The Parris Family...

A few months ago I wrote a post on the Parris Family that we had met over the phone who is from our home town in Orlando, FL.  Well, when we were on vacation we had the honor to meet with the Parris Family for dinner and an added bonus we got to meet baby Wrenn.  What an honor it was to see her and meet them.  What  a truly amazing family they are.  I will be honest and say it brought all of those memories back to life yet again.  Although on a flip side it made me realize more than I have thought how truly blessed in where we are today.  It was a good meeting for both of us.  I hope they find comfort in knowing they are not alone.  I keep reminding them, that they are not alone, as we were.  To remind you, this is the story I had posted awhile ago.  I have more pictures of the meet but I have no idea how to download all of them.  Please keep baby Wrenn in your thoughts as she will be traveling by jet from Orlando, FL to St. Louis, MO to get evaluated for a double lung transplant tomorrow, July 22, 2010.  The jet ride has many risks for her and she is very ill right now.  She is currently on a vent now and it on very high settings.  We hope that all goes smoothly and will update as soon as we know more.  If you would like to read more please visit her blog that is mentioned at the bottom of this post.  Thanks for checking in as always.

SIMILARITIES BEYOND BELIEF...

I had to share this amazing story with you all.  As many of you know I have started an organization called "Fay's Friends" to help other transplant families.  The day we left St. Louis from Faybree's 2 year check up I received an email on my blackberry from my Fay's Friends account from the Chaplin at Winnie and Arnold Palmer Hospital in Orlando, FL.  The email stated that there is a family that has a little girl in the NICU at Winnie Palmer who might have the same diagnosis as Faybree and it also mentioned that home for this family is Chesterfield, VA. I soon was confused when she said that as this is where we live now and this family is in Orlando, FL at Winnie Palmer.  I called Chaplin Gail right away as we know Gail very well, not to mention we know the importance of wanting to talk to someone who has gone through this.  Chaplin Gail is the one who baptised Faybree and Peanut and goes to church with Peanut's Nanny and our Pediatrician in Orlando (small world).  As soon as I spoke to Gail she explained that this family is originally from Chesterfield, VA and is in the midst of moving back there.  I told Gail to give the family my name and number and for them to call me anytime as I was on the road for the remainder of the night.  Gail told me that is was just so crazy that she was the one who met them because she was the only Chaplin on call that day and Gail was the only one who knew of Faybree over at Winnie Palmer Hospital. Faybree was born there, but she was healthy.  It was almost like god had Gail line our two families up.  It is truly fate.  She did show the family now established as "The Parris Family" our Fay's Friend website and told them all about Faybree and how it all seems so familiar.  Not only that, Gail said that the Parris Family asked if she would baptise both the baby girl "now known as baby Wrenn" and the father "now known as Jason".  Gail said she couldn't believe it because she did that for us.  The similarities you won't believe go on and on between our families.  So later that night the mother of Wrenn called me around 10pm.  Wrenn's mom's name is get this...NICOLE.  I spoke to Nicole as best as I could because I kept loosing reception going in and out of the mountains.  Needless to say I have been speaking to the Parris Family often and waiting for the proper diagnosis on baby Wrenn.  They finally found out in what they have been anxiously waiting for and hoping for the best, but the results came back that she has ABCA-3 like Faybree.  Baby Wrenn will need a double lung transplant and they too are hoping that the hands of St. Louis Children's Hospital will care for her.  You have no idea how much I have been thinking of this family  We have so much in common that I told them I felt like when I finally meet them, that I will be walking up to myself.  Here are a list of some of the similarities

-Both Wrenn and Faybre are GIRLS
-Both have ABCA-3
-Both mommies are named Nicole
-Both Nicole's are Methodist
-We both asked Chaplin Gail to baptise our daughters and fathers
-Their home town is Chesterfield, VA where we live now and they plan to move here when things settle down
-Both Wrenn and Faybree were born on the 14th
-The Parris Family have a son Tanner who is 17 days older than Faybre and both were born at the same hospital
-Jason (Wrenn's Dad) sister is named Mandy.  My sister is named Mandy (although family calls her that, but her friends call her Amanda).
-They live in our home town and share the same doctors

I am sure there are more similarities but these are just a few that are just "beyond belief".  My heart aches so bad for them.  When I talk to them, it brings me back to where they are.  Is is such a pain stacking time and you can't even think about what is going on in the outside world.  Yet on top of it the Parris Family has to take care of their son Tanner who is 2 years old.  I wish I could help them in some way.  I wish I could take it away as I know to well what they are going through.  All I can do is try to be there if they have questions.  I told them we are willing to do whatever they need us to do.  Please pray for them as they need prayers, strength and funds as well. 

Visit their blog that Nicole's friend Lisa put together.  It is a really nice blog.  You can follow their journey and make donations if you wish at:
http://www.fortheloveofwrenn.blogspot.com

Faybree's 2 year check up, Post Transplant update...

MOUNTAINS, More Mountains and farmland...

We finally arrived in St. Louis, MO

This is our scenic route to St. Louis from Virginia.  This was our first time driving from Virginia to St. Louis.  Wow, what a difference in the scenery from driving from FL.  It is a few hours shorter.  It is 14 hours vs. 17 hours.  We went through some beautiful mountains and several times lost reception on our phones.  That always makes me a little nervous.  We started the trip off with rainy weather.  We got to the top of this mountain and the fog was so thick that I couldn't barley see the car in front of me (I was driving at the time).  As I drove on through the fog it ended all of sudden into a ray of sunshine.  It was the oddest thing.  I felt like it might have been a sign for all good things to come on the trip. I was wrong in deed.  This trip to me felt very different. Maybe because we had the dog this time and we stayed at a different hotel.  Speaking of hotels, it was a mission to find a good hotel after we got there as the hotel we booked was not to our standards and I was not afraid to let them know. Needless to say 4 hotels later we found one thanks to Jordan's mom Lesa who told us that the hotel they were staying at excepts dogs and is a new hotel.  We are very picky when it comes to hotels for Faybree.  Jordan received a lung transplant a week or two after Faybree did.  She is now 19 years old.  Her family is very sweet.  I am so glad we went to their hotel because it worked out perfect.  We finally settled in and woke up the next morning for a long day at the hospital.  We went to clinic at 8:30am to see Faybree's pulmonary doctor Dr. Sweet for him to see how Faybree was doing.  Everyone couldn't believe how big Faybree has gotten.  She for sure has gone through a growing spurt.  She is 31-1/2 inches tall and is in between 22 lbs and 23 lbs.  Depends on the day I guess.  They all kept saying how great she looks.  I have to be honest and say she always looks good and you would never know what she has been through.  I will say when we go to St. Louis it is always a REALITY check.  It always brings me down and gets me worried sick again.  It makes you aware of all the things you try not to worry about.  If you knew all the things I knew (and I still don't know even half of it), you all would be amazed and scared at the same time.  You really have to have a mind set not to take it all in and worry your self sick.  That is why I am so glad I have Peanut because he is like that.  Almost to much though.  He doesn't worry much about anything.  He says he doesn't worry about it until he needs too.  Very much like we were talking to Dr. Sweet about a medication that Faybree is on and I asked it we should look into giving her a higher dose due to her rejection so early on.  He said to us that we have to be careful with that particular medicine because the long term affect is it will destroy her kidney's and not to be alarmed that in 10 plus years we might be having a conversation of a kidney transplant.  I knew this from the beginning but to have the conversation again was again a reality check.  This isn't to say this is certain, but it can happen.  We also spoke to him about the graph vs. host disease (skin disease), he felt confident that she does NOT have this but wanted us to see their dermatologist while we were there to see what she says.  While we were in clinic, Laura her nurse accessed her port for the week for all of her procedures to be done and also took blood work to see where all of her levels are.  After clinic we went to physical therapy.  It is always good to see Rebecca.  She is so good with Faybree.  They played ball.  She had a small ball and a large ball and Faybree was trying all her tricks.  She kicked the ball, threw the ball, but wouldn't catch the ball. She was interested in the big ball that was the size of her in pushing it but she hated to sit on it.  She seems to have a little phobia about sitting on somethings.  Its weird. Anyways, she said she is doing awesome and the fact that she is galloping already is impressive for her age.  YEAH!!!  That was awesome to hear!  Then we were off to the hotel to take the dog out before her next appointment.  Let me just tell you that Faybree was not allowed to eat past midnight or drink clear liquids past 10am.  She got to drink in clinic, thank goodness but she really wanted her milk. She kept asking for it.  Especially when we were in therapy.  As we got back to the hotel for a quick pit stop her craving for her milk got so bad that she was screaming and crying.  The piercing scream was hurting Peanut's ears.  It was kind of funny.  I took a video with my phone so she can see when she gets older what she did.  She made her self so upset that she feel asleep.  We felt horrible as parents not to be able to give her what she wanted.  We had to wake her back up to take her back to the hospital for all of her tests that they have to do as a routine (they have to put her under for all these tests and it takes about 3 to 4 hours to get them all done).  There she kept asking for milk too.  They actually gave her the medicine through her port to put her to sleep.  I was holding her in my arms as she is now at the age where she wants her mommy all the time (I love this, I am not going to lie).  It is always so hard when they have to do this as she goes completely limp in my arms, but at least I know she can't remember leaving me.  I just hate that she has to go through all of this.  All in all, all the tests went well and all the results came out well.  No changes!!!  We thought for certain we were going to have a good bronch the next day.

The next day came and we got a call at 6am stating that Dr. Huddleston who does her bronch and also did Faybree's double lung transplant was in surgery doing a transplant that we were to wait on coming in.  I was so happy for that family who was receiving the special gift of life as we know that all to well, but I was also thinking how I felt horrible for the nurses who were going to have to take care of a hungry baby again.  I knew this could be tough on Faybree again.  Thank goodness we spoke to the hospital and Dr. Huddleston agreed to do Faybree's bronch right before the transplant began.  He is so good to us.  We got to the hospital only an hour after we were suppose to be there and Faybree did want her milk and kept asking everyone that walked in the room.  I think she thought if she asked everyone that someone would give in.  It was so funny.  Another thing that Faybree did was she kept giving kisses to everyone.  She has so much love to share.  It was so cute to see.  She was sure to tell them too when she was "ALL DONE" with stuff as well.  So the anesthesiologist allowed me to gown up from head to toe and come back to the operating room where they were going to preform the bronch (as it is a sterile environment back there) and hold Faybree until they put her under.  Once again she was crying and holding onto me.  They gave her two kinds of medicines to ease the separation and for the actual procedure.  Poor Faybree went limp again in my arms and two nurses took her and laid her down. I hate to see Faybree's eyes get all lost and her who body feels like dead weight, but I much rather be there when she goes through that than not.  I want to be the last person she see's before she goes through anything.  That was super nice of them to allow me to do this as they knew we wouldn't be able to separate well.  She loves her mommy, yet she is a daddy's girl too.  Dr. Huddelston said that everything went well and she looked great and he also said that there looked like there was no rejection to his eyes. I replied to him that i hoped he had great vision.  He laughed.  Recovery was the toughest for Faybree this time. We required a little oxygen after the procedure (just room air blowing on her), which isn't unusual, but she has it for about a hour or two after wards.  We think that she received too much medicine.  They gave her three kinds of medicines that snowed her under.  She could barely wake up to take her bottle.  This can cause her to get comfortable and not breath as well.  We still ended up leaving with her saturation's at 95, which is still not bad.  She was still a little sleepy and out of it.  Her body was still dead weight just about. As soon as we got in the car and was in the car for 10 minutes she was her normal self.  I think she just hated that hospital. lol lol While we were there we did get to see Nae Nae and catch up with her.  It is always so wonderful to see her.  She is so sweet to take the time out of her busy schedule from the NICU to see us.  She also was so sweet and delivered the first Fay's Friend bag to a family waiting for a transplant.  We hope to hear from them, but they do not have to contact us if they don't want to.  Nae Nae also couldn't believe how big Faybree has gotten.

So the results that I was so nevous to recieve....

Faybree is STILL in rejection. She is A1 (there are three levels).  A1 they do not treat and hopes that her medicines she is on for rejection will take care of it.  I stated that last time we left in October she was also A1 and the medication has obviously not taken care of it so what are we going to do differently.  The response was NOTHING.  So we hope that this time the medicine will really take care of it.  From my understanding she can always be A1 and that is fine.  Not the greatest but not the worst.  To our surprise she is also B2.  There are two ratings. A is for rejection and B is for inflammation of the lungs.  B has 4 levels.  So a B2 is minimum inflammation.  Faybree has always been B zero so it was another SHOCK to say the least.  With this being said the inflammation can be caused by several things.  I am not going to list them all but that is why they do the bronch to test for this.  All of her test have come back negative, but there is one test that can take up to 4 weeks to grow anything out.  As of now, everything is still negative so they are not sure what the cause is.  This is always frustrating because I like to know what it can be.  They said it can not be caused by the rejection.  I asked if it could be from allergies and they felt that allergies wouldn't go that far into the lungs to cause inflammation.  So right now they are treating her with a antibiotic that treats for infection as well as inflammation.  We are to keep an eye on her to make sure she doesn't show any signs of being sick as this will tell us that the medicine has not worked.  Not to mention her IVIG levels are very low.  Faybree receives a monthly infusion to help boost her immune system and her levels are VERY low meaning she is even more acceptable to getting sick so we need to be extra cautious of this as if we are not already.  So we shall see. I guess the check up could have been worse and I try not to be Debbie Downer as it is the reality of it all, but I just wish we could go there and get a good review.  She looks so healthy and seems so healthy but when we get there all we get is bad news.  I just don't understand it.  The doctor said that they feel they got lucky and got the rejection soon enough where she wasn't showing any signs but if they hadn't of caught it by the bronch then she would have eventually shown signs.  YIKES!!!

While we were there we got to spend two nights with Kristin.  She came to the hotel to spend time with us and made Faybree a huge pan full of rice krispie treats and made me one of my favorite no bake cookies.  She is so good to us.  She also bought her this amazing sign with this sweet saying on it that i will post pictures of.  It couldn't be more perfect.  It is always so sad to leave her as she has become such an important part of or lives.

So Thursday came and we went to the dermatologist and it was a very fast appointment.  I felt like I didn't get to ask all my questions but the biggest question was answered and she feels she does not have graph vs. host.  Like everyone else says, yes it is possible but very very small.  I am still a little weary of it all.  She for sure has eczema (which we knew) and she told us how she would treat it.  Very differently than most have told us but we will try it.  Poor Faybree broke out really bad on the was to st. louis in the car and I discovered that she does this every time we go there.  I came to the conclusion that it is due to stress.  As the days went on the rash went away and of course her skin looked awesome when we went to see the dermatlogist.  After that appointment we were cleared to go home.  We flew back to the hotel and paked up so we could drive half way home that night.  We thought the stress on Faybree was too much for her so we decided to brake the trip up since it took us about 14 hours.  We rushed out of the hotel and with so much on my mind about Faybree I left behind her charger for her dvd player and my charger for my phone.  I called to get it mailed.  The trip that night wasn't bad at all.  We got to the hotel half way there and it was SUPER nice.  I wish we had that hotel in St. Louis.  Oh well.  The next day we drove the rest home and you could tell Faybree was so done with the trip as I was too.  She started to fuss so I was giving her anything and everything I could to calm her down.  I gave her the camera which she loves and I forgot that I gave her that to play with until later when Peanut asked to see the camera after we turned in the rental car and I looked all over for it and came to the conclusion that the camera must have been left in the car that we already turned in.  I sure hope it is there. Peanut went to look this morning.  Yeah, they had it, so check out the pics. This goes to show you that  I have forgotten 3 things because I have way to much on my mind.  Well, I think this post is long enough. 

Thank you all so much for the constant prayers. This is what has gotten us through all of this.  I am thankful what the lord has given us, but I will be honest and say I am still sad by it all too.  I look at the positive and always say it can and could be worse, so with that I am always so thankful!  As always thanks for checking in.

Are you creative, artistic and have great design ideas? Fay's Friends is assembling our recipes and stories for our premiere Cookbook, to benefit families undergoing transplants, and is having a contest open to fans and friends to design the cover! The winner will receive a free cookbook and Fay's Friends signature apron and their design will be printed on the cover. This is a great opportunity to show your creativity for a good cause!

We politely ask that your name or business not be a part of the cover design. The cover can be in color or black and white, and you can chose any medium. The design must be an original, no copyright artwork will be accepted.

All entries must be received by midnight on May 23rd! Fair judging will be done by the Fay's Friends' Board Members in May. Fay's Friends are to submit their entries for the cover to info@faysfriends.com, or by mail to: Nicole Neufeld, PO Box 4814, Midlothian, VA 23112. Please include your name, email address and telephone number with your submission so we can contact you to confirm your entry.

If you have any questions regarding what is recommended or not recommended in the way of the artwork, please contact Nicole Neufeld at info@faysfriends.com.

We are still asking for our fans and friends to submit recipes to be included in the cookbook. We’re hoping that this will be a collaborative effort and give a chance for everyone to contribute and be a part of the cookbook. We will have information about ordering the cookbooks after the contest.

Recommended guidelines for artwork: 

Sharp black ink drawings

Black and white line art using a quality laser printer

Digital photos saved as .JPG files at 300 dpi

Photoshop or Illustrator saved at 300 dpi

Do not submit:

Artwork with screens or grays

Color laser, dot matrix or ink jet printouts

Pencil drawings

Newspaper/magazine photos

Ink jet or laser printed photos

Copyrighted photos or artwork

The design must incorporate the Fay's Friends' logo somewhere within the design. You don’t need to draw it, just draw a square and indicate that this is where you want the logo to appear and we’ll make sure that it is added to the final design.

Thanks and good luck to all of our Fay's Friends!