Saturday, April 25, 2015

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,


1 comment:

  1. Always happy to hear from the Curk gang! Thanks for the update!