Progress

The Pediatric Dialysis Unit (PDU) at Levine Children's Hospital is holding a "Kid-tucky Derby" to promote healthy diets. Every month has a theme or focus that the patients will learn more about and try in incorporate. January's focus was having a low sodium diet. Evan and Eli played "Low Sodium Bingo" to learn which high sodium foods to avoid, learned how to read a nutrition label, and were even quizzed on all they were taught.
The dialysis shift (they are on MWF morning) with the best average of monthly lab work won a party. They DID it! They celebrated during dialysis with decorations, balloons, and home made low-sodium "Chex Mix".
 

                                                                     Eli's Certificate

Donor testing for Bryant (dad) and Evan is 90% complete! The Selection Committee meets next week for the final approval and to set the transplant date and schedule the OR. We have been told it could be as early as the end of February!

The Blue and Green 5K fundraiser has been moved to Saturday, May 11. Click on the link to register to run, walk or volunteer!

A New Normal

A LOT has changed for the Haines family in the last year.

We found out in August that Evan was in kidney failure. He started on dialysis the next day and has been going through dialysis 3 days a week since then. He suffers from a rare genetic disease called Nephronophthesis. The doctors suggested we have the other boys tested. I added it to my list of things to do...

By October we were settling into a routine when I brought the kids to the lab and had their blood drawn for the test. The next morning at 7:30am I received a call from the pediatrician. Garrett and Noah were clear, Eli's blood work was not normal and he wanted to repeat the test to make sure it wasn't an abnormality. We returned to the lab and blood was drawn. The test was confirmed. Eli is also suffering from kidney failure. The Nephrologist called me at home and told me that there was a bed waiting for Eli at Levine Children's Hospital. We packed our bags (knowing this time what I would and would not need to bring) and headed to LCH.

Within the week we had two boys on dialysis every Monday, Wednesday, and Friday morning.

THIS is our new Normal.

There is a whole new vocabulary that comes along with a chronic disease.  Hemo-dialysis, Perm Cath, dry weight, fibrin sheath, BUN, hematocrit, binders.... you get the idea.

The thing that still gets me is that I know more about the disease my boys have than most doctors.
Nephronopthesis is really rare. Our Nephrologist said for him to see one case in his career was rare, but to see two was unthinkable.

This disease is caused by combining two recessive genes both Bryant and I carry.  The odds of our children getting the disease is 1 in 4. We had to go the extra mile!

So what does all of this mean for our boys?

Kidney Disease is treatable but, NOT curable. -- My boys will have this disease the rest of their lives.
Dialysis is keeping them healthy until they can receive a transplant.
Bryant and I are just beginning the testing to see if we are suitable donors for the boys.
Once a transplant is performed the boys will be required to take many pills a day to prevent (slow) the rejection of the new kidney.
The "new" kidney will likely only last 5-15 years. At some point the boys will have to start dialysis and wait for another kidney. Luckily for them they have a big family... two brothers, lots of cousins.

Another thing we're learning about is what's covered by insurance and what's not. We're full swing into our fundraising efforts through ActiveCharity.org.

If you'd like to learn more about kidney disease go to www.kidneyschool.org

Post Much?

I know, I know! It has been WAY too long since my last post. I have thought about it many times over the summer but then think of all the time pressing tasks at hand and put it off (again).

Well get ready for this... a SUPER Summer Update! (Mono-Blog!)

May 28th - (the date of my last post) Was Noah's 11th birthday. We went on a date to celebrate!

The first week of June was filled with field days and school recognition ceremonies. We spent the weekend with family at my nephew's baptism!
The second week we had Noah's moving on (to middle school) ceremony. And watched him perform in the 5th Grade Talent Show!

I will post the video here soon!

(Ryan on guitar, Noah on drums and Andy singing the song he wrote!)

We spent the 20th - 24th of June at Cub Scout Day Camp with over 200 boys ages 6 to 11. I was the program director, Garrett volunteered at the BB range, Evan worked with the kids in the Me Too (siblings) camp, Noah and Eli participated as campers. My dad even helped out all week as a Quarter Master. He kept the coolers full of ice water, transported equipment, plunged toilets... you name it, he did it and with a smile to boot! I love my dad!

July brought an addition to our family with my baby sister's wedding to Dustin Marshall.
We all worked tirelessly to put together a reception for her and it turned out great! The days following the reception the rest of us Woodward kids and our families spent at a beautiful house on Lake Wylie. I love my family and am so grateful for each and everyone of them. My siblings taught (tried to teach) Garrett how to dive. Erin and I bravely performed back dives! I hadn't done a back dive since I was a teenager at girl's camp! We had cannon ball contests and the kids fished off the dock. Monday evening my parents stopped by on their way home from dropping the newlyweds off at the airport. Not having their swim suits with them, my dad borrowed some trunk and my mom just jumped in fully dressed! I can't say that I blame her. We were having a lot of fun and she was missing out.

After my family left (boo hoo) we spent a week gearing up for home school. Yes, you heard correctly. We decided early last year that we would home school the boys this year.

On August 1st Garrett and Evan headed for a week at Scout Camp and Noah and Eli and I started our first day of home school. Currently we school Monday thru Thursday. We aim to start at 8am everyday but letting go of the summer schedule has been difficult for some of us, including me!
We are learning Spanish, Math, Science, and for Literature the older boys are currently reading The Giver by Lois Lowry and the younger boys are reading The Secret School by Avi.
So far it is going well, not without some hiccups, but well.
I am staying busy with the planning and "teaching". I hope that once we get into a groove, my planning will be easier/less time consuming.

Well that is all we did this summer! It went by way too fast.

How was yours?