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 :)

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