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