Anthony's Report

Faith is a one of a kind sister. I'm super happy that faith is going to get her trach out in a year! Have to grow up with her was a challenge because she got most attention in our family.  I like  teaching Faith how to play certain games, Her favorite is club penguin (www.clubpenguin.com) Good for little kids to understand how to save money to buy things for their penguin/avatar (Yet is has a pain in the butt membership that sometimes glitch's and goes past the time you asked for, 1 or 2 each year is good, Just remember to cancel on the ending time) Club penguin also has a no bad words if your child says/hears one they will get banned for a certain amount of time. Her other favorite is ROBLOX (www.roblox.com) Where you get to be anything and build anything. They have memberships called builders club levels are Builders Club (Normal) Turbo Builders Club (Middle) and Outrageous Builders Club (Best + Costs more) yet ROBLOX is a rather fun game made for 9+ due to bad words OK to 13+. However 12 and below cant see the chat making it safe for younger kids. Finally she LOVES Minecraft (www.minecraft.net) Its a creative game that costs only 28$ and no memberships (Playing on servers may have donations for special power ups/admin so say yes every 6-12 months) Your kid has 2 options to choose playing multiplayer (This game has NO RULES AT ALL so bad words are see-able unless you have chat off. Yet they do have rules on servers.) or single player Its better for little kids. This game also has hardcore (Singleplayer but with one heart) And when in single player you can pick creative (Build anything with all the tools yo u need that lasts for ever!) Or survival (Gather tools and supply's and make a shelter).                    But enough game talk, I also teach her to read and do math and science (I use brainpop a nice learning website www.brainpop.com and for younger kids www.brainpopJr.com)

            That is all for Anthony's Report!

 

 

Following through on a promise!

Faith finally got the new rollerblades we promised to get her after she finished her surgeries! She's very happy with them but wants me to take her to the skating rink. Soon, I say!

You can see she has healed very well and we have a sleep study scheduled for August 28th - that will give the doc enough info to decide if she can be decannulated (take her trach out). I'm pretty sure it will happen!!

I will try to post more soon.

Ready for Surgery!

Just waiting for them to wheel her back now. They just gave her a little Versed (amnesiac drug) which helps her relax and forget being put under. She was pretty upset this morning, mostly dreading the IV (actually the removal of the IV as they put the IV in when she is under). Everyone tries to tell her this is an exciting day, but it isn't for her, we are really beginning to see the affects of going through so many surgeries (I'm guessing we are roughly up to 20 times of her going under anesthesia). The really good news is that this could be the last time for many years!
I'll take another picture as soon as they call me back to see her in recovery. I'm guessing this will take less than 30 minutes! And it's outpatient so we will go back to the Ronald McD house this afternoon and then we fly home tomorrow!! I can't wait to be home an I'm sure she will be glad to be home too.
We've really been missing Fred and Anthony not to mention that we completely missed Dana's graduation. Such a disappointment not to be there.

Enjoying the Craft Room

Faith is having fun in the craft room at the Ronald McD house, but you can see where her heart is...

Back to Ronald McDonald House

Finally got a call to get back into the Ronald McDonald House late last night.  I guess we could have packed up and gone over there last night, but it was already 9pm when they called and I wasn't up to packing, plus I think the hotel would have charged us for the night anyway.  So, we went to the pool one last time instead and will go after breakfast this morning.  it's about 7:30 now, and Faith is still sleeping.  I think I can pack up our 3 suitcases (2 are mostly medical supplies and food, just 1 is clothing) in about 15 minutes - so much easier when you are not trying to decide what you need to bring from home.  Turns out we did forget something - spare batteries for Faith's hearing aids! Oh well, I was able to find a CVS store eventually and buy a pack.

We've been having some fun - especially on Sunday when we went to the Reds game.  Unfortunately they lost the game in the 10th inning, but it was a gorgeous day and we really enjoyed being at the ball park.  And they had a free Beach Boys concert afterwards with beach balls provided to keep the crowd busy while they were setting up!  Faith liked that a lot and was a little rude to a few nice people who offered her a small beach ball - she wanted the huge beach ball, which she eventually got!  She was also excited that John Stamos from Full House was performing with the Beach Boys - she even texted Anthony to tell him!  Funny that my kids know him but have no idea who the Beach Boys are.

Faith has been texting Anthony and Daddy a bunch the past few days - it's so cute - here's one she wrote to Anthony on Sunday:
"I mis you Antony somush Love faith"
:)
and one to Fred:
"Der daddy I mis you sow mush love faith"
:)

She started crying on the phone last night because she really misses them a lot and she's also feeling scared about going back into surgery on Wednesday, even though it is the final surgery and they will just be removing the pin through through jaw (ouch!) and taking off the RED device.  She's been complaining a lot over the past few days about her head hurting her.  I think it's actually her neck that is bothering her, she keeps putting her head back to try and stretch it out.  She probably needs a good shoulder and neck massage!

Well, I better get up and get packing here!
More later,
Robin

At the Cincinnati Reds Game

Children's got us tickets to another Reds game! The weather is perfect and the team is number one so far this season! Faith is actually into the game and learning the basics! Nice day!

Surgery Surprise

Sorry it has taken me so long to post!  Normally I try to blog while Faith is in surgery (on Wednesday, May 22nd) but it actually was such a quick surgery I ended up using the time to get lunch and calling my parents.  Then I was busy in the hospital taking care of her for the first night, then we left and went to a hotel (waiting to get back into the Ronald McDonald House) and we've just been keeping very busy until today.

So, let me back up to the beginning of our trip - we left early Monday morning - Fred and Anthony drove us to the airport at 8am and we caught an 11:30 flight to Dayton.  I have to say, getting through security was a pain this time around.  Faith actually had to be frisked (they called it modified becasue they don't touch kids private areas if they can get approval not to) because her RED (halo device) set off the metal detector.  Lesson learned - ask for a wheelchair in the future, then they would have rolled her through a separate gate and only checked her hands with a swab test afterwards. 

Lately Faith's food has been a lot more difficult to bring through security - ever since I've been carrying her homemade blended formula with us I am used to them scanning that in a machine that can scan clear bottles.  But, starting the day of the Boston Marathon bombing, when we were flying home from Kansas City, they've started giving me a hard time about her pre-packaged formula that comes in boxes (like kid's juice boxes).  I've taken this stuff through security many other times with no questions but the past 4 flights I've been on since that day it's  been a problem - so now I have to be frisked or let them open one of the containers (which I have no way to reseal).  I really don't care about being frisked, I don't find it all that big of a deal, but it's just a hassle and for something that is obviously marked children's formula?  Really?  It's stupid.

Anyway, we landed in Dayton and the hosptial shuttle picked us up and drove us to the Ronald McDonald house.  We got there in time for dinner and then we watched a movie in our room.  On Tuesday we went to the zoo.  I borrowed our neighbor's stroller (thank you so much Becca!!) which has been so great to have while we been here and perfect for the zoo.  I am able to put Faith suction machine in the bottom of it and Faith can easily get in and out of it, when she feels like walking.  She really enjoyed the zoo and we took our time, spending as long as we wanted.  We saw the Cheetah show where they run the cheetahs and enjoyed some other favorites like the Polar Bear swimming.

That night was a particularly difficult night - Faith has been off all pain medications for 2 or so weeks now and I ended up forgetting to bring any pain medication with us.  I thought of it once or twice, that I needed to bring it, but I never got around to pulling it out of the cabinet and packing it.  Ugh.  So, for the first time in weeks, Faith started crying and signing that her jaw was hurting.  I didn't know what I was going to do.  Here I am in the Ronald McDonald House, not at home, with no tylenol or anything else and it was after 10pm at that point.  No car to go anywhere and no one to watch Faith while I went anyway.  I was pretty sure it was just anxiety about the surgery that was upsetting her, but still some tylenol or the Oxycodone they gave her for pain would have been really helpful in calming her down and helping her to fall asleep.  I told her the only thing we could do was actually go to the hospital (across the street) to which she said yes.  Oh great - the night before surgery and she wants me to take her to the hospital for some tylenol.  Well, I really didn't want to spend the night in the ER, so I had to tell her a couple of times let's just wait and see.  Finally I thought of at least turning her pins backward at least one turn to release some of the tension.  That seemed to help enough for her to fall asleep.  Whew!

The next morning she seemed much better.  Her surgery was scheduled for the afternoon, so we had time in the morning to get checked out of the Ronald McDonald House and go to the hospital for her x-rays and visit the gift shop (again!!!).  Then we went to check in for her surgery and they sent us back for the pre-check stuff and to talk with the surgeons before the surgery.  We met the ENT surgeon who was scheduled to do her tonsillectomy and I was able to ask a question about whether removing the adenoids could affect her speech (thanks to Mama Bear - Sandi on my jaw distraction group for making me aware that this could be a problem) so he told me they can do it where they leave a "bumper" behind so kids can still close off the roof of their mouth for speaking.  That made me feel comfortable.  Then Dr. Gordon came in to discuss his part and get consent, but as soon as he looked at Faith he said he didn't think she needs the chin advancement.  He said her growth from the distraction looked great and that he would just remove the RED device for them to do her tonsillectomy and depending on whether the bone was hard enough he might leave it off and we would be completely done!  That was such a big change of plans!  I didn't want to get my hopes up though cause it was still just a possibility and not definite.

So then it was time to take her back to the OR.  We have been giving her Versed (sp?) the past couple surgeries and it really calms her down a lot.  It is an amnesiac, so they actually relax and forget going into surgery.  I got to start the anesthia again - connecting it to her trach and then waiting for her to go under and give her a final kiss.  After that I checked into the waiting room, gave them my cell phone number and went to get some food.  I came back and called my parents and then they were calling me back already for an update.  I figured Dr. Willging was done with the tonsillectomy but Dr. Gordon walked in instead.  He said he took the RED device off for them to do her tonsillectomy and he looked at her jaw to see how soft or solid her bone was.  He said it was still pretty soft so we could either wire her jaw shut or put the RED device back on for another week.  I opted for keeping RED device on.  Then Dr. Willging joined us and said her tonsillectomy and adnoidectomy went smoothly and that he only shaved her tonsils instead of removing them enitrely because he didn't want to get close to the area where Dr. Gordon made his jaw cuts.  So that meant she would probably heal faster and a little less pain and less chance of bleeding.  He said what Dr. Gordon had done with her jaw was really great and it was easy for him to get into the back of her mouth to do his work.  That is SUCH a huge statement for a kid who was born with no room to even breathe!!

So then Dr. Gordon went back to put the RED device back on and a few minutes later I was called back to see her.   She looked much more peaceful coming out of this surgery than her last one.  We spent the night in the hospital and other than her needing frequent suctioning, everything was pretty straightforward.  I talked with the ENT the next moring about her being decannulated in the future and he explained their process to me (slightly different than what I've heard from other families).  After she has had time to completely heal from surgery (1-2 months) we would bring her in for a 48 hour observation while her trach is capped and then if that goes well they schedule a decanulation trial where we come in for a night and they take her trach out and see how she does overnight.  And if that goes well then it's done - she just goes home without a trach!  How crazy would that be?  As crazy awesome as it would be, we can't rush into it.  I'm pretty confident we can get her capped this summer, but I think we should take it slow from there, actually let her get sick and see how she handles a cold while capped (having a trach sometimes spoils us as we are so used to being able to suction everything out).  I know there have been other families and one in particular where they were able to decanuulate their child only to have an emergency situation happen and the child had to be retrached again.  And it's much harder emotionally to go back to a trach than it is to live with it longer. 

Well, once again I've written too much and now it's very late and I need to go to sleep!  Thank you all for reading my long winded posts.

I keep saying I will post pictures soon - hopefully tomorrow!

Robin

Updates before we go back to Cincinnati on Monday

Note:  I started this posting last weekend (Sun, May 19) and never finished it.  I'm going to go ahead and post it now without the pictures I wanted to add and start a current entry today (Sat, May 25)

The past three weeks have been intense to say the least.  We've been through a lot watching Faith's jaw change dramatically, doing her treatments twice a day, suctioning her trach over 20 times a day, sometimes every 10-15 minutes, dealing with the constant drooling, doing a nerve-racking procedure to wind back her pins and then pull the wires tight again, and most of all, missing her beautiful voice and trying to communicate with sign language.

I wont sugar-coat it, it's been really hard work.  For example her treatments don't take that long, but are fairly involved.  We start with cleaning the pin sites, brushing as least her front teeth with a toothette sponge (little sponge on a long stick for rubbing in the mouth after surgeries), applying a little bacitracin and then turning her pins 1 mm in the morning and the whole routine again at nighttime.  We've been taking turns, Fred usually does the mornings and I do the evenings which has been nice to have him share the work with.  Faith really doesn't like any of the treatment and she kinda pushes a little on my arm/hand to try to limit how close I can get to her face, but she says it doesn't hurt when we turn the pins, so we don't feel as horrible as we would if we knew we were hurting her.

But as hard as it is, it is also amazing, to see her jaw double in size, to see her breathe through her nose for the first time in her life and to see her bear everything that she has to go through with such bravery.  Yes, she did cry the morning before the surgery, and there have been tears a few other times, but I don't know an adult who could go through what she is going through with as much acceptance and grace.

Anyway, I wanted to share a few highlights from the last week or so.  Mostly Faith hasn't wanted to do a lot around other people, but slowly she's been warming up.  She had no problem going to a Rockies game last Wednesday, against the Yankees (which meant Fred and Anthony wore Yankees gear and Faith and Mom wore Rockies colors).  We were able to request handicap seating for her, which really helped with being able to suction her without feeling self-conscious and having room for extra stuff.  It was chilly but we we bundled up and it was a fun evening.

On Thursday Faith's teachers came to visit her which she really enjoyed which I think I blogged about last week.  Over the weekend we didn't do too much - I was supposed to run a 5K race, but my knee is hurting so I just ran a very slow run, for a time not worth mentioning! 

On Sunday, Fred and Anthony made me breakfast for Mother's day and we had a really nice day.  The butterflies came out of their coccoons that morning and then Lauren, Carly, Ryan, Dana, Aaron and Hallie all came over and hung out for the afternoon with us.  It was a beautiful day so we sat out back while the kids played.

This last week was busy too.  Fred tried to take Faith to the Channel 7 News Station to meet some of the reporters that Fred has become friends with over Twitter!  I say "tried" because when they got there Faith just started crying and Fred had to give up after 15 minutes and take her home. I think it's really cool that Fred has become friends with them -- he started following them on Twitter a few months ago, and went to meet them at a meet and greet they were doing at a coffee house and has been tweeting with them since then.  Fred studied broadcasting in college, so it's nice for him to make friends with people in the business! The ironic thing about him going to meet them that day at the coffee house was that he was telling them a little bit about his kids and about Faith and they just happened to air a story about Chloe that same day!  He saw it later on and tweeted them about it - Chloe and her family have become good friends to us since we got to visit her as a baby.  Faith and Chloe have roughly the same syndrome, although Chloe has never been diagnosed and could have some other things involved compared to Faith.  Chloe has also been going through exactly the same surgeries with Dr. Gordon here in Cincinnati - twice we were supposed to be here at the same time but the first time Chloe's surgery had to be delayed due to insurance coverage issues and the second time Faith's surgery was delayed because she got sick (in February).  sorry for that long tangent!!

On Thursday Anthony had his field day and Fred took Faith to go watch.  Surprisingly she seemed pretty comfortable there around all the kids at his school.  They all know her and are always happy to see her, plus she has been going with Fred to pick Anthony up after school for most of the time she's been wearing the RED device (halo) on her head.

On Friday Fred took Faith to her own school for their field day and she saw all her classmates!  They were so happy to see her and although she was a little shy, it seemed liked she had a good time seeing them too.  It worked out perfect since we are leaving on Monday to head back to Cincinnati and she won't be back until after school is out for the year.  We are hoping to throw a welcome home party for her and invite all her classmates, but I have yet to get it organized!!

I wanted to post some pictures for each of these activities but I'm too tired tonight.  I'll try to find some time soon!

Keep on Going Says Dr. Gordon

The past few days had us feeling a little worried about how things were going, but I finally called Dr. Gordon's cell phone this afternoon and he has reassured us that he is happy with the pictures I sent him on Friday and he got the x-rays from the hospital. He said her x-rays looked good and he explained why he thinks one side has less resistance than the other, but not to be worried.

 

He wants us to keep turning for another 10 days and he promised that when he goes back in to do her chin advancement that he will shape (by bending the new soft bone) her jaw into a position that will reduce the under bite.  It's really hard to see her like this, the more we distract, the greater the under bite, which causes her upper jaw and nose to actually look sunken into her face.  I just don't want her to go from having one extreme that makes her look different to the opposite extreme.  It's taking every ounce of my trust right now in Dr. Gordon!

 

He actually had me back up her pins and re-tighten the wires so we can keep turning for the next 10 days. That was tough and I felt way out of my comfort zone.  I really hope I didn't cause any damage while doing that.

Before moving pins back:

















After I screwed the pins backwards and shortened the wires:

Quick Update

Faith had a great visit from her teachers this afternoon and they brought her some cool things - 2 chrysalis (caterpillars in their cocoons) and a cup with a sunflower seed planted in it, and a t-shirt from the Deaf Hard of Hearing Track and Field day that happened today.  I'll have to take a picture of the t-shirt, because it shows a major change in the Deaf community, that BAHAs are beginning to be common enough that they included it in their drawing using different hearing aids as the letters/pictures on the shirt. 

I of course didn't think to take a picture of Faith with Mrs. Nancy Frank, Mrs. Karin Leonard or Ms. Kelly.  Guess we will have to have another visit with them next week to do that!!  Faith really enjoyed seeing them and I can tell it's a little stressful when she hears someone is going to see her for the first time, whether it's one of the neighbor kids, her teachers or when I tell her I sent a picture of her to Mrs. Frank to share with her class.  So, it's good for her to realize that no one cares that she is wearing this halo device, they still see her as Faith, their friend, student, sibling, aunt (to Carly and Hallie) and of course, daughter - our precious daughter!!

We still need to get Faith scheduled for an X-ray.  We tried to get it done on Monday, but ran into some difficulties.  Dr. Gordon (her surgeon in Cincinnati) tends to think everything is easy and had suggested we could just do the x-rays through her dentist office instead of going all the way to the Children's Hospital here which he knows isn't close to us!  But, in reality, it was very difficult.  On the phone it was all fine, they said sure, bring her in.  But when Fred got their with her, they didn't know how to deal with it.  They had all these questions about the halo, how they would take an x-ray with it on, etc.  Well, it's not like we can just take it off to take a picture and then put it back on!

So, poor Fred thought he just didn't know enough to answer their questions and he couldn't reach me on the phone (after he called me and specifically asked me to answer my phone if he called, and then I just forgot and left it on my desk and went to a meeting - not good).  Anyway, I told him later, there was nothing I could have said to help, they were just the wrong place to take her.  So, I ended up calling Children's Hospital, and explaining that we saw their craniofacial surgeon (who specializes in cleft lip/palate surgery, not jaw distractions) awhile back and he knows Dr. Gordon and agreed we could work with him if Faith needed to be seen while we are home in between her surgeries and that we needed to get x-rays done and have them emailed to Dr. Gordon.  So they said sure, they could do that for us, but I needed to have Dr. Gordon's office fax them the directions (which I already knew - he wanted two x-rays done at 72 inches away from her face - one profile and one straight on. but who cares what the mom knows, have to have an order from the doctor) Okay fine.  So, I called Dr. Gordon's office and spoke with a nurse I haven't met there yet, and she said she would get that done and fax it off.  Once Denver Children's craniofacial team gets the order, they would pass it on to radiology who would call us to schedule the appointment (oh, and they have a satellite location in Parker, which is only about 15 minutes away from us).  But, we haven't heard from them, so I guess tomorrow I need to call both places back and find out what's happening.  We really should have done the x-ray at the beginning of this week.

Sorry for my long rant about that, but it's just a typical frustration we deal with in coordinating Faith's care!  Also, I'm a little worried about whether everything is good, for two reasons. 

1. The pin turns much easier on her side where they did the scapula graft than on her better side.  It could be nothing, but I'm worrying it's because the new scapula bone isn't connected to anything and therefore we are not pulling the two bones apart, but just pulling the new bone forward without distracting it where the cut was made.
2. The wire that goes through her chin seems to be sticking out much further on the bad side while the better side of her jaw still looks the same as it did after surgery.  I can't quite figure this out since it is just one wire going from one side of her chin to the other.  Unless her chin is getting narrower, I don't know how more wire could just start sticking out when it didn't before.  Sorry I don't have any pictures of this right now, but I asked Fred to take some pictures tomorrow so I can send them to Dr. Gordon to look at.
3. Finally, this isn't something going wrong, but we are almost out of length on the screw that we are pulling her jaw forward with.  Once it's done we are supposed to started turning another set of pins on the back of the halo device which I'm not quite sure how well it will work.  So that's just a little worry that will most likely go away as soon as we have turned the new pins and know that it works.  Again, I know a picture here would help a lot!

These are the reasons why it would be so much easier if we lived close to Cincinnati or if we had stayed there for the whole time like we did when she was 2, or why I just want to get an x-ray done and emailed so maybe Dr. Gordon can tell me none of these things are issues to be worried about!!!

Okay, that's enough for tonight!  Hopefully I'll be able to post some pictures tomorrow night.  Faith's jaw is already distracted so far it's hard to believe!  I think we've already gained almost an inch in length - last time it took 4 weeks to gain 1-2 cms!    Tomorrow night we are going to a Rockies baseball game as the Yankees are in town and of course that is Fred (and Anthony's) favorite team.  So, cross your fingers that we don't get rained out!

Thanks for reading!
Robin

Day 12? Making Good Progress

I am so sorry to not post any updates in over a week!  We flew home from Cincinnati last Monday night and I went back to work Tuesday morning (while Fred became nurse and teacher at home!).

I have been wanting to do an update ever since we got home.  Faith had a MAJOR MILESTONE that night.  For those of you who saw my update on Facebook, this won't be news, but for the rest of you, I have to tell you about it!

Fred and I were saying goodnight to Faith and she started laughing about something (I don't remember what) and all of the sudden I noticed her nostrils flaring just a tiny bit as she was laughing.  I realized she was exhaling through her nose!  So I got her to do it again, but first I covered her trach completely and said breathe through your nose.  I'm not sure whether she breathed in through her nose or mouth but I had my finger just below her nose and she exhaled this big puff of air on my finger and I just was so stunned!  This is the first time in her life to be able to pass air through her nose!  And after just 5 days of turning her distraction pins!   It is so exciting to think she will suddenly be able to truly smell, what a new world that will open up to her!

I've been wanting to capture a video of it ever since, but I just haven't had time.  I did though get a short video of her playing a game of Trouble with all of us, she has been playing this game about 10 times a day and wins most of the time!!

Also, we have been receiving some really wonderful videos from Faith's class.  These have been so sweet to watch.  Faith sometimes doesn't want to look at the videos,  I think it makes her miss her friends.  But she is warming up to it and tomorrow her teachers are coming to visit!!  I will try very hard to at least get a picture of her with all of them!

Here is today's morning news from Faith's class:

We are working on scheduling an X-ray appointment for Faith this week so we can send Dr. Gordon an update and make sure everything is still progressing well.  I will try to post some pics of her progress very soon, but I'm just too tired tonight and need to go to bed.

More soon!
Robin

Sweet Sleep

Had to post this picture tonight - couldn't believe she was sleeping on her side, although they told me she could. She didn't stay in the position long but I was glad to see her trying it out! My flash probably didn't help. Good night everyone and thanks for all the comments, they give me something to keep me going.

Jaw Distraction Day 4

Today is a slow day. Faith actually perked up a bunch last night when we left our room and went downstairs to find a game to play. She picked "Sorry" and then proceeded to kick my butt at it! I noticed she started to laugh when I got a bad card and even more when she got to send one of my pieces back to the start. And she started doing some cute dance moves with her arms. It made me so happy to see her happy again. This morning she woke in the same mood, but then just hasn't had any interest/energy to do anything fun. We missed the therapy pets which I know Faith would have loved, instead we mostly spent the day in the room watching tv, doing laundry and figuring out Faith's medicine schedule which is one of the hardest things every time Faith has a surgery!! It took me till the middle of the day today to get it all figured out:

Ready to Leave

We left the hospital around 2pm today and walked across the street back to the Ronald McDonald House. Faith stayed in the stroller for a bit, went with me to the kitchen, so I could get a cup of coffee and then even tried to go to the craft room to paint, but changed her mind when we got there.

Chipmunk Cheeks

Faith is sitting up, getting up for the bathroom and actually checked out some toys they brought her today But check out those cheeks - still very swollen. It's suppose to start going down today which would be nice!

Surgery Went Well

It's 7am on Wednesday morning, Faith's surgery went really well yesterday but I was too tired to write anything so I just uploaded some photos from my phone.

The surgery went relatively fast yesterday, she went in at 10am and was out by about 12:30.  Dr. Cotton (ENT) looked at her airway first and they decided to wait to do her tonsillectomy at the next surgery when her jaw is bigger and she has more space for them to maneuver in.  I was a little annoyed with this because we could have done surgery last week if they weren't going to do the tonsillectomy and now Dr. Cotton will be in England when we do the next surgery (May 22), so he said someone else can do it, which is another change when we scheduled it over the phone.  Then he told his schedulers that he needed to be the one to do it.  Rescheduling wouldn't be a big deal, if it hadn't been for her missing her last days of school, but in the big scheme of things it will all work out fine.  I am planning to throw an end of year /welcome back Faith party and invite all the first graders (really just a park gathering with a big cake!)

Anyway, Dr. Cotton did a bronchoscopy and then came out and spoke to me, showed me pictures of her airway, the tonsils, her trachea and the top of the bronchi (where the two branches of the lungs split off at the top).  He said her airway looks very good, no issues other than her jaw.   So they will plan to remove her tonsils and do a scope through her nose to look at her adenoids to decide whether to remove those as well.

Once Dr. Cotton completed his part then Dr. Gordon started working on her jaw.  First he took off the metal plate that was connecting her original jaw with the new scapula bone they added last summer and he said it has healed really well. Then he decided where to make the cut on each side. On her left, where they did the graft, he cut in front of that on her original jaw bone, on her right side which was not missing any bone, he cut further back starting in the ramus bone and going through the mandible bone.  It's hard to explain in writing, but it's called a saggital split, in other words, instead of just cutting the bone straight across the bone, it's a length-wise cut, giving much more surface for new bone to grow.  Think of it like putting the palms of your hands together then then sliding one forward and one backward, compared to just your fingertips meeting and then being pulled apart.

After making the cuts, I think he put a wire through the front of her jaw, across the chin and that wire comes out of jaw through the skin and attaches to the purple halo device, called a Rigid Extraction Device (RED) which is screwed up against her head (not into the skin/skull, just pressing against the sides of her head).  So this is completely different than his traditional external jaw distraction or the internal distractors she had when she was 2.  There are no actual pins, just this wire tied to the RED device and anchored to the front of her jaw.  We turn two screws on the RED device that shorten the wires, which pulls her jaw forward a milimeter each time we turn it.  We have to turn the pins twice a day, so about 10mm/1cm every 5 days.  I think we will be turning for about 3 weeks and then we stop and let it consolidate for aother week or so.

I turned the pins last night and again this morning which didn't seem to bother Faith.  It will probably get a little more painful as she heals from the surgery itself and as the skin and soft tissue around the jaw becomes more stretched out.  This is one of the things I hate about Dr. Gordon's distractions - they end up looking like the character from the Scream movie and apparently thats what they tell parents nowadays!

We switched Faith from Morphine to Oxycoton (sp?) this morning, which is given orally (or through the G-tube in Faith's case) and not the IV so they were able to disconnect her IV tubing which means she is able to get out of bed a lot more easily to go to the bathroom.  She's been getting out of bed since yesterday evening to do that and it was a pain having to disconnect her from the pulse ox and the leads for heart monitor and her feeding tube and then unplug the power to the IV pole, and maneuver that around the bed and bathroom door that were too close together, oh and help Faith get out of bed and give her a hand in case she felt wobbly.  We still have to disconnect the pulse ox and heart monitor, but just not have the pole to deal with was a big improvement!  Faith is doing well sitting up and getting in and out of bed by herself now, but she still can't use her left arm because they won't actually take her IV out until we are ready to be discharged tomorrow.  I'm guessing we could have gone "home" today, but it's good to have one more night to have more time to ask questions and have access to any supplies we need.  The other big challenge is that I'm having to suction her every 15 mins or so, and it's very tiring!  They have her bed low so she can get in and out of it easily but that means I'm bending over a lot to suction and my back is aching!!  I've also gone through dozens of suction catheters, maybe a hundred by now!  And since we almost never suction her at home, we definitely didn't pack enough to get through the rest of the weekend at the Ronald McDonald House if this keeps up!

Faith is doing pretty well overall, not talking but trying to sign and is using more of her finger spelling for signs she doesn't know or remember anymore.  I think she'll start trying to talk soon, although it might be even harder to understand her right now.

Well that's about it for now.  It's taken me almost 5 hours to write this as I've had to stop and suction or help Faith get out of bed to go to the bathroom, or talk with the residents or nurses.  Being in the hospital is hard work!!  Looking forward to being back at the Ronald McDonald House tomorrow night.  I'll try to post some more pictures soon after we try to clean up some of the dried blood on her chin.

Thanks to everyone for reading, posting comments, sending emails and all the good thoughts and prayers, we really appreciate it.

Day at the Cincinnati Zoo

This was Faith's favorite animal at the zoo, the Cheetah.  They do a wonderful show running two Cheetahs.  This is the older one, Sarah.

The Zoo is also the Botanical Gardens here, and the tulips were in full bloom everywhere, gorgeous!

Faith measuring her wingspan, almost 4 feet!

A Cincinnati Bengal Tiger!  Roar!

Zoo Pictures

Off to the Cincinnati Zoo!

We made it to the Ronald McDonald House!

We got here safe and had some fun tonight checking out the house and playground and of course saying hi to Ronald! Hope you can watch this video!

On our way!

Faith sleeping on the airplane to Dayton, OH.

It's Finally Here - Cincinnati Trip

I don't know why it's taken me so long to post, maybe I just didn't want to say anything again until it was definite, or we were just busy, but that's always the case for everybody, isn't it?

Faith's surgery is happening this week, it was delayed from last week to this week because the ENT surgeon who is doing her tonsillectomy was not available on the 18th, so everything moved out a week.  So, we fly out tomorrow, into Dayton OH, the hospitall shuttle will pick us up and take us to the Ronald McDonald House which we got into for both before and after the hospital stay.

Surgery is Wednesday where they will do the jaw distraction and a tonsillectomy & adenoidectomy. Then she will be in the hospital for 2 nights and then we go back to the Ronald McDonald House for about 4 days and fly home on Monday, 4/29.

Faith is mostly excited about it and a little nervous at the same time.  I will see if we can get some tickets to do something fun on Tuesday, before the big day, maybe the zoo or maybe another Cincinnati Reds baseball game.

I will plan to post some "before" pictures tomorrow/Tuesday if I can.

The one thing I've been pretty bummed about since it was rescheduled is that Faith's last surgery is now on her last day of school, which means she will miss everything from now until school is out.  So, her last day of school was this past Wednesday - we took her out a week before the surgery so we could keep her healthy.

Her class held a little party for her and she brought home about a dozen beautiful cards wishing her well.  It was super sweet.  She loved them all, but especially the card from a boy in her Deaf Hard of Hearing class who she says is her boyfriend!!  I won't say his name here since I'm not sure if he knows he's her boyfriend!!

Last weekend we were in Branson Missouri for Fred's niece's wedding, which was so beautiful and a great little family reunion for all the Kargoll's.  Everyone was there and it was a really nice time.  Faith especially enjoyed getting swung all around by her cousin Ian who is a gymnist and coach and loved picking her up and throwing her around!! It was actually the first time they had met  as Ian lives in Alaska and we haven't seen him in many years!!

Lauren brought Carly (now 3yrs old) and Dana and Aaron brought baby Hallie and Ryan came as well, so we had a total of 10 in our traveling group!  We had so much fun, plus two slightly scary pool incidents.  The first one was with little Carly who is taking swimming lessons now and is quite comfortable in the water, but not tall enough to stand in the 3 foot section, so she was mostly playing on the stairs and then started holding on to the edge of the pool and walking around the edge of the 3 ft section.  I had been playing with her in the pool and then I left her on the stairs (about 5 feet from where Lauren was sitting outside the pool) and I took Faith for a ride into the 5ft end of the pool.  So, next thing I saw was Carly kinda floating on her back in a bit of a sitting position, but actually sinking just a couple feet away from the stairs.  There was no way I could get over to her quickly especially with Faith in my arms, but luckily both Lauren and Fred jumped up and Fred jumped in quick and grabbed her before she really went under.  She was just staring at Fred with these big eyes and just starting to get scared.  She was fine and all was well.  The next day though, I let Anthony and Faith go swimming again, but I didn't get in.  Faith is tall enough now to stand in the 3 ft end with the water just up to her armpits so it's fine for her trach.  But she decided to play with a litttle blow-up float and was trying to sit on it.  I told her she had to stay by the stairs and hold onto the railing because of course the float would pop out from under her and she could fall under water.  Becasue of her trach this could immediately drown her since  the water could just flow right into her lungs.  And then it happened.  She got a foot or so away from the stairs (basically the same exact spot where Carly started sinking) where she was playing with Anthony and the float when she went under.  I jumped up and ran to the edge of the pool yelling for Anthony to grab her which he did without any hesitation and then I was able to lift her out of the pool.  Amazingly, it appeared that she didn't have any water.  I really can't explain how no water went down her trach tube, it doesn't make any sense to me, I thought for sure she would need to go to the hospital but she was perfectly fine.  Justt coughed a couple drops out of her trach! Anthony was so fast in grabbing her and lifting her up, he was a hero!  Grandma and Grandpa were sitting with me at the pool when it happened and they told him how proud they were of him and he was so modest about it -- he said, "I'm a cub scout almost a boy scout and that is just what we do."  How cool.  I told his den leader about it and he suggested we write a story about it and submit it to the Boy's Life magazine, so I need to help him do that.

Well, as usual, when I finally find time to write, it turns into a book!!  We have to run to the store  now to finish getting ready for our trip, so I have to sign off now.

Love you all,
Robin

Surgery had to be Rescheduled

We were supposed to fly to Cincinnati this morning, but unfortunately when I talked to one of the nurses at Cincinnati Children's yesterday about Faith's cold, they called the anesthesiologists and they said they would not put her under and that they wanted to wait 4-6 weeks following a respiratory cold.  We were so bummed out as she seemed to have bounced back so quickly from this bug - fever was down for a few days and she was sleeping through the nights again without coughing or needing any suctioning.

It was especially tough after having prepared her school friends for her being gone for 6-8 weeks and now she will go back to school tomorrow!  I'm sure they will understand, but it might be a bit confusing at first.

I just got off the phone with Dr. Gordon's scheduling assistant, Denise, who I talk to pretty frequently when we are planning these things.  I really like talking to her, she always fills me in on some gossip about Dr. G! :)
And she is very easy to work with.  So, we have new dates....

April 18th - Jaw Distraction, Tonsillectomy and Adenoidectomy
May 16th - Chin Advancement
May 22nd - Removal of Hardware

The good part of this is that we were able to schedule her 2nd and 3rd surgeries just a week apart so we can stay for the week instead of having to fly out twice or have a local surgeon here in Denver do the final surgery.

If all these dates actually hold and no issues arise (we have to be open to that as you can see, things are rarely in our control!) this also means Faith will be done and home in time to go to school for the last 3 days of the school year!   They get out pretty early here in Denver, their last day of school is May 29th this year, we also start earlier, usually by mid-August.

So, here's hoping these new dates all work out.  It's a bit crazy -- we will actually go to Branson, MO on April 10th (or 11th? I have to check our flight reservations again) for Meghan's wedding on Saturday, the 13th, and then we drive back up to KC to fly home on Monday the 15th.  I'm think I might just see if Faith and I can fly to Cincinnati from there instead of going home first.

Okay, well I need to call Southwest now and see what they will do for me with our tickets.

More soon,
Robin

Pinewood Derby Races

Cub Scouts Pinewood Derby Race

Anthony's Cub Scouts Pack had their pinewood derby race this weekend and both Anthony and Faith built cars to race.  Anthony was not too excited about it at first, but he did pick out a complicated design (a lightening bolt) and after I cut the wood he helped to decorate it and put the weights on it.  We didn't do much in the way of performance testing and tuning, so we were all very excited when Anthony won 3rd place!!

 Anthony's car was the fastest in a 
couple of heats, with a average time of 2.932 seconds!  

Here's one of the races that he won...

Faith had so much fun making her derby car, which was a boat with 

Patrick (from SpongeBob) in it.  Unfortunately we were late 

getting back for Faith's race and missed it completely, 

although that might have been good since she came in last place 

(I think Patrick was a bit of a wind drag and I

 heard her car got stuck on the track a couple times!)

Anthony and Faith with their cars and his trophy

Surgery Decision Tomorrow

Faith seems to be mostly better - her fever is gone, and certainly well enough that we would send her back to school, but she's still coughing during the day a bit and I would like to have either the pediatrician or her pulmonologist listen to her lungs and let us know whether they think she's cleared up.  I've listened with my stethoscope at home and can't hear anything, but I didn't check it the day they said they could hear stuff.  Wish I did so I would know how obvious it was and how much it's improved. 

Can't believe we are this close to these plans and just can't be sure yet whether it's a go or not.  I would feel better about getting on a plane on Tuesday if the docs here think she sounds good.  And I'll give the surgeon's office another call and let them know and make sure that is enough for them.   I know there will still be a chance they could change their minds if we get there and she sounds worse, but I just hate the thought of spending $400 on airfare and be told we shouldn't have come!

I will definitely post an update tomorrow night to let you know what the final decision whether we get on the plane on Tuesday!

Robin

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