our happy new year wishes to you!

happy new year to you

may your skies remain blue

a year filled with blessings

& your wishes come true

peace to you all

no matter your state

love & joy

and never hate

good health all around,

your family, your friends

your income grows

and never ends

those changes you promise

to make each year

are carried through

to bring great cheer...

so now we celebrate

to leave behind

the year of our Lord

two thousand and nine

two thousand and ten

is minutes near

and my wish to you is

a happy new year!!

Merry Christmas--2009

hello everyone, this is Orion. i decided that i should be the one to wish you all a Merry Christmas and Happy New Year because if i waited for my mommy to do it...it would never get done!

i will begin with the most important stuff to talk about...ME! on Christmas Day i will turn FOUR months old! amazing how time flies...it's like my entire life just flashed before my eyes! oh wait...IT REALLY DID! so...what do i do in my spare time (other than blogging)? i already love interacting with others...i can follow you around a room with my eyes...when you pay attention to me, i will smile and coo at you & i love to be held (what baby doesn't?). i get so excited when my big brothers come up to me and give me kisses!!

speaking of brothers...Wil just turned 6 years old in November! we all celebrated it by throwing him a big party at Pump It Up! i had a blast being in everyone's arms and watching all the big kids have fun on the bounce houses (hmmm...maybe i will post some pictures of the fun)!

Wil is just like Daddy in that he loves computers! he could literally spend the entire day learning and playing on a computer...he's able to do stuff that Mommy can't! not only does Wil play educational games, but most of his classes are taught online (Mommy highly recommends http://www.clicknkids.com/ for a fun phonics program). i can't wait to be homeschooled like my big brothers =)

Josh will turn 2 years old at the end of this month (even though he's as big as a 4 year old). Josh loves to beat up on Wil, yet he is so gentle with me =). we think Josh is left handed like Daddy. he loves to color and paint...and pretends everything is a drum (shhhh...don't tell him, but i heard that Santa is giving Josh a mini drum set. Mommy says she's pretty tight with Santa and he tells her things). Josh has definitely become the comedian in the house! if he does something and gets you to smile/laugh, he will repeat it over and over and over again!

Daddy is completing his final year in his Systems Engineering program! it's amazing how busy he is outside of home, yet he always has time to play with me and my bros! i noticed he's a lot of help to Mommy...she is still adjusting to 3 kids when Daddy already has this thing down! personally, i think i'm a very easy baby...i never fuss...i've become a great sleeper...and i'm a breastfeeding champ!

in case you are wondering, my bros and i have a new pediatrician who is taking our metabolic problem seriously. i say "our" because the doc is already treating me as if i have it just to be cautious. the really cool pediatrician who checked me out in the hospital when i was born helped us find this new doc. his diagnosis is that we have our own unique variation of Maple Syrup Urine Disease. we will continue to undergo testing and labwork. up to this point, everyone has been healthy. Mommy is still paranoid about me because by the time Josh was my age, he had 2 episodes where he stopped breathing...so, she makes me sleep on an apnea monitor to be safe.

some exciting family news is that my Mommy's sister, Candice, is expecting a baby girl next year...and Mommy's cousin Kristin is expecting a boy! i really can't wait to play with my new little cousins!! holiday gatherings will be sooo much more fun!!

ooo...talking about holiday gatherings gets me back on track to my main point...

on behalf of my family, i would like to wish you all a VERY Merry Christmas and a Happy New Year! and remember...Jesus is the reason for this season!!!

love,

Orion & Family

Welcome, Orion Ashton Tanksley!!!!

(Orion 6 days old)

Orion was born Tuesday, August 25th, 2009 @ 1:16am at Palomar Medical Center!! He was 6lbs 5oz and 19in long!! His due date wasn't until today, but I had to be induced early because my amniotic fluid levels were dangerously low (2.8). Back in July I was diagnosed with gestational diabetes, so I was undergoing bi-weekly ultrasounds and non-stress tests to make sure Orion was healthy and not too big! Amazingly, he popped out TINY...at least compared to his bros who were both over 8lbs!

Orion is such a sweet baby! He's perfectly content unless I am slow to feed him or change his diaper LOL Wil & Josh instantly accepted Orion into the family...they came to visit us in the hospital and gave a gift to Orion (the bear blanket in the pic). Orion is such a wonderful addition to our family!! If you would like to meet him while he's still small, we will be having an "open house" for friends and family on Sunday, Sept. 27th...contact us for more details if you would like to visit =)

We finally have some additional and good news re: the boys' metabolic disorder! The pediatrician who cared for Orion post-delivery in the hospital took very seriously this "rare" metabolic disorder that Wil & Josh have...especially since Orion has a very high chance of having it, as well. He helped us find a new peditatrician within Kaiser who is also taking it seriously. Because this disorder is very close to Maple Syrup Urine disease, the new doc is not only going to treat Wil & Josh as though they have MSUD...he is also treating Orion as if he has it! This is great news because it can potentially save Orion's life (MSUD and other metabolic disorders are a cause of explained sudden infant death). All 3 boys will undergo labwork and testing this month, which won't necessarily tell us anything.

We wish you all a fun and safe Labor Day weekend! Can't wait for you to meet lil Orion!!

Love,
Melissa & the Boys =D


If you want to see more pics of Orion and the fam, check out these amazing photos from our photographer's blog http://www.sharilynnphotography.blogspot.com/

It's a BOY!!!!!

OK...this post is way overdue! On April 9th, we found out we are having ANOTHER boy!! This came as a little shock because the ultrasounds from 12-16wks looked like a girl more and more each week. The day of the BIG ultrasound, I even dressed in pink from head 2 toe to "celebrate" the official news--OOPS!!! Don't worry...it was a wonderful surprise to find out we are having boy #3!! The thought of having a daughter kinda made me nervous...I have the whole boy thing down, not to mention all the clothes we need LOL (although, I did think of taking all the white baby clothes and washing them with a red shirt to save money). The pregnancy is going great, but we did have a little scare this past weekend with having contractions every 2 minutes for 5+hrs (I'm only 30wks)...I was in the hospital on 2 different occasions to get medicine to stop the contractions...they finally sent me home with a prescription to take if the contractions came back. Since Monday, I have been contraction-free! Oh, you want to know the name we've picked...it's still a secret because it keeps changing!??!??!

An update on the boys...NOTHING NEW in the area of medical care! It doesn't look like Kaiser will do any research on their unique conditions...they will just have yearly follow-ups with the geneticist. The great news is that, since monitoring their diet, we haven't noticed ANY maple syrup smell since March!!! And, they've both championed through high fevers without complications!

Joshua--just turned 1 and 1/2yrs this past Monday!! He's getting around fast on his feet, as well as getting into EVERYTHING!! He absolutely LOVES to make messes...we think this is partly because he knows his big brother Wil HATES messes...he does it TOTALLY to annoy him LOL He also likes chasing Wil around the house and beating him with a drumstick =) Joshy already has 4 molars in, which is perfect for him since he eats anything he can fit into his mouth! Despite his enjoyment for trouble, he is a VERY affectionate little boy...he even runs up to kiss mommy's belly =D On June 7th, we had Joshua's baby dedication and North Coast Church and then followed it with a pizza party at Trupiano's.
Wil--is 5 and 1/2yrs old and absolutely LOVES being a big brother...and a big helper to mommy, as well! He's really into helping mommy & daddy with chores around the house! His speaking skills have improved dramatically! He has 1 adult tooth on the bottom and is about to lose his 2nd tooth--he's looking forward to seeing what the Tooth Fairy brings him for his next tooth =) Wil enjoys painting, playing on the Slip-n-Slide, his giant pirate ship, making new friends, playing with his cousins, going to church, playing tennis & baseball.... He keeps telling mommy to go to the doctor's bed so we can get the baby out of mommy's tummy. It's amazing that he remembers so clearly about when Joshua was born! It took Wil a while to be happy about having another brother...he REALLY wanted a sister.

Billy & I celebrated our 8th wedding anniversary on June 9th! Since we didn't make it out to Vegas this year to celebrate, we did the "at home" fun version which always includes taking the kids to the Zoo (Billy's company has their yearly Zoo day around our anniversary), and taking the boys to see a Pixar movie (this year it was "Up"--and yes, Pixar always releases a movie around our anniversary! Clearly, we are important and the world likes to celebrate our anniversary with us!!) . Later, we dropped the kids off with Billy's parents to enjoy a lovely date on our own!

Besides being busy, I blame my lack of updates on Facebook. Facebook seems to be the place we stay connected with people now because it's so easy...you can even update it via cell phone =) So, if you want to know exactly when we go to the hospital to give birth...start a Facebook account! http://www.facebook.com/melissa.tanksley

Hope everyone has a wonderful and safe 4th of July weekend!! We are looking forward to starting our week-long vacation at the Oceanside Harbor tomorrow =) Wil can't wait to use his new "surfboard" (it's really a boogie board)!!

Answers without answers

Spoke to the geneticist today...he said both Wil and Joshua have medical conditions that have stumped the medical community. They possibly share a common problem, but Wil has his own unique issue (kinda).

Joshua--it is certain that Joshua has a partial disorder of MSUD. His body cannot adequately breakdown leucine and isoleucine, but he seems to not have an issue with valine. Leucine is the most dangerous...if he eats too much protein, leucine will accumulate in the blood and become toxic to his brain. Excess leucine is the cause of the maple syrup smell in their urine. They haven't caught abnormal levels in Wil's tests, yet...but because his urine does smell like maple syrup on occasion, they have not ruled out that he may have the partial MSUD, as well. The other problem with this disorder is that they (at least our doctors) don't know how to treat it. The geneticist does not think Josh will benefit from the medical foods for MSUD (they provide protein WITHOUT leucine, isoleucine, & valine). Our basic "orders" are to 1) avoid fasting, 2) take him to the hospital for glucose (MSUD) treatment if he has vomiting/diarrhea/signs of a crisis...and maintain a low to moderate protein diet. The praise is that it "appears" that this partial disorder is easier to manage than full MSUD...but we need prayer because the doctors are not confident in how to treat it.

Wil--his extensive genetic testing came back today. He apparently has a chromosome abnormality that has NEVER been reported in the history of medicine...he is the FIRST child/person on record!!! Because of this, there is no name for it...all we know is that he has at least 38 extra genes in chromosome 8...this may or may not be a cause for his delays (which may also have been caused by a partial MSUD). It turns out there is a SECOND person reported with the same genetic abnormality...after Wil's tests came back positive, mine and Billy's blood was tested and it turns out that Billy has the same abnormality!

Both kids will continue with genetic follow-ups. We are actually seeking a second opinion now that all the results are in. Pray for us because we expect to battle through the system...we are not satisfied with the answers...especially because they do not know how to treat the partial MSUD disorder, which could put our kids in danger. We have also experienced a lot of incompetence on Kaiser's part through this whole process.

Since the last tests, they do not believe that Fatty Acid Oxidation Disorder (FOD) is an issue any longer.

As for me and the pregnancy, we are doing much better! I started my 16th week today...I've been off bed-rest and have been taking care of the boys on my own!

Thank you for your prayers, uplifting emails/letters, and generosity to our family! We are eternally grateful!!

Blessings to you all,

Melissa & Family

Baby sounds good, still no answers for the boys

I had my OB apt yesterday...I'M OFF BED-REST!!! I'm still not suppose to lift heavy things (ie, Joshua). They didn't do an ultrasound this time...just a doppler, but the baby's heartbeat was strong and at a normal rate!

I heard back from the geneticist this week...with no real answers, unfortunately. It appears some of the test results were different. What has been consistent is that Joshua is having issues with 2 of the 3 amino acids involved in MSUD...because all 3 do not appear to be involved, they don't call it MSUD. We have to make sure he doesn't fast...if he gets sick for any reason, we have to take him in to the hospital to have his amino/organic acids tested...and both boys will stay on a low-protein, low-fat diet...they will also go to the lab every few months to have their amino/organic acids tested. It looks like it will be a LONG time before we get a real answer...we will also be seeking a second opinion (possibly even a 3rd outside of Kaiser). Oh...and Wil's genetic testing is still not back, yet.

Pray for Billy today...he has his final presentation for one of his classes! At the completion of this class, he will be half-way through his Masters program (and hopefully getting a raise since he will have a Certificate in Systems Engineering).

Please also pray for my father...he has been so gracious helping me care for my boys...but lifting Joshua has really put him in a lot of pain (he's had back problems for several years).

Baby doing great!

Day 1 of my 13th week of pregnancy! 2nd trimester, already?!!!!!

Today I went in for another ultrasound...the baby is very healthy and active!! It's amazing how fast (s)he's grown in just one week! We also got a clear pic to take home that confirms the sex we suspected last week...but it's still early?!?!?!?! No, I won't be posting that pic on here just yet =)

I'm still ordered on bed-rest and no heavy-lifting (missing carrying Joshua around) until my next apt on the 4th. My wonderful dad is helping me take care of the kids when Billy is at work!

Because things are looking up, I went on a quick shopping trip with mom-in-law to buy a few maternity clothes that I can grow into =)

Thanks, again, for your prayers!

Update on pregnancy!

Day 1 of my 12th week of pregnancy

*warning to guys/children--graphic wording

Thank you all who were already praying! For those that don't know, yesterday I started to have heavy bleeding without cramping. My wonderful mother-in-law picked up the boys...Billy came home quickly...and I stayed in bed until this morning. The bleeding finally slowed down. We had an apt with the OB/GYN this morning. I was expecting to find out there was no heartbeat. Instead, we had a twist of events...

The doctor found a very strong heartbeat with the doppler. When she did the ultrasound, the baby was very active. What none of us expected to find...I had been pregnant with twins and didn't know it!! I said "had" because one of the babies didn't make it and now my body is trying to pass its remains. Because of this, it puts the live baby at risk. I've been ordered on bedrest and have a follow-up ultrasound next week. If I develop any cramping or labor pains, it means the live baby could be miscarried.

Although the thought of losing a twin is painful, we are blessed that the baby we've been "expecting" this whole time is strong and healthy! Please continue to pray for this little one! Pray that Billy's work can remain flexible (he's taking the rest of this week off to stay home).

As for the boys' test results...they still aren't back, yet.

Oh...and...we already know the sex of the baby...but mum's the word for now =)

the lab messed up...

It really seems that "patience" is the theme as of lately....

Many of you already know that we went to have labs done last Friday...only to find out that the orders were not in the system and that we HAD to have them done at Zion (we were at Carlsbad). We fasted the boys Friday for tests that were never done...fasting is NOT healthy for them. Well, after making an apt for Monday (Feb. 2, Melissa's bday) and verifying the orders were in the system, we got the labs done on all of us...but had to wait there for 2 1/2hrs because Joshua would not pee (and he could not eat/drink because it was suppose to be a fasting specimen--oooo, he was NOT happy watching Wil eat and drink...he even tried to take Wil's food away from him lol).

I got a phone call from the geneticist today apologizing...apparently the processing lab received mommy & daddy's blood for the genetic test needed on Wil, but they never received Wil's. And, the lab drew blood on the boys for lactate dehydrogenase INSTEAD of serum lactic acid!! The doc said all the labs were in the system now. I called down to Zion to verify the labs were in the system and to make an apt. But come to find out the genetic test for Wil was not in the system and it required a hand-written order that we had already given them on Monday...they said they would not accept a copy that I had made!! After several phone calls and finally talking to a lab Supervisor, they accepted a FAX of the copy of the order I had.

Please pray that the labs go smoothly tomorrow and nothing is missed (they also forgot an important lab on Wil back in December)...we have our apt at 7:10am. The boys have to have everything repeated because the lactic acid has to be done at the exact same time as the others for accuracy. They also have to fast again.

Not exactly what we thought...

Well, today we took the boys in to meet with the geneticist. We were hoping to get a "yes" or a "no" on whether or not they have Maple Syrup Urine Disease (MSUD)...we were definitely NOT expecting what we were to actually find out...

At this point, there is no CLEAR answer as to what they have...but the organic acid analysis on both boys suggest they DO have a rare and life-threatening metabolic disorder. Because the enormous amount of red flags point towards a Fatty Acid Beta Oxidation Disorder (LCHAD, MCAD/MCHAD, etc.), they are focusing there. We will just call this FOD for now, since the exact one has not been nailed down. FOD is easier to deal with than MSUD because they can eat a lot more foods. But like MSUD, a minor cold or ear infection can lead to a crisis. The nemesis of FOD is vomiting...any type of fasting can send them into a crisis. We were lucky to discover this in the manner we did...20-25% of patients that have FOD and are NOT diagnosed at birth usually die during their first crisis. Because we caught this before a crisis, their chances are very good. And like MSUD, FOD is an inherited disorder...so our new baby on the way has a very high chance of not only having this disorder, but having a more severe form...Wil and Josh might have a mild form.

It turns out that the lab FORGOT to test Wil's blood for MSUD...but both boys will undergo the same amino acid and organic acid analysis. But like the doctor said, "MSUD is the small fish...we have bigger fish to fry". Wil will also undergo more in-depth chromosome testing because the doctor noted some physical irregularities that may be linked to his delayed speech (but his delays may also be related to FOD). They want to test Billy and me, as well.

We will also be seeing a metabolic doctor after the labs come back. Wil's chromosome testing will take a month to get results since the facility they use is out of state.

Your prayers and patience is MUCH appreciated! We ask for continued prayers...not only will it take a while for an exact diagnosis...but this condition is lifelong.

We believe God will use this for good...we might be able to touch lives in ways we couldn't before. Our goal is to allow the boys as normal of a life as possible =)


Blessings,
Melissa, Billy, Wil, Joshua, and baby

Being Referred to a Geneticist

Well...I just heard from our pediatrician who says he is referring us
to a geneticist when he returns from vacation on the 21st. No other
details were given. I don't know what to think about this. I know we
would be referred to a geneticist if they do have MSUD (or other
genetic disorder)...I can't think of a reason why we would be referred
to a geneticist if everything turned out normal. I'm still trying to
process this information...I don't want to read too much into it. But,
as an RN, I know that doctors do not give out referrals to specialists
unless there is a concern that may require their expertise.

I praise God because I know His hands of protection are on our sons!
Please pray for our peace...waiting is hard...and it looks like we
might not get a definitive answer until February.

Good news...but...

We finally got some results back from the DNA/Chromosome Analysis...that showed that Wil does not have Fragile X and an array of many other possible things we were concerned about. It is possible that the Chromosome Analysis may not have been at a high enough resolution to analyze the specific locations where MSUD mutations normally occur (the Chromosome Analysis was ordered to look for other things and not MSUD). And, we don't have the test results for the specific tests that rule out MSUD (organic acids, amino acids...which can still be normal in the Intermittent variant of MSUD)...if these acid tests are normal, we will ask for an Enzyme Assay to see how much enzyme activity they have (this should be the final determination to see if they have MSUD).

So, we are still waiting...but happy that the results we've seen, so far, look good! Thank you for your continued prayers!! The boys are doing well and are as energetic as ever! I'm doing well with this pregnancy...just some fatigue and no morning sickness.

Thank you all!

Still waiting...

To all our faithful prayer warriors!

I'm writing to let you know that none of the results are back, yet.
God has definitely showed me that I lack patience...and through this,
He is teaching me how to be patient. Even though the doctor said the
results would be back in a week (which was this past Monday), we are
aware that chromosome analysis is delicate and time consuming...we
would rather them take longer and be accurate than be quicker and miss
something important!

As for the boys, they are doing well! They are even tolerating the
low-protein diet I've been making them...but Wil REALLY misses ice
cream.

We do have some news that can use some additional prayer! On the day
the boys were tested, we found out I'M PREGNANT! We were definitely
trying for #3...until the possibility of the boys having MSUD came up.
In addition to praying for Wil and Joshua, please pray for this new
little baby...if Wil or Joshua has MSUD, this one would have a very
high chance of being born with the most common and deadly form of
MSUD.

Thank you for your prayers! God bless you all!

~Melissa, Billy, Wil, Josh, & ?

NO RESULTS, YET!

it's beginning to drive me insane...just the waiting...thank you for your prayers!