November 19, 2009

More Prayers Needed

Tim's dad needs more prayers. He had another seizure Saturday morning which landed him back into the ICU at St. Elizabeth. The doctors have changed a couple of medications around in hopes that it will eliminate the seizures. Larry is once again having a hard time recovering from this episode. As you can imagine it is very hard for his family to see him in the state that he is in. Please pray that the chemo and radiation gets rid of the tumor so that we can get Larry back.

Brooke delivered baby Gabi yesterday afternoon. The doctors say that Gabi looks great. They have her in the NICU at Good Sam and are running some tests to rule everything out. My sister-in-law said that mom and dad are doing well, but that the NICU is very overwhelming. Please keep them in your prayers.

Max, well Max gave both Tim and I a heart attack over the weekend. He woke up Friday having a hard time breathing again. No matter what we did with his dialysis he still woke up pulling and tugging with every breath. We weren't getting any fluid off of him so his weight climbed quickly. Dr. Brad asked us when the last time he had pooped was and we couldn't remember (we think it was a week- oops). So we started him on a good dose of Miralax and 4 days later he finally exploded. Ever since then we have had good dialysis, his weight came back down and his breathing is so much better. When someone on PD is constipated the catheter can get stuck against the bowel or get pinched which results in a low UF (ultra filtration) which then results in an increased weight (fluid overload) and in Max's case, an increased work of breathing. All is well now.

Max is also on the verge of walking in his walker. We put him in it and he goes to town cruising backwards. We have decided to increase is physical therapy time to twice a week. Mr. Dan (physical therapist) would like to have him walking before his transplant to help with his healing process, so he felt it important to work with him as much as possible until the end of the year. So on Mondays we will take him to Mr. Dan's office and on Thursdays he will come here to the house. We are hoping to have him taking steps by Christmas. Fingers are crossed.

Project Santa is doing pretty well. If you would like to know more information or if you are interested please email me at

Something I am very excited about... I am going to the movies for the first time in 2years with my mom on Friday. Yes I am one of those crazed "Twilight" fans that's going to see it's newest addition on opening night :o) Can't wait!!!

And that ladies and gentlemen is the story of our life right now.

Enjoy your weekend.

November 12, 2009

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:

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.

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.

November 11, 2009

Project Santa Update

Thank you to those of you who are interested in helping us out with Project Santa. I got to speak with the Child Life specialist who helps out with the kids in the dialysis unit. Her name is Deb and she was able to help me with some information that we need to help us with this great cause.

Rules for Project Santa:

#1 All of the toys have to be brand new
#2 All toys have to have a minimal amount of cloth on them. All toys have to be
able to be wiped down with a sani cloth for germ reasons
#3 All gifts have to be left unwrapped

That's it. Deb didn't give me any specific ideas, but I will try to come up with some that I think would be good gifts for a child/teen. Please use your own imaginations with what you choose as well. Don't feel that you have to stick to my ideas. Also keep in mind that there are kids of all ages here at the hospital. We can't forget about the teens that are here as well.

My ideas:
Coloring Books and Crayons
Any of the Crayola products
Cars and Trucks
Board Games
Arts and Craft supplies (beads, etc)
Play Doh

The list could go on and on. We would like to have all of the gifts in by Monday, December 14th so that I have time to get them over to Children's and that gives the fantastic Child Life Department to get them wrapped and to the children before Christmas.

We're still working on where you can send the gifts. As soon as I figure this out I will let you all know.

Again, we thank all of you from the bottom of our hearts for doing this with us. Christmas is a time of giving and what's better than helping the children that will be in the hospital during the holidays?

November 10, 2009

Project Santa

I am writing on behalf of all of the children that will not be spending the holidays with their families at home but within the walls of Cincinnati Children's Hospital Medical Center. I got this idea from another blog I am following and thought that it was such a great idea. We will be sending a gift to that family, but Max, Tim and I would love to do this for the very hospital that saved Max's life as well.

We were fortunate enough to have Max home for Thanksgiving and Christmas, but the realization is that there are going to be kids in this hospital for the holidays. As sad as it is, some of these kids are all alone. I have seen it with my very eyes. Some of these children's parents don't come to see them on a regular basis. Think about the smile you could put on these kids faces just by donating a gift for them to open. Some of these children have never gotten to experience Santa Claus. Make them believe. Make them believe that life isn't all about needles, IV poles, chemo, surgery and doctors. Make them believe in the miracle of Christmas.

So here is our request. We are asking for a donation to give to the kids of all ages that will not be going home for the holidays. I will be speaking with Child Life to see what I need to do get this rolling. I will also get a list of items that would be good for these children.

I need to get an idea of how many of you would be interested in doing this. Please email me at or leave me a message in the comment section of the blog. I would appreciate it if you would also let your family and friends know about Project Santa so that we can have a better outcome for the children.

This is something that hits very close to home for Max, Tim and I. Please join us in making this a holiday season the kids will always remember.

We appreciate all of your support.

Tim, Beth and Max

November 8, 2009

November 8, 2009 was the one year anniversary of Max coming home, for good, from Cincinnati Children's Hospital's RCNIC. Unfortunately this big day got jumbled in a busy weekend with my brother's wedding, but what an awesome way to celebrate it! Max was the ring bearer in the wedding and did a fantastic job. I have to admit that I got teary eyed thinking about the fact that Max was even there to be in the wedding, let alone be in a tuxedo riding down the aisle in a wagon with the flower girl. I have to say that he was the cutest ring bearer ever known to man. He sat in his wagon in awe of all of the people looking at him and smiling. It was very cute.

Onto how Mr. Max is doing. We had bit of a scare last Tuesday when Max woke up having a hard time breathing. He was pulling and tugging pretty hard and I couldn't get him off of his oxygen without him dropping his oxygen saturation. I have seen him at his worse and this was pretty close to being at that point. I gave him a couple of hours to come off of dialysis and to sit up to see if it would help. It did a little, but not enough for my comfort. I called the hospital and found out that neither Dr. Ben or Dr. Brad were there at the hospital. I am one of those mama's that only likes to talk with Max's primary doctors so at this point I started to panic. I was speaking to Max's nutritionist so she paged Dr. Brad because Dr. Ben wasn't due to come in that day. To my surprise though, Dr. Ben is who called me. She had paged both doctors. Dr. Ben told me to bring him in with his oxygen and to pack our bags and that he would meet us there. (He's such a fantastic doctor). Of course I started sobbing with that news even though I knew it was coming. I had actually already started packing, but hearing him say it made it real. So I packed Max up, oxygen and all, and headed to the dialysis unit.

Max was sitting up in the bed being a complete ham. He was loving all of the attention that he was getting from the nurses, doctors and nutritionist. Dr. Ben said that if he sent him up to the floor acting like he was that they would laugh at him. We tried weaning him off of his oxygen there but to no avail. He was only needing a 1/2 liter rather than the full liter he needed earlier in the day. We waited for Dr. Brad to get there from the Anderson Campus to see what his thoughts were. He decided that if I was comfortable with taking him home on the oxygen and monitoring him that he was okay with that. If Max got any worse though then he would need to be brought back in and admitted.

So what caused all of it? We believe that he was fluid overloaded from his dialysis. He didn't have any other signs (besides a slightly higher blood pressure) of being fluid overloaded. He sounded great and was acting like himself, so they decided to change a few things with his dialysis and see what happened. We also hooked him up for 16 hours rather than 12 to try to remove a little extra fluid. Wednesday morning he was still needing a little bit of oxygen but I had him off of it by late afternoon. His breathing was calmer but he was still tugging a little. Dr. Ben was okay with it and told us to just keep watching him closely. Thursday morning, Max woke up, came off of his oxygen without any problems and was breathing beautifully. He has been like that ever since.

Thank you God for sparing Max from another hospitalization, especially with Bob and Ashley's wedding being that weekend. Thank you to Marissa (Dr. Ben's wife) for praying for Max during that scary time.

The transplant date is still in the works. I am really hoping to hear something this week considering it's been in the works for over a week now. I'll let you know as soon as I hear something.

Please continue to Pray for Grandpa Larry. He started his chemo and radiation last week. He is doing pretty well with both and doesn't have any major side effects.

Congratulations Bob and Ashley!!! We wish you nothing but the best in all of your years to come as husband and wife.

Also wanted to congratulate my brother Tony and his fiance Hillary on expecting their first baby in February. Can't wait to meet you Oliver!

Also for those of you that have been praying for Brooke and Baby Gabi, thank you! Both are doing very well. The doctor's can't find anything wrong with Gabi!!! she is due to be born on the 17th or 18th of November unless Brooke goes earlier. AND.... Brooke was able to get a 6 hour pass for the wedding. It was so great to have her there to celebrate in her sister's big day. It was hard saying goodbye to her when she had to go back, but I think it lifted her spirits to be able to get out for a little while. Please continue to pray for her and Gabi.

That's about it ladies and gents. Life has been very hectic with the wedding and another wedding in 2.5 weeks, but life is good. Thank you to those still following Max and his journey.

What a gorgeous weekend for a wedding! Here are a few pictures that I took the day of the wedding. Enjoy!!!

Going to the chapel and we're going to get married...

Max and his Aunt Ashley

Isn't she beautiful!!!

Max and Aunt Ashley taking a break from pictures

Max and his Uncle Bob after the ceremony. No he didn't wear that shirt for the wedding, we had already taken him out of his tux :o)

The new Mr. and Mrs

November 1, 2009

Favor to ask

Chunky Monkey

6 months ago was Max's first birthday party and I am just now getting around to asking you all to do this. I had a photo album with cards for people to write a little something to Max that he can read when he gets older. Of course it started raining on the day of his party and it got thrown in the house and forgotten about. So here is my favor.

I was wondering if all of you (those that were at the party and those that were not) would leave a little message in the comment portion of this blog. It can be anything you want Max to know about, wisdom, encouragement, anything. I will then transfer your message onto the cards that I made and place it into the photo album with the pictures from his party.

I would greatly appreciate all of you doing this. I look forward to Max learning about all of you that have prayed for him from the beginning and I think this would be a great way to document all of your wonderful comments for him.

Thank you everyone :o)

Happy Halloween!!!