You are currently browsing the monthly archive for February 2016.

For the sake of the archival of Jack’s journey, I thought I’d wipe the cyber dust off the ole’ blog to update Jack’s story. Hopefully this helps those of you on the same journey as us feel more prepared or informed (I put some tips in!), helps our friends understand more about Jack, and of course records his story should he every want to read it.

Jack (Jackie, Jack Jack, Jackers), now 7 years old, still looks like his cute, dimple faced self. I really doubt we’ll ever need to do a nose or lip revision–which is pretty incredible! However, this whole cleft thing is not just about aesthetics, but is just as much (or more) involved in the hearing, speech, and dental arena. Through his  school, Jack has continued having speech therapy once a week.  He’s had wonderful SLP’s that have faithfully met with him and pushed him to be as articulate has he can be. Those speech sessions, however long and numerous are worth it! {Tip for my fellow cleft mamas: Observe those speech sessions–practicing at home is where their success is made–integrate it into your daily conversations. I’ve learned to sneak in speech practice with his reading time–he doesn’t even know he’s getting the extra speech practice.}  His articulation skills have progressed wonderfully and Jack has also grown into a more confident little(ish) guy. T-tubes have allowed his hearing levels to remain satisfactory as well! {Also, Jack’s a super quick soccer player, lover of anything competitive, and a homebody that  enjoys snuggling in with a good book, legos, ipad games, or laughing hysterically with his siblings <3.}

One thing that has not improved with Jack’s speech is the amount of air flow that comes out of his nose when he speaks (nasal air emission). Because speech therapy hasn’t permanently helped this, it was deducted that it was a physical structure issue. Jack recently had a nasal scope performed at Doernbecher to determine the issue.  During the scope he participated in a speech therapy session {can we say, Rock star?}. My gag reflex was going off and I didn’t even have anything in my nose/throat! The camera showed air bubbles escaping in his throat when he speaks; we also got a peek at his epiglottis and voice box–SO cool. {Additional tip: Preparing kids for appointments is key–give a brief overview of what the appointment will be like, rehearse how to react (take deep breaths, stay calm, hold my hand etc), and state what reward lies at the end of said procedure all helps a TON! A fun sleep mask  takes the edge off an object coming towards ones face–we use this in dental procedures too, with headphones/fun music. Jacks song of choice here: “This is my Fight Song” ha!}

The results: Jack’s next surgery–the extension of his palate; the hope is that less air will escape when he speaks. Essentially, the soft palate will be “Z” cut and pushed back. Basically, Jack grew, so the palate that was made for him when he was a baby isn’t long enough. We are excited that this will help him, but also sad that he has to have this extra surgery; he is coming up on his gum line bone graft surgery, so it’s not ideal to us for him to have such major things close together. However, because we found out our amazing surgeon, Dr. Kuang, is leaving, we are super thankful she gets to do this surgery for Jack before her departure.

I am reminded again that there is joy and opportunity in suffering.We absolutely covet your prayers for Jack on March 7th! We know this is the sovereign path that we were placed on and are praying  to rest fully in peace, knowing that God has Jack, and for Gospel opportunity and growth in our family’s life. Will you join us?

Jack most dreads the point of separation from us on surgery day. Please pray for peace in his little heart. Pray for safety, zero infection and that the size on the palate will be perfect, as there is the risk of redoing the surgery if it is not. Pray that we can find yummy things for him to drink during his 6 week recovery. Pray!

Thank you to all that have followed Jack’s story, have prayed for him and love him like we do!! We are excited that he has the opportunity for clear articulation with less effort. Go, Jack!

Advertisements