Die Dumplings Die!

Today is the day we are attacking the dumplings growing out of control in Trayvon.  He lovingly named his fast growing tumors, dumplings and his slow growing ones, biscuits.  When the doctor came in this morning to discuss his plan and shared some possible side effects of the meds, he simply stated; "Die dumplings die."

To back track and let you know why we are where we are today, I thought I'd share how the plan changed from day one to this moment.

July - Trayvon's EBV levels had increased significantly.  EBV stands for Epstein Barr Virus.  99% of the world population has EBV and most experienced the virus as a simple cold, never even realizing they had caught it.  For some it elevates to the classification of Mononucleiosis.  The virus is more aggressive and can cause severe throat pain, spleen enlargment, and high fevers.  This is not rare but also not super common.  Almost all recover with no further issues.  However. . . . if one has a compromised immune system, either due to systemic infections such as HIV or take immunosuppression medications (specifically ones that decrease T-cells (the cells that target EBV) then the EBV can multiply out of control.  This is what happened to Trayvon.

Over the course of three months Tray had lost 17 pounds, had difficulty eating, was very fatigued and needed blood transfusions due to low red blood cell counts.  But he did not have a diagnosis that gave us a reason for these issues.

August 24th - Tray has a severe pain in his side.  Thinking he had a possible appendicitis, I took him to the pediatric urgent care.  (he has horrible veins and pediatric nurses are so much better at getting IV's).  However, due to the tenderness, firmness, and severe of pain in his stomach, they sent him over to the ER.  Here he was put on the adult service.  Due to  Trayvon's unique anatomy (he has many of his organs flipped on the opposite side of his body) we were not even sure where his appendix was, so they did a CT scan to identify and determine if that was the issue.  It was there that our new journey began.  It was found that he had a large mass in his intestines, most likely a malignancy. While in the ER he recieved a temporary central line in his arm, recieved a blood transfusion and was eventually admitted to the adult oncology floor at Upstate University Hospital.

The adult world of medicine SUCKS!  Nothing can be done in an efficient manner.  All of his tests he needed were going to be spread out all over the week.  We contacted his transplant team in NYC where they arranged for us to meet with their oncology expert and complete all of the necessary testing in one trip to the OR.

August 28th - we went to NYC via ambulance for a full workup.  CT scans, x-rays, blood, spinal tap, bone marrow aspirate, upper endoscopy, lower endoscopy, hundreds of biopsies, and adnoide removal all happened in the OR.  The adnoide tissue proved to be EBV positive and progressing towards malignancy.

August 31st - returned home to await the results of the pathology report.

September 5th - results show pre-cancer masses called PTLD (post-transplant prolyphorative disorder).  These abnormal cells were in his spinal fluid, bones, lungs, liver, intenstines, and neck area.  The best treatment was called cytotoxic t-cell therapy (CTL).  The CTLs are actual t-cells (the cells his immunosuppression killed off) taken from donor patients.  These cells have all been exposed to EBV and quickly and efficiently kill it off.  He would get an infusion and the goal is that the CTLs would seek out all EBV and kill it, and with the virus gone, the tumors would disappear too.

September 11th - To be admitted onto the CTL study, a patient has to fail another standard therapy,  So Tray had a dose of medication that is specifically suppose to work on this particular type of tumor.  Then we had to wait three weeks to see if it worked.

October 11th - Tray has a PET scan in NYC and meets with the study doctor.  He appears well so he signs the paperwork for the trial.  The PET scan shows advancing disease.  He qualifies.  They return home that evening.  While in the car, his stomach starts to hurt more.  Over the course of Saturday and Sunday the pain increases and becomes more continuous. By Sunday night, he was in agony.  I brought him to the ER where they did a CT scan and found many more new tumors.  The CTLs were going to be ready for infusion on Tuesday so the team had hoped he'd stay stable long enough to get to NY for the trial.

October 13th - admitted to the pediatric oncology floor.  Upper endoscopy shows two large tumors in stomach. Biospy shows a fast growing malignancy called Burkitts Lymphoma.  Trial in NYC is no an option.  He is no longer stable enough to leave the hospital.  TPN  (IV nutrition is started) consultations begin to identify the best chemotherapy regime to start.

October 20th - Die Dumplings Die!  Vincristine, Cytoxan, Prednisone are on the menu today.  Tomorrow he has a spinal tap to check for cancer in his spinal fluid and will also get chemo into his spinal fluid.  If there is no cancer, he will get chemo as a prevenative measure once a week in his spine.  If there is cancer, he will have to do it three times a week.  He will be in the hospital for at least another week.

Today he started writing a book.  He is thrilled to have a plan and has a positive attitude the majority of the time.  He is amazing!!  

Well, hello and long time no see. . .

It's been a long time.  I have been thinking about posting and just felt life was happily moving along so no need to really worry about it.  Then the other shoe fell. 

Before that though, I'll run through a few things that have been happening since the last update. 

1. Kids went and got older, despite me telling them not too. 
Annette is 29.  Oh that is so much harder to see than say!
Joshua is almost 24 (September 21st)
Tray is almost 21 (November 7)
Marriela is 17
Cody is turning 14 (September 9th!) and
Sergio is 13. 

2.  Some kids graduated, moved on to new schools and stopped going to school altogether. 
Joshua graduated three years ago.
Tray graduated last year.
Marriela is set to graduate in four more years.
Cody is also set to graduate in four more years (BIG graduation party!) and has started at the high school.
Sergio no longer goes to school but has everything provided at home through the homebound program.  This is working wonderful for him and he's been incredibly healthy.

3.  We moved.
We moved into our previous house the day before Christmas eve 2002 with three children (Annette, Joshua, and Tray.).  It served us incredibly well!  We went through many, many challenges in that home and it held both heartbreaking and breathtaking moments of love and pain.  We adopted 2 more children, fostered another that sadly passed, and cared for our nephew, having as many as 8 kids at a time in the house.  Hard to believe all we went through!  But it was getting far to small.  We found the house that perfectly met our needs last year to allow our growing children room to move and spread out.  In June of this year, we moved in.  I spent the summer unpacking, cleaning, painting, and planting to make it our home.  We LOVE our new home and it is only a few blocks up the road from our old house. 

4.  I finished my second masters, this one was in Special Education, so I can maintain my position as a special education teacher in the Syracuse City school district.  This is my tenure year!  I love my job and my school. 

     Peter finished his masters in Mental Health Counseling, worked at Vera House for almost 4 years and now is doing private online sessions and in home family counseling in the Syracuse area.  He loves the freedom and flexibility he now has to adjust his schedule to meet the family needs as I work daily at school. 

5.  Kids health:
Annette:  Doing great!  She struggles with moving ever since her severe knee infection that landed her in the hospital for over 6 weeks!  But overall, she's happy and healthy and lives her life by her rules!
Joshua:  Has successfully weaned off of his biweekly IVIG for seizures.  He still seizes daily but not more than he did with the IVIG so we are happy to take away one additional medication.  He has had a port for over 13 years with no issues at all. . . then all of a sudden, he developed what was thought to be a hematoma.  Over the course of the past month, it has slowly grown into a large sore that culminated in an emergency surgery tomorrow morning to remove the port that apparently has decided to try and come out on its own!  Never saw anything like this in my life.  Joshua has had some sort of central line for 18 of his 23 years of life!  First for his cancer treatment, then for IVIG due to an immune deficiency, then for IVIG for seizure control.  He's excited to not have one anymore!! 
Marriela:  Has had an incredible summer, despite the move and recent changes in the family.  She went to program for 3 weeks this summer which was a HUGE accomplishment! She still has some CRAZY ideas, like asking Santa for God's number to find out the DNA of every African American to find out who she is related too.  Must give her credit for her resourcefulness in using Santa as her in with God, who she has sent letters too in the mail. 
Cody:  Growing like a weed!!  He's now taller than me with size 13 feet and he only started puberty 5 months ago.  I don't like where this is going!  He is impossible to fit for pants as he's so skinny but so tall that finding things that are long enough but don't fall to the floor with every step is my new challenge.  He's also started playing football for the first time this year.  He loves it! 
Sergio:  Doing amazing!  He is still TPN dependent and still has all of his medical needs, but has been healthy now for over a year with no fevers or infections!  His growth slowed down (he's very small for his age, but was growing steadily) over the last year, so we adjusted his TPN and should see a little more growth. 

and finally, Trayvon:
Tray has had a difficult year.  First he decided he really wanted to try going out into the real world, but do so without the right supports or the right environment.   As such, he struggled with taking his meds and becoming very depressed, resulting in a trip to the ER.  There he learned he had a high fever and was septic due to a large pneumonia.  He was restarted on all of his meds and was doing much, much better and made the decision himself to return home to get himself well and then move out the right way and to the right place, with the right supports.  However, even after healing from the pneumonia, he was still struggling with severe exhaustion, increasingly low red blood cell counts and blurry vision.  He began seeing a hematologist and received blood transfusions for his severe anemia.  I knew something was very wrong and at his annual cardiac biopsy shared my suspicion he had PTLD.  Fast forward 2 months.  Tray has PTLD, confirmed by scans and biopsy.  He developed a severe pain in his left side that prompted me to take him to the ER for evaluation.  The CT scan identified a clear and concerning mass in his intestines and colon.  He was admitted to the Upstate oncology unit.  We were in contact with NYC transplant team who advocated we bring him there for a thorough and complete workup to be reviewed by a specialist in PTLD, so we transferred by ambulance in the middle of the night to New York.   He underwent many tests and it was discovered he had severely swollen adenoids (they are made of lymph tissue and therefore are most likely rapidly growing cancer cells) causing him to have sleep apnea.  We had several more blood transfusions and biopsies of his entire GI tract where there was evidence of problems everywhere.  In addition, a large and active ulcer was discovered and may be the source of his low blood counts. 

We are back in the world of cancer.  He has been accepted by the pediatric oncology team here in Syracuse and NYC so he will be cared for in the developmentally appropriate manner he requires.  He seems to be ok mentally right now, as I am very careful that we never spring anything on him without warning.  He knows he has cancer and knows he needs chemo.  He knows he'll lose his hair but as long as we get 'cool do rags' he says he's ok. 

Life is crazy sometimes and just when things were settling down, another curve ball comes our way.  None of our child except Cody, should be here.  Every single one was given varying chances of making it to a given age.  Joshua's tumor had a 95% fatality rate even with treatment, he's here.  Annette was given 2 weeks left to live when we had her Make A Wish trip. . .She's still here.  Marriela was given no chance in the NICU where she was born at only 26 weeks and 1 pound. . . she's still here.  Sergio. . . well hell, everyone knows that kid shouldn't still be here, but clearly forgot to let him know that! Tray was literally given no chance of survival the night he was shocked three times to get his heart to stop beating 300 beats a minute for hours.  He then went on to have a successful heart transplant despite many odds against him. . . he will continue to be here.  That's all there is too it. 

Well, it's not the light hearted update I'd like to have done, but I know there are those who don't know how things have been recently and this felt like an easier way of updating our craziness. 

Love to all,
Renee

Potato Heads Gone Wrong!!

When tethered to IV poles, Potato
Heads offer great friendship.

Ok, this post has been in the making for years.  Anyone that knows me and/or my son, Sergio, knows we have an ongoing struggle with the love/hate relationship going on between my son and his Potato Heads.  I've concluded after years of observation and data collection (see evidence below) that they are evil. 

Sergio has an innate propensity for destruction.  I have come to accept this personality 'quirk' so to speak.  However, this 'quirk' elevates itself to a entirely new level when one of those cute sweet little potato heads arrive in the house.  Sergio LOVES, LOVES, LOVES Potato Heads. 

Saved Potato Head

Sergio (and I by default) have been in the hospital well over a hundred times in his short life.  Everyone of these stays has been made better by the comforting presence of a beloved Potato Head.  So much so, they started keeping one at the nurses station for middle of the night admissions when the playrooms would be locked.  EVERYone knows that Sergio = Potato Head. 

No, it does not fit. 

What started as a sweet love of a toy of the past has evolved into a demonic possession and master plotter of destruction.  The first signs things were going awry began with potato head pieces being flushed down our toilet.  I assure you, there is only one piece that comes with the potato head that can safely make it down, and that's the ear.  Other than that one lone piece, NOTHING else makes the notorious bend in the toilet.  I am now a master plumber and can vaccuum out the water, remove the toilet, declog the offending piece, replace a wax ring, and reconnect toilet in less than 15 minutes.  Not a skill I'm proud to have developed, yet here we are.


From the toilet, we noticed Sergio began to find ways to 'hide' the heads, only to then go mad looking for the missing potato heads.  His favorite place is over the back fence into the neighbor's yard!  Why?  Who knows, I can't for the life of me figure it out, but he's lost more than we can count to the abyss beyond the fence.  (then he added shoes, plastic pumpkins, and a variety of other items!)

At Disney this summer Sergio managed to find (and therefore I bought) several potato heads.  He then deposited one in the It's a Small World ride's river, another made it into the river at the Jungle River Ride, and yet another was left abandoned in the waterfall display at the Great Tiki Lounge.  Sigh. 

Very proud of his recent potato head contribution to the Jungle River Ride at Disney World.

Most recently Sergio has taken to having the Potato Heads actually destroyed!  He was beyond giddy when he managed to get one out into the middle of our road and watched it get run over.  He couldn't stop laughing for hours as he replayed that thought in his mind again and again.  When we went to the cabin a few weeks ago, he successfully threw his potato head under the golf cart and watched it get destroyed.  He then proceeded to successfully deposit the pieces in the pond, for future adventures.  Sorry Brian Bisgrove Home of Courage!!! 

Most recently Sergio destroyed my blender by blenderizing one of his recent new potato head additions.  The Potato Head faired far better than the blender I might add! 

If they didn't make him so darn happy, I would ban them for ever.  But. . . . as you can see, when you're life revolves around crappy visits to the hospital, who am I to take that joy away. 

So we'll just do our best to limit the destructive nature and foster the positive side of his love for the backless, naked toys he loves so very much!!  

Planning by Marriela

As most know, our life is a bit 'different'.  But isn't everyones?  No one family is like another.  So we have a different spin on that term 'family' that most, but certainly not the only ones in the world.  We have met other families that look and feel like ours with just variations in the shades of skin, types of medical issues and local of residence.  But they are farther and fewer between than I would like.

Marriela at 16 months.

That said, I love being able to share some of the inner happenings behind these walls because 1.  they amuse me and most that are privy to our conversations and 2. oh heck. . . I don't know, I just think some of the things that come out our family conversations are just too good to keep to ourselves.

Today I thought I'd share Marriela.

Marriela - the source of most of our "What the . . . ???  moments never ceases to amaze us.  She struggles literally every day with her disabilities and mental health challenges.  Until you are faced with a child who can't "think straight" or "make her mind work the way it needs too" as she so precisely verbalizes, you can't understand how devastating it is to witness.  However, these same challenges create for some incredibly comical conversations and life planning.

Marriela at 8 years old

As most of you know, Marriela is committed to having LOTS of children most days of the week.  Then once in a while she proclaims she'll just adopt them all from (insert country of interest at that very moment - as it literally changes by the hour).  She is going to find her husband on Match.com (since recently she learned that Harmony.com is not optimal for finding Italian men - don't ask where that information came from - sometimes it's better not to delve too deep into her research methods.).  Her husband is going to be half Korean, half Italian, and half Chinese.  Yep, he's 150%.  I'll be talking to her teacher about reviewing fractions with her.  He must be 6'7" (and of course those nationalities are all super tall by nature. . . NOT), and have blue eyes (yep, genetics is not her forte clearly).  Her children are going to be Haitian, no idea how that works but she's committed to a Haitian child.

Marriela at 12 years

Her desire to adopt a Haitian child is not new for me, as I have always been drawn to the desire to adopt from this impoverished part of the world as well.  But Marriela has recently taken to researching Mission Trips to Haiti.  In her words exactly "I'll bring my pink water bottle I got for my birthday and give kids and babies drinks of my water to make them stay alive.  Let's send all of my clothes to girls in Haiti."  She truly has a heart of love, but until she shares some of these thoughts you don't always see it.  Many times that heart is clouded by anger and she says and does things that hurt so when these moments shine through, I find it important to note them.

Marriela plans A LOT for life and is often frustrated by the time constraints the world places upon her desire to achieve these goals.  For example she bemoans daily that she "is not getting old enough fast enough!"  She wants to have children by 18 years of age so she is not "old' when they are little.  She apparently deems me to be practically in the grave as I was almost 40 when we adopted her!  In fact, she recently decided she was going to develop an 'adoption plan' for when Peter and I die.  Yep, apparently we're much older than we think we are.  She wrote a letter to Santa Clause and told him he was going to be her new father (and Trayvon's as well) and they will come to the North Pole to be elves with him.  I have yet to get a written response from the big man up north, but I'm pretty sure she's bounced from naughty to nice list so many times in a year, he's quite familiar with her.  LOL   Like I said, she's always planning.

Marriela at 14 years old

Another plan she has is to be homeschooled.  This is new and is directly related to her struggles in the school.  At the end of the year she was having many bad days and required restraining by staff to keep her safe as she was taken to a safer location than the classroom.  She is mortified once she is cognizant of her surroundings again that she was so out of control.  It's not in her control.  Her mind starts a war within it and she states it "tells me to be bad"  and "it gets stuck so I can't hear anyone and use my strategies because my brain is crazy acting".  This year she is transitioning to the high school and I too have some trepidation as to how this will play out.  She has a one on one aide but often needs  two to one aides when she is having a bad day.  She had a very gentle and supportive counselor at the middle school and we don't know what resources will be at the high school which is causing her high anxiety.  Therefore, her solution is homeschooling.  Well. . . it can't be me, I'm working.  It can't be daddy, he's working.  Sooooooo, she sent a letter to God in heaven to ask him to come to her house to be her teacher.  She put the letter in the mail and addressed it simply to "Heaven".  Again, still waiting on the response.  Serious points for having a back up  plan!

As a parent, the hardest part of being responsible for this child, is the unknowns.  I know for the most part the levels of support the other children will need.  Joshua will need 24 hour care for life.  He will be with us for a very long time until the laws change that allow staff to be present overnight.  Trayvon will need support, but in a different way.  Not direct support per say, but lots of guidance throughout life to help him navigate post school transitions, where and how to live independently, and the world of employment.  He has cognitive capabilities for academics, but struggles greatly with daily living responsibilities and life based challenges.  Cody will be going to college, get a good job, have a beautiful family and one day, probably responsible for at least his brother Joshua.  Sergio will need life long care.  Though, the reality is, Sergio's "life long" will not be until adulthood in all likelihood.  He has cheated death so many times I've lost count.  He is dependent upon IV's for life sustaining nutrition and hydration.  However, his organs do not like this arrangement and are now rebelling.  His liver is struggling.  He will be with us for as long as I can fight for a quality of life worth fighting for and only he will be able to dictate when that time is.  So until then though, he's total care or we'd have no plumbing left due to his obsession with flushing inappropriate items down the toilets!

The whole crew.  Several years old, but one of my favorites!

And then there's Marriela.  Will her meds one day allow her to live with supportive staff?  Will she need life long 24 hour care to ensure she does not harm herself?  Will she ever be able to have that family she dreams and plans for?  I just can't answer any of those questions right now, but she's 15 years old as of this month.  Adulthood is rapidly approaching and how to prepare for her needs is by far the scariest and most difficult of all the children.  Sigh.  But also worth every ounce of energy she takes.

And as she just walked away, after being told to clean her room she states. . . "I smell some goodness!" (upon smelling the mac n cheese on the stove) followed by; "I don't want legs anymore so I don't have to go upstairs to clean."  LOL

Who's my birth mom?

As most of you know we have adopted children.  Four to be exact.  We also have two homegrown children (biological) for a grand total of six.  Yesterday we were driving along to go do some summer clothes shopping and this very enlightening conversation ensued . . .


Marriela has been processing being adopted for some time now.  She is angry at her birth mother because she insists she gave her a disability by doing bad drugs.  (she is aware her mom used bad 'medicines' but learned about drugs in school in health class and now uses that terminology).  But at no time have we ever associated her mother in a negative way or implied she has 'caused' any issues for Marriela.  So anyway. . .

Driving along and Marriela starts yelling about how she wants her birth mom (typical when I've told her "no" to something she wanted, and in this case, it was to eat lunch at 10:30 am).  She then announces "Tray wants his too!"  Which we have not heard and clearly surprised Tray, as he was now being dragged into the conversation/argument.  As per normal protocol, we put on music and try to change the subject.  Marriela goes on to tell us that she bets she is an only child.  Tray suddenly throws out there "I have a brother."  I throw him a total look of surprise and ask how he knows!??  He states "You told me."

Now it's entirely possible I did tell him that, and he does have a half brother in Georgia.  But I didn't recall actually sharing that with him, but now, we have information out there Marriela is going to throw back at me!  So now I sit there and contemplate how she's going to ambush me with Tray's new knowledge he's shared and how will I respond.  Joshua, my homegrown son, is sitting next to me in the passenger seat.

Joshua turns to me and says "Who's my birth mom? The whole van lost it!  Through my fit of laughter I said, "I am silly!!"  He responds with.  "Oh then do I know who my birth dad is?"  I can't make this stuff up!  I replied that we saw him on the day he was born right from my stomach.  So he says "Well then, who's my birth brother?"  I asked him who he thought was his birth brother and he says "Trayvon."  I just said "Yep, he's your birth brother from another mother." and left it alone.  LOL

At that point we arrived at the store.  I dropped them off with Joshua's staff, Timmothy, and went to return a fan at the store next door.  As I drove that 1 minute trip to the parking lot next door, I realized, that many of my children do not necessarily recognize they are adopted or not adopted.  We love our children fully and unconditionally regardless of their origins and how we came to know them.  I was honored that Joshua was as content to be adopted.  

Easter and Update

Happy Easter!!  It was an absolutely beautiful day to celebrate, relax, take in family, and eat. . . a lot. So that's what we did.  I also dealt with my first cold in a very long time, and I'm not proud to say this. . . but I am a baby.  With all that's happened with the kids, all they have been through, all I've witnessed and lived through with them. . . this cold is the pits.  But, alas, I refuse to let it ruin my vacation.

Today we went to the MOST museum.  We ran through it at the speed of light, as that's what we do, we don't go nice and slow, taking in the sights and sounds.  No, we find the bathroom, look at things quickly, run up the climbing apparatus (yes, even Joshua and his dutiful staff went up and down the fun meant for those 12 and under).  Then we hurried out of the MOST into the VR (I'll remind you what that is if you forgot, further down in the update) in the pouring rain.  Joshua was highly distressed at getting wet.  We discussed the plans for tomorrow and all agreed on the lazy river pool at the local YMCA.. .except Joshua.  His reasoning: "I don't want to take another shower."  So we rationalize that he doesn't need to 'take an actual shower, just rinse off', but that still didn't sit well. So I'm taking him to walk the track while the others enjoy the pool.

So what else has gone on the past 2 years. . . laundry.   Lots of laundry has happened in the past 2 years.  Hmm.  Oh yeah, more laundry and a new washer and dryer because we broke the old ones with the laundry.

Nettie turned 27 a few weeks ago, Sergio is almost 11 (May 2), Tray is now 18, Marriela is 14, and Cody is 11.  For her birthday,, Annette asked for tickets to; drum roll please. ddddddddd Magic Men (AKA - cheap version of Magic Mike).  She is now the proud owner of three floor level tickets for the half naked bumping and grinding of sweaty men.  Oh yeah, parents of the year here!!

We're updating our two bathrooms and the kitchen, as well as fixing a few things that are less than optimal, such as the almost non-existent stair railing that Joshua fell through during a seizure.  I thought I'd love the process, yeah, not so much.  I like the 2"x2" paint swatch on the beautiful paint brochure, and so that's what I picked.  I like the 2'x2' pic of counter top on the website, so that's what we picked.  I liked the sink, faucet, hardware, floor, etc on the website, so that's what we went for. We tried doing the store thing, and both Peter and I were beyond overwhelmed by it all!!  Too much to look at, no idea what went together, so we're piecing our entire kitchen together by 2"x2" thumb size pics on a screen or in a brochure and will either love it or hate it, but it HAS got to be better than the disaster we currently call a kitchen.  So I figure, it's a win/win.  At least for the bathroom the guy came with samples and let us touch them at the dining room table, still have no idea how it'll look, but hey, we had samples!!!  The current tub has a dangling safety rail after Joshua had a seizure and pulled it part way out and then Trayvon slipped in the tub, grabbed the railing and finished off the wall with one good pull.  So I figure our pretty new marble shower surround and white tub will be an upgrade from the peach beauty we currently call a tub with the gaping hole in the wall!  I already bought a new shower curtain and will decidedly use it to gauge the new wall color, I saw a pretty one in my brochure.

Ok, last little update. . . and it's been on my mind for a while.  Some may relate, others may not.  But for me, the struggle is real.  Underwear.

We never have enough in the house, the drawers, or the laundry.  Someone ALWAYS needs underwear.  Joshua needs two pairs a day.  As a mother a part of me wants to scream "WHY?!"  The other part says; "Shhhh, you probably don't want to open that Pandora's box."  But, Marriela, then Cody, and then Trayvon. . . I put Peter out of his underwear deficiency misery by buying him three packs of 6 (with a free extra pair in each pack) for a grand total of 21 pairs of underwear.  But do I really need to do that for EVERYONE in the house?  I'm stubborn and I stand by the fact that every child and adult in this house has a minimum of 8 pairs of underwear with most having far more than that, How does one go through that many pairs in a few days time??  This vacation is wearing me thin on this issue though, and I feel as though there will be an Amazon order going in.  Then my Facebook feed will be all lit up with all different types and styles of underwear for the next three months!

Well, my cold is officially driving me to bed with some Vick's vapor rub and tea.  I missed you all and look forward to updating you more on some of our daily antics more often.

Love, Renee

P.S. VR is our 12 passenger van that looks a lot like a 'creeper' van with it's tinted windows.  Peter once referred to it as the VR when I insisted he take it out with his friends one night.  It stands affectionately for "Vagina Repellent".

A wee update

It's been a long time since I last posted.  Almost 2 years.  As it really isn't possible to update you on two years of life in the Curkendall household, I'll go with the easy things.

1.  We have been hospital free for a very long time!!  Sergio is now consistently treated at home with IV antibiotics and all of the other 'stuff' that gets him better in the hospital, right at home.  It's been a game changer.  Unless he is getting progressively worse after several rounds of antibiotics, we don't so much as step foot in the hospital.  He's been there 3 times in the last 23 months, all outpatient for new lines and g-tube changes.  It's been awesome and the reason I'm now a fully employed woman!

2.  Everyone is healthy!  From a relative standpoint, this is HUGE!  We have survived the past 2 years with minimal major illness or even lots of little stuff.  A cold here and there, but that's about it. Tray did have an abscess that was easily and quickly treated with a round or oral antibiotics and there was a quick round of what we 'think' may have been a mild flu.  All in all, cruising along well.

3.  Schooling is over for both Peter and I and we are fully employed, contributing members of society again!  Peter is working at Vera House, a not-for-profit that works with men, women, and children who are the victims of trauma, especially when it's a result of domestic or sexual abuse.  I am working as a third grade special education teacher at an elementary school in Syracuse, New York.  I love my job, but I work at an extended day school and don't get home until 5:00 each night.  That's not my idea of a 'school day' but it could be worse, I could be unemployed with my 3 degrees.  So I'm not complaining. . . well, maybe a little.

4.  Joshua graduated from high school.  Tray is a Jr. and graduates next year.  Marriela is moving to the high school next year as well.  Cody is going to be a middle schooler and Sergio. . . well, due to nursing complications, is no longer attending school.  He's now on homebound and is doing wonderful!  Annette has moved into her own apartment in a large development in the next town over and LOVES her independence.

Well,, there are new things that need to be updated, but for now, with little more than just the facts, I'm going to head to bed.  It's Easter Eve and I'm sure the festivities tomorrow will give me much more incentive to write!

Love to all.