One week later

Sorry it's been awhile since I've posted, but things have been busy!  Faith's surgery went well last week, but as many of you know, she had to go back to surgery yesterday for a hardware adjustment because the two front screws had pulled out.  Below are some pictures from her surgery last week:

Anthony patiently hanging out in the 

waiting room while Faith was in surgery

Faith just waking up from Anesthesia

Anthony's first time to see Faith the next morning

Faith's new hardware

At home, after getting pins turned; not happy, but doing okay

Turning her baby doll's pretend pins helped her forget about her own

Doing puzzles with Daddy totally back to normal

Fred and Anthony went back to Colorado yesterday morning, it was sad to see them leave but we are doing video calls so we can at least see each other and the kids when we talk. Being apart for 4 weeks stinks and really why was it so important for Anthony not to miss 6 weeks of PRE-school??  I know it was best, but sure not liking it right now!

Yesterday's surgery (Faith's 7th) was very fast, less than a half hour and thankfully the recovery nurse was really helpful in trying to get us out of there  quickly so I could get her into bed at home instead of being there for hours.  Faith was very upset after this surgery although we were pretty sure she wasn't in pain because she was stilled numbed with a local anesthetic in her mouth and she would shake her head "no" when I signed "owie?" to her.  It was the first time she had fentanyl for pain med (a different narcotic instead of morphine), so perhaps she doesn't do well with that one and we will try to avoid it in the future.  

Today is day 5 of turning her pins and I think we will be trying to turn for about 10 more days give or take a couple.  I personally can't tell yet if her jaw is moving forward, but I will take some new pictures in another day or so and then post some before and part way pics to compare.  

Terry is on the road now, just called to say she has about 2 more hours to get here - it appears to be turning into a much longer drive than expected!  So how did both Perry and Keenan know better than Google Maps or AAA that it wasn't going to be an 8.5 hour drive?  Has nothing changed in all the years since you guys did this drive (for college I'm guessing?).  I feel bad about it taking so long, but so happy she is coming.  Faith can stay up late tonight so the long drive will have been worth it for her!

More soon,

Robin

All going well

Just a really quick update to let everyone know things did go well with Faith's surgery and she and I are in bed together upstairs in the pediatric ward now and amazing Faith seems pretty happy right now.  She's on morphine so I'm sure that helps, but after some long hours of holding her in my lap and her seeming fairly agitated when i talked to anyone or anyone came near her, now she is happily watching Noggin TV and signing and trying to talk and even sing.  I think she thinks this is kind of special because at home Anthony gets to watch TV in his room at night when she just has to go to bed.

We talked with Dr. Gordon after the surgery and found out it took longer because he had to make a lot of tweaks to the device they were attaching to her bone -- so he'd walk back and forth between her and the back of the room trying to see if it would fit and tweaking it some more.  He said that made it really tedious work, but he needed to get it right.

Well it's late and Faith has fallen asleep in my arms, so i think i'll try to get some sleep now too.   Thank you all so much for the many emails checking in and prayers and well wishes.

Robin & family

(Lindsay, it is great to hear from, was meaning to email or call you and see if there was any way for you to come visit, but couldn't find the time - so sorry).

Faith's Jaw Distraction

Currently in Progress

So it's been since 9:15 am since Faith went back, just over 3 hours ago.  First she had a MLB (something Laryngoscopy Bronchoscopy) by the famous Dr. Robin Cotton (he's famous among kiddos with trachs and airway issues anyway), his part took about 15 minutes or so and he came out and talked with us and told us her airway below her trach looks great but that as expected, her upper airway (back of her mouth) is still significantly blocked by her tongue.  He thinks that the jaw distraction will be the main surgery she will need to eventually get her trach out, but he cautioned that we should proceed very slowly in making the decision to decannulate (take out her trach) her.   He thinks she may also need a tonsilectomy in the future to help with creating adequate space in her upper airway, which is fairly typical for kids like Faith with micrognatia (small lower jaw), but we haven't heard that from anyone else yet.  Plus it can cause speech issues, so I'm not too happy to add that to her list of future surgeries and will definitely be hoping it isn't needed or that maybe "shaving" her tonsils instead is an option.  I actually don't know much about shaving the tonsils, but I've been hearing other parents talking about it as a newer option that some doctors are now doing, so something new to start researching down the road.

Dr. Gordon has been in surgery with her now for close to 3 hours and I'm starting to feel very nervous about it.  It's hard to know that her surgery is taking a lot longer than initially expected - how can that not be concerning that something is not going well?

Ahh, it's over.  Gotta go meet with them.

We are in Cincinnati and tomorrow is the big day.

Well, we arrived in Cincinnati Sunday evening.  We finished our packing on Saturday between trying to fit in last minute visits with Rose & Bruce on Thursday, Claire on Friday, and Keshena, Janeeen, Ashley and her mom Sandi on Saturday!  It was my typical trying to do too much, but it was great to see everyone before we left!   Lauren took us to the airport Sunday morning; got there on time and sailed through curb-side check-in and security (except for a major mess of a tupperware of milk that leaked all over inside the luggage with all Faith's medical equipment -- surprising how easy it is to get through with stuff you normally can't take when it is for medical needs -- I'm really appreciative of that).  We flew Southwest Airlines who once again paid for Faith's ticket and part of mine (luv vouchers for medical transportation) - non-stop into Indianapolis and arriving about 20 minutes early.  Southwest is really the best!!

We rented a car and drove to Cincinnati getting to our new apartment (a corporate rental deal) just around 6:30pm.  It's a nice little 2BR 2BA place about 20 mins north of the hospital. We spent Monday going grocery shopping and setting up and went out to dinner.  Today we went to the hospital to meet with Dr. Gordon and some of his team to talk about Faith's surgery one more time and look at the actual hardware he will be using and a plastic mold of Faith's skull to show how the device will be attached (he needed that to have the hardware specially crafted to work with her limited amount of jaw bone).  He showed us that the best case is to cut in front of her first molar which means it would eventually need to be extracted due to being moved too far back to be useful, but can be replaced with a dental implant eventually.  Everything is a go for tomorrow morning, including our insurance paying for it -- our case manager called this morning to let us know it was pre-approved (I thought she was about to say it wasn't and

 started panicking since we are here already!!).

After being at the hospital we rushed home so I could have a phone interview for a PM position at Comcast.  I think that went very well although I know one of the other candidates and believe she is equally qualified, so it could come down to just personality differences!!  The hiring manager said she would be making decision in the next week or two, so now I am done thinking about my next job and turning all my attention to Faith!

Here's a quick couple of pictures of Faith that I took in the last couple of weeks with my new toy -- an iPhone!  

Faith and me playing with the phone

Faith - just being cute

Anthony being a great big brother!

Kim - Faith's Speech Pathologist

Anthony posing!

I hope to be online sometime tomorrow to give an update.  Thank you so much for all the phone calls, emails, visits, thoughts and prayers from so many of you.  We are overwhelmed to see so much support for our baby girl.  It has helped more than you know!

Love from all of us.

Robin

Jaw Distraction Surgery Scheduled - 2/18

Faith's first jaw distraction surgery has been scheduled for Feb 18th at 9am.  We have been a little crazy for the last week or so trying to get everything planned, but the wheels are in motion and it looks like we are really going forward!!  We are leaving on Sunday, Jan 15th, to fly to Indianapolis and then drive to Cincinnati that evening (~2 hour drive).  All four of us are going out and Faith and I will stay in Cincinnati for 6 weeks!  Fred and Anthony will be with us for the first and the last week, but we wanted him to come home and go to his pre-school classes in between.

I'm also still trying to do my job hunt, which surprisingly has been going pretty well; I have two interviews this week plus two other somewhat promising possibilities in the works.  If one of these doesn't pan out, then I will continue sending out my resume while I'm in Cincinnati and get aggressive when we get home in April.  Right now, I'm feeling fairly confident that something will work out!  

I'm going to try to post fairly regularly during her surgery and recovery time.  Still need to get my pics from December uploaded, but keeping it short for tonight. 

Thanks for reading,

Robin