Chloe Updates

A couple weeks ago we traveled to Tampa for Chloe's craniofacial team appt. My mom went with us...thank God. It is so hard to be solo with the Crazy Girl when dr. after dr. come in to assess and discuss goals with you. This team we didnt' get the all clear see you in a year farewell we always hope for. Though nothing huge we left having a lot to follow up on. Chloe's hearing has only been within normal limits one time that we tested her since coming home almost two years ago. This time at team she didn't pass the audiological again which meant we had to follow up with an ENT. I didn't want to make the drive to St. Pete to her current ENT so we switched over to someone here at Nemours. After some appts. we scheduled PE tube surgery for her THIS Friday. This surgery will be nothing compared to the other five she has been through, but it's still a surgery and I always get nervous. Say some prayers for us please:) We also were informed that Chloe's developed a fistula which is a whole in her palate. This is common with cleft palate repairs, but still NEVER what a cleft mama wants to hear. Especially when the mama happens to be an SLP! Chloe has had some speech regression (hypernasality/nasal emission) which we also need to follow up on here in Orlando. Finally, we were told that a tooth growing in her palate is concerning and they really need to X-ray again to follow up. So we are headed back to Tampa soon to get the X-ray and meet with the pediatric team dentist again.

I have been feeling a tad bit (ok, a lot ) overwhelmed with adding all this into the mix of my already chaotic life with work and the trio, but reminding myself how far we have come and this will be no different. I love being able to talk to prospective adoptive parents who are thinking about cleft as their special need and encouraging them...some of the words I say I need to remind myself. Though not a minor special need, its managable, and most of all extremely rewarding. I love looking at pictures before Chloe had her repairs and then now. It is truly amazing the transformation that takes place! So though its a lot...it worth every single appointment...every single therapy session...every single bit of work!!!!!