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!