A day spent at DuPont Hospital...

Honestly, my head is still spinning!  We had two extremely important dr.'s appointments for Ryan on Wednesday, October 20th.  Each equal in the weight of importance and it was anything but easy.  Our time spent at DuPont was overwhelming and daunting.  Ryan seizures are now known as "Progressive Myoclonic Epilepsy" b/c they are changing how they present. His neuro. no longer refers to him as having "Myoclonic Epilepsy". His seizures use to present as "hiccup like episodes" and now they are presenting as "laughing spells". The neuro. has once again upped his meds and it was explained to us (both Ron and I) that his neuro. truly does want Ryan to be seizure free and unfortunately this is the only way they can do it :(


Then, it was on to Ryan's ortho. dr. where he went over every little detail about Ry's Gait Lab experience. I will say I was fascinated till he started to say those dreaded words, "Ryan does require surgery"! Apparently, Ryan has moderately tight hamstrings and needs hamstring lengthening surgery. The good news is that he doesn't need the surgery right away. His ortho. dr. said sometime in Spring would be great.


We traveled home from Delaware in silence, maybe each of us needed that silence to regroup?  Once, we were home we literally kissed the boys and we were off running again to an Epilepsy Conference.  It was an awful amount of traveling we did on that day but who knew that the last event we attended would be the most rewarding?!  I learned more at the Epilepsy Conference than from Ryan's current neurologist.  It was absolutely fascinating, and it is mind boggling thinking about the different types of seizures that men, woman, and children experience on a daily occurrence.  It was gratifying to be a part of this event.


Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

Pumpkin Pickin' 2010

With everything going on with Ryan, I almost forgot to mention that we went pumpkin picking, our family and my sister and her new boyfriend.  I'm not going to lie, with all that is going on in our lives I wanted to cancel but it was my sister who told me she had A LOT of fun pumpkin picking last year that she wanted to do it again...with her boyfriend.  I will state she sorta twisted my arm :)  You know what the boys had with the festivity of pumpkin picking from Johnson's Farm.  As you will recall, it was Ryan who told Lukey, on his very 1st Halloween Season with us, that we don't buy our pumpkins from a grocery store, we pick them from the ground at Johnson's Farm!  Too cute!!!

This year I tried to make it a bit more festive and put them in matching shirts, (I believe this was more for me than for the boys...to get me into the mood of Halloween) Ryan with his skeleton shirt on and Lukey in matching attire BUT if you notice Lukey's has candy that is in the stomach part of his skeleton :)  Everyone who knows Lukey, has said boy is that shirt appropriate :) 

As you will take notice to the last four photos...we went to another farm b/c I had a coupon and boy was that a disappointment :(  Ryan told me it was a faux Johnson's Farm and he was not impressed-LOL!  I told my sister about it and she said to me, "See that's what you get for going with out Chris and I"!  All in all, our family and now my sister and her boyfriend too, love Johnson's Farm :)

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

Break Through Seizure Activity

I want to write that everything is going great in our lives...but the truth is-it isn't :(  We are almost 99% positive that Ryan had break through seizure activity on October 5th and October 16th.  Its extremely difficult to pin point when Ryan has a break through seizure that if you blink and don't realize what you are watching you will miss it and just go on as if it were nothing...maybe just some behavioral issues or him being "funny" or having these laughing spells.

On October 5th, I get a call from the school that Ryan had an accident, which is not like Ryan at all!  I thought nothing of it, went into school brought a change of clothes and that's it.  It wasn't until the next day, when I read the most disturbing news and realized Ryan did have a seizure!  I received an email from Ryan's resource teacher (who I adore and Ryan does too, she truly is the type of person who exudes care) that Ryan was acting "funny" almost drunk like she said to me in this email and then she realized he became incontient and had an accident.  He doesn't remember any of this.  His neurologist upped his meds...once again :/

Then, on October 16th, we went to Ryan's Trail-A-Thon at Shadow Equestrian, which Ryan was excited for but at the same time he wasn't acting like himself.  Again, he was acting as if he was drunk, the fact that everything everyone said was funny, his legs were jelly, and he kept on falling.  To make a story short, we eventually went to the CHOP's ER and trust me if I had to do it all over again we would have went to DuPont :/  CHOP's ER couldn't or wouldn't do anything for Ryan, b/c Ryan was not in any distress once we arrived at the ER.  The attending physician told us, short of reinventing the wheel there is nothing we can do for him-AHHHH WAS SHE KIDDING ME???  We walked out of there just as clueless as we walked in, not a good feeling!  CHOP suggested we call Ryan's regular neurologist on Monday and explain to his scheduling department that we were in the ER.  I did follow this advice and we see the neurologist on Wednesday.  Also, we have Ryan's Gait Lab Analysis on Wednesday...can't wait...stay tuned!

Enjoy some photos of Ryan at his Trail-A-Thon, even though everything was a mess that day he did do a spectacular job on his horse, Shadow!  He received a trophy and a ribbon, he's all about the trophy and the ribbon :)

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

Our DEAR Summer we bid you farewell...

We have been having the worst luck, lately!  On Thursday, September 23, 2010, Ron and I decided it was time our beloved first furry baby (aka Summer, our yellow lab) go to Heaven.  I didn't think it would be as difficult as it was to put her down.  I really do despise that saying, "put her down".  Its just an awful saying!  I prefer euthanized but it sounds as if you are stating what happened with no feelings for this creature who was a part of your life from the time she was a tiny puppy. 

It had been a rough night, the night before, with her panting and constantly getting up and lying back down.  She kept on moving b/c we believe, as did the vet, she was in constant pain and it was that night we decided that we needed to euthanize her :(  Panting can also be a sign of pain but then again it can be a sign of Laryngeal paralysis, maybe she had this?  She was 14 years old and lived a good life.  Within, the past year she had been living in the lap of luxury at my Dad's house b/c we have too many steps in our new house.  My Dad spoiled her giving her ice cream, biscotti, etc.! 

It was an emotional roller coaster that night.  I didn't handle it so well, and honestly I'm still quite upset by it, after all she was our first pet, even before we adopted the boys.  I can recall, one year we dressed her up as a pumpkin on Halloween and brought her to Ron's sister-YES we were those type of people-LOL!  As I've stated she was our first furry baby and our boys grew up with her, she let them eat her dog food with her, Lukey took care of her after her surgery...memories.  When we went to the vet we brought Ryan and Lukey with us.  This way they too could say there goodbyes.  Now, some may have an issue with how we handled this but we thought about it and we didn't want to lie to the boys about where Summer went-we want them to know that she was in pain and is now running and playing with Nanny in Heaven.

The boys were upset that night, it was probably b/c both Ron and I were extremely upset, but I will say that the next day Lukey was as happy as a little clam...go figure?!  But, Ryan was much more inquisitive with asking all types of questions, such as where Summer went to?  Or is Summer in pain anymore?  Or (my personal favorite) do you think Nanny will know who Summer is in Heaven?  SO profound!


Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

Ryan's Gait Lab Appointment

It was rough watching Ryan walk back and forth, up and down the, "Yellow Brick Road", (literally-that is what the dr.'s at DuPont refer to the Gait Lab as, b/c two artist were chosen to sketch/draw and then paint the "Yellow Brick Road") at his Gait Lab appointment on Thursday, September 16th.  I believe it hits home... maybe a bit too close.  With each turn that decided what pressure points he was or was not using correctly, or whether or not he was "hunched" over (for lack of better terminology) it was all too "REAL"! 


Lately, I've been thinking about Ryan and his special needs.  I realize its probably tougher for me b/c I KNOW what he will face by not being "typical" and it wakes me from a deep sleep some nights :/  Scary nightmares at what my baby will be and probably already has been presented with by those who feel superior to him or are just insecure in who they are at that time in their lives.  But, then I think to myself I can't even imagine our lives without Ryan in it, the notion is preposterous!  I can't even imagine saying NO to his referral, we won't accept the responsibility of raising a special needs child, lets face it Ron and I knew there were risks-as there are in any adoption.  There are risks when having a biological child too.  We held on to hope and took that leap of faith.  All this was swirling around in my brain as I'm sitting there watching Ryan walk up and down the yellow brick road...literally!  What gets me is that NEVER has he ever complained or whimpered or cried at what he has to go through...he just smiles at me and gives me the thumbs up that everything is good :)  Talk about admiring someone who is so young yet has all the wisdom as if he were an 80 year old man, what an inspiration!

Can you imagine when we get the Gait Lab Analysis, how distraught I'll be when that happens?!

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

A 2nd Grader and a Preschooler...1st Day of School

On Tuesday, August 31st, Lukey was invited to view where he would be going to Preschool.  He loved it and thought that day he was actually going to Preschool b/c he said to me, "Bye-bye Mommy I'll see you later"!  To which I responded with a whimper and a cry, I managed to get out but your not leaving me...yet :)  He was extremely upset that I was not leaving his new classroom.

Then switch gears to Ryan, where on the first day of school, Tuesday, September 7th, he wanted nothing to do with school!  Didn't want to be a 2nd Grader, didn't want to get on the bus, didn't want to go to school, and most of all he didn't want any homework :/  I simply told him that it was ok to be scared about going back to school, he assured me he wasn't-he just didn't want to go!  Then, I asked him, "How can you be a big 2nd Grader if you don't want to go"?  He said, "BUT I DO WANT TO BE A BIG 2ND GRADER"!  And quickly stepped up onto the bus!

Now, Lukey was a totally different story...night and day between our boys!  He bounced out of bed and was dressed and seated at the breakfast table, in his school clothes no less (he has afternoon preschool), all by 7 AM!  That day was SO rough b/c he just wanted to go to preschool!  Poor kiddo!  Finally, the time had arrived for me to drop him off at preschool...I started bawling before we even entered the school's parking lot...not a good sign!  Lukey on the other hand told me, "Mommy don't worry you be ok without me for a little bit, I be back"!  With that he jumped out of my arms and lined up as if he has been doing this for months!  He is such an independent little man.  It was heart wrenching watching him march into his new preschool classroom :(  I've told everyone, who'll listen to me, I don't know what I'm going to do without my Lukey?  But, you know what I made it through those two and a half hours just fine and I realize Lukey needs this, he was ready for some type of preschool and we are extremely lucky that he won Voorhees School District's lottery.  According, to the paperwork sent home there were 47 applicants and only 7 boys and 7 girls chosen to go to Voorhees Preschool Program and we count our blessings b/c Lukey was one of those 7 boys!  It truly is for the best!  He needs a challenge and in fact, he told me one day, that I was boring and we need to do more stuff :/

When I picked Lukey up on his 1st Day of School, he came running over to me and gave me the biggest hug ever!  And, then asked me, Mommy you ok, did you do ok without me"?  "See, I told you I be back and here I am"!  Which, of course, made me cry even more!!!  He really adores preschool!!!

Ryan is doing better each and every day...its still a struggle but its getting better.  Hey, he'll have this down come June...LOL!!!

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)

What happened to Summer???

Is Summer really over?!  Truly, it can't be?!!!?  It seems as if it were yesterday that I was getting Ryan off the bus and we were beginning our Summer adventure!  I will state that this Summer was a BLAST!!!  And, boy did we do A LOT :)  We enjoyed our new pool, Stratford Swim Club-Thank-You Grandma Joyce for the recommendation :)  Ryan enjoyed Summer Camp and is getting ready to be a big 2nd grader!  Lukey was accepted into Voorhees District's Preschool Program-WOOHOOO for both Lukey and Mommy!  So, he is preparing for his first experience with preschool :)  Also, we enjoyed the library so much this Summer, we literally were there, whether it was for Ryan or Lukey or even the both of them together, every other day.  The reason we were at the library so much is b/c Ryan and Lukey really enjoyed the theme, which was the "Ocean" :)  When we didn't spend our time at the library we could be found at the "FREE MOVIES", we saw movies, such as "Surf's Up" or "Tale of Desperaux" but my all time favorite was "ET".  The boys enjoyed this experience, Mommy liked it too b/c it was "FREE" :)  We experienced our first FRUA (Families for Russian and Ukrainian Adoption) Picnic.  The boys had a great time at this.  It was wonderful to get together with other adoptive parents who have adopted from Eastern Europe and share your story.  It reminded me of Ryan's Azerbaijani Reunion we go to but without the travel involved b/c it was right here in South Jersey.  Ryan participated in a horse show, he received a trophy and a ribbon :)  A family favorite is wrestling up the boys and going to Burlington County Farm Fair, as you will take notice-one of the chickens had the same exact hair cut that Lukey was sporting-LOL!  Our family was invited to a bday party at Holiday Roller Rink, which is amazing b/c Ron and I can remember roller skating there as children...ahhhhh memories :)  The boys rejoiced every time they were taken bowling this Summer.  I joined kids bowl free, and we used it pretty regularly but after the 5th time bowling I was done BUT not the boys :)

We spent time in Jersey City/NYC for Ryan's 9th Annual Azerbaijani Reunion, you can find all about that in my last post.  And who can forget our time this Summer spent standing in line waiting to be let in to Carlo's Bake Shop...that was two posts ago.  This Summer we spent time at the Jersey Shore, whether it was in LBI with friends, at Margate with CK and the Kennedy's (BTW, Thank-You Kennedy's) and Aunt Woo, or as a family in Ocean City, we had FUN!  Over all this Summer ranks up there...I can't believe the boys are going to be a 2nd Grader and a Preschooler?!  Where did that time go?!

Love & HUGS,
Jenny, Ron, Ryan, & Lukey :)