Pros and Cons

First of all I have to wish our Mighty Max a happy 18 Month Birthday!!! I can't believe how fast it's going. It seems like last week we were getting the news that the chances of our unborn son surviving were very slim and look at him now! He is a happy, smart, beautiful, and on the verge of crawling 18 month old little boy! Life is perfect.

You might want to reread the second to last sentence in the previous paragraph one more time. Focus on the one new word that I don't think I have ever said in Max's blog before. Crawling. He is so stinkin close to getting himself around on his own. We watch him in anticipation daily waiting for him to start cruising. He has gotten himself to a toy that was about a foot away from him by doing one big scoot. He's so close!!! We should have a crawling 18 month old within the next few weeks.

I am going to continue to brag if you all don't mind. What's that? Brag all I want? Okay.... Max is also on the verge of standing while holding onto something. The kid is on fire!!!! I can't believe how much progress he has made in the last month. It's absolutely crazy.

Of course all the man says is "dada," even when you ask him to say "mama." What can a mama do? Absolutely nothing. I am still a proud one

Also have to brag about Max now being smack dab in the middle of the 3rd to 10th percetile for HEIGHT!!! Max has never been on the charts for his height and within 6weeks he is now in the 3rd to 10th! He went from 73.1 centimeters (28.8 inches) to 77 centimeters (30.3 inches) in 6 weeks!!! That is huge!

Anyway, I guess I have to move on to the medical stuff...

Not a whole lot to brag about besides the fact that we have the best doctors ever!!!Max had his biweekly dialysis clinic appointment on Wednesday. Max and I hung out for about an hour and a half just chilling with the nurses and Dr. Ben. Dr. Brad was able to break free from his work to come down and see Max. Both doctors said he looks great and to keep up the good work. All of his labs also came back looking pretty good. His hemoglobin is on the high side of normal, but this could potentially mean we only have to give him one of his two shots every 3 weeks or once a month rather than every 2 weeks. So not a bad level to be elevated.

Dr. Ben and I talked about the transplant a little and how we think it would be in Max's best interest (and my peace of mind) that Dr. Sheldon do the surgery. With that said, the monthly urology/transplant meeting was going on at the same time we were there. Dr. Goebel (nephrologist) was in on the meeting and before he knew anything about the conversation that Dr. Ben and I had already had, he told Dr. Ben that those that were in the meeting feel that it's in Max's best interest (and my peace of mind) to have Dr. Sheldon do the surgery. Well how's that for being on the same page? I am liking it!

What does this mean? You might have already guessed what I am about to type. This means that the transplant is being pushed back a few months to the Summer of 2010 rather than the spring. How do I feel about this? Well I was taught to make a pro and con list for things like this, so here it is:

Pros:
This will give Max a few extra months to grow (which is beneficial for the surgery itself)
It gives me more time to prepare myself mentally and physically for the surgery
It gives Tim more time to work things out with work (FMLA paperwork)
It gives us more time to save money since Tim will be taking unpaid time off work
It gives us more time to get the house ready to sell in the spring
We can now have Max's 2nd birthday party around his birthday rather than waiting until his immune system was a little more stable
The number one pro for moving the transplant back is that Dr. Sheldon will be sitting in and/or performing the surgery and that is well worth the wait.


Cons:
We have to push back building our new house
We have to push back having another baby
We have to push back the augmentation surgery
It's more time that I have to dwell on the anticipation of the surgery
It's more time of not having a date on my calendar for when the surgery will take place
It could potentially happen around my brother-in-law's wedding in New Jersey (which Tim is in)

As you can see the pros outweigh the cons by a long shot. The only one that I am truly upset about is not being able to have more kids for another 2 years or so. I so badly want Max to have a sibling, but we have to wait. I have to learn to deal with that. It is what it is and there's nothing that we can do about it.

I ask that you still continue to pray for Dr. Sheldon. As you all know we have a line of bad luck in our past and I am so afraid that something is going to keep Dr. Sheldon from doing this surgery. Please pray that he continues to do well and stays cancer free. I really need him to be in on this transplant. I don't care who removes my kidney, but I NEED Dr. Sheldon to put it into Max and connect his ureter into his bladder. I don't trust anyone else to do it but him. There I said it. It's true.

Dr. Ben asked me on Wednesday how I was doing. My response was that I was worn out. He asked if I was acutely or chronically worn out. My response was acutely. I want to let you all know that we are doing well considering the situation, but we are worn out. As simple as this sounds, all I want is to be able to put Max in his PJ's and lay him in bed. That's all I want. I am tired of getting all of his stuff ready, laying a towel on the floor and rounding him up to do all of his medical stuff that has to be done every morning and evening. We have to cath his vesicostomy, flush an antibiotic through it to help keep it infection free, clean his g-tube, give him a shot (sometimes 2), weigh him, put a diaper on in a way that his vesicostomy won't have him soaked by morning and put his pj's on. Oh wait... we're not finished yet. We then carry him to his bed, put his pulse ox on, put his nasal cannula on, get a blood pressure, get a temperature, hook him up to dialysis, hook him up to his last feed of the day and give him his meds. And that ladies and gentlemen is just one of our daily routines. Worn out? Yes, I am worn out. This all happens by 9:00pm..... and it all happens again, with a few minor changes, in reverse order at 9:00am. Somewhere in the 11 hours that he's not on dialysis or not getting ready for bed, I feed him every three hours all of which include medication, do his physical therapy, do his speech therapy, put him down for a nap and try to get something done around the house. Worn out? Yes I am worn out, but he's worth it. I don't think twice about what we do on a regular basis. We have worked so hard to keep Max alive and we are not stopping now.... not when we are this close.

To Dr. Ben and Dr. Brad:
Yes, I am acutely worn out. I will also admit that there are days when I am chronically worn out and I loose it. But as you know, I will do anything and everything that you two tell me to do if it's for the well-being of Max. Tim and I chose this path. We are in it for the long haul, worn out or not.