Thank you!

Tim and I wanted to take the time to thank those that donated to Project Santa this year! We had another successful year and it couldn't have been done without your help.

We had a great time once again delivering the toys to our contact ladies, Maggie and Cathy.  We were also able to deliver our annual cookies to Max's nurses and doctors, which is always so much fun. 

Max had a clinic appointment with Dr. Ben that afternoon.  Max's labs are stable enough for him to get a little bit of a break.  He has been pushed to every other week instead of weekly for labs and he won't be seen in clinic again until the first week in January.  In a nutshell, this means that Max is doing fantastic. 

We got to see one of the fellows that started when Max was only a couple months old.  She hasn't seen Max since shortly after the transplant so when she saw that he was walking and talking she got emotional.  It just proves that even though their job can be very difficult, if you can make it through those hard times the end result is so rewarding.  Max is a perfect example of this because 2 years ago, not many people thought he was going to survive and now here he is walking down the hallway of the nephrology office talking to anyone and everyone that would listen to him- whether he knew them or not.

Dr. Ben is leaving us this spring, so when I saw him walking down the hall right next to the little boy that he had a hand in saving, was one of the coolest experience of my life because I know those moments are limited. I have to say that it brought a tear to my eye to see all of those people lining the hall to watch my son walk.  A simple task that may seem like no big deal to some, but to us is a huge accomplishment for the little boy that wasn't suppose to survive.

So again, we thank you for standing by us throughout this journey.  It has been a long and very difficult road, but the end result has been absolutely fantastic.

Big Milestones

Hello All:

Max is doing fantastic! He continues to amazes us on a daily basis with how much he has accomplished over the past 5 months.

For example:

Before the transplant, Max had a vocabulary of only 2 words. "Ah" and "Dada". Today Max's vocabulary includes about 200 words. He is also starting to put 3-5 word sentences together. He is doing so well that his speech therapist said that she doesn't need to come on a weekly basis to work on language anymore.

Max has also started eating again. His therapist and I put him through a "Eating Boot Camp" that involved him sitting down three times a day and taking three bites at each sitting. After those three bites he could get up. He mastered that very quickly so we moved him up to 5-7 bites. Again, he mastered it. He is now sitting down and eating an entire 3.5 oz jar of food 2-3 times a day! We have also discovered that he likes chocolate milk, so we are giving him that when he asks for a drink now. When he is finished he says "yum." It's unbelievable.

The last accomplishment that we have for this post is that Max is... Well I will just let the pictures tell you:

Yup. He's walking...
...and he is so very proud of himself for doing so.
We are so very, very proud of this little man as well.

So he is not a pro at it just yet, considering shortly after these pictures were taken he fell, but dude the kid is walking when only a few short months ago he wasn't even bearing weight on his feet. He has a walker, but I don't let him use it too much because he relies on it instead of trying to figure it out on his own. He is mastering it very quickly and we couldn't be any prouder of him.



Needless to say, the kiddo is on fire. We have all of you and your fantastic love, support and prayers for getting us through the past 3 years. Thank you, thank you, thank you!

Have a great weekend everyone!

Reminder

Hello:

I am just reminding those that want to take part in Project Santa this year that all donotions need to be turned in to me by Monday, December 13th.

Please keep in mind that we are gathering gifts for kids of all ages and that all items must be brand new with minimal fabric. I will also need an estimate of how much you spent so that I can fill in the value portion of the donation form for the hospital.

If you have any further questions or are ready to set up a delivery you can email me at mommy2max08@yahoo.com

Thank you everyone :)

Happy Thanksgiving

Happy Thanksgiving to all of our devoted readers! I can't even begin to explain how thankful we are for this holiday season. This time last year Tim and I wouldn't even talk about the 2010 holiday season because we were so afraid of what the future held for us and our little family of 3.

This year- yeah this year is the first year that I actually understand exactly what Thanksgiving is all about. Thanksgiving is not about the food on our table or where and when we will celebrate the holiday. No, Thanksgiving is about the people that you get to spend it with and looking back over the past year and realizing how completely blessed you are to be exactly where you are on this given day.

My goodness we have so many things to be thankful for this year. Our family and friends for standing by us, supporting us and loving us throughout this year. The nurses that we spent our long days at the hospital with. Dr. Alonso, Dr. Alam, Dr. Tiao and the entire transplant team for successfully getting my kidney out and into Max with as few complications as possible. We are so incredibly thankful for Dr. Ben, Dr. Brad and the entire nephrology department for their expertise and devotion to getting Max to where he is today. We would not be where we are without them. (Dr. Ben- We are going to miss you greatly).

Thankful doesn't even begin to describe how I feel about this holiday season. I don't know if there is a word out there to express our gratitude that we get to celebrate this Thanksgiving with our son. Max has taught us more in his short 2.5 years than we have learned in our entire lives. His smile is contagious beyond belief and oh his laugh. Yeah his laugh is medicine for the soul. He is the light of our lives and we are thankful, blessed and honored that he is here with us to be celebrating this beautiful 2010 holiday season.

Happy Thanksgiving!

Urology Follow Up

Max had his urology follow up appointment last week. Dr. Alam walked in and started laughing because Max was literally climbing up the windows.

He took a look at Max's vesicostomy and said "We'll see you back in 6 months with an ultrasound." I looked at him confused because we always do ultrasounds and follow ups every 3 months. He told me that Max is clearly growing very well since the transplant and that he "has faith for his bladder." He wants to give nephrology the time that they need to get Max's kidney 100% healthy and to get his meds situated.

6 months from now will be Max's 3rd Birthday! I can't believe it. At our next appointment we will ramp up Max's ditropan to help with the stretching process of his bladder. 3 months after we do that, Max will have a urodynamics and a VCUG done to see if his bladder has grown and to check the pressures. With that information, we will be able to see if Max's vesicostomy can be closed.

So this all means that it's possible that Max will have a closed system in less than a year! We are holding onto hope, but not getting them too high. We are well aware that there is still a chance that he will need a bladder reconstruction, but there is nothing wrong with keeping the faith- especially when the doctor told us he has faith as well.

Keep the faith.

2nd Annual Project Santa

It's that time of year again! I can't believe the holidays are just a few short weeks away.

With the huge success that we had last year, Tim and I have decided to continue with Project Santa this year. We will be collecting toys for the kids that will be spending their holiday season at Cincinnati Children's Hospital.

We are asking for those that want to help this year to send new toys with minimal cloth on them so that they can be wiped down easily. We are looking for toys for all ages (birth to eighteen years of age). The deadline for getting your toys to us is Monday, December 13th. This will give us enough time to get the toys to the hospital in time for Christmas.

If you have any questions or are ready to drop your toys off please contact me at mommy2max08@yahoo.com.

We are looking forward to another successful year of putting smiles on these kid's faces!

Life is Good.

Paging Dr. Max
Max had his biopsy on Thursday morning and everything went well with it. They were able to sedate him without having to intubate him which resulted in him waking up smiling and talking to us. He did great.

Dr. Brad and Dr. G came into the room a few hours later with the results. The second biopsy looked a lot better than the first. Max was considered to be in level 2 rejection (moderate) with the first biopsy and he is not borderline level 1 (mild). Dr. Brad told me that the pathologist had a hard time finding one aspect of the rejection on the biopsy. We were able to see the slides on the computer and there is a huge difference between the two biopsies. The first one had a lot of bluish purple dots all over it which were the bad cells that were attacking the kidney. This time around, there were very few. Very good news.

Because there was still minor rejection they went ahead and gave him another dose of the IVIG and and one more dose of IV steriods. He also got two high doses of oral steriods in hopes that this will treat the remaining bad cells. There is some confusion of whether or not there will be a sixth IVIG infusion. I am waiting for that to be cleared up and Dr. Ben will let me know the verdict later this week.

Max's creatinine is still hanging out at .5, but the doctors are now pretty certain that it's because of the high dose of Prograf (anti-rejection medication) that he's on, so they are okay with it staying at .5 while he is on this dosage.

Max is doing great. He is all over the place and doing what a typical, healthy two year old does (minus the eating).

We also have some very good news on the home front. We are officially under contract and will be closing by the end of the year. The plan is for us to rent the house back from the new home owners until March 31st. We will then move in with my parents and break ground on our new home at that time.

We're anxiously waiting to see what else November has in store for us!

Life is so good.

Handy Manny, Doctor Max and Mickey Mouse
Hehe, Max got his shoe dirty- it's the small things in life!