Bathtime with Max

Have a great week!

Unbelievable

We Love you Max from Rick Neltner on Vimeo.

For everyone that participated in this fantastic project, thank you. This just proves how many of you wonderful people are out there praying for our family and it blows us away every time we see it. This project was a secret, so it was difficult for those in charge of getting it together to get in touch with a lot of you. So I want to extend the offer to those that weren't able to get involved the first time around to please participate. I would love to see how many others are out there and all of your creative ways of showing Max your love and support. I can't wait for him to see this video and to fully understand the magnitude of supporters he has out there rooting for him.

Thank you Rick, Allie and Denise for making this project possible. Allie- I don't know how you got in touch with all of these people, but thank you. The fact that you even called CCHMC trying to get all of the doctors and nurses involved (even though they said you couldn't because of HIPAA) proves how dedicated you guys were.

Again, thank you all so very much for taking the time to show us how much you care. We will cherish this for many years to come.

If you want to still get involved in showing Max your support, you can send your final project to mommy2max08@yahoo.com.

We look forward to seeing them!

Life is Good

The kid LOVES to eat!!!
So last Friday, Tim, Max and I all headed to the much anticipated urology appointment. As I mentioned in an earlier post, Dr. Alam peeked his head into one of our clinic appointments a few weeks ago to let us know that we were in a very good situation for Max not needing the bladder augmentation. That was all he said and he walked back out leaving Tim, Dr. Ben and I wondering what had changed Max's fate.

So Friday gave us all the answers. We were told that since Max now has a working kidney that he is in a whole new situation from a urology standpoint. Max will now grow like a normal kiddo which means that his bladder will grow as well. This means that with the help of a higher dose of ditropan (a medication that helps stretch the bladder) Max has a chance of "stretching" his bladder on his own with time.

What does this mean? Max will eventually be given a much higher dose of the medication. This isn't taking place right now because they want to give the kidney and bladder time to heal and adjust from the transplant. From there- we wait. Max's vesicostomy (stoma that he pees from) will not be closed for along time (we are thinking that he will have this until he is 5 or 6 years old). Dr. Alam promised us that Max will go to the first grade in dry underwear- so it will definitely be closed before then. That seems like a long time away, but it will, unfortunately, be here before we know it. Dr. Alam also promised us that he will fix Max. He promised this twice, so I have full confidence that he will fix Max's bladder. He seemed optimistic that Max will not need the augmentation. No one is promising anything, but he said that once these valve kiddos get kidney transplants, their bladders seem to work themselves out. Fingers crossed that Max is lucky enough to have this happen. Everyone is on board with doing everything in their power to avoid the augmentation.

There are definitely some cons to this whole situation. Max is not allowed to swim in a lake, ocean or pool until his vesicostomy is closed. He is also not allowed to sit in a bath tub unless the water is below his hips. The bottom line is that the vesicostomy is not allowed to be submersed in water of any kind. The reason: infection risk. As badly as it stinks that we won't be allowed to take Max swimming for a very long time, the benefit of not having to have the augmentation is much greater. The only other issue we are having is diapering. We are doing a lot of laundry with three outfit changes a day because we can't keep him dry. We are experimenting and brain storming ways to do so, but are not having luck thus far. It will take time and lots of brain power, but we will master this at some point.

All the not so fun cons of the urology appointment are overshadowed by the fact that the surgery that we were told Max will need from the beginning is slowly slipping further and further away. And that is enough to put a big smile on all our faces and to start thinking of other ways to make the hot summer days cooler than all of those who are out there swimming in their pools.

It's going to be a great day!

I know I said birthday pictures, but the files are huge and won't download, so here are some more recent pictures:

Max and his transplant buddy, Brandon. Brandon lives in Tennessee so we don't get to see them too often, but these guys are going to have a blast as they get older.
Going on a stroller ride after the transplant. Max won't wear a mask, so this is how we protect him from the nasty germs at the hospital. We call it "the pope mobile."
Max helping his nurse out by listening to his heart. The kid knows way too much about the medical world at the age of 2.
Daddy and Max at the zoo post transplant.

I am SOOOOO Sorry!!!

That was a very long delay in between posts and I left you all hanging on how well the last surgery went and I am so sorry. That was very mean of me.

With that said, surgery #16 was a success. Max is officially, well almost officially, tube free. All he has left is his feeding tube which will be there for quite awhile. The surgery was outpatient, so once Max woke up and showed stable vital signs he was free to go. We got home and he immediately began hopping all over the living room playing with his plethora of toys like nothing ever happened.

I will update more tonight on how the urology appointment went and with some long over due birthday party pictures.

For now, we have to go meet with our architect. Talk to you all this evening :o)

Surgery #16 is Tomorrow Afternoon!

I hate that we have to send Max into yet another surgery, but this one will be quick and easy. This is the surgery that will rid Max of having a dialysis catheter for the first time since he was 2 months old. This surgery will free Max from all tubes (except his feeding tube which will be in for awhile).

Surgery is tomorrow at 1:15pm. It's an outpatient procedure so he will be home tomorrow night.

I will keep you guys posted on how he does.

Please, please pray

Some of you may remember me mentioning my cousin Theresa being diagnosed with a brain tumor. Today I am asking that you please pray for her. She will be going into surgery this morning at 10:30 to have th tumor removed.

The doctors are optimistic, but it's still a scary surgery for all involved. Please keep Theresa, her family and surgeons in your prayers today.

The Big 300!

This is our 300th post on the blog! Not only are we celebrating 300 posts, but we are also celebrating this...



This is a picture of Max right after he pulled himself up from his butt to his feet for the first time! No one was in the room when he did it so thankfully Tim walked in while he was still up. I was downstairs when he walked in on him so he yelled for me to quickly but quietly come up to Max's room. I ran upstairs and went into his room. It took me a minute to realize what I was looking at but when I did I immediately got tears in my eyes and ran to get my camera. Saying that I am proud of him is an understatement.

I can't believe how quickly all of this is happening. Life with a healthy child is amazing! He was fun before transplant, but I can't believe how much fun he is now. It's kind of crazy to see all of the new things that he is doing. He is all over the place and we are having to "baby proof" the house for the first time. This new life is awesome and I can't wait to share more milestones with all of you!

Also, Max's kidney is doing awesome! His labs are beautiful and the ultrasound looks great! Despite the fact that it took the blood drawer 6 sticks to get his blood on Friday, the 3 day a week visits are going well. We should be going down to 2 days a week here very soon. Life with a new kidney is going fantastic!

For those of you who have been asking, Summer is doing okay. They ran into some complications during surgery and have been having some problems keeps her fluids under control since. The kidney is working well and she is producing urine. She is still on the vent and are hoping to have her off sometime this week. Laura is exhausted from being at the hospital 24/7 and is having a hard time getting the rest she needs. Dan is doing well and has been discharged.

Have a great week everyone!