October 29, 2009

Prayers Answered

Max's echo was normal. They did see some fluid around his lungs in the echo but his breathing is a little better today. We think that with the dialysis tweak we made last night that we may be taking care of it. We'll reevaluate things tomorrow with his PD nurse and Dr. Ben.

Today is a day for fantastic hearts!!! Miss Gabi's heart is perfect and strong!!!!!

THANK YOU GOD FOR SOME GOOD NEWS! I thought I was going to loose it with all of the bad news this week. I am crying tears of joy today!

Thank you all for praying for Brooke and her family. You all are the mightiest prayer warriors ever!


Lots of Updates...

Update on Max:
Max had his echo yesterday. 30 minutes after given the sedation he still wasn't asleep. They gave him another half dose and waiting another 10 minutes... still not asleep. Very grougy and his head was flopping around, but he was still talking and trying to sit up. We finally just started the echo while myself and two other nurses held him down. 5 minutes later he finally fell asleep. He stayed that way until I woke him up to go get our haircut. Results are in, but I don't know them yet. I just emailed Dr. Ben to get them. Check back soon...

Max also had a chest xray yesterday because I was not comfortable with his breathing. Dr. Ben and Dr. Brad thought it could be a viral pneumonia It came back descent. They said there was a little bit of fluid, but Dr. Brad didn't see it. He said if there was any it wasn't enough to worry about. As far as the pneumonia there were a few traces that could be related to it. He is on an antibiotic from a sinus infection, so they think that's taken care of it. Dr. Ben said it can take weeks to get a clear xray after having pneumonia, so he could have had this back when he had his cold (about a month ago) and we just never cought it.

I have a newborn... his name is "Cycler" and he DRIVES ME CRAZY! All he does is cry throughout the night. We get up with him about 4 times a night for 20-30 minutes at a time. I am going to throw him down the stairs when all is said and done. OKAY OKAY... don't go calling child services on me. The "cycler" is Max's dialysis machine and it is worse than having a newborn. We are trying a couple of things to see if we can eliminate some alarming. So far so good... for the first time in about 6 weeks.... I got to sleep through the night!!! This makes me a much happier mommy today. Dr. Brad says this is just a hiccup, so hopefully he's right again.

I don't know if I bragged about this or not, but at our nephrology appointment 2 weeks ago Max went from 73.8 to 75.5 centimeters. Yesterday he went from 75.5 to 76.1 centimeters. Ladies and Gentlemen.... THIS IS FANTASTIC!!! Max is now in the 3-10 percentile for length. WOOHOO for him.

Some of you may be wondering if I ever got the nerve to call and schedule the transplant. I did, but it's still not scheduled. We have quite a few big events going on in May and June of 2010 and if time will allow we are trying to schedule around them so that Tim and I can attend. With that said, I was told that Dr. Sheldon most likely won't be back until late spring or early summer. I am a very selfish person when it comes to my son's care, so I want Dr. Sheldon to be there. I want the best of the best to be in that OR room on the day of my son's "life changing" surgery. I want the doctor who says it shouldn't be a problem to connect the ureter to his bladder to be the one to do it. My name is Beth Livingston and I am selfish. I want the best.

Update on Brooke and Baby Gabi:
Brooke had the amniocentesis on Monday night. They removed a large amount of fluid and sent it for testing. The good news is that the ultrasound on Tuesday showed that Brookes's fluid level was still within the normal range. The bad news was that the tests showed that Gabi has fetal hydrops. This is a severe condition that is usually fatal to the infant. With that said, Brooke had another ultrasound this morning and it showed that all of the arteries in Gabi's belly are all looking good. The tech also said that the fluid in her belly decreased a little bit. Some of the genetic testing they did on the amniotic fluid came back and all looks good with that. Brooke's fluid levels increased a little, but are still normal. She is having a fetal echocardiogram today at 2pm, so please pray for them. Please pray that it comes back normal. Please pray that all of this is just Gabi keeping everyone on their toes.

Update on PawPaw Larry:
Not too much has changed. He should be starting his chemo and raditation treatments next week. Keep him in your prayers as he begins his 6 week treatment plan.

Update on Dr. Ben's little boy's name:
Zachary Aaron * 5 pounds 13 ounces * 19 inches long
Both mom and baby are doing well :o)

Misc Info:
Little Miss Kate (the 5 year old little girl I've been posting about who has a brain tumor) was interviewed by Dr. Phil yesterday. Stay tuned for the episode to air :o) Very exciting for the family to get awareness out there about childhood cancer. check her out at www.prayforkate.com

9 days until my little (yet taller) brother gets married :o)
29 days until my older (and much taller) brother gets married :o)

Yes we are VERY busy around here :o)

Have a great weekend everyone.

October 26, 2009

Please pray...

My future sister-in-law, Ashley, just sent me an email saying that her sister who is 33 weeks pregnant just got sent to Good Sam's High Risk Clinic. So many memories and thoughts rushed through me at that very moment. She had an ultrasound today and it showed that the baby has fluid in her belly and that one leg is measuring longer than the other. They are giving her the steroid shots to help with the baby's lungs and running a few more tests.

Please pray for Brooke and Baby Gabby.

Ashley just call me and said that Brooke has too much amniotic fluid (whereas I didn't have enough). They are going to try to remove some of it and see what happens. My guess is that they will do an amniocentesis and keep her overnight to monitor her. They will probably do another ultrasound tomorrow to check the status of the fluid in Gabby's belly and to see where Brooke's levels stand. That's my uneducated guess on what will happen over the next 24 hours. Please keep them in your prayers. I'll update as soon as I hear anything else.

Thank you.

October 21, 2009

Congratulations to Dr. Brad and Dr. Ben

The babies are booming at CCHMC.

Sending out a huge congratulations to Dr. Brad and his wife Holly. They welcomed their third daughter, Patton Marie, on October 7th.

Another huge congratulations to Dr. Ben and his wife Dr. Marissa. They welcomed their son (name to be determined) this morning at 5am.

Both mothers and babies are doing great.

Congratulations Dr. Brad and Dr. Ben. We're so happy for you and your families.

October 16, 2009

Update on Larry and Max

Larry had another MRI on Thursday and it showed that another tumor has grown. It's in the same area as the previous tumor that was removed in 2007. The doctors do not want to remove it because they think it will cause more harm than good, so here is the game plan:

Larry will be starting chemo (in pill form at home) and radiation. It sounds like he will be starting this in early November and it will take 6 weeks to complete.

Please, please pray that this all goes well and that it gets rid of the tumor. This is a very scary time for all of us and we need all of the prayers that we can get.

I will update as he moves forward with the treatment plan.

Thank you for all of the support.

Update on Max
Max's heart rate has been dipping into the 70s while he is sleeping for the past 2 weeks or so. He is staying at or slightly above normal for a kid his age, but he's never done this before. So Dr. Ben and Dr. Dixon have ordered for him to have an EKG and a Holter Monitor test done. He will have the EKG done on Monday and I still have to schedule the other test. We are confident that nothing is wrong considering Max has been on a monitor for most of his life without any heart issues, but we are doing it to "allow all of us to sleep at night."

Onto other things... Labs are great and the doctors are ready to set a date for transplant. I have to call and get it set up but am having a really hard time dialing that number. I feel like I am scheduling a date that is putting my son's life in danger. How do you pick a date when you don't know if your child will make it past it? I keep hearing from one set of doctors that it's going to be life changing and that's this is what we've worked ourselves up to. That this is what we have been wanting all along. But then another set of doctors remind me of how dangerous and high risk it's going to be. We knew it was dangerous, but I am reminded of how dangerous every 3 months. I feel like knew challenges are added every three months as well. I am petrified.

I hate thinking that 5 months from now our lives will be changed forever. Whether it be for the best or the worst, we don't know. I hate to think about the what if's. I hate thinking about all of the risks of the surgeries. That's all I hear when the doctors are talking to me about it. I have a really hard time hearing the "this is going to be life changing for your whole family" part of the conversation. All I hear is that there is only a 40% chance that the ureter will be able to be connected to the bladder....the chance of infection is very high because of his diverted bladder....he will probably come back to the ICU intubated....he is going to pee so much that we will have to give him a lot of fluids....his electrolytes could go crazy and we will have to pump him full of extra....he is going to be very puffy from all of the fluid and steroids....the kidney may not work right away and he may have to go back on dialysis until it does....you need to prepare yourself that there is a risk that he could reject this kidney.

I wish I could fast forward through 2010 and 2011 and begin a new life. I hope so much that Max will pull through these next 2 surgeries without many complications. We know there are going to be complications... Max doesn't have surgery without a complication, but I pray so hard that it's nothing major that puts his life or the kidney into jeopardy. I am holding onto hope that what Dr. Dixon said about being at Max's high school graduation will come true. I am so afraid to think too far past Spring of 2010. I am so afraid that what we have worked so hard for could take Max away from us. The one surgery that is suppose to save his life could take it.

Someone asked me, "How do you live your life knowing that Max may not survive?" My answer was, "I don't think about it. We wouldn't be where we are today if that's all I thought about." Ever since I found out on Wednesday that it's time to set a date... that's all I've been thinking about. I hate knowing that I have to call that number to set a date. We want to do this in March for several reasons, but deep down I want to wait because I know I will have those 2 extra months with my little boy. I hate not knowing. I am so tired of playing the wait and see game. I am tired of not knowing whether I will see my son go to preschool or graduate from high school or get married and have children of his own. I know that no one is guaranteed these things, but having a chronically ill child makes you think about them more. I know hate is a strong word, but I hate the fact that I have to set a date for my son's 13th surgery. I hate thinking that a year after the transplant I have to call and schedule his 14th surgery. A surgery that could last 24 hours. I hate that my son is going to have a scar from above his rib cage down to his pelvic bone. I hate that my son is going to have to take medication for the rest of his life just to keep him alive. I hate that I can't take my son out because of germs. I hate that Max will not be able to swim in the lake that I grew up at until he is 4 years old. I hate when I mistake a beep in the store or on TV for one of Max's machines (even when he's sitting right in front of me not hooked up to anything). I hate that my son was born with ESRD. I hate that stupid flap of tissue that caused all of this mess.

I hate thinking about having other children because of our experience with the first one. I thought I could do it, but I don't know anymore. I hate not knowing what the future will bring.

But in all of this hate... There is a little boy who has beat all of the odds. A miracle. A little boy that so many people look up to. A hero. A beautiful little boy that I call my son. A little boy that we all call Max "The greatest."

October 12, 2009

PawPaw Larry needs your prayers

Some of you may know Tim's dad's history, but for those that don't here is an overview. Larry had a seizure back in October of 2007 while driving on his way home from Florida. He was soon diagnosed with a benign brain tumor. It was removed I believe in November 2007. All was well until April-May of this year. He had another seizure while driving on the AA Highway. God was watching over everyone during these two occasions because no one was injured in either of these car accidents. Larry's MRI's didn't show anything so they put him back on his anti-seizure medication and sent him on his way. He had another MRI about 2 months ago that showed "a chemical imbalance in his brain." He was told that this could mean that something was starting to grow and that they may want to do chemo and/or radiation as a preventive measure. That was 8 weeks ago and he still hasn't heard what the plan of action is.

Friday morning, Larry went to eat his daily breakfast at Spare Time and had another seizure despite being on medications for it. He was sent to the ER and had a couple more there because the ER doctor didn't do what he was told by Larry's brain doctor. He was discharged to the brain doctor's office to receive the medicine they were suppose to give him at the ER. He was then sent home. So here we are again, waiting to see what the plan of action is going to be. Larry goes in for some tests on Thursday and Friday to see what's going on.

PLEASE pray for him and our family. We are trying to be patient as we wait for an answer and a game plan. It's very hard not knowing what the future holds for a treatment plan, but we are trying to be patient. Larry is also having a harder time recuperating after this series of seizures so please pray for his healing as well.

We appreciate your thoughts and prayers.

We're Back

Watching "Cars" on the way to Dale Hollow Lake

We went on a four day weekend trip to Dale Hollow Lake with my family and had a great time. We packed a whole lot of stuff for 4 days, but it was well worth it. We were very worried about Max not being able to sleep in his pack-n-play since he is very partial to his own bed, but he did great.

Dialysis went flawless and we even got the opportunity to teach Uncle Bob and Aunt Ashley how to hook him up so that Tim and I could potentially go on our first date since 2007.

Max wasn't too fond of the life jacket on his first boat ride, so he fussed through most of it. Daddy was to the rescue for the second ride though and did a couple of adjustments and he did much better. Unfortunately it was freezing for the second ride, but we all bundled up and survived.

Reality set in for Tim and I on Saturday morning though. We have known all along that our life isn't "normal" but to us, this is normal. Saturday morning we woke up to the smell of bacon, eggs, sausage, geotta, biscuits and gravy and wanted so badly to jump up out of bed and run down to eat with everyone else. Instead, we had to unhook Max from dialysis, get a blood pressure and a weight, dialate a vesicostomy, clean a gtube, change a diaper and get him dressed before we could start our day. By the time I got downstairs and got Max fed... my breakfast was cold and I only got a small piece of goetta. Don't get me wrong, we would definitely do it all over again, but it was a reminder of the hard journey that we are on. It was a reminder of what the rest of our lives hold with having a chronically ill child. But it was also a reminder of how much fun you can have with your family and friends despite what your life is like behind it all. We had a blast.

Moving on from the Debbie Downer moment.... here are a few pictures from our first vacation with Max.

Max on his first boat ride

Heading out for a walk

Do they really look that much alike?

Uncle Bob blocking the wind from Max. Isn't he so sweet?

He sat on the floor and played through most of the boat ride

Uncle Bob and Aunt Ashley

Being a ham

A family of three

Getting ready to head back home

I only have this picture on here of my goofy brother, Bob, to prove that we were on the lake rather than sitting in a boat on dry land pretending that we were on the water :o)

October 5, 2009

Pictures are Up

Click on this link: www.fromtheheartky.com
Click on Events and Specials
Click on Client Login
Go to Page 3 and click on Patch Livingston
Type the password Maxfall09


Thank you Paula for the wonderful opportunity. The pictures are beautiful!

October 4, 2009

A Day at the Pumpkin Patch

Tim, Max and I had the opportunity to have our pictures taken by Paula Losure this weekend at Neltner's Farm in Camp Springs, KY. She and a friend of hers, Trisha, own a photography business, From the Heart. I will post a link and a password to the pictures once they are up.

Neltner's Farm is also have their Fall Festival every Saturday and Sunday in October. We had such a good time on Saturday seeing the farm animals, eating lunch, talking with friends and taking a horse drawn carriage ride back to the pumpkin patch to pick out our pumpkins. Of course it wouldn't be a great adventure without someone falling down the hill on their butt with Max in their arms. Yeah... that would have been me. Max survived it with only a little mud on his jeans. I on the other hand...well.... just look at the aftermath...

My hands and shoes were also covered in mud along with some spots on my shirt. I give myself a 9!

Max and Mommy on the horse drawn carriage ride on our way to the pumpkin patch

After the Neltner Farm Adventure we went home to let Max take a nap. Okay for all three of us to take a nap. Max's mawmaw and pawpaw then came over so that Tim and I could go out with our friends, Rick and Allie. We headed to the Wool Fest in Falmouth to break me in to the true country fall festivities. I know, I know... until Saturday I had NEVER been to the Wool Fest. Geesh what kind of Alexandrian am I? Well... now I've been and it was a blast!

Here are some other pictures that are too cute not to share...

A preview of Max's Halloween costume :o)

Max is getting the strength to push himself up while he's on his belly. We're so excited! Can't wait for the little booger to start scooting.

"Uh Oh! Uh... hey mom you do the pedals and I'll steer."

A sleepy little boy after a long day at the hospital

I can't believe I am posting this one, but here it is. I had to run an errand after I dropped Max off at dialysis and this is what I came back to. Yes... those are three little pony tails in his hair. And yes.... my son has a plumber's crack. Melinda and Lori.... pay backs are hell.... just remember that :o)

Sorry Ladies... Max is taken. Right before the hug, Bella gave Max his first kiss. Too cute.

We will be heading out of town this coming weekend for out first trip with Max and all of his medical supplies. We are so excited, but I am so nervous at the same time. It scares me to be 4 hours away from Cincinnati Children's, but we have everything ready in case something comes up. Max has had a cold for about 2 weeks now, so I just hope that it goes away before we go. I am petrified that it's waiting to brew into something else while we're gone. I may not get a chance to post before we go, so have a great week and weekend and I will most definitely most pictures of our first family vacation. Wish us luck :o)