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 :)

Happy Belated Mother's Day :)

This is a posting by a very dear friend of mine-it speaks the truth! WOW! It honestly makes you cry your eyes out, at least I did when I read it.

I believe each of us, whether we have a child who is NSN or SN, we can relate!

Happy Belated Mother's Day :)



Why Moms are the greatest in the world!

1) Because we never thought that "doing it all" would mean doing this much. But we do do it all -- and then some.

2) Because we've discovered patience we never knew we had.

3) Because we are willing to do something 10 times, 100 times or 1,000 times if that's what it takes for our kids to learn something new.

4) Because we have heard doctors tell us the worst, and we've refused to believe them. Take THAT, nay saying doctors of the world!

5) Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6) Because we gracefully handle the stares, the comments, the rude remarks. (Well, mostly gracefully.)

7) Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good!

8) Because we are strong. Man, are we strong. Who knew we could be this strong?

9) Because we aren't just moms, wives, cooks, cleaners, chauffeurs and women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches and cheerleaders and students. Whew!

10) Because we work overtime every single day.

11) Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese (which aren't reimbursable by insurance as mental-health necessities, but should be).

12) Because we are more selfless than other moms. Our kids need us more.

13) Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our families. And our hairstylists, of course.

14) Because we inspire one another in this crazy blogosphere every single day.

15) Because we understand our kids better than anyone else -- even if they can't talk; even if they can't gesture; even if they can't look us in the eye. We know. We just know.

16) Because we never stop pushing for our kids.

17) Because we never stop hoping for them, either.

18) Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal -- even when it seems like our heads or hearts might explode.

19) Because when we look at our kids, we just see great kids -- not kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever.

Only Ryan...

Where do I start? Back in November 09' (at Lukey's Birthday Party) Ryan was complaining of his left ankle hurting. So, I brought him to his Ortho. Dr. down at DuPont...in all honesty I thought Ryan was fine. As it turned out his growth plate was out-of-line. Who would have thought?! So, Ryan goes home with this cool cam boot :) He was super excited, as a matter of fact he couldn't wait til he could show Pop-Pop and his friends at school! In four weeks we make our trek back down to DuPont for the follow-up at which point the ortho states it's been 4 weeks he looks good, seems to be walking well, etc. At that point the ortho decides to take him out of the cam boot and sends us home...which was fine with me and Ryan was happy too :)


Then, out of nowhere Ryan starts complaining again and is limping everywhere we go. I honestly thought he was faking it and just wants the cam boot back on :/ I called the ortho. and speak to the P.A. (physician's asst.) and we discuss whether or not to do an MRI at this point, which we both agree its definitely warranted. I set up the MRI, which we would still be waiting for if Ryan's ortho. Dr. didn't call them back and state he needed this MRI stat. Ryan had to be sedated b/c they wanted him to be completely still, which is hard for a 7 year old, it's hard for an adult to be still...who are we kidding :) The sedation nurse was terrific, even the anesthesiologists was great! As a matter of fact, the anesthesiologists actually asked about Ryan's probable mito. disorder b/c she actually was reading his chart. I was amazed b/c most Dr.'s brush this info. off...needless to say I was extremely impressed! He was not given propofol (which I'm sure as everyone knows this is what ultimately lead Michael Jackson to have his fatal heart attack and subsequently die) but rather Ryan was given another sedative that he could easily metabolize. Ryan came through the MRI wonderfully and we were just about to leave when a nurse came by and told us that we needed to wait to be discharges b/c ortho. wants to talk with us.

In walks Ryan's P.A. and she states, "you won't believe this"! Apparently, Ryan had also fractured his cuboid bone, which is on top of the foot...not the ankle :/ I was shocked...needless to say! I asked his P.A., "how did this happen and most importantly how did we miss this the first time around"??? She told me that they were concentrating on the ankle and had only x-rayed the ankle, not the foot. Also, she had NO CLUE how on earth Ryan had done this :/ To this day, we still have no clue as to exactly how Ryan fractured his cuboid bone, and it's believed that this is the same time his growth plate became out-of-line as well...Only Ryan!!! The only thing we, the ortho, Ron, and myself, can even fathom is the fact that Ryan learned to jump over the summer and recently (before he had the cam boot/cast) he had been jumping non-stop everywhere! Other than this absolutely nothing...tell me we shouldn't be nominated for parents of the year award...LOL! Before we left Dupont hospital's sedation unit we stopped off at the cast unit and Ryan walked out with a hard cast, that to this very day has been trying his hardest to remove the cast. He thinks its removable, just as like the cam boot :/

In the meantime we believe that Ryan is having seizure activity yet again :( Ry's neuro. dr. and us can't confirm this-but we are *almost* 100% sure. We recently went down to DuPont (something different this time-not the foot) where Ry had an EEG. We were hoping that this EEG would show us what we were expecting but it didn't :( However, it did read that Ryan has "abnormal" brain waves. Which I was told by Ry's neuro. dr. this could mean 1 of 2 things:1)its the meds Ryan is on to help control his seizure activity or 2)it means that Ryan is having some sort of seizure activity. So, what do we do from here? Ryan now needs to have a 24 hour EEG in the hospital. Perhaps this will lead us to the answers we are searching for but then again who knows...after all it is Ryan and he truly is a complex child!

I will, of course, keep family and friends updated on progress with both his foot and the seizure activity :/

Love & HUGS,
Jenny, Ron, Ryan & Lukey

A Hockey Player in the making?!?

WOW! I can't believe this will be the third time in just over 24 hours I've written on the blog!

Lukey started ice skating yesterday and absolutely adores it!!! He looks SO tiny out on the ice, its too cute! But then again, I am a bit biased...LOL! He told me he does enjoy it and that's the point, right?

We will see if he continues to enjoy it and *maybe* just *maybe* we have a hockey player in the making?! Or a figure skater? Ron doesn't like it when I say he could very well be a figure skater just as well as a hockey player. I get this look from Ron and let me tell you, if looks could kill? Well, lets just leave it at that :)

By the way, my Dad thinks the reason he loves ice skating and does extremely well is b/c he is Russian...LOL! That in and of itself is adorable!

Enjoy the photos of Lukey's 1st ice skating lesson :)

Love & Hugs,
Jenny, Ron, Ryan & Lukey

Happy New Year!!!

Our holidays went by way too quickly!!! We had a very MERRY CHRISTMAS and a HAPPY NEW YEAR!!! I hope that everyone who reads our blog had a WONDERFUL holiday season as well!!!

This was Lukey's 2nd Christmas/New Year with us :) He adored Christmas, but then again what little boy doesn't?! We celebrated our Christmas in our new house, so this year was extra-special for us. The boys received many toys this year from everyone and feel extremely blessed! Ryan's favorite toys are his big R2D2, little R2D2, guitar, and bumblebee voice mixer. There is a photo that I think is priceless!!! Its of Ryan playing his guitar and wearing his bumblebee helmet...just priceless!!! Lukey's favorite toys are his brothers and his zhu-zhu pet (which I will say the weekend after Christmas we went out and got Lukey's his very own zhu-zhu pet!), ol' Mcdonald farms, bongo drums (Thanks Uncle Leon!), and the dinosaur. However, on Christmas day Lukey's did NOT like his dinosaur b/c the dinosaur stompped and growled at him, but now the dino is his best buddy...or so he told me the other day :)

New Year's Eve was spent away from home this year. We spent it at Coco Key, you would think this was in Florida? Nope, it was 10 mins. from us in Mt. Laurel :) It's an indoor water park and I will say the boys had a blast and a half! However, the 1st night we went to the hotel, which you get the indoor water park free when you rent the hotel room, we were awakened by a fire alarm at 1 am, that wasn't fun :( Then, on the 2nd day/night we had the most rowdiest and noisiest neighbors, this too was not fun :( But what can you do, we made the best of it and the boys had the best time at the indoor water park.

Enjoy the photos :)

Love & HUGS,

Jenny, Ron, Ryan & Lukey :)

Let it SNOW!!!

The first snow of the season on December 19, 2009 and according to the news the most snow in 100 years! I will say that Voorhees received 24" (I think?), amazing huh? Of course, the boys wanted to get out of the house and PLAY, PLAY in the snow! Which of course they did, they even made a snowman :) This was the highlight of the day. However, the next day they decided it was more fun to destroy the snowman :/ The most fun they had was drinking the hot chocolate when they returned to the house :) Enjoy the photos :) And YES I do realize its the New Year but had to share these adorable photos :) I promise to blog about our holidays and of course share photos!

Love & HUGS,

Jenny, Ron, Ryan & Lukey :)