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!