"Baku Babies"...Again in NYC

We are off to NYC tomorrow, Thursday, August 5th for Ryan's Azerbaijani Reunion that runs until Sunday, August 8th.  The Azerbaijani Reunion was held in NYC once before in 2004.  We are getting more and more excited for the reunion!!! The boys keep on asking that dreaded question, "When are we leaving again"? But, I must say I can totally relate to their enthusiasm! LOL! We will be arriving Thursday and heading to the "Big Top", Thanks for the tickets Gina :) The boys, especially Ryan, can't wait to see their friends :) Ron and I are looking forward to seeing our old friends and meeting new ones this year. Plus, we get to hear the fabulous stories from Jane and Judy about how their trip was to Azerbaijan!  Also, we get to participate in the "Silent Auction", which as I'm told has authentic items brought from Azerbaijan and we get to EAT authentic Azerbaijani food at Baku Palace in Sheepsheads Bay, Brooklyn  (an all time personal favorite of mine)!

There have been nine Azerbaijani Reunions all together and we have attended five going on number six this year.  I've posted some photos that I have not previously posted from last years reunion in Chicago.  Enjoy :)


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

We have underwear!!!

WOOHOO!!!  I really hope that potty training and Lukey stick this time around :/  Because up til now it truly has not :(  We have been intensely potty training for the past week.  Then, today I hand Lukey a pair of big boy underwear and asked him, "Do you want to wear these"?  He replied with a phenomenal sounding  "YES" and eyes as bright as a Christmas tree.  He also told me that he would not get his new big boy underwear wet at all.  In retrospect, I probably should have had Ryan hand over his big boy underwear b/c it would have made more of an impact. 

We are running out of time, this potty training better work :/  All of the current paperwork I have signed for Lukey's upcoming preschool program has stated that yes he is indeed potty trained.  He was selected out of 47 children, only seven boys and seven girls in our school district and school starts on September 7th...

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

PS-Notice the boots in the one photo-he adores these boots and wears them everywhere!  Thanks Mary ;)  He specifically stated he wants a photo of his big boy underwear and his cowboy boots and while he is wearing the cowboy boots he makes everyone call him "Cowboy Lukey"!  Too darn cute!!!  Also, I don't know if anyone can see in the other photo that Lukey has a balloon attached to his hand as he sits on the potty?  He's one of a kind :)

R2D2 took the cake...literally!

Ryan turned eight years old on July 3rd!  We can't believe he's as old as he is, can you believe it???  I've said this to everyone who will listen to me lately, that it seems as though it was yesterday we were scooping him up from the Baby Home (orphanage) and taking him home to the USA with us :)  Truly amazing!!!

Then, today we had his 8th Birthday Party at the bowling alley.  We asked Ryan specifically if he wanted to have his birthday at Sahara Sam's again (last year's bday party was held there) or at the bowling alley (somewhere new this year) and he chose the bowling alley.  Ryan was super excited that he not only had family/friends coming to his bday party but was also able to invite his classmates. 

As for R2D2 taking the cake, which was incredible in both taste and the fact that it was a 3dimensional version of R2D2, we had Adelaide's Bakery make the R2D2 cake and WOW!!! did they do a fabulous job! Ryan chose an excellent flavor of cake too, he selected a chocolate chip pound cake-Mmmmm it was delicious!!!  Ron and I were always obsessed with Cake Boss and the Ace of Cakes, maybe a bit toooooo much, subsequently in light of Ryan's recent health issues we opted to have a terrific cake made for Ryan's 8th Birthday Party b/c nothing compares to Ryan's smile when he saw R2D2 as a cake :)  Ryan is just as captivated with R2D2 as we are with Cake Boss and Ace of Cakes, so what better way to celebrate :)  But, seriously you be the judge and let us know if this R2D2 cake was as great as he looks?

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

Ryan's appt. with Ortho.

I thought I would update everyone while it's fresh in my "MOMMY BRAIN"!  Today, Ryan had an ortho. appt., which went well, all things considered :/  I advised Ry's ortho. dr. that recently he was either tripping or having breakthrough seizures OR BOTH :/  Regardless, he was falling A LOT lately and something needs to be done to help him.  The ortho. set forth a plan of action, btw have I told anyone that I adore his ortho?  Here is a dr. who isn't afraid to listen to the parents and take their advice and modify it :)  Here's the plan: Ryan is getting new articulating orthotics-he has already been casted for the new orthotics and will receive them in about three weeks.  Once, we have the new orthotics we are to bring him to the Gait Lab, where they evaluate the way he walks and then depending on the results Ryan may need surgery.  I will state that I am still a bit taken back at the thought of surgery BUT I've been researching the type of surgery that has been suggested for Ryan and it actually may be a good thing b/c it may help him walk better.  Ryan has been lurching and/or crouching lately and this surgery could help his hamstrings and ultimately stretch them to wear he stands and walks better.

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

Did he trip or could it be-dare I say it?...A Breakthrough Seizure???

Where do I start?!? On Thursday, July 1st, we WERE suppose to go to Hershey Park with My Dad, my sister and all four of us (including Ron).  It did not work out that way :/ My sister had to bail, which was no fault of her own but then Summer, our oldest dog, who is still alive and kicking, and she now resides at my Dad's-we have way tooooo many stairs for her here in our new house, was sick with vomiting and diarrhea.  She must have ate something b/c according to my Dad she was not feeling well, SO my Dad decided not to go either :/

Instead, my Dad and all four of us went to see the movie "Toy Story 3".  Which was awesome and sad OR I should say for those of us who can relate to someday saying "GOODBYE" to your child/ren when they go off to college.  I will not give away the movie but there is this one scene where Andy's Mom looks at Andy's empty room and that was it-I lost it and couldn't stop crying :(  Ron told me I was being a little too sensitive, I simply told him a Mom can never be too sensitive!  Besides, we have eleven years before Ryan goes off to college and fourteen years until Lukey leaves for college and those years are going to fly.  I am excited that the boys will someday be bigger than me but at the same time WOW it seems like yesterday we were adopting Ryan and Lukey.  Bitter sweet, if you ask me!

I do apologize for that-I tend to side track easily these days, I like to refer to it as "Mommy Brain"!  LOL!  Anyway, we were getting ready for the pool and I was in the kitchen (of course, with my back to Ryan) and all of a sudden Ryan fell into our metal spiral staircase!  I kid you not!  I turned around b/c I just heard a big bang no crying (yet) and it already looked as if it were a murder scene!  I run over to where Ryan is at, and at this point he is sobbing by the time I get to him, as in can't seem to catch his breath-sobbing.  I assess the situation, as best I could at the time, and realize all of this blood is spurting from his lip.  He literally has cracked his lip open about an inch to two inches :/  Ron scoops him up, wearing a bathing suit but no shoes, and we put him in the van and head over to the ER.  We are five minutes from the ER, another plus of living in Voorhees :)  According to the tech. he has "gotten" his lip pretty good :(  He required three stitches and I could not for the life of me watch them stitch up my child's lip.  Ron said to me that's extremely strange after all we have been through with Ryan.  You know what, he was absolutely correct!  Still, to this day I'm puzzled and perplexed by this, the fact I could NOT watch them stitch my child's lip?!  What I found to be weird was that the ER was fearful that I was going to pass out?!?  The ER was also worried about Ryan's head injury and subsequently a concussion.  It hit me then, not til then, that maybe Ry had a "Breakthrough Seizure" and this by far was the worst thing that could have happened to him, he actually fell into our metal spiral staircase :/  We discussed with the ER what the probabilities were that he tripped or that he actually had a breakthrough seizure and all in all it was hard to determine what exactly occurred.  The ER did assess his teeth, to make sure they were still in place and they also assessed his nose (his poor teeth and nose, b/c last year he had a huge spill into our old swim club pool and fell straight onto his nose, actually breaking the nose, and at the time, we thought pushing his brand new front teeth up into his gums) but thank-goodness this time around his nose was not broken nor did his teeth appear to have been pushed up into his gums.  As I've stated the hospital was more or less concerned about the concussion.  All in all, it could have been much worse, I keep telling myself that and anyone who will listen, BUT this was quite horrible :(

Then today I called his peds. dr. to schedule the removal of his three stitches, which I'm hoping goes well :/  The stitches had to be removed three to five days after they were placed.  The ER told us the reason they had to stitch his lip, generally they do not like to, but this was an extreme case where Ry needed his lip to be stitched due to the intensity of the cut.  They also told us that he would have no scar b/c the lip regenerates itself quickly and cleanses itself.  I found this highly interesting!  Also, I was on the phone with his neuro. too b/c the possibility of a breakthrough seizure is frightening and just as I thought the neuro. could NOT rule out a breakthrough seizure :/  SO, they have once again upped his medication :( 

Only Ryan!!!

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

Update on Ryan...

I promised I would update both Family and Friends concerning Ryan :) First things first...the foot! We are happy to report that Ryan is out of his cast and no longer needs his cam boot either.  WOOHOO!  However, he did have his cast on until Friday, March 5th and then b/c he was AGAIN complaining of pain, he needed his cam boot until Friday, March 19th :/  It truly was never-ending with his foot :(  Thank-Goodness everything worked out for his foot and all is healed...FINALLY!  I will state that I did a little extra research on the cuboid bone, which Ryan had broken, and it does in fact take a bit longer to heal. 

As for his seizure activity, this is another story in and of itself :/  I blogged back on February 8th, that Ryan had an EEG, which of course turned out abnormal-let me state here that Ryan has NEVER had a "NORMAL" EEG.  So, his neuro. dr. wanted us to get a 24 hour EEG-another test?!  I pack everyone (and by everyone I mean Ryan, Lukey, and myself) up and we head to DuPont (which as you know is in Delaware) for Ryan's 24 hour EEG.  We arrive at the hospital, they attach the leads, and they send us home.  Now, I thought when I made the appt. for the 24 hour EEG that he was staying the night but in actuality the techs. send you home and tell you to perform your normal routine.  Thank-Goodness I asked if he would need to spend the night b/c I would have brought his suitcase and everything that was required for him to spend the night.  Now, if Ron or I (mostly myself) saw any of his seizure activity we were to "hit" a button on the EEG machine.  I will state one thing, Ry was not at all happy with his new head gear :/  The techs wrapped his head in a bandage, with the cemented leads (or so it seemed the next day when they were trying to remove them and we could not get rid of that glue!).  The techs let him take home a backpack, but it wasn't any ordinary back pack it was an elephant that you could arrange the machine into the elephants belly.  It was cute but Ry was not buying it at all. 

We came the next day and on our way into the hospital who do we see but Dr. Artheya.  Who is Dr. Artheya?  He is the Rheumatologist who saved my life-that is a story that is definitely for another time and quite possibly another blog all together.  When Ryan was having his G-tube placed back in 2004 we ran into Dr. Artheya and knew he was working at DuPont, which instilled our decision to switch Ryan's care to DuPont from CHOP.  Dr. Artheya told me that he was only doing consulting and semi-retired but that he was happy we ran into each other once again.  We planned for Ry to return to school that day but I was unsure b/c as I've stated the techs and I could not for the life of us get that darn glue out of his hair and we tried everything.  The poor child went to school with clumps of glue in his hair that looked as if he had severe dandruff :/  Upon leaving the hospital we were told via the techs that we would need to wait for the results-OF COURSE!

About two weeks later we did have a neuro. appt. and it was told to me that it appeared as if Ryan was having "Breakthrough Seizures" and Ry AGAIN had an "ABNORMAL"  24 hour EEG. At this appt. Ryan's neuro. dr. communicated with me that Ryan required an MRI of his brain.  Ryan has had MRI's before but I will state the neuro. dr. truly scared me on this one!  The reason?  Because the neuro. FINALLY admitted that there is an enormous PROBABILITY that Ryan may have some type of Metabolic/Mito. Disorder.  In all honesty this reason scared me so much is b/c I never thought we would be on the cusp of a diagnosis such as a metabolic/mito. disorder, it truly was a surreal moment.  Also, the fact that his neuro. dr. was actually listening and this after he had vehemently denied even the thought that Ryan may have a diagnosis of mito.! 

I was scared for the possibilities up until we received the results of the MRI of the brain...now remember this is Ryan and nothing is ever straight forward with him-this is just our Ryan :/  AND why should this particular MRI be any different?  The MRI of Ryan's brain showed absolutely nothing new, in other words it neither suggested nor denied the probability of a metabolic/mito. disorder :/  When I received the results I was happy, don't get me wrong, BUT here we go on the roller coaster ride again-its extremely disheartening!  The MRI did show that Ryan's PVL has not increased nor has it decreased-which is a good aspect that his brain is not deteriorating due to the seizure activity or that his PVL has stayed the same.

We do have to get blood work done as well b/c the neuro. dr. wants to make sure that b/c of the medication and increase in his medication lately that Ry's levels of lactic acidosis don't build up and cause muscle deterioration.  But as always I will keep family and friends updated on Ryan :)


Love & HUGS,

Jenny, Ron, Ryan, & Lukey :)

PS-For those of you who have no idea what a Metabolic/Mito. Disorder is, here is a wonderful website that explains everything!  http://www.umdf.org/site/c.otJVJ7MMIqE/b.5472191/k.BDB0/Home.htm

Happy Belated Father's Day :)

I'm sensing a theme here, aren't you?! LOL! Ron's Father's Day was blissfully spent by the pool.  When I refer to the pool, I do mean our new swim club, Stratford Swim Club.  Ron told me he would like to spend the day by the pool and bbq, which you can do at our new swim club.  We invited my Dad and my sister and they gleefully accepted :) 

Ron stated it was one of his most memorable Father's Day :)


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