Monday, September 8, 2008

Craniofacial Team & The South County Life

Having just arrived back in California on Sunday evening, July 27th, from Austin, you'd think we'd take it easy for a bit... You know, settle back in, those kind of things.

Well, if you know my husband, life never quite settles down. Monday morning we were in full force search-for-the-new-place mode. As you might remember, my parents had graciously opened their home to us for a few months while we attempted to pay off some of the looming medical debt we had acquired since Jackson entered this world.

Long story short, by Wednesday the search was over and we were set to move into our new place in Grover Beach on Saturday (thanks to the help of our fine friends Tim, Travis, and Los Dos Ryans, you know who you are)! Yeah, talk about fast! And let me not forget to mention that Jackson had his first Craniofacial Team appointment on Thursday, July 31st at Childrens Hospital LA. Needless to say, all of this made for one crazy week.

Well, we left that same Wednesday evening and drove down to stay with my Aunt Mary and Uncle Denny (Jackson knows them as Aunt Mary The Great and Uncle Denny The Great!), who live fairly close to CHLA. We thoroughly enjoyed our evening with them; we even had the luxury of sharing in their hot tub. When we got up early the following morning, the coffee was already brewed and ready for us and we left their house with cups in hand. Thank you for your hospitality!

We weren't quite sure what to expect at Jackson's first Craniofacial Team appointment. We arrived a bit before 8, checked in, and entered the waiting room, filled with other cleft-affected kids and their families. Little did we know then that we would spend the majority of the day in waiting rooms!

We saw many people that day; social worker, geneticist, audiologist, speech pathologist, ENT, and his plastic surgeon. Eventually, a dentist and orthodontist will join his team.

This was our first time talking with a geneticist. Due to the rarity and possible severity of Jackson's syndrome, it has been recommended to us to pursue further genetics testing. There are two main forms of Simpson Golabi Behmel Syndrome (SGBS), one of which is more severe than the other. We will most likely have Jackson undergo testing to determine which one he has. It also looks like I will need to go through genetics testing since we know that his syndrome is X-linked recessive.

As far as other important takeaways on the day, the ENT mentioned that she was unable to see the tube in his right ear, which is not a good sign. They will most likely need to check tube placement and possibly put in a new tube during Jackson's palate surgery. Dr. Urata, his plastic surgeon, put in a booking slip for his palate surgery and we now have his next surgery date: October 8, 2008. One month out! Crazy.

We moved into our new place in Grover Beach on Saturday, August 2nd. We're loving it! And Jackson finally has his own room! There is plenty more to share from the past month and I will try to get right on it. Until then, I'll leave you a couple pics of our boy... 8 months old today. He's getting so big.

Since Jackson still has an open palate, he is unable to hold his pacifier in his mouth like most babies. He, however, figured out a way to make it work and it looks like this...


eva said...

That's so nice that you guys are in your own space now. That must feel really nice!

Cheatwoods said...

he is a genioius! I love him! Did you hear, we are having our third little boy!

wig said...

Ha! That is so funny! I love how he holds his pacifier. Lets connect soon...

Tom & Teri said...

Nana and Granddad think you are a very resourceful little guy, Jackson! We love you with all of our hearts!