Well, at least somebody's world isnt upside down

At the moment, its kinda hard for me to say Our life is "normal".  Not because our life is not normal but because all of our friends lives are halfway upside down. 

Kyle makes fun of me because I have become attached to all of these other kids that I have never met but as a mom of a sick kid, we tend to get attached to other mom's and their babies that have similar issues.  We can speak the "language" and they understand it without having to try to explain the little details.  Its just easy!  I know I have said it before but I will say it again...Yvette, Laura, Beth, Tara, Tiarra, Jessica, Shelly, Karen....YOU guys are what has gotten me thru this whole thing.  I just wish I could fix your kids too (those that havent been transplanted yet)

"Our" babies are having so many issues.  Brandon has had major G tube issues and had to have another surgery to fix it.  They have been in Cinnci since May 13th and will be there another 2 weeks or so.  He just got out of a 17 day hospital stay.

Summer has had to have her 1/2 parathyriod glands removed and is having heart issues that are from her fluid management and is in the PICU at Cincinnati. 

Max is in the PICU at Cinnci too, he has had a horrible month of June having to have several surgeries to fix his PD catheter when they should just leave it along and transplant him already!!!!!  His transplant date is July 27th.

Aidan is having some weird breathing and blood pressure issue and has been in the PICU for several days now and they dont really know what's going on.

Matthew has had some GI issues that they are working out but have scared Karen to death with just the mention of cancer.

Luckily, Bryan, Finn and Logan have been doing ok (besides Finn and Logan being toddlers and brats just like mine)

We (as in the PruneBelly community) lost a little fighter this week.  Conner was 7 years old and is the only person in the world to have Prune belly and Cystic Fibrosis.  He fought long and hard but God took his suffering away and now he is breathing easy in heaven.  If you want a good cry or want to read the most eloquently written eulogy to a child, read his mom's last entry to his blog  http://www.notsobrightandshiny.blogspot.com/ it is amazing.

Brayden however has had a fairly normal month.  We are still doing labs every week.  They were a little off one week but a few days later after a few minor medication adjustments everything was back to normal.  His Prograf level was way low but we figured out why and have since fixed it.

He is progressing in his motor and speech skills like I have never seen before.  At last count, he says 30 different words...only about 15 per day but who says every word they know every day?  His motor skills are moving leaps and bounds...well, maybe not leaps!  He has figured out how to go from lying on his tummy to sitting and is SOOOO close to crawling!  His lil legs and hip muscles just arent strong enough to support his big body plus he still goes backwards when he tries to go anywhere.  He is starting to "walk" when we hold most of his weight off of the ground and all he has to do is step.  He can now stand for a min or 2 at a time and almost balances by himself.  PT is doing wonders and going 2x week has helped SOO much.  Speech is working (or something is) because he has taken several bites of Oreo (double stuff cream) and liked it.  He has learned to drink out of a straw and does pretty good at it.  We still do the G tube thing but now he is getting only 4 feedings during the day and 2 bolus feeds at night.  I think he is actually starting to "feel" hungry for the first time in his life. 

Its a weird thing that only a few parents in the world understand when your kid doesnt want to eat.  Eating is such a natural thing but my kid doesnt equate eating food with getting full.  He gets full because of that lil tube in his belly.  We are "teaching" him to eat and to like food.

Otherwise, life is good.  Life is NORMAL!  We only go to the doctor once a month now.  We have never gone this long without seeing Dr Malagon.  I still talk to her at least once a week but its just weird.  Change is good but change is slightly scary. 

Brayden is 16 months old and is 30.5 inches tall, weighs 25 1/2 lbs and has 6 teeth.  He is learning and growing just like all the other kids....Our goal when he was born was for him to be transplanted before kindergarden, now it is for him to be caught up in all of his milestones by kindergarden and he is well on his way!

Way to go Brayden....That's Momma and Daddy's little fighter!  We love you more than you could imagine!

Playing in the lake

Momma's lil cutie

Speech therapy is fun!! (and messy)

Big boy

Slightly distressed and throughly ticked off

Yesterday, I received some distressing news.  Brayden's nephrologist, Dr. Mericarmen Malagon-Rogers is shutting down her dialysis clinic.  There will be no pediatric dialysis at University of Tennessee Medical Center.  She hadnt told us yet (We are supposed to go see her next week and I figured she would tell us then) but another Mom got to it first.  I am glad she did but so sad that it is happening. 

Dr. Malagon started at UT in 1985.  Since that time, UT has done 85 pediatric kidney transplants.....85!  85 kids under the age of 18!  OBVIOUSLY there is a need for a pediatric kidney transplant program.  From what I was told, Dr. Malagon asked UT for help with the clinic, she asked to get another Peds Neprologist to help her with call and rounding on her kids.  Dr. Malagon has a family practice office also that she must share her time with.  This has become increasingly hard for her with the increased amount of kids that she has had.  The 3 youngest, Brayden-Brandon-Summer, came in last year within 4 months of each other.  Brandon and Summer ended up being on Hemo for several months and Summer was on until just last month.  She took wonderful care of these kids.  If it weren't for her, there is a big possibility that neither one of them would be here. 

If Dr. Malagon had not been Brayden's doctor, I dont think he would be where he is today.  It was always in the back of my mind that there was the possibility that we might lose our precious baby boy but it never crossed the front of my mind because of Dr. Malagon.  I never had to worry that my boy would get so sick that we might lose him, I knew that she would catch it before it got that bad.  I worried alot but I worried less because of her.

It also occurred to me that Brayden was the last pediatric patient to be transplanted at UT.  Without Dr. Malagon to do dialysis, there wont be any transplants goin on.  The new dialysis kids will have to go to Atlanta, Vanderbilt, or Erlanger.  When/If we have to go back on dialysis before Brayden's next transplant, if Dr. Malagon isnt doing dialysis still, then we will do dialysis at Vandy and then try to transplant at UT with our docs. 

Dr. Malagon will continue to see the post transplant kids but I just cant help but think that eventually there will be kids that are going to need her and she wont be able to help them because she is over-extended already.  Dr. Malagon asked UT for help, they wouldnt help her.  She asked East Tennessee Children's Hospital if they wanted to take over the dialysis program and they declined.  SO, the dialysis program will go away. 

Its a shame and I would say almost a crime that these huge hospitals wont help her out and save so many more kids lives.

Im just glad we got to be fixed before she had to quit!  Thanks Dr. Malagon