Monday, May 21, 2012

More Videos

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This is Selah "brushing" her hair. We had just finished bath time and I was getting ready to brush her hair. I talk to her about when it's time to brush it and show her the brush. At first she'd cry when it was brushing time but she began to reach for the brush so I gave it to her and guided her hand to her head. She taps on her head more than using brush strokes but she's trying. I tell her to brush the other side and point and she'll switch hands and "brush" that hair. She, of course, enjoys the praise and knows she's doing something good. I realized that if I only show her things then it doesn't take long and she catches on. I'm bragging i know...can't help myself :) Again, overlook my annoying commentary or chatter...just comes along as part of the videos, lol!

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This is just another video of her "talking" to me. Thankfully she has been tolerating her speaking valve pretty well. ;)

Thanks for your continued support and prayers! Love to you!!

Friday, May 18, 2012

Update

Hi! I've been meaning to post an update and have let too much time get by. We met with the craniofacial team at UMC to discuss the updated CT images and their recommendations, etc. for Selah's jaw surgery. Basically they told us that Selah's lower jaw is so severely recessed and so there's so little of it there that a jaw distraction isn't an option...unless it's an absolute last resort. They want to monitor her for the next several years and see if there's any lower jaw growth. We're not supposed to see them again until next year when they want another CT scan done. They also talked like a rib graft procedure is more appropriate for her...rather than a jaw distraction. So, we're not sure what's best or what to do with the information. We are definitely going to look into other opinions and consults at other locations but we're just not sure where that is yet. We are praying we know God's leading each step of the way.
We also saw her ENT and he said it's time to change her trach to a bigger size. She currently has a 3.0 trach and he wants her to move to a 3.5 size. We change the trach (3.0) each week at home(so it's a clean one each week)and it's something we're more comfortable with. This week we tried to put in the bigger size trach (3.5) and it did not go smoothly though. We tried it here at home and it wouldn't go in. We called our ENT's office and he worked us in on Thursday so he could change it for us. He tried and also couldn't get the bigger trach in. He was putting a lot of pressure on it as he was trying to put it in and it wouldn't go. He looked concerned and said that he's not ever encountered a trach not going in like this. He said, because her current trach size is still ok, it's not an immediate issue. As she keeps growing though it will become more of a concern because she will need bigger trachs as she grows. He's not sure what is going on in her airway, etc. that would be causing the resistance and not allowing the trach to go in. He is going to have her come to the operating room and do a Bronchoscopy...spelling??..procedure to look in her airway and see if he can figure out what's up. It should be an outpatient procedure and hopefully not much to it. It will depend on what he finds out though. She will have to be under sedation/anesthesia too. The procedure is scheduled for the end of the month. So, we're trying to be hopeful that it's not anything to be too concerned about, but it is still hard at moments to not worry. I just want my sweet girl to be okay...only God knows my deepest heart's desires...
We truly appreciate your continued prayers...thank you!