Spawn of Bon

Happy 5th Birthday Faith ❤️❤️❤️❤️ 5 Rocks 🤘😎🤘! 
https://fb.watch/pA_Adxlh-W/?

Happy 5th Birthday Faith ❤️❤️❤️❤️ 5 Rocks 🤘😎🤘! 
https://fb.watch/pA_Adxlh-W/?

She's sweet enough to be the very best Faith Who!

Saw her patiently trolling around Walmart with her Mommy and Daddy shopping.  She was so calm till her Mommy picked her up and started loving on her.  She went wild loving back.  Merry Christmas.  Hubby and I got a gift that night! Thank you for sharing her with all of us.

And here’s how she REALLY felt about our photo session 😂

Faiths Make A wish interview at Sunny 106! 
📸 Watch this video on Facebook https://www.facebook.com/share/v/ZgGmsmBR7Hoz5jYL/?mibextid=KsPBc6

Here’s a few pics we started with for Christmas this year!

And here’s how she REALLY felt about our photo session 😂

Happy Thanksgiving!
Happy Thanksgiving from our Faith!❤️
She may look a little tired but she is So thankful for all the visitors and love she received today ❤️

Happy Thanksgiving!
Happy Thanksgiving from our Faith!❤️
She may look a little tired but she is So thankful for all the visitors and love she received today ❤️

I’m adding visual aides to this and hoped that helps
We all have 2 kidneys, one left, one right, each has a Ureter (drainage tube) that leads from the kidney down to the bladder
Faith of course has to be different 🤦‍♀️😂
Faith has what’s called a “duplex” kidney on the right side
So her right kidney did not form correctly and she has “two” kidneys and 2 ureters
Think of conjoined twins
This next pic looks close to what Faith’s kidney looks like on the right side
Her left kidney is perfectly normal by the way
As you can see there is an upper and lower kidney and each kidney section has its own ureter
The lower kidney is the “duplex” 
The upper kidney is perfectly normal and functioning well
The lower kidney is the one that had the 2cm stone in it
The issue she has now is that there is urine trapped inside that lower kidney and causing the kidney to be inflamed or “dilated”
What the MRI of her kidney showed is that the lower ureter is restricted or narrowed so much so that it’s not allowing urine to pass from the lower kidney to the bladder 
It’s “obstructed”
That narrowing and the trapped urine is what is causing stone formation and is also a big reason why she gets UTIs
Think of stagnant water
No water flow, allows for stagnant water and sediment to build up 
If that helps
So
Faith needs another surgery
They want to do a Pyeloplasty
Which basically means
They want to cut out the “obstructed” segment of the lower ureter and reconnect it with a stent
The stent will then be removed about a month or so later
Dr. Tasian feels extremely confident that this can be done At Pittsburgh and Dr Cannon her new urologist (since June) is willing to do it
We are also waiting until after the holidays to do this

great now I have 3 ways for updates 

https://fb.watch/ojtK2vMW-m/

If that doesn't make you cry, then what would? 

Where do I begin
Well all I can say is this … The kidney saga continues 🤦‍♀️
We’ve been quiet because we didn’t want to post without knowing the answers
We still don’t 
The kidney that Faith had the 2cm kidney stone removed from (the right kidney) is not better 
It is now dilated which means it’s swelled and has urine backed up in it…. Hydronephrosis…
We’ve had some tests done to see if it was another stone
It’s not
It may possibly be a complication from the surgery like a build up of scar tissue where the ureter meets the kidney….
To complicate things even more her bladder is also a complex case…here’s a mouthful for you….
A neurogenic trabeculated bladder with diverticuli 
Which means the bladder is not emptying completely, the walls are thickened and she has out pouchings all over her bladder from the excessive internal pressure 
We don’t know why
Possibly a mix of her Edward’s Syndrome (trisomy 18) and also her history of chronic utis and the septic infections
So we have been working with both Children’s in Pittsburgh Urology as well as continuing with Children’s in Philadelphia Nephrology to see what’s what and why and more tests
Faith is okay overall, we’ve had to add some extra things in her routine to manage her symptoms such as intermittent cathing, prevention of further UTIs and a very close eye on any UTIs that may be brewing
We have a couple of tests here in the next month at both hospitals and hopefully the combined findings from these tests can get us answers
We’ve had to be diligent and we have to continue to do so because these two issues can cause kidney damage and that’s a huge issue that we would very much want to avoid. 
We are praying for answers, we are praying for action, we are praying for healing
And also Faith is learning a teeny tiny bit of sign language…her favorite sign is “Love” she wanted to tell you all she loves you ❤️ (first pic)

Where do I begin
Well all I can say is this … The kidney saga continues 🤦‍♀️
We’ve been quiet because we didn’t want to post without knowing the answers
We still don’t 
The kidney that Faith had the 2cm kidney stone removed from (the right kidney) is not better 
It is now dilated which means it’s swelled and has urine backed up in it…. Hydronephrosis…
We’ve had some tests done to see if it was another stone
It’s not
It may possibly be a complication from the surgery like a build up of scar tissue where the ureter meets the kidney….
To complicate things even more her bladder is also a complex case…here’s a mouthful for you….
A neurogenic trabeculated bladder with diverticuli 
Which means the bladder is not emptying completely, the walls are thickened and she has out pouchings all over her bladder from the excessive internal pressure 
We don’t know why
Possibly a mix of her Edward’s Syndrome (trisomy 18) and also her history of chronic utis and the septic infections
So we have been working with both Children’s in Pittsburgh Urology as well as continuing with Children’s in Philadelphia Nephrology to see what’s what and why and more tests
Faith is okay overall, we’ve had to add some extra things in her routine to manage her symptoms such as intermittent cathing, prevention of further UTIs and a very close eye on any UTIs that may be brewing
We have a couple of tests here in the next month at both hospitals and hopefully the combined findings from these tests can get us answers
We’ve had to be diligent and we have to continue to do so because these two issues can cause kidney damage and that’s a huge issue that we would very much want to avoid. 
We are praying for answers, we are praying for action, we are praying for healing
And also Faith is learning a teeny tiny bit of sign language…her favorite sign is “Love” she wanted to tell you all she loves you ❤️ (first pic)

It's Faith's problem, no one else's and everyone should be fighting for the chance to take care of her instead of worrying about their own butts which probably work just fine!!!    I stand whole heartedly behind the people at Johns Hopkins.  They could not have been better to me.

basically they said that it’s a complication from the surgery she had in Philly so therefore it’s there problem so I wait till Monday to talk with CHOP (Philly)
 
that sounds like total bull s%^t to me....I know they are a childrens hospt but they dont have to act like a mad child

Oooo how I wish I could post videos on here 😭 
anyway….Faith was also referred to Make A Wish by her oncologist and social worker and she was approved, so Peanut wished for a swing set so she could play outside and spend time with her family and friends outside too ❤️ that’s her Papa Rick (Deryk’s dad) in the pics with peanut and me

She needs a heated greenhouse so she can go outside in the winter and soak up some rays every day!

No offers on Peanut, except to babysit anytime, if needed. Many people finally got to meet her in person for the first time this past weekend. Faith Marie was on the screened in front porch with us most of Friday. Saturday & Sunday was really slow business days, but we still did good.
Brandi & Deryk did have several people ask if they wanted to sell Milo!! Sorry, but no, he will be their daughters service dog when he is around 3. He is just a puppy at 1 1/2 yrs old & wants to be friends with everyone & you to throw his toy for him to chase & repeat!!
Midgy made new friends with everyone. She had to bark every time someone stopped & wouldn’t leave the person alone till they bent down & pet her. She’s a happy wiener most often .   

Happy 4th of July everyone!

Happy 4th of July everyone!