Long time, no see...

I can't believe that it's been over two years since I last posted on here!

Here is a little recap of what's been going on in our lives over the past couple of years:

Max is now SIX years old and will be starting first grade in 3 short weeks!!  I cannot believe that he is old enough to be going to grade school.

Max unfortunately had another episode of rejection in October of 2012.  He once again had both cellular and antibody mediated rejection.  Thankfully, we found it early and were able to stop it with some heavy duty steroids and IVIG. 

In June 2013, Max had his "big" bladder surgery!  We are so happy that he ended up not needing the augmentation that we thought he was going to need!  Max's vesicostomy was finally closed and he had a mitrofanoff placed.  During this surgery, his remaining native kidney was also removed to decrease his risk of infection.  Max pulled through the surgery like a champ and after a week in the hospital, he was discharged.  After  6 weeks, we started the process of trying to stretch his bladder.  We were so excited to learn that it worked!! Max now has what is considered to be a "normal sized bladder" for a child his age! We now catheterize him through his mitrofanoff every 3 hours to prevent any urine from refluxing into his transplanted kidney.  We should be able to start trying to potty train him soon- yippee!!!

Three months after his bladder surgery, we found out that Max's urologist was leaving Cincinnati Children's.  We are fortunate that he was able to perform Max's surgery and was with us for all of his follow up testing.  He informed us that he feels that Max will not need any further surgery on his bladder.  We have met our new urologist once so far, and he is great as well!  We are looking forward to working with him- primarily to get this boy out of diapers!

Right now we are working on getting some height and weight on him.  He is only in the 2nd percentile for his height, so we have started him back on growth hormone in hopes to get him taller.  I am also in the beginning stages of starting him on a blenderized diet that we will put through his g-tube overnight to get some more calories in him. Fingers crossed that we get him growing!

Overall, from a health standpoint, Max is doing great!  He gets labs once a month (unless something is off) and sees his nephrologist every other month.  

Max is still very much into his trains and playing outside.  He played soccer last fall, but ended up not being too much of a fan!  He loves to argue with his sister over anything and everything, but the kid has a big heart and we are so proud of him.  He has grown so much over the past 2 years and we look forward to what the future holds for him!

. . .

In other news, Max has a new sibling!  Well, he is 14 months old, but new since the last time I posted :)

This is Levi Lawrence Livingston.  He was born on May 20, 2013 and has completed our family.  He is very easy going and just a happy kid.  We are so blessed to have him!

Miss Cora will be 3 in September.  She can be the sweetest little girl, but don't let her beautiful baby blues fool you- she can stand up for herself and will let you know if she doesn't like something!  She loves everything princess right now, but isn't afraid to get her hands dirty either :)

I think that's it for now!  I will try my best to post more frequently this time around  :) 

Thanks for stopping by!

Love, 

Tim, Beth, Max, Cora and Levi

  

Four Years Old

Where we started...

Max celebrated his fourth birthday on May 12th!  He started the morning with a room full of balloons:

We celebrated the big day with our family and close friends. 

 Max requested a train party, so that's what he got

Everyone seemed to have a great time despite the cooler weather and cloudy sky

(and rain that held out until the evening)

This was the first year that he was able to blow out his candle all by himself. 

He was so proud of himself when everyone started cheering for him :)

I can't believe he is four.  He has grown up to be such a sweet, fun and easy-going little boy.  He finished his first year of preschool a couple of days before his birthday.  I can't believe how much he has grown since September.  He knows his ABC's, can count to 12 (a little higher if he really concentrates).  He knows all of his colors, shapes and can recognize almost all of his letters and all of numbers.  We are so very proud of the little man that he has become.  We can't wait to see what life has in store for the boy who wasn't suppose to survive birth.  He continues to amaze us and his doctors every day.  We are so very proud of him. 

Max's Four Year Interview

1. What's your favorite color?   Red

2. What's your favorite toy?   choo choo trains

3. What's your favorite fruit?   Peaches

4. What's your favorite TV show and movie? Mickey Mouse and Cars

5. What's your favorite thing to eat for lunch?   Chicken nuggets

6. What's your favorite outfit?   Lightening McQueen Shirt

7. What's your favorite game?   Duck Duck Goose and Ring Around the Rosie

8. What's your favorite snack?   Rice cakes

9. What's your favorite animal? "Elephant, wait no... MANATEE!"

10. What's your favorite song?  "Twinkle, Twinkle Little Star"

11. What's your favorite book?   "Bears"

12. Who's your best friend?   Nathan

13. What's your favorite cereal?   Frosted Flakes

14. What do you like to do outside?   Play ball with daddy

15. What's your favorite drink?    Milk and water

16. What's your favorite holiday?   Christmas

17. What do you like to take to bed with you?   My blankie

18. What's your favorite thing to eat for breakfast?  Frosted Flakes

19. What do you want for your birthday dinner?   Noodles

20. What do you want to be when you grow up?   A teacher

Thank you for standing by us throughout this wonderful journey.  We wouldn't be where we are today without our wonderful support system, so thank you from the bottom of our hearts.  We are forever grateful!

Follow Up

Go Cats!!!

Hello All:

So Tim and I had our meeting with Max's urologist on Monday afternoon.  Surprisingly things went well and we left feeling a lot better about things.  I won't go into full details about what took place between us and the doctor at our appointment, because frankly, it won't solve anything.  But here is what took place at our appointment on Monday...

Max has a repeat video-urodynamics test done last week.  The results showed some improvements.  His bladder will now hold 100mL (30mL equals 1 ounce), whereas in August it only held 75mL.  The 100mL capacity is also not taking into account that there was a balloon holding the catheter in which took up about a 30mL space. The grade II reflux that was going into his transplanted kidney is now gone, which is great, but it can reappear just as quickly as it went away.  With that said, Max's bladder is still small, but doable.  A normal bladder size for a kid his age is 150mL, so he isn't too far off.  Our issue is the amount or pressure that his bladder is in when it is full.  Max's pressures are at 60 and they like them below 40, maybe even 20.  That is why we can't close his vesicostomy safely.  With pressures that high, the urine in his bladder would reflux into the kidney and kill it.  Obviously, the kidney is our top priority, so we will not be closing him up. 

Here is the plan- we wait.  Because there were improvements, we feel that it is best to wait and see if things improve even more with time.    We will repeat testing in 6 months (October) to see if things have changed.  If his bladder has gotten better, we may wait another 6 months to see if we can get it even better, but that will depend on the results.  If things are unchanged in 6 months then we will move forward with the bladder reconstruction.

Remember, we are trying to avoid this bladder reconstruction.  It is a very big, long and nasty surgery that could result in a 4 week hospital stay.  This type of surgery also puts a lot of responsibility on us at home.  There will be a very strict cathing schedule of ever 2-3 hours for the first 3 months and every 3-4 hours after that.  Max will have to cath himself for the rest of his life.  He will also have to irrigate his bladder once a day for the rest of his life to avoid mucus buildup in the bladder.  Max will have a risk of bladder cancer because of the bowel tissue that will be used to make his bladder bigger.  The list goes on and on, but this surgery may be our only option.  We've seen miracles happen right before our very eyes, so we know that with consistent prayer we can avoid this surgery.  We have 6 months to prove that miracles happen more than... well how many times has Max proved this? 

Please pray for a(nother) miracle. 

PS:  We were told once again that kids with a severe blockage like Max had do not survive because their lungs do not develop enough to sustain life.  Somebody was/is looking over our little man.  Somebody who has a lot more power than any of us here on this earth.  Miracle #2.

Once again, the boy is famous :)

Moving forward

Hello all:

We are at the point of moving forward with Max's big bladder surgery. He will be going in tomorrow morning at 9:45 for a video urodynamics test. This test will let us know if there is any improvement with Max's bladder since his last set of tests last August. We will find out about the pressures in his bladder when it is full and how much urine the bladder will hold before he empties.

We had a meeting with his urologist in February but we will be meeting with him again on Monday, April 16, to discuss some things that we were unclear of from his last appointment. I will go into more detail after the upcoming appointments.

We have a few prayer request for Max's prayer warriors. Most importantly, we ask that you pray for improvements in his bladder. We are also asking for guidance and patience as Tim and I make some difficult decisions with what step we take next with Max.

Again, I will go into more details once we meet with the doctor again to discuss some things.

Things may start picking up here on the blog as we start moving forward with this process, so be sure to check back every couple of weeks for updates.

Thank you for all of the love and support over the past (almost) four year.

Four Years

Four years ago today, I underwent a surgery that had only been performed 6 times in the nation. This surgery was the only chance our unborn son had for survival because of the severity of his condition. There was a chance of him not surviving the surgery or the pregnancy, but it was a chance we had to take. Giving up was not an option. Four years later and we are 13 weeks away from celebrating the birth of a true miracle. A miracle that has kept us on our toes but has brought so much joy and happiness to our lives. 

We love you Max!  We are so proud of you!

Hello followers

Thank you to all of you who periodically check in on our blog.  I apologize for not updating since Cora was born.  Life with two kids is a lot crazier than I was expecting :)

Here's a little recap of our life over the past 2.5 months:

Max is doing very well.  He still loves school and is making a lot of progress.  Unfortunately, he has been sick for most the winter season so far.  He ends an antibiotic and is back on one a few weeks later.  We are dealing with some pretty nasty mouth sores right now.  His pediatrician originally said they were canker sores, but they are spreading so I am not to sure if that's what we're dealing with or not.  I am actually waiting for a call from nephrology as I type this.  The poor guy is in a lot of pain though, so I am hoping to get something figured out before Christmas so that he can enjoy his gifts from Santa. 

Cora is getting big, although everyone tells us that she is tiny.  According to her stats, she is only in the 15th percentile for weight and 10th percentile for height, but hey we're not big people either!  She is on the charts so I'm happy.  She is smiling and starting to coo now.  She is definitely a mama's girl, but she does have her daddy wrapped tightly around her little finger.  Max absolutely adores her.  He wants to be in her face all the time and loves to make her smile.  He is such a good big brother :)

We are finally getting settled into our new house and love all of the extra space that we have.  We are looking forward to having the room to host our first New Years Eve party, Cora's baptism and Max's 4th birthday in the upcoming months. 

Overall, life is good.

We want to wish all of our old and new followers a very Merry Christmas and heath, happiness and happy memories in the new year. 

Introducing Cora Anne Livingston

September 26, 2011

6 pounds 8 ounces

19.25 inches long

Absolute Perfection

Recovery Room

Going Home

4 days old

6 days old

Melt mama's heart





The very proud big brother and his "baby sister"

We welcomed our little girl into the world last week.  Life is perfect.  Cora is perfect. Max is the world's best big brother and melts his mama's heart at least once a day with the sweet things that he does and/or says to Cora.  Like when Cora and I went with Tim to drop Max off at school on Monday so that he could show his new sister off.  Oh the cuteness! He couldn't say enough about her to his friends and teachers. When someone new came up to see her he would yell, "look what we found!" When it was time for him to line up and head to his classroom he yelled, "Bye mommy! Bye daddy! Bye Baby Cora!"  She is the first thing he talks about when he wakes up and he can't go night night until he tells her goodnight and gives her kisses. It's enough to make a mama tear up on a daily basis.

The time is already going way to fast and it's only been 8 days.