well as her independent personality.  Some of you know that if Jacinda doesn't want to do something, she won't!!!
• So Jacinda does not need more surgery for her palate at this point.  This is great news!!!!!
• She needs intensive speech therapy in a one-on-one setting.  We will still do the speech therapy at our elementary school.  We also are at the top of the wait list for a private Speech Therapist that has a lot of experience with cleft kiddos.  We have a good friend whose daughter had similar issues, used this speech therapist and has done really well.
• We told Jacinda she could choose a special treat if she said the words and made it through the scope.  Well, I thought she'd choose ice cream or something like that.  Oh no.  She wanted to go to Hello Kitty store at the mall and get a "Hello Kitty Special Treat."  I have NO idea how she remembered that place ..... she has only been there once and that was months ago.  So we went to the Hello Kitty store and let her pick out a few things.

We are so relieved that the procedure is done and that we got the information we needed.  We are thrilled that Jacinda doesn't need another surgery right now!!!!!

Important Cleft Team Appts. Coming Up

Luke is doing great!  He has recovered nicely from his surgery and he is back to normal.  He is getting a little bored in school, but we have only about 5 weeks left, so he's hanging in there.

Tuesday, May 15th is a big day for us, especially Jacinda.  Both girls have appointments with our wonderful Cleft Team (Surgeon, Orthodontist, ENT, and Speech Pathologist).  Here's what will happen for both girls:

Kenzi ~ Her lip looks AMAZING.  I'm sure her surgeon will be thrilled with how it has healed.  He will take a good look at her palate and we will schedule her palate repair surgery.  She acts sometimes like her nose on the cleft side hurts, so I'll be asking the surgeon to see if he can figure that out.  She also may have another hearing test to see if the hearing loss we found last time has resolved with the ear tubes.

Jacinda - She will see the regular cleft team.  But the big deal for her is speech.  There is a wonderful Speech Pathologist that works with the team and she will evaluate Jacinda's speech delay to see if we can figure out what's going on.  Then Jacinda will be seen at the VPI Clinic.  VPI stands for Velopharyngeal Insufficiency, which means that air escapes through the nose during speech.  She will have a scope procedure to see if that is what's happening.  I hear that this procedure is not pleasant ...... they put a scope down her nose to the back of her throat (with no anesthesia) and then have her say certain sounds to see what the back of her palate is doing.  Depending on the results of that procedure, we will discuss our next steps.  Our next step will involve either another surgery, or specific speech therapy with a cleft-specialized   speech therapist.  The surgeries for these issues are fairly complicated and hotly debated in cleft circles.  I'm really hoping we can avoid even going there, honestly.


As you can see, Tuesday will be a big day for us.  We have given Jacinda's speech delay a lot of time to see if it improves and we are ready to get aggressive.  She starts preschool in September and we want her to be as successful as possible.  We had her IEP meeting earlier this week and she has made a lot of progress this year.  She also is clearly very bright, but we aren't seeing her true potential because she can't always express herself clearly.  I think her self-confidence will soar once her speech improves and we'll get a truer picture of her personality.


If you are the praying type, here are some specific things you could pray for:

• That all of us would be healthy for Tuesday's appts.  We had to cancel last time because both girls had strep and Aaron and I were pretty sick as well.
• That Jacinda would cooperate with the scope procedure.  It will not be pleasant, but it's so important.  I may have to promise to buy her a pony!
• That Aaron and I would maintain clear heads so we can discuss the best course of action for both girls.
• That I would remain calm and not overwhelmed throughout the long day.
• That the girls would be generally happy ..... it could be a very long day at the hospital.

I will definitely update once we know more.