Happy Kidneyversary Max!

I have a hard time believing that we are at the one year mark since Max's kidney transplant.  I still have to remind myself of the rollercoaster ride that we were on just a short year ago.  Believe it or not, I barely remember life before July 8, 2010.  The dialysis and endless meds seem like a lifetime ago.  Fighting to keep Max alive was what got us out of bed every day.  When I look back on some of my past blog posts, I have a hard time believing that that was me writing those words.  I feel like I am looking into someone else's life and can't believe what that family has gone through to get their little boy to where he is today.  Then I realize that that was our life.  All of the surgeries, hospital stays and visits, dialysis treatments, tests, therapy sessions, blood draws, the sleepless nights and all of the tears- we lived that.  Not only did we live it, but we survived it, and I am so proud of who we have become because of the journey that we chose to live.  It was a journey of struggle and heartache, but it was also a journey of determination and love for one little boy.  A little boy who has taught us more in his three years of life than we have learned in our 28-30 years of life. 

One year ago today, July 8, 2011, Max got his second chance at life.  A chance that no one believed he would get because they didn't think he would survive past a few days old.  Because of the faith and determination that our medical team, family, friends and strangers had, Max got that chance.  We truly believe that without the support team that we have following us down this path, we would have never gotten to where we are today.  It's because of all of you and your prayers that Max is alive today.  We will never be able to repay you for that, but please know that we will never forget what all of you have done for us and we will forever be grateful of your love and support. 

Max's accomplishments over the course of a year:

• Max went from saying 2 words (ah and dada) to speaking sentences (nonstop!)
• Max went from bearing no weight at all on his feet to standing within weeks of transplant
• Max went from hopping on his rearend to running
• Max went from gagging on anything that came near his mouth to eating Mac-n-Cheese and carrots (we're still working diligently on this, but he has made HUGE progress!)
• Max went from taking approximately 10 medications to only 4
• Max has graduated from both speech and physical therapy

Those are some of his biggest accomplishments of the year, but I am sure as soon as I his "Publish Now" I will think of 12 more. 

Of course I can't end this post without telling you some very good news regarding Max's kidney.  The antibody that was attacking Max's kidney back in September and October of 2010 is officially GONE!  Can I repeat that?  The antibody that was trying to rid of Max's kidney is G-O-N-E!!!!

Can I get a WOOHOO?!?

June 2011

Hello All:

Life is still good here on the Livingston front.  Max is officially three which is still crazy to think about.  His labs are still good and he continues to do very well both developmentally and in growth.  He has gained a little bit of an attitude since his third birthday which means that his new favorite word is "NO!"  Mommy and daddy are NOT very excited about it.  He spends a little more time in time out these days as well.  He is testing his boundaries more and more each day and mommy seems to be loosing her patience with it a little more than daddy is, but that's a three year old for you.

June has been keeping us busy so far.  We started the month off with the birth of my best friends baby girl.  Miss Harlow made her debut late in the evening on May 31st.  She is absolutely perfect and beautiful.  It's possibly the coolest thing to see your best friend become a mommy.  To see the love in her eyes as she stares at her daughter is one of those moments that I will remember forever.  Congratulations Rick and Allie!

My immediate family took a trip to Gatlinburg this month as well.  It was so nice to be able to get away for a long weekend.  We all had a great time and can't wait to get another trip in soon.  This was our first weekend away since Max's transplant- it was long overdo.  During this trip we were able to meet up with 3 of our transplant buddies.  It was one of the coolest experiences of my life watching these four little miracles running around and playing with each other.  I had met all but one of the families before this weekend, but you would've never known that we all just met less than a year ago.  Something just felt right about being with this group of people.  You didn't have to explain anything to anyone- they just knew.  They don't judge if your child is behind the other kids his/her age- they celebrate the progress that each individual has made.  We talked about gtubes, granulation tissue, PD catheters, eating/drinking issues, therapy sessions, dialysis, medications, labs and feeding pumps and no one had to ask what the other person was talking about.  No one looked at you like you had three heads when you asked a question about something kidney and/or bladder related, because they all knew exactly what we had been through and will continue to go through for the rest of our lives.  These are our people and it felt oh so good to be able to communicate with them face to face about every day challenges without feeling like we are the "odd" ones.  I can 't wait to hang out with these wonderful families again and to see the milestones that each of our kids have made in the time that we will be apart.  Those few hours that we were together was another one of those moments that I will never forget.

On June 6, we were invited by Dr. G to join him and another transplant family at the Cincinnati Reds game to surprise Dr. Ben.  This was also one of those moments in life that we won't ever forget.  Dr. Ben is unfortunately leaving us at the end of the month to take an attending position at CHOP (Children's Hospital of Philadelphia).  As most of you know, Dr. Ben has been with Max since the beginning of his fellowship.  Max was only 6 weeks old when we met Dr. Ben.  Little did we know that on July 1, 2008 we would meet one of the doctors that would not only make a huge impact on our lives with his bedside manner and easy going personality, but we had just met someone who was going to have a huge part in saving our son's life.  Dr. Ben never made a decision about Max's care without confronting Tim or I to ask our opinion.  If we were unsure of something, Ben would be there to answer any of our questions and if he didn't know the answer he wasn't afraid to say so.  If he didn't hear from us after a couple of weeks he would call or email us just to check in and make sure everything was still going well.  He went out of his way to come to the dialysis unit every time Max was there for a treatment to make sure he was doing well and to see if we needed anything.  He came in on his day off once because something unexpected happened to Max.  Guys, these are just a handful of the things that he did for us as a fellow.  Can you imagine what kind of attending  he is going to be?  Dr. Ben is going to be one of the best attending doctors that CHOP has ever seen.  We are so devastated that we aren't going to be apart of it, but we are overjoyed that we got him for the three years of his fellowship.  As heartbreaking as it is to lose a doctor like him, we wouldn't have traded the time that we have gotten with him.  He got Max, Tim and I through the hardest 3 years of our lives.  It's impossible to repay someone for saving your son's life.  All we can do is take comfort in the fact that what Dr. Ben learned in his three years of being Max's fellow will help him in saving another child's life and that is enough to put us at peace with him leaving CCHMC.  Dr. Ben- you will never be replaced and will be missed greatly. Remember that you are always welcome to come back :)

On June 20th, Tim and I signed a contract on our new home.  We got word that our financing was approved and that we will be closing on July 29th.  We are so very excited about our new adventure in our new home!

Enjoy the rest of your June!  We will see you all again in July.

PS: For some reason I am not able to load more than one picture at a time due to computer issues.  I promise to get pictures of our Gatlinburg trip and of our night at the Red's game up as soon as my computer will allow me to do so. I just didn't want to delay the update any longer :)

Happy Burpbay Max!

May 12, 2008








 
 
 
 
 
 
                                                                     
 
 
                                                                  May 12, 2011
 
 
 
 
 
 
 
 
 
 
 
 

 
Thanks again for all that you have done for us over the past 3 years.  It's been fun :)
 
Sorry for not getting this up yesterday.  Blogger was in read only mode while they did maintenance.

All is well

What a month!  I don't feel like we have stopped since March.  All is going very well though.  Max's labs are beautiful (knock on wood) and he has graduated from every 3 week clinic visits to every 4 weeks. 


Max will be celebrating his third birthday this Thursday.  With his third birthday fast approaching, lots of changes are being made.  He will be graduating from the First Steps program on Tuesday which means no more therapy.  He is slowly making progress with eating orally, so everyone is in agreement to let him have a break from therapy and see how he does over the summer.  At this point, the ball is in Max's court.  He has all of the skills he needs to take all feeds by mouth, its just a matter of when Max decides that he wants to do it.  His biggest issue right now is that he is afraid to chew anything thicker than a mash potato consistency.  His favorite food at this point is a fine chunky pureed mac-n-cheese.  Like I said, he is making progress and its just a matter of time.

Our other big piece of news is that Max has officially been enrolled into a preschool program.  He will start school this August.  I am still not quite sure how I feel about this, but I know that Max needs this and that he is going to love it.  I just have to learn and accept that he is growing up and that I need to give up a little of my control over his care.  Everyone seems to be well aware of my concerns with germs and illnesses and they are going to work with us when it comes to flu season and other illnesses that will be floating around the classroom. Sigh.  He can't be three already :(

We have been very busy this month finalizing our house plans.  We are getting very close to signing a contract with All American Homes and we should break ground sometime in June.  *Fingers crossed*

 We are also very excited to announce that Max will have a little sister this fall. We have had two ultrasounds and everything looks great thus far. Our fluid levels are perfect and her heart, brain and bladder look good. Her kidneys were undetectable on the ultrasound which is good- this means that they are not engorged with fluid like Max's were :)  We will be having a level 2 ultrasound with a perinatalogist on May 25th.  This will be a full anatomy scan and will give us a much better idea on how she is doing.  We are still nervous, but are confident that everything is going to be just fine.  We are truly blessed and can't wait to meet her!

Life is good. 

I think our new posting routine is going to be monthly.  If something comes up I will definitely post to keep all of you updated, but things are going very well and we are very busy with the new house, new baby and a very busy little boy.  I will definitely be posting on Thursday to talk about our big three year old :)

Have a great week everyone!

Funeral Arrangements

The layout will be Thursday evening from 4-8pm at Muehlenkamp-Erschell Funeral Home in Ft. Thomas (across from St. Thomas Church).

The mass is at 10:30am at St. Mary's in Alexandria followed by the burial at St. Stephen Cemetary in Ft. Thomas.


Thanks again for all of your thoughts and prayers.

Rest in Peace

A little after 11:00 this morning, Heaven gained an angel. 

Rest in Peace "Pawpaw" Larry.

We love you and will miss you greatly. 

*****

I will post funeral arrangements after the meeting with the funeral home tomorrow morning.

Thank you to all that prayed for his peace and comfort. 

Updates and Prayers

Hello to all of you who are still checking in on us.  I sincerely apologize for the very long delay in updating the blog.  We have had a very busy and craptastic last few weeks.  We ended February with a move back into my parents house after we sold our house.  That went smoothly, but moving while pregnant and with a toddler are both exhausting. 

Max's labs have also sent us on a lovely roller coaster ride.  We believe they are up and down due to dehydration.  We are pumping him full of fluids but also trying to allow him to feel hungry so that he will start eating for us.  There is a very fine line between the two and its difficult to try and keep both his kidney happy and his feeling of hunger in tact.  I am beyond frustrated with the whole process.  I just want my kid to eat.  His problem is that he is stubborn.  He doesn't want to sit down long enough to eat.  He will take a few bites (on his own because he is all of a sudden Mr. Independent and doesn't want us to help) and then he fights with us because he "wans to get down an pway."  He hasn't figured out how to chew anything either so he is still on a puree.  Like I said, very frustrating to say the least.  On the bright side, he is starting to drink a little more by mouth. 

******

We are asking all of you for prayers.  We are also asking that you ask all that you know to please pray.  Some of you may remember that Tim's dad was diagnosed with a brain tumor three years ago.  This brain tumor is now winning.  Despite the couple of rounds of chemo that Larry endured 6 weeks ago, the tumor continued to grow and Larry slowly got worse.  3 weeks ago, it was decided that it was time to stop treatment and call Hospice in.  In 3 short weeks Larry has gone downhill very fast.  Tim came home this evening from visiting with his dad and said that he was no longer eating and could barely talk.  Larry hasn't gotten out of bed since Sunday afternoon. 

I will forever cherish the memories that we have with Larry.  He is a great man with a huge heart.  When Max was in the NICU, Larry was at his bedside a few times a week.  He would always tell me who was praying for Max and all of the stories he would tell the ladies at work about his only grandchild.  He is so proud to be Max's "pawpaw."  You can see his face light up, even now, when Max walks in the room and shouts "PAWPAW!"  Max is the light of his life.

Please pray for peace and comfort for both Larry and the entire Livingston family.  Goodbyes suck,  especially when it could very well be the last time you say it to someone.