1st Grade Chat

First of all, let me say welcome to any new visitors to Faith's blog.  I spent some time this morning talking to all the first graders at Faith's school today and handed out an information booklet that I made to help the kids understand what Faith is getting ready for, explain why she will be out for awhile and how they can help while she's gone or if they see her somewhere for the month or two she will be out of school, or when she gets back to school.

The kids were really wonderful.  They didn't have too many questions, but the ones they had were very thoughtful, will she be okay, will it hurt, and one of my favorites - how long is the flight to Cincinnati!  The other thing I thought that was so cute today was when I asked if any of them knew what Faith was most excited about coming from this surgery.  One of the girls raised her hand and said "She wants to SWIM!"  Faith had already told them!  I was so proud of her for telling the kids about her surgery and the good that we hope will come from it!

Here are pictures of the booklet I created...

I wanted to show the kids how Faith has grown just like them...

And then I gave them some simple info about the surgery 

with a picture of Ellie with the head gear on that Faith will have...

Some more info and pictures and we talked a lot about 

ideas of how they can help Faith when they see her

and then I shared some pictures of Cincinnati and talked about the 

fun things Faith has gotten to do, going to a Cincinnati Reds baseball game 

and seeing a polar bear swimming at the Zoo, and a picture of her brother

Anthony giving her a kiss after her first surgery...

The kids were so wonderful and I'm so glad Faith has such good friends in her life.  I hope the parents and staff that are following her blog will enjoy knowing how she is doing.  I warned Mrs. Frank that I can't promise to make this blog always be kid friendly as we use this to share details both good and bad with our extended family, friends and other families with children going through the same difficult journey.  So, just decide what you want to share with them and I will make sure to post some pictures of the good things we do and see during this next milestone of "Faith's Journey".

Faith is SO sad that she is missing the last couple of days at school this week - but she is still sick and we have to get her better by Monday if we are going to be able to keep the surgery scheduled for Wednesday.

Update on Visit to Pediatrician:

So my earlier post I said the nurse told me on the phone the doctor most likely wouldn't put Faith on antibiotics, but I decided to call them back again and bring her in.  The nurse took her vitals and her temperature was back to normal, but her oxygen level was between 88-90%, which is a little low for her, she's usually in the mid to upper 90s.  But it's not really a huge concern until she drops into the 70s.  Our regular doctor was unavailable, so a new doctor came in and we talked, she explained why they typically don't like to give antibiotics and I said I understand, but I'd like to try anything that might get her better in time to still have surgery. I think we were pretty much at an impasse, but then she listened to Faith's lungs and said "the good news is I'm going to prescribe antibiotics, the bad news is she has some fluid sounds in her right lower lobe which might be pre-pneumonia".  

So, we started her on a 5 day course of Zithromax.  She also said usually around day 3 or 4 kids of this kind of cold is the worst, so I'm hoping today is day 3, and that by Monday she is mostly better.  But, if it turns into full blown pneumonia then there's really nothing we can do about it but work on getting her better and just letting go of all the planning work.  

I know from hearing so many other families' stories that these things happen so frequently and there is nothing we can do, so I just have to relax and let go.

Later on, the pulmonologist's office called me back.  Our primary doc is out today, but her partner (and her husband!) called and he said he was going to suggest Zithromax as well (which he would have called in for me over the phone as I had wanted!).  He said the reason they are more aggressive with antibiotics with trached kiddos is because even it is a viral infection, they are more prone to getting yucky bacteria in their lungs from the extra mucous and the trach opening being more direct access to the lungs.  It was nice talking with him.  He noticed there was nothing in Faith's chart for the last year and figured she must be doing really great, which is exactly true.  He was also happy to hear we are going to Cincinnati because that is where they send all their complicated airway cases -- to Dr. Robin Cotton, a world renowned ENT who seems to the best in reconstructing airways.  Dr. Cotton is doing Faith's tonsillectomy and adenoidectomy right before Dr. Gordon does her jaw distraction.  We just got lucky by choosing to go to Cincinnati for Dr. Gordon that we also get this amazing ENT surgeon.

So, say a prayer or keep your fingers crossed for us, or send good vibes that Faith is better by Monday!!

Thanks for reading,

Robin

Faith is Sick

Faith was sent home from school yesterday with 102 degree fever.  Today it's down to 99.8 - 100.2 but she is coughing a ton of heavy mucous out of her trach (sorry I know that is gross!).  Last night I suctioned her trach 3 or 4 times when we normally don't have to do anything all night (except start her feeding at 4:30 every morning).

This is a huge problem, because if we can't get this cleared up before we go to Cincinnati, the anesthesiologists will cancel her surgery. In fact, when I called the surgeon's office they were ready to reschedule it now.  I asked if we could wait till Monday to make a decision and they agreed, but I'm very concerned all the planning we've been doing is about to go down the drain.  I have no idea when we could reschedule this -- probably not until the summer, which we already decided wasn't fair for Faith to have to give up another summer.

I tried calling her pediatrician today and the nurse said it's probably viral, so there's nothing we can do about it.  Okay, I am quite aware that doctors used to do exactly the opposite and say well it could be either viral or bacterial so let's put her on antibiotics in case it is bacterial, and if it's not bacterial then it will just have to run it's course.  And now days they have flipped the standard because of antibiotics being over prescribed to saying let's wait and see if it goes away on it's own.  And normally this would be fine; both Fred and I grew up not going to the doctor for colds and just waiting them out - except that she has surgery next week and IF it just happens to be bacterial and antibiotics could knock it out WHY can't we try?  So, I told the nurse, well I'm not bringing her in if he isn't going to give her something, I will call her Pulmonologist (lung doctor) who will definitely start her on steroids immediately and usually over the phone.

Problem is, we haven't taken Faith to her Pulmonologist in over a year because she has been so healthy, so I'm sure I'll have to take her in.  So I call Dr. Guarin's office, who is one of our favorite doctors here in Denver because she has been such a strong advocate for us; she helped us get in home nursing care when Faith was an infant after she had her first blue episode.  But, unfortunately she was out today and is supposed to be back tomorrow.  Her nurse offered for us to come in on Monday -- umm - we are supposed to be flying out on Tuesday, we need to get her on something today if it's going to help at all.

So, now I just got off the phone with her pediatrician again and I'm going to bring her in.  I hope we get somewhere and it isn't for nothing.

Hopefully I'll be able to do another update later, plus I want to post about the great chat I had today with all the first graders at Faith's school!!

Robin

Faith Telling a Story

I wanted to get a video of Faith talking before her surgery. I think her speech will regress a little after her surgery since they are taking out her tonsils as well as growing her jaw. So much change will probably mean she has to relearn how to position her tongue and lips again.

I think she learned this story at school, but she made a few changes to if. I love her dramatic flare!




The words...
"I made a snowball, perfect as can be,
I thought it could sleep with me,
I made it a pillow and let it sleep with me,
But last night it ran away, but first it wet the bed!!! (argh!!)

Note from Faith's Teacher

I got the greatest note from Faith's teacher, Mrs. Frank, who we actually knew from 5-10 years ago as her son, Ryan Frank, and our Ryan played baseball together!  Anyway, Faith has really been enjoying 1st grade with Mrs. Frank and she has been getting over her shyness from last year.  With her upcoming surgery, Faith has been talking about it quite openly at school.  Here' the note from Nancy...

Robin,

Thanks for checking in with Mike regarding your visit to explain Faith's surgery. Let me know what day works for you to come in to visit with first grade. I think he mentioned Thursday was a possibility. Let me know what works best for you and we will make it work.

Yesterday Faith was sitting with a small group of classmates and her surgery came up. She was very chatty about it, which I thought was great. This morning a student asked a question about her surgery and I said, "Well let's ask Faith if she would like to answer your question with all of us." She immediately said, "yes", which was great. So after our morning message this morning Faith stood before her classmates and said she was going to Cincinnati for surgery, that she would have bars on her face and that dad would be turning her pins. She told them it was to help her jaw grow so she could get rid of her trach and she would be able to eat more. She also mentioned knowing a friend that already had the surgery. She said she needed to stay home for awhile because she would be sore and tired. We talked about being able to Skype her when she was up for it, as well as what we could do, say when, and if we see Faith with her "bars" on her face.

It was wonderful and Faith was a champ! Her classmates asked very appropriate questions and were truly interested in what she was telling them. I think she did a great job laying the groundwork for your visit. It was so spontaneous and natural.

Let me know what works for you. It seemed like surgery was so far away last time we talked and now it is just around the corner. I am doing my best to keep our room healthy. We have had some coughs and runny noses the last few days. I will keep my fingers crossed, and hope that it is not passed on to Faith.

Take care,

 Nancy

Pretty cool, isn't it?  I'm planning on coming in to talk with the class this Thursday, but I almost feel like I don't need to as Faith is doing such a good job of it all by herself!  I asked Christy Holton, another mom with a kiddo (Harlie) going through the same kind of surgeries about ideas for how to present this to the kids.  She made a book for her daughter when she started Kindergarten so all the kids could get to know her and not just stare at her the first time they saw her.  She sent me the link to the book (http://lifesinceharlie.blogspot.com/2011/10/harlies-book.html) which is so sweet.  And she gave me some pointers about keeping everything really short so the kids could understand.  So, with that advice I created a couple slides to share with the kids and send home with them when I come in on Thursday.

I will try to post a copy here.

Robin

Upcoming Surgery - February 6th

We are moving forward again on this journey of Faith's to continue reconstruction of her jaw in hopes of getting her trach removed and letting her live a more typical life for a kid. We had her bone graft done in June and now it is time to use that new bone to grow some more bone and give her a bigger jaw. So we have a jaw distraction scheduled on February 6th, along with a tonsillectomy and adenoidectomy. Apparently her tonsils are "huge" and taking up too much space in her throat.

So, Faith and I will be flying out on Tuesday, 2/5, she will have surgery on 2/6 and stay in the hospital for 2 nights, and then we will be in the Ronald McDonald House for 3 nights and flying home on Monday, 2/11.

Faith will have the distraction pins as well as a halo device (called a Rigid Extraction Device or "RED Device") in place for about 6-7 weeks. We will turn the distraction pins every day for about a month and then I will take her back to Cincinnati for another surgery on March 8th for a chin advancement to build more of a chin for her. We are still waiting to see if that will be approved by our insurance as apparently it is usually done for cosmetic reasons although for Faith it is really for reconstructive purposes.

Following the chin advancement we will fly home again to let that heal along with letting the distracted jaw bone solidify before they take all the hardware off a couple weeks later (around the end of March). Right now we are tentatively planning to have a local Denver surgeon do the removal rather than flying back to Cincinnati a third time.

Our primary goal in the timing of this surgery was to not take away another summer for Faith and to make sure everything is done in time to go to her cousin Megan's wedding in April in Branson, MO. But, since we are doing it during the school year, it will mean she is going to be out of school for the whole time. We are working with her school to set up "homebound" education, but that only gives her a visiting teacher 2 times a week for a hour or two at a time. Hopefully she will be able to learn enough to "pass" 1st grade and continue on to 2nd grade (I'm pretty sure they will work with her and us to make that happen).

We have been talking to Faith about the surgery and preparing her, Fred is very good at talking it up and making it just an expected event. She is so brave and asks questions about whether she will be able to eat with the halo device on. Luckily she met a little girl at the Ronald McDonal House last summer who was going through this same surgery and was wearing the RED device and she saw her eating with it on, so we know she can try to eat, although it will likely be messy, which it is now anyway!! She also asked me if she will be able to sleep with the device on, which is a good question since it will probably be pretty uncomfortable. I told her I think we will be able to use lots of pillows to help her find a comfortable position to sleep in.

Here is Ellie and her brother John John, 

and this is the RED device (which is purple, not red!)

I will be posting a "before" picture soon for us to have a baseline to see how much growth she gets from this distraction. I am very hopeful this surgery could be the one to get her trach out, but I think Fred is more cautious thinking she'll have it for many more years still. I should know better than to get my hopes up, but I just can't help it!!

Thanks for reading!
Robin

Birthday, Christmas and a New Year!!

Life keeps flying by! I keep meaning to post new pictures (when I remember to take any!) and let everyone know how well Faith has been doing, but then I get distracted by whatever is going on at the moment. I'm at Anthony's first basketball practice tonight, so seems like a good time to do some catching up!

Anthony celebrated his 9th birthday early in VA at Mimi and Papa's house and then on the 15th with about a dozen boys from school over for games, pizza, cake and a sleepover on Saturday, Dec 15th, and then one more time with the family on his real birthday on the 19th.  It seemed like a never ending birthday!  I hope he enjoyed it!!

Anthony with Faith and niece Carly!

He also won a great award at school right before Christmas for "living" the school's golden rules of respect, responsibility, and safety.  He was so excited to win this!

Faith has had a great first semester in first grade.  She is really learning a lot and has started to read on her own!! That's exciting as she was so hesitant in Kindergarten to take any risks! 

Christmas was very nice, although Anthony woke with some kind of 24-hr bug and had to go back to bed in between presents.  Santa brought lots of new toys including an Xbox for Anthony and a bike with a horn for Faith (ask me sometime about Santa's big mistake!) and we had Lauren, Carly, Ryan, Dana, Aaron, Karen and Bill over for a big brunch and more gifts.  It was really nice to have such a full house!

On New Year's Dana and Aaron moved into the "new basement apartment"!  It seems pretty good for them and they are getting ready for baby Hallie to arrive soon (2/22 is the due date).  The baby shower is this weekend at Karen's house.  

We are also getting ready for Faith's next round of jaw surgeries, on Feb 6th and March 8th in Cincinnati again.  I'll post more soon with details.

Gotta run for now, my cell phone battery is about to run out!

Robin