Brayden's Story- Our journey thru life with kidney disease and transplant.: 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!