Update on the Boys

Thank you ALL for your prayers and notes of encouragement...they bring so much comfort to us!

Well, today was the day we saw the doctor...he ordered all the labs necessary to rule out MSUD, including comprehensive genetic testing on Wil. Unfortunately, the lab results that will tell us whether or not they have MSUD won't come back until NEXT WEEK =( because Kaiser does not have the equipment nearby to test for MSUD. However, we did get urine results back...urine can't diagnose MSUD, but it can tell us if a patient was in a metabolic crises...both boys tested negative (that's a good sign) on that...they also tested negative for diabetes (which can make urine smell fruity).

We will continue the low-protein diet until all results are back.

Poor Joshy wasn't expecting to be a pin cushion on his first birthday...but he took it like a champ! Wil, on the other hand, required mommy's arms AND legs wrapped around him...one lab tech holding his head and two at his arm...even after all that, he had to be stuck an additional time because he managed to move!

And, for those who have been asking...Joshy's party is still on for this Saturday =) His cake will be protein-free, but you will have a real cake to eat =)

We appreciate your continued prayers as we wait for answers! At any time you need prayer for you or a loved one, we are there for you!

With much love,

Melissa & the Boys

ps...here is web info on Maple Syrup Urine Disease
http://emedicine.medscape.com/article/946234-overview
The boy's would have the "Intermediate" variant, which usually presents at 5 months to 7yrs of age.

Pray for Wil & Joshua

friends and family...

billy and i are pleading for prayer for our boys! i wasn't going to send a prayer chain out until we completed the testing, but prayer NOW is best! you are welcome to forward this to anyone.

BOTH of our sons might have a severe and life-threatening metabolic disorder. we find out Monday through testing. it's called Maple Syrup Urine Disease...they would obviously have the very rare mild form. but...what it entails is a life-long diet (strict vegan, low-protein) and blood checks. they would also have to consume a special formula with the amino acids broken down for them. stress, injury, or illness can cause them to go into a metabolic crisis where they would need dialysis and IV therapy. this is something they will have the rest of their lives...if strict adherence to the diet and lifestyle is not met, they can die.

a few days ago, i noticed that Joshua's--he will turn 1 ON the testing day, the 29th--urine smelled like maple syrup. it wasn't a new smell to me because Wil's urine has smelled that way all his life. so, i went to Google my finding...wondering if it was just a "mom" thing. to my horror, i found that the ONLY possible explanation was MSUD (even as a nurse, i had never heard of this). i was quickly on the phone with Kaiser Permanente (who is taking this seriously). instantly, we started them on a vegan diet. (we had started Joshua on cow's milk a few days prior to this, which is high in protein.)
Wil (5yrs) was diagnosed with Sensory Processing Disorder this year for delayed speech and motor problems...we now know these could be possible symptoms of MSUD toxicity. despite his delays, Wil tested at Genius level in IQ during his assessments.

we ask that you pray that our sons do not have this disease or any other disease/illness. if they are diagnosed with MSUD, continued prayers would be MUCH appreciated. some praises that i can already see out of this even if they do have MSUD is...
1. they have the VERY rare mild form
2. their health, to this point, has been well (other than Joshua's near-death choking episode last Feb. which still ended positive)
3. i know God made me a nurse just for them!
4. i'm already a home-school mom
5. Billy has a great job with excellent health benefits and a flexible schedule

i will update you as soon as we know anything.

i hope you all had a Merry Christmas!

~billy & melissa