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.  

Messy Miracles in the Making. . .: Mother's Day

Messy Miracles in the Making. . .: Mother's Day: Though a bit outdated, it is one of my absolute favorites. This was an amazing day! Happy Mother's Day!  This day has meaning to ...

Mother's Day

Though a bit outdated, it is one of my absolute favorites. This was an amazing day!

Happy Mother's Day!  This day has meaning to me that many don't and can't understand.  But that's fine.  I am mother to seven amazing children, six of whom are growing stronger and older by the day.  I am forever grateful for my opportunity to be a mother.  I owe that opportunity to five other mothers, as well as my own mother.

  

Yep, me as a wee one before my life
unfolded.  

My mother.  My inspiration.

Without my mom, well. . . I wouldn't be here!!  She set the wheels in motion for my life to unfold, and though maybe not always in the way I think she wanted; it was in the way I wanted.  However, because of my mom (and dad) I knew I would live a unique, wonderful, interesting and loving life.  

Beautiful Ethel.  

Five of my children arrived in this world without me having any idea of their amazing grand entrances.  For those not aware of some of the amazing starts to life my children have had, head back into the past posts.  But over time, each was presented to me in a different way, in a different place and through different means, but each was meant from the day they were born, to be my child.  I thank each and every one of those moms for having the honor of raising their children, regardless of the circumstances surrounding their lives.  Even the mother who was ultimately responsible for my daughter's passing. . . I was blessed to have her as my daughter and I loved her like a mother and I knew it was time to let her go. .. like a mother.  I had an incredibly short, albeit, intense, relationship with my daughter, Ethel.  She was beautiful, chunky and loved.  She had a father, brothers and sisters (one of whom talks of her to this day).  I held her with all the love of a mother as I offered her over to the doctors to take away the seizures, knowing the treatment would take her away as well.  I was her mom until the end. I am still her mom.  

My other incredible children are here, happy, healthy (in a very relative term) and create my need to breath each and every day.  Their mothers, some of whom I KNOW think of them and love their son's still, are human.  I know they want to know they made the right choice and I only hope they know and feel in their hearts the peace that they did.  The others, I don't know.  I don't know if they remember their children through the haze of drugs and street life.  One we are fairly confident has been deceased for a long time.  But, I am still thankful for them.  I am thankful for the wonderful creations bestowed upon them and ultimately me.  I am a mom because they became moms.  That's wonderfully cool, regardless of the narrative before our stories began.  

Not one of our best, but got tired of looking when I should be
doing my final exam.  LOL

I was also incredibly blessed to have two homegrown children as well.  Both, HUGE surprises (thus all the adoptions heehehe).  Joshua's life was complicated by so many things.  I am often asked "Did you know about so and so's medical issues before hand?  I don't think I could do that if I knew."  Well, biology does not protect you from malady.  I was young, healthy, and did all the right things and my homegrown, fully biological son had a brain tumor that almost killed him.  There are no guarantees in life we will get perfection.  As far as I'm concerned both of my awesome homegrown children are perfect and all of my adopted children are perfect, just sit and talk with them for a few moments and you'll see just how deep their souls, their zest for life and their love for our family is.  

We love our selfies!

So, as I celebrate my 25 year as a mother, I am reminded of all those who are mothers in so many capacities.  Grieving mothers, mothers who gave children up for adoption, mothers who adopted, step-mothers, mother-in-laws, and mothers of mothers.  What a big wonderful world created and maintained by the love of mothers.  Hugs to each and every mother far and wide.  May you feel love and peace today.  

HAPPY MOTHER'S DAY!!!

Put Your Right Pit In. . . .

Just thought I'd share a few tid bits from this week. ..

As I was standing in the kitchen I heard Joshua in the bathroom singing "Put your right pit in, put your right pit out. . . . you know the song. . . . and shake it all about".  I looked in to see what "pit" he was referring to and found him moving his hips back and forth (yes, while peeing. . . .ewww).  I asked "Do you mean "HIPS" not "PITS"??  He was shocked it was the wrong word! I told him if he wore his hearing aids he'd hear the differences in the words!  It was a great laugh for me though.

A couple of days later, Tray states, "These jeans are really tight."  I explained that they had been dried on the clothes line so they need to be stretched out and suggested some squats to loosen them up.  He proceeds to do several full length lunges up and down the hallway.  Then he asks "Are you trying to tell me I'm getting to fat or something (he definitely isn't)?"  Totally confused now, I get up to see what the issue is.  He's standing there with what look like painted on jeans, unable to even bend his knees.  I laughed so hard. . . he had my jeans on!!  Ever see the Seinfeld episode with Kramer and his tight jeans?  Yep, it was that funny.

Marriela has planned out her entire life thus far.  The other night she reiterated that she is moving to North Carolina (because they have better hospitals according to one family vlog who lives in NC to have babies at).  She reiterated her desire to "have shots to have sextuplets", I need to thank Kate Plus Eight for that lovely learning curve.  She is NEVER going to go in a pond because she does not want a baby from the tadpoles, that little educative doozy goes out to the opening scene in Look Who's Talking Now. She then enlightened us on her occupational prospects she is considering to support these children.
Here's some quotes:

• I'm going to college for something like swimming so I can get a gold medal.  They do pay you for a gold medal right?  (I proceeded to remind her that she has yet to successfully even float in a pool or let go of the edge and she's almost 13).  She countered with, Then I'll dance for money.   I just left that one alone.  
• If I don't make enough for diapers then I will marry a rich white husband from Match.com.  (I am truly comforted by the fact that she has a back up plan for the dancing gig.)

Well, that's all for now folks.  Just thought a little glimpse into the world of the Curkendall's would make you all feel a tad saner.  I am to help.  

Have a fantastic day on this awesome first of May!!!

Renee

Timeline of Septic Shock

January 20th
I receive a call, Sergio has a fever.  Off to the school I go, get him, draw labs, cultures, start antibiotics.  He gets hotter and hotter.  I give a dose of toradol and Tylenol.  He finally cools down.

January 21st
3:00 am, my phone rings.  Sergio is 103 degrees.  I come to his room and find him shaking violently as he spikes one of his very high temps.  His nurse and I prepare for him to go to the ER immediately. I give another dose of Toradol and push a bolus of IV fluids.  His heart rate is in the 190's.  I know he has a severe line infection (thanks to his usless gut).

4:00 am, arrive at the ER with Sergio, no longer shaking and a temp of 105.  I've already started everything needed for the sepsis protocol the ER uses.  So we sit and wait for a room, while he cooks and I watch the monitor.

6:00 am I can no longer look at the Blood Pressure numbers and find a doctor and insist they do something.  She orders a bolus of fluid.  We are transferred as a floor patient to the ICU because it's the only room left in the entire children's hospital.

7:00 am the PICU doctor is consulted, Sergio is looking septic.  Orders more antibiotics.

3:00 pm, Sergio is sitting in his bed playing with water, he looks much better, but clearly not well.  Cultures are positive for a gram negative bacteria called Klebsiella.  It is his arch nemesis.  It's the same bug that put him in the PICU on a ventilator for 5 days in 2013.

January 23rd.  Sergio looks wonderful.  He's running the halls, kicking his potato head, rocking his chair and climbing out of his bed.  We go home at 3:00 pm on two antibiotics.

3:30 pm I arrive home, he is shivering.  I quickly find ways to justify the shivering and try to reassure myself that he is ok.

5:00 pm Sergio has a temp of 101.5.  Take a deep breath, cry that it's all starting again just 2 hours after discharge.  Offered the option of trying one dose of Tylenol as the only intervention and seeing "what happens".

January 24th
12:05 am  Phone rings.  Sergio is spiking quickly and he is shaking violently again.  Throw him him in the car, shaking and all (which you should understand is profoundly painful!) and race to the ER again.

12:30 am Sepsis protocol restated.  The antibiotic stopped prior to discharge, restarted.  Cultures drawn just 4 hours earlier, are already positive for the same gram negative bug plus a new one.

3:00 am Moved to the PICU as a "step down" patient and managed by the PICU docs.  He is doing well and seems to be responding.

January 25th
7:00 pm After getting a blood transfusion due to anemia caused by the sepsis infection, Sergio develops some very strange reactions.  The attending physicians are convinced he has a clot.  We head to CT scan to look.  He looks off but nothing specific.  CT all clear, just Sergio's body doing strange stuff without explanation as usual.

January 26th
9:00 am Sergio is not himself but he is no longer "sick".  Very sleepy, but once up, plays hard and walks the halls.  Has some respiratory stuff going on.

3:00 pm - Looks much better.  Causing trouble, playing in the sink.  Going home on two antibiotics again.

January 27th - Had a good night.  Doesn't look like he feels well in the AM though.  Run some errands, to return to Sergio running a fever.

11:00 am - Back in the ER for the third time in five days.  This time, he isn't bouncing back.  Several boluses giving.  Spikes to 105.4.  Given Tylenol.  Cools down, looks a bit better.  No room in the PICU so sent to regular floor.

3:00 pm - Another fever spike, this time his profusion is severely compromised, his blood pressure is way too high, a sign it will go the other way in the near future.  He is moved to the PICU as a full PICU patient.

6:00 am - Sergio is now on maximum dopamine support to keep his pressures up.  Waiting on emergency surgery to remove his infected line and place a PICC line in his arm in the interm.  Blood transfusion, platelet transfusion, antibiotics, antifungals, fluids, dopamine all keeping him afloat for a while.  The fluid is catching up though and his lungs get "wet' and he struggles to breath.

3:00 pm - Finally go to surgery.  Line removed.  Return to room on high flow oxygen and real struggles to breath.  Chest x-ray looks worse.

January 28th - Struggles to breath continue.  Blood pressures are very, very high (170/110) due to fluid overload.  Wean off of Dopamine to help bring B/P down.  Give lasix to help pull some off.  Needs several potassium infusions to keep it up.  Give does of IVIG to help boost his immune system as it has crashed in response to this infection.

January 29th - Sergio drops six pounds of fluid in less than 18 hours, he had gained 13 pounds in just three days.  Breathing is better, but still needing O2.  Develops awful cough.  Due to ongoing headaches and needing strong pain meds, CT scan of head ordered.

January 30th - Feeling better.  Cough continues.  Cultures are negative so we stop all antibiotics. Getting more potassium.

January 31st - Fever returns to 103.4.  All antibiotics and steroids are restarted.  More potassium.

February 1st - Flu A positive.  Someone in the hospital gave him the flu.  More potassium.

February 2nd - Cultures are neg. so we stop all antibiotics and steroids again.  On Tamiflu for the flu.  No longer needing any O2. Still getting potassium infusions daily.

February 3rd - Fever returns to 103.7.  All antibiotics and steroids are restarted.  Frustration abound for everyone.  White count plummets.  More potassium.

February 4th - Sergio is looking good.  Playing, happy, more energy.  Decision is to wait one more day and discharge on all antibiotics if still good.  Increased Sergio's potassium in his hydration and TPN to maximum amounts.  One more infusion.

February 5th.  - Sergio GO'S HOME!!!

We are now over 5 days out from the completion of his antibiotics and thus far doing great.  Praying all this is behind us.

This is a boring recount of what it's like for my sweet baby.  He goes through so much just to live, be happy and play.  He doesn't care how sick he "was" as long as he feels good again, he moves on.  That's the reason I fight so hard for all of my kids.  They WANT to live.  So, I will give them every single chance in life to do so, regardless of the obstacles stacked in front of them.

More interesting posts to come soon.

Love,
Renee

Long lost update. . . .

WOW!!  It’s been a long time since I’ve updated my blog.  I’ve been remiss in my duties keeping you up to date on the latest and greatest from the Curkgang.  I’m sure you’ve all be waiting on baited breath for the daily going ons in our home and life (insert eye roll).  Actually,  I’m pretty sure you could live the rest of your lives having never seen another update from me, but heck, I’m going for it anyway JUST in case someone out there can’t survive.  I’d hate to be responsible for the early demise of one of my faithful reader s (all 13 of you I think) J . 

So what’s going on. . . . a lot and not much.  I’ll start with our littlest one (in size only, as his attitude MORE than makes up for that).  He had a rough patch back in January with a nasty three week admission, several trips to the PICU and eventually the loss of another central line.  That line was replaced with a PICC (peripherally inserted central catheter) in his upper bicep.  Since that time, he’s had an amazing run.  There have been two fevers episodes (scares) but both were successfully treated at home with our wonderful protocol that allows me to do it all without going to the ER. 

With this run of health, Sergio has successfully toilet trained during the day!!!  Not without some interesting twists because that’s just Sergio.  First, he’s discovered he’s now his own producer of liquid (water) to play in!!  Wah Hoo!!  Yesterday he was playing in his bucket of water and it wasn’t quite as full as he wanted, soooo he filled it up more, by letting loose a bladder full of highly dilute urine.  He had a devilish smile on his face as he proudly looked at me solving his own problem.  Needless to say, he’s not left unsupervised for any length of time now. 

On another Sergio front, he received the topper to his bed!! Now he is safe and secure in his bed.  He had learned how to stack pillows and blankets to pull himself over the top of his bed (which is level with my chin, thus high off the ground) and we were terrified he was going to topple head first out of the bed.  With some searching, I was able to secure a couple of grants to cover the $2,000 enclosure.  These special needs companies make a killing on these much needed products.  So frustrating! But, he’s now safe and sound. 

Ok, onto Nettie who has big news to share too!!  After her knee infection, 5 week hospital stay and a major decrease in mobility due to the now scarred knee, Nettie’s physical health has taken a hit.  While in high school, we choose a power chair for her.  This was to help her stay in pace with her peers, to be higher, thus more approachable, and to decrease the fatigue of moving all over the large building using a manual chair.  She had access to a school bus and ambulette service to transport her in the power chair.  However, once she graduated, moving the chair from the house was impossible (we do not have a van with a lift).  The new funding from Albany does not allow her to access the ambulette service (wheelchair van taxi’s) if she has staff that can transport her.  Obviously you’re never going to find staff who own their own wheelchair adapted vehicle!  So, we requested a manual wheelchair.  It was flat out denied from the insurance.  The one she has now (the one in many of her pics) is a typical hospital wheelchair and it is causing severe back and neck pain.  She is now requiring bracing of her neck and back to prevent further damage.  So, rather than take up a fight I was going to lose, we opted to take a different approach.  Annette’s card business has allowed her to purchase several items to help her remain independent.  She has purchased new braces for her ankles (the ins. Only covers one pair every 2 years and she needed new ones at 18 months), shoes to go over the braces and has almost enough for a three wheeled adaptive trike.  We decided to start a KickStarter campaign to try and promote her card business and raise the funds she needed for her wheelchair!  It was SUCCESSFUL!!!!  She raised enough to purchase the wheelchair, card making supplies and maybe a new computer to help her produce her labels faster.  She received a small Cricut (scrapbooking machine) for Christmas two years ago, but has never had a computer to use it with.  She’s so excited about the new things she can do with her cards with this machine and computer!!  We were blown away by the support, but honestly, this child deserved it and I’m so happy she was successful. 

Joshua and many other Special Olympians were honored by the Liverpool Lacrosse team.  He wore one of the players jerseys and were presented on the field!  What an honor!  Joshua is also going to the PROM!!  I’m not sure with who yet, he doesn’t have a date secured, but we’re working on that.  He’s very excited to go.  This mama’s heart is breaking and bursting at the same time.  Such a passage of rite but, it signals a finite time remaining for school before we must face the reality of adulthood.  Joshua’s unique combination of needs will preclude him from working independently. . . ever.  He is not a highly motivated individual (unlike Annette who, once she gets an idea in her head is unrelenting until she achieves it).   The future is just around the corner now, but we’ll take it one milestone at a time. 

Tray is doing phenomenal in school and in health.  He has joined the track team and is doing shotput and discus.  He is enjoying it tremendously. This summer we are looking for activities to keep him busy and not glued to the computer games.  He’s not really ready to work yet (developmentally or maturity) but he’s close.  I’m going to find some volunteer opportunities to work on those skills needed for employment.  He’s also going to his heart camp this summer, though he ages out next year!  So hard to see my “babies” growing up!! 

Marriela is thrilled she is not attending summer school this year.  Though she qualifies, she made the announcement that she will NOT be going because she is in middle school and no longer needs to do baby things.  Her newest obsession is sextuplets.  S
he is determined that she is going to have said sextuplets (“either she will have them by pushing them out or she will adopt sextuplets” – at least she’s flexible in the methodology of obtaining this brood of children).  With the concept of sextuplets comes the need to locate and write down EVERYTHING that she may need for six babies at one time.  6 seated strollers, Chevy Suburban that can fight six children, six car seats, six sippy cups, six swings, six white cribs, etc. etc.  Ohhh, and she’s moving to North Carolina.  She’s going to live in a house like Matty B has (a freaking giant mansion!) an indoor pool, a hot tub and she will be contacting Mr. Congel to close Destiny Mall here in Syracuse to open one instead in North Carolina.  Good luck with that my sweet girl.

Cody is getting ready for another Jui Jitsu tournament right here in Syracuse.  He’s ready, just needs to work on those double leg take downs and controlling the clock.  He’s advanced so fast in this sport.  He’s also doing intramural basketball in school.  Last night I took him to his Spring Fling dance were I saw him dancing unabashed and in no less than TRIPLE time of the song playing.  He does everything fast – including dancing apparently.  I even witnessed the only “worm” in the room, yes, it was my son in his white shirt belly down on the cafeteria floor.  Ewwww.  A mean round of Pokemon card trading and the dance was over.  It is so wonderfully odd to have a “typically” developing child!

Peter is done with his courses and only has his internship remaining.  However, there is an issue between his university and the State of New York and all students in NY must delay their internships yet again (already delayed it one semester, now it will be two).  That leaves a quandary.  To remain active in the program, he needs to continue taking courses; however, he has completed all of the necessary courses AND 12 extra credits.  We are working with the university now to see what compensation and alternative plans they have to accommodate these students.  Peter has also successfully passed his hypnotherapy course and is now a licensed hypnotherapist!! He is busy setting up his business model and securing an office to begin servicing clients.  So proud of him!!!

Finally, the one and only, myself.  I am finishing up two courses right now that will finish next week.  Then I start the last of my two remaining courses.  I’ll be done at the end of August and will be conferred my Ed. S. degree in Education.  I too have started my own business.  As an ardent opponent of the testing madness occurring in education today, and a local advocate for the refusal movement (which, many of you may have seen, was highly successful in NY) I have decided to open my own Education Advocacy practice.  Education Advocacy of CNY will be up and running by the end of May.  I have several families I’ve already been working with and know that this is a huge area that needs to be addressed.  I am so excited to be done with school and putting my skills to work finally!!  This will allow me to customize my schedule, work from home or the office Peter uses and allows flexibility in my time to meet all of the kids needs while still making an income.  The best of all worlds!! 

So, that’s where we are.  Could have totally lived without these 1700 words in your day I suspect.  Rest assured, it’ll be another gap of time before my next update so you’ll have lots of time to recover. 

Take Care and God Bless,

Renee 

Messy Miracles in the Making. . .: Quality versus Quantity

Messy Miracles in the Making. . .: Quality versus Quantity: Quality versus quantity. . . what a complex and sticky little concept.  It’s so different from case to case.  We’re currently faced with ...

Quality versus Quantity

Quality versus quantity. . . what a complex and sticky little concept.  It’s so different from case to case.  We’re currently faced with this issue for two of our children.  It’s not the first time we’ve faced it, nor the last, but is never easy.   Sergio has many things going on that constantly cause us to stop, rethink, and determine if what needs to be done is worth the degradation of his quality of life.  Most times it is, sometimes, it’s not.  As such, the hospital has been wonderful in coming up with new protocols never tried before just to save us from so many hospitalizations.  From drawing cultures and labs at home, to starting emergency interventions and key antibiotic therapy without the need for a trip to the ER and admission to the hospital (provided he is stable and “ok”).  We are also looking at Quality v. Quantity issues for Joshua as well.  His port has stopped working, he needs a new one.  He is developmentally not able to do it while awake.  We were incredibly blessed to have our wonderful oncologist go down to interventional radiology and “make a case” for him to get his port in IR under general anesthesia.  We’re just awaiting a date.  With the new port, we have decided to move his IVIG infusions back home.  He wants to try it.  This results in some significant changes in who and how he has his port accessed.  It also opens the door to trying new interventions for his neurological issues that affect his bladder.  This may allow us to circumvent the need for more traditional approaches but will significantly impact quality versus quantity. 

Sergio

Well, we made it through the holiday without an admission.  That’s not to say we made it without an infection, just that our new protocol that allows me to begin the same treatment and lab work the ER and hospital do; at home, worked.  This prevented another 4 day admission when he began running a fever the day after Thanksgiving. 

Sadly we’ve made several more changes to accommodate our young son’s ever changing, and failing organs.  Lately it’s his kidneys.  I’ve been watching his kidney numbers go up more and more.  His BP likewise has begun a steady upward climb.  The little boy who had low blood pressure his whole life, now has high blood pressure.  We know his kidneys are at fault, but don’t know how or why. . . just like every other thing that goes wrong with him.  There are no books that you can read, no websites that condenses his particular constellation of issues into a nice neat article and then delves into the treatment for those issues.  Nope, not Sergio. 

He is now tethered full time to both hydration and TPN, this means he’s lugging around 6 pounds of pumps, tubing and bags of life sustaining medications.  We had to move him from a backpack to a rolling bag (and if you know Sergio, this is not an easy feat!).  Last night he had to have repeat doses of morphine because his bottom was so sorry he wouldn’t sit down.  It is a side effect of the severe diarrhea that comes with the antibiotic he has to have.  So we augment his treatment with pain meds, acid reducing pastes on his poor bottom and we blow dry the skin with a blow dryer.  It’s a sight to behold.  It’s sad, it’s frustrating and it’s reality.  Yet, my baby has NO IDEA that this is bad.  He has never known anything else and when It’s over, it’s over.  He returns to his potato head stealing, microwave waving, water drenching activities as if he hasn’t a care in the world.  He is in the terrible “twos” or “threes” phase right now.  Complete with foot stomping, evil eyes, yelling at and door slamming.  It’s such a spectacle you can’t help but laugh, which makes him madder if it results in me quarantining him to his bedroom (mind you, this is the worst place in the world for him, as it’s off of the kitchen and bathrrom . . . aka, microwave, tub, sink, dog bowl heaven.  And no, morphine does NOT make him sleepy and all dopey, it just makes him feel well enough to act just like himself.  J

Joshua

Joshua has a neurogenic bladder and bowel.  This is a result of the first surgery to remove his brain tumor.  It was significantly worsened by the epilepsy surgery that further disturbed the areas that have the nerves that control the neurological aspects of bladder and bowel control.  As such, he feels like he HAS to go all the time.  I mean 20+ times a day.  Sometimes, he actually goes.  Most times, he can’t.  I get frustrated.  He gets frustrated with me and doesn’t understand why I get upset.  You see, he seizes the most in the bathroom.  It’s the least safest place in the house for him, yet it’s where he has to stand the most.  I has broken doors, showers, and even a faucet.  He has had the shower bar fall on his head causing more issues and he has torn up his side and back up falling against the door jamb and shower door latches.  There are treatments but it necessitates having to undergo invasive and very uncomfortable testing which he does not want to go through again. It hurts and it’s always very abnormal.  The permanent solution is a stoma in his abdomen that he can use to catheterize himself so he empties his bladder completely, thus eliminating the never ending sense of needing to go.  This is where the quality versus quantity comes in.  We have opted instead to pursue adding hydration via his port each week to improve actual bladder function.  Joshua is not happy about having to have his port accessed for days at a time, but he also agreed it’s better than the testing and if it works, then great.  If it doesn’t, then we’ll revisit our options.  His original diagnosis of brain tumor and subsequent treatments have taken a terrible toll on his body.  He has unrelenting seizures, neurogenic bladder and bowel, cataracts, severe developmental delays, severe hearing loss, osteoporosis, and ADHD.  Yet, he happily sits by the fire every night and watches the same re-runs of Disney shows over and over.  He is Peter’s shadow and never far from daddy when he’s home.  Loves having his finger and toe nails cut.  Manages to make it so his hearing aids “don’t work” an awful low despite reassurances from the hearing aid store that they do, in fact, work well. 

      The rest are doing well.  Tray blew away his transplant team when they saw how tall he had gotten.  He is now 5’10”.  He’s officially taller than me.  He is still growing and will be in a size 13 sneaker by winters end.  He has been having high blood pressure for a while now and finally the agreed It was time to address it.  So he’s started a blood pressure med, though it doesn’t seem to really be a high enough dose, as his pressures are still too high.  Will tweak the dose this week.  Overall, he looks amazing and feels even better. 

       Nettie has many aches and pains.  Her severe knee infection 2 years ago, set her back almost 10 years in terms of physical abilities.  In an effort to lose weight and get back some of the function she has lost, she injured her elbow, causing severe tennis elbow.  It’s very painful and though she had instant relief from a cortisone shot, she did not follow instructions to rest the elbow for at least 2 weeks.  Instead, because it felt good, she jumped into more exercise than ever.  Now she’s hurting badly again.  Not sure what else there is to do to help her.  L

       Cody is doing great, other than taking a very hard fall down our hard wood stairs today.  Pretty bad back contusions and elbow bruise, but he’s running around with my rain coat on and my hair dryer (a new and better zombie killing gun says he).  He’ll live. 

        Marriela is in heaven as her Elf on the Shelf, Dennis has returned.  For me, that means leaning heavily upon my night nurse to remember to move that dang little guy around.  Today I was truly impressed, Dennis was in a hammock, hanging from my dining room light. . . such ingenuity! 

     Peter and I are tying up this semester of school.  I am only 18 credits from my advance certificate of Ed.S (Education Specialist).  Sergio is making it very hard for me to contemplate what to do with my new found skills and education, but we’ll work something out.  Peter will be starting his internship with Vera House, an organization that works with abused women and children.  He will be full time in the spring and upon completion will be ready to work as a Mental Health Counselor.  So exciting!!

       On December 16^th, I will be having surgery on my rotator cuff.  I have done the cortisone shots, PT, ice, and heat to no avail.  I’m in pain all the time and MY quality of life is severely impacted which then impacts my children and that is not ok.  As such, I will have an impingement release, tendon repair and a bone spur removal.  I can’t wait!!  How said is that!!  So Christmas should be fun.  Working hard to have the buying and wrapping well underway by that point!

Well, that’s it for now.  Merry Christmas to all and a Blessed New Year. 

Renee