To Kidney - and BEYOND! MAW PTP

[mxkris]

Beautiful boys! Where are you located in North ATL? I'm from Kennesaw but living in Dallas (GA) right now! Can't wait to follow you PTR and hope you get your call soon!!!

 

[carebearkidney]

Your family is beautiful!

Thank you!

 

[carebearkidney]

Beautiful boys! Where are you located in North ATL? I'm from Kennesaw but living in Dallas (GA) right now! Can't wait to follow you PTR and hope you get your call soon!!!

Thank you!
We are technically located in White - to which everyone we tell just tilts their head and say "where"? So, then we just say Cartersville. Pretty close to you! I graduated from Etowah High school in Woodstock - born and raised a Georgia peach.

AND - we just got called THIS EVENING! We were heading out to Dairy Queen for our Children's Miracle Network Blizzards, when we got the call. We meet our wish granters Aug 18th!!!

 

[dmoore718]

Beautiful Family!!! I have a miracle baby too. She was blessed with lots and lots of life saving blood at birth, and after 3 weeks in NICU, and weighing only 4 lbs..she is now a 40 lb, almost 3 year old. These kids are resilient and your little guy has been through more than most. God bless him and I hope you all have a MAGICAL trip....I can't wait to hear all about it!!

 

[carebearkidney]

Yay for our fighting miracle babies!
Matthew has had at least 50+ blood transfusions. Needless to say, we are a family of registered blood donors - well we are registered EVERYTHING donors actually! Gotta pay it forward! Be a hero, be a donor!

 

[maroo]

Yay for our fighting miracle babies!
Matthew has had at least 50+ blood transfusions. Needless to say, we are a family of registered blood donors - well we are registered EVERYTHING donors actually! Gotta pay it forward! Be a hero, be a donor!

This is so true!!

We need more and more blood at our office, too - because the drugs that we used to use to maintain blood counts are now flagged for safety by the FDA - so more and more people need blood!

for getting the word out!!

 

[carebearkidney]

This is so true!!

We need more and more blood at our office, too - because the drugs that we used to use to maintain blood counts are now flagged for safety by the FDA - so more and more people need blood!

for getting the word out!!

Thanks! You just never really think of these things until your life revolves around it. I'm a HUGE advocate for organ and tissue donation (and yes, blood is a type of tissue) My husband works as a park ranger and we host two blood drives a year at his office in "hope for Matthew and in honor of his donor, Marie".

 

[mxkris]

So very cool! I work at a daycare FULL of miracle babies so they have a special place in my heart! It's a daycare for medically fragile children. (Kids/babies with tube feedings, trachs, pic lines.. anything that involves nursing care that would keep them from attending a regular daycare.)

So cool how you were going out for the blizzards when the call came! Talk about Karma! I can't wait to hear more details!

And I know right where Etowah is! I used to keep my horse at a barn in Woodstock! "It's a Small World!!"

 

[carebearkidney]

So very cool! I work at a daycare FULL of miracle babies so they have a special place in my heart! It's a daycare for medically fragile children. (Kids/babies with tube feedings, trachs, pic lines.. anything that involves nursing care that would keep them from attending a regular daycare.)

So cool how you were going out for the blizzards when the call came! Talk about Karma! I can't wait to hear more details!

And I know right where Etowah is! I used to keep my horse at a barn in Woodstock! "It's a Small World!!"

Wow! is it in Paulding or Cobb? I would LOVE to work there! I can access ports and IVs, cath for urine and pop back in a gtube MicKey button faster than a snap.
I will be going back to school in September for my nursing degree. I already have an education degree, but now realize my true passion is helping families out a different way. i really want to get back to pediatric dialysis, but that is such a LONG commute to and from Atlanta with little ones at home. I'll probably wait til they are a bit older before working there and work closer to home for the time being.
And I do love we got the call on the way to Miracle Treat day at Diary Queen. We can't afford to eat out too much, but always "do it up" for the Miracle Network.
By the way, is it Aug 18th yet??

 

[mxkris]

Wow! is it in Paulding or Cobb? I would LOVE to work there! I can access ports and IVs, cath for urine and pop back in a gtube MicKey button faster than a snap.
I will be going back to school in September for my nursing degree. I already have an education degree, but now realize my true passion is helping families out a different way. i really want to get back to pediatric dialysis, but that is such a LONG commute to and from Atlanta with little ones at home. I'll probably wait til they are a bit older before working there and work closer to home for the time being.
And I do love we got the call on the way to Miracle Treat day at Diary Queen. We can't afford to eat out too much, but always "do it up" for the Miracle Network.
By the way, is it Aug 18th yet??

It's in Smyrna. Pediatria Healthcare for Kids. Yeah, we deal with MicKeys and NG Tubes! If you can Access a port and cath for urine your pretty much an RN! Our LPNs can't even do our dressing changes on our central lines and pic lines anymore, our RNs have to do it! That's so awesome that now you realize you want to go and be a nurse now!! I'm actually only a nurse's aide there. My degree's are in marketing and management!! My mom is a nurse at the center, that's how I got the job! I love it though, I was a nursing major at KSU but I changed my major after a year and a half when I couldn't get in the program.

 

[maroo]

Thanks for the reminder! I had unfortunately "wished" away my son's babyhood to get him the weight he needed to be for transplant and regret it SO much now. He was so sick and always in the hospital...having 2-3 surgeries a month sometimes and being hooked up to machines to keep him alive three times a week...I didn't take in the "normal" aspects of life. Cuddling on the couch, rocking in the rocking chair in the middle of the night, going for a walk - even if it was just at the hospital gardens. I was always so concerned with labs, procedures, weight, blood pressure, medicine schedules, therapies...sigh...pretty much the same stuff the majority of us are caught up in with our special warriors. I'll make sure I take a step back to take it all in

I have read this thread several times and every single time my eyes rolled right over this without seeing it!

I really can't imagine what it is like to have a child be so sick! I would imagine every single minute is full of thinking about the next thing and can totally see why any parent would not be able to really concentrate on the day-to-day!

Anyway...I just wanted to say that! Have fun with the planning! It really is one of the best things about a wish trip!

 

[carebearkidney]

It's in Smyrna. Pediatria Healthcare for Kids. Yeah, we deal with MicKeys and NG Tubes! If you can Access a port and cath for urine your pretty much an RN! Our LPNs can't even do our dressing changes on our central lines and pic lines anymore, our RNs have to do it! That's so awesome that now you realize you want to go and be a nurse now!! I'm actually only a nurse's aide there. My degree's are in marketing and management!! My mom is a nurse at the center, that's how I got the job! I love it though, I was a nursing major at KSU but I changed my major after a year and a half when I couldn't get in the program.

Yeah, we always joke that I'm a nurse in every way but degree. I've even taught newbie nurses on the transplant floor how to do things. I had my education degree from KSU, but originally had gone to school for nursing! I got in the program and worked at Kennestone hospital for two years, but soon found out I didn't really care for people to throw up on me... So I switched to science education. Now that I have kids, and one that threw up at least 4-5 times a day due to kidney disease...I think I can safely say I'm pretty immune to it now.

 

[carebearkidney]

I have read this thread several times and every single time my eyes rolled right over this without seeing it!

I really can't imagine what it is like to have a child be so sick! I would imagine every single minute is full of thinking about the next thing and can totally see why any parent would not be able to really concentrate on the day-to-day!

Anyway...I just wanted to say that! Have fun with the planning! It really is one of the best things about a wish trip!

Thanks for the hug I think I was in denial that he was so sick...just keeping my eyes on the prize of getting him to transplant. When he was diagnosed with congestive heart failure and labeled as "fading", I had my first BIG breakdown. We had spent 4 weeks out of 6 weeks (during Thanksgiving and Christmas) at the hospital on stroke watch. I actually realized he could die from this. He just looked so healthy on the outside, I never really thought about how unhealthy he was on the inside. His third Christmas was his first Christmas at home with the family. It was awesome!
I know transplant isn't a cure...that we will have to travel this road again... maybe next year, but next decade. But I will be prepared next time. I will take in everything, not just focus on the stuff that keeps him "alive", but to make sure he keeps on LIVING and loving life.

 

[carebearkidney]

Alright, so my birthday is coming up - yeah...
I usually just get some money from my parents and my in-laws and it goes to the "fix it" pile. Last year, it went to window screens - yeah, I know how to party it up for my birthday! This year, since Matthew will be getting attention and goodies from MAW, I wanted to be able to surprise his older brother, William, with something just for HIM. So we are going to take him to the Monster Jam Truck Rally in Atlanta in January. I say "we", I mean my hubby and William. I value my hearing and sanity.
I know they usually do a "reveal" for the wish maker, so I'm thinking of doing one for William as well. Just wondering when I should do it? I guess I'm getting ahead of myself though - 17 days until we "officially" MAKE MATTHEW'S WISH!!!!

 

[Lilfoot93]

Alright, so my birthday is coming up - yeah...
I usually just get some money from my parents and my in-laws and it goes to the "fix it" pile. Last year, it went to window screens - yeah, I know how to party it up for my birthday! This year, since Matthew will be getting attention and goodies from MAW, I wanted to be able to surprise his older brother, William, with something just for HIM. So we are going to take him to the Monster Jam Truck Rally in Atlanta in January. I say "we", I mean my hubby and William. I value my hearing and sanity.
I know they usually do a "reveal" for the wish maker, so I'm thinking of doing one for William as well. Just wondering when I should do it? I guess I'm getting ahead of myself though - 17 days until we "officially" MAKE MATTHEW'S WISH!!!!

Happy Birthday what a wonderful gift to give your older son. My girls are only 3 so I don't think they care so much right now not sure about a reveal. I know we are getting a send off party and they called us and said Trevor's wish is granted and we could tell him. But we do not go until May so I assume we will not hear anything until the first of the year. So until then I will live through the other wish trips

Jackie

 

[carebearkidney]

Happy Birthday what a wonderful gift to give your older son. My girls are only 3 so I don't think they care so much right now not sure about a reveal. I know we are getting a send off party and they called us and said Trevor's wish is granted and we could tell him. But we do not go until May so I assume we will not hear anything until the first of the year. So until then I will live through the other wish trips

Jackie

Thanks for the birthday wishes! It's number.......no comment.

I'm living through trip reports too...it eats up my time at night when I'm left wondering when they will call again.

 

[Threeboysandachickie]

Congratulations on getting your call! The 18 will come very soon. We got our call too and are meeting on the 14. If your ds wish includes GKTW do you have a date in mind? We are hoping for October or November. I hope that is not too soon of a trip. Good luck passing through the next few weeks! And have a very happy birthday?

I look forward to reading about all of your plans!

 

[EEs*Mommy]

Joining in! You have a beautiful family as well <3 Can't wait to hear more about your trip!

 

[carebearkidney]

Congratulations on getting your call! The 18 will come very soon. We got our call too and are meeting on the 14. If your ds wish includes GKTW do you have a date in mind? We are hoping for October or November. I hope that is not too soon of a trip. Good luck passing through the next few weeks! And have a very happy birthday?

I look forward to reading about all of your plans!

Thanks! Since I'm working around school (pre-k and 1st grade) my first choice will be their winter break in February and then spring break in April. I would LOVE to be there the week of Thanksgiving - but we've missed so many holidays with family due to being in the hospital, that I just can't make myself pick those more "magical" times.

Thanks for the birthday wishes - my parents are treating me and the family to lunch (my choice!). Yum!

 

[carebearkidney]

Joining in! You have a beautiful family as well <3 Can't wait to hear more about your trip!

Thank you!
Get ready, get set, pack the Versed!