Cleft clinic trip recap...(and lots of photos!)

A long detour from this blog's adoption focus this evening...grab a glass of wine!  So often I say we're at clinic, or we are about to go to clinic, or we just got back from clinic...and I realized I often fail to communicate why that matters.  The cleft clinic we chose for Vivienne is about 7 hours away.  Vivienne experiences a lot of anxiety while we're traveling up because to her a drive this long can only mean doctors, and it's an exhausting, LONG day of specialists.  Surgeon, audiologist, speech pathologist, ENT, geneticist...we have a local peds dentist and the orthodontist comes later.  It's actually pretty fantastic to see a true team of several specialists in action, for your child, and if I were to try and see them all in individual appointments...I'd live in waiting rooms.  But I do have to psych myself up for this!  We try to add in fun, but she's never quite herself, and she can be extra busy and a little emotional.  There is no doubt that these trips are stressful and jam-packed, and it's all information about your child.  So there's some "processing fatigue."  And we go a day in advance so I can get in-depth mentoring from the team SLP.  That being said, I am happy to say that this trip was really the best one we've had!

This trip, Bear came with us, which meant a week off work, starting with being fingerprinted in New Orleans on Monday for the current adoption process and extending to Thursday when we drove home from Birmingham.  A week off work is a big big deal when you are self employed, but we felt that it was important to do one trip together to allow him to meet the various specialists and experience a routine trip.  Bear never really gets to be off, but he was pretty out of pocket ;-)  It was so nice to go together as a family, even for the purpose!  

We drove to New Orleans Monday morning for our final fingerprinting of the current adoption process.  This allows immigration to finish processing our application to adopt from China, which in turn will lead to our dossier documents being authenticated and then mailed overseas over the next couple months.  We took Vivi to the New Orleans zoo right afterwards to blow off some steam.  We had a wonderful time and it helped after keeping Vivi quiet and confined in a government office all morning!

She LOVED this "baby elephant"

Tuesday we drove to Birmingham, and Wednesday morning we visited our placing agency, Lifeline Children's Services, which is based in Birmingham.  We said hello there, and then on the way back we found this beautiful botanical garden and pulled over to spend some time there (Birmingham friends, Aldrich Botanical Gardens is free of charge!).  Wednesday afternoon we had our speech therapy appointment, and we ended the day with playtime and friends at dinner!

And this would be when Vivi decided she wanted to pet the goslings...and see how the path goes right between them and their mama? Oh yes.  Hissing goose, lesson learned, poor baby!

She was all about the rabbit!  There are a few photos of this guy because we spent a "little" time here ;-)

Thursday morning, we had breakfast with more friends (we really got to see so many wonderful people that we don't usually get to see!), and headed to our clinic day.  After clinic, we were able to finally meet a special someone in person!  Logan has been our caseworker with Lifeline for both adoptions, which means she is the one who matched us with Vivienne!  We got back home late Thursday night.

Our new digs at the hospital- I'm liking the rooms!

Before I share about our clinic trip last week, I want to give some backstory.  Makes for a long log post, but I don't get that many chances to write ;-)  So:

Many people we know think, cleft palate, just close the opening, one surgery, done.  If you've ever told me how nice it must be to be all done, and I laughed a little hysterically...please forgive me.  I am totally wishing you were right!  A cleft is not really a separation in tissue, but an absence of tissue, where two approaching sides are interrupted before fusing together at midline.  Treatment involves a series of surgeries spread over childhood to create a complete and well-functioning lip, hard palate, soft palate, gumline, and dentition.  The most skilled, gifted surgeon cannot replicate God's design.  But what can be done is amazing!  Vivienne had her lip repair in China.  Her hard and soft palate repairs were done last fall, and PE tubes were placed in her ears at that time.  We know her future holds a bone graft for her gumline, orthodonture, and possibly cosmetic surgery later if her scar tissue causes any pulling.  There is also the possibility she may need fat injections or a secondary palate surgery to help with speech.  Speech therapy throughout.  Which is all pretty normal and routine :-)  

In recent visits, the team therapist confirmed my feeling that Vivienne seems to understand what to do with her newly repaired soft palate, but has difficulty physically making enough of a seal when she tries to close off her nasal airway (which is what directs air out through your mouth for speech).  There are several potential reasons for that and it's not uncommon, but it matters because it affects every single speech sound except m, n, and ng.  There are a few options to address it, but first Vivi would first need to be able to tolerate non-sedated endoscopy.  She has to allow them to place a tube with a camera through her nose and down her throat, and then calm down enough to give her best effort at speaking in a way that really shows how her soft palate and pharynx are working.  It is very important that when we look at the results, we feel confident we are witnessing the best job her muscles can do.  The results of this scope are a big part of what guides surgical decisions, so we wouldn't want her too panicked or not understanding the task.  Usually, the team is able to get valid test results at around 4 years old, with variation for individual children.  But in her truly extensive experience, last fall our team therapist felt that we should be emotionally prepared for the need for secondary surgery in preschool to help Vivienne's speech.  

The word from last week:

This trip, both Vivienne's speech pathologist and later her surgeon expressed surprise at how far she has come, and now they just aren't sure whether she will need surgery or not!  The word "incredible" might have been used :-)  So now, because Vivi's made more progress than would typically be expected for her starting point post op, we're all just going to have to wait and work and see what she does!   We don't know what Vivi's future holds.  But!  Every bit of progress we make now increases the benefit any future procedure would give us, and could reduce her chances of needing these procedures at all.  And every time she learns the placement for a speech sound, or increases the amount of air pressure she can build up in her mouth, that is that much less work she will need to do after a surgery, should she have one.  Vivi's been amazing.  She wants it, works so hard, and she doesn't give up!

This is a big prayer request.  Of course we want the preK surgery to be unnecessary.  We want her speech to just flourish and develop even more.  After all, surgery involves cutting and suturing muscles and nerves, and with this surgery comes some risk of sleep apnea.  But above that, we definitely are praying for wisdom in the critical determinations the team will make in the next year or so.  Would you pray with us about all that?

If you have made it all the way to the end of this blog post...wow...thanks!