“Can I sail through the changing ocean tides? Can I handle the seasons of my life?”

Umm, yes, I can.

Well I’m glad that’s over with!  You may or may not know, Sarai was supposed to be admitted into the hospital for an EEG last Sunday in Hackensack, NJ.  Mom came down to watch Caleb...

I took a few days off from work, we were all set… and they had no room to take her.  Not on Monday either… or Tuesday.  Wednesday they called and said to get her there in an hour.  I ran out of school, literally running, threw everything in the car as fast as I could and high-tailed it down to NJ. 

This was a dreaded (DREADED) appointment.  I didn’t want to hear that she was having seizures, that they would want to give her medication, vitals every 4 hours, bad food… I thought it was all overkill.  PLUS, when we got down there I realized the only bra I had packed was the one I was wearing!  Not good.  Thank goodness it was a good one.  When you’re in the hospital with your child you need all the support you can get.

It was a rough couple days, but we’re glad it was only a couple days.  Sarai isn’t having seizures, but she IS having abnormal brain activity, “spikes,” and sometimes LOTS of them (like, one per second at times when she’s sleeping).  We were totally against medication, but we caved, and I think it’s the right decision.  We emailed Dr. Escolar to get her opinion and she felt that we should try it, they all suggested Keppra, so that’s what she’s on.  It could cause some mood changes, or it could actually help her learn or be more relaxed if the spikes calm down.  (Prayers, please!) 

Nerve racking.  There are no right answers.  It just kills me.  The talk with the neurologist went something like,

“We don’t know what the spikes mean.  It could mean she’s going to have seizures, it could not.  It might be holding her back cognitively, maybe not.  Maybe she’s uncomfortable, we don’t just know.  There is no literature to say giving medication will prevent seizures, but I think there’s something to it.  Maybe, no one can say for sure, it’s worth a try.” 

Conversations like this one are what make me SCREAM at the TV when I watch Grey’s Anatomy, a show where everyone has an answer, and doctors are willing to go the extra mile and think outside the box.  The writers on those shows are pretty creative.

(Should she get a break from doing PT just because she's in the hospital...

not a chance!)

I do have to say, Hackensack Hospital totally rocked.  The nurses were great, Child Life came and set up mats for Sarai to play on the floor, they gave us finger paints, we all kept busy.  Of course the iPad was never far.

Caleb stayed with Yvonne, thank goodness we knew he was well taken care of (probably spoiled out of his mind!). 

Sitting is going well, for both of the kids…

 (Face off!)

And you might have seen Caleb’s perfect plank on facebook…

This kid could have taught the “correct alignment” section of my group fitness certification class.

We’ll have more EEG’s to come for Sarai, we’re starting the intense physical therapy program for 3 weeks in March, and we’re hoping to take her to Pittsburgh in April to meet with Dr. Escolar and have an MRI (she hasn’t had one in over a year and a half).  Busy, busy. 

(Mall rat!)

Anyone know how to move a giant swing set??  Take it apart, put it back together and create a playtime wonderland in our backyard?  Uncle Tom and Aunt Theresa have one we could have, but I have no idea how to tackle a project like that. 

Back to business as usual for us!  Love you guys!

"When I see your face, there's not a thing that I would change!"

TGIF!  Just in time for Saturday, we're getting 7 inches of snow.  It just.... isn't.... right!  ONE snow day this school year so far and it was in SEPTEMBER!! 

Any-hoo, just thought I'd let you guys know what's going on these days.  Sarai had an evaluation for a three week intensive therapy program, and she rocked it.  And they gave us some great ideas to help her get stronger.  We've been working really hard on some new things; standing with splints, sitting with sandbags for support...

... and without!  Her progress sitting has been AMAZING. 

We've got the poor kid doing (usually) 60 sit-ups a day, she can't help but (reluctantly) get stronger!  The therapy will be in March, and we're pretty stoked.

The yucky EEG news follow-up... we're headed to Hackensack Hospital on Sunday for a "24-Hour" EEG.  It will be 1-3 days.  I'm going to assume that it will be at least 3 days.  As Adam says, this ain't our first rodeo, we kind of know what to expect.  Our doctor seems to think nothing of walking into a room, waving his hand, saying, "One more day," and walking out.  This is going to be a rough few days.  Last time Sarai had this done it was grueling, so think of her now bigger, stronger, and resistant as ever.  At 12 months old this kid could get out of a gauze head wrap like no other...

Aug. 2010

Within a few hours of being wrapped up...

Houdini's got nothing on this kid.  We'll let you know how this all turns out.  I've been in contact with Dr. Escolar (formerly from UNC, now at the children's hospital in Pittsburgh), and we're pretty ready for a second opinion from her and her team.  I'll probably be in touch with them next week to let them know what they're saying the EEG says.

Caleb turned 6 months old!  He's sitting better too. 

And smiley as ever.

Sorry to end this on a sad note, but I've got to mention that two tiny kids, two VERY brave little souls, that I've been praying for and following their blogs, passed away last weekend.  Rest in peace Gracie and Tripp, and I'm continuing to pray that your families will be able to find comfort in knowing that you're not suffering any longer. 

We'll keep you guys updated about what happens next week at the hospital.  Fingers crossed!  Say some prayers please (for Gracie and Tripp's families too!)!

"To where we are, where we've been, said we'd do it all again, remember when..."

Time to lighten the mood after yesterday's post.  Last  night our friend and babysitter, Yvonne/an-angel-on-this-earth, took the kids for us while we went out on a much needed date night and got me out of a little funk, THANK YOU!!  Everyone is posting about looking back on their year, so I guess I'll jump on that band wagon and take a little walk down the 2011 Memory Lane.  It was a good one...

Jan...

We're going to have a little friend in a few months!

Feb...

The impossible happened... after waiting on this very house for years, we bought the house we LOVED!

March...

We moved into that beautiful house and we found out...

April...

Sarai started a playgroup...

 ...got her gait trainer (she looks like such a baby here!)...

 ... and got all dolled up for Easter.

May...

Sarai ate ice cream...

(look, nothing else really went on in May!  Sometimes it's nice to just celebrate uneventful months!)

June...

I got to be the size of a house...

(I will not post a picture of me looking like a walrus.)

...and we realized how much Sarai loved water...

July...

This is where we got busy!

Sarai turned 2...

... had her first round of Botox and got her AFO's...

(Snazzy is, as snazzy does.)

... And we welcomed Caleb into our family!

August...

Caleb decided to try out the new hospital for a few days...

 ... he was baptized during hurricane Irene...

 ... and Sarai started hippotherapy with a super-snazzy helmet!

September...

Umm, we made cookies?...

 October...

I went back to work, we did a few fall things with the kids...

... and of course went trick or treating!

November...

Another uneventful month...

(But gait training in the unusually warm weather was fun.)

December...

We met our new nephew, Luke...

(Is he a tiny little peanut or what??)

... and of course celebrated Christmas with the family!



So that's it in a nutshell.  Before we know it, Caleb will be turning 1 and Sarai will be in preschool!  2012 will be an exciting one! 

Cheers!



“Somewhere in the vicinity of the heart… I feel somethin’ hittin’ me awful hard…”

Merry Christmas, Happy New Year to you all! I hope you had a wonderful holiday season. We spent Christmas up in Syracuse with my family and we got to meet our new nephew, Luke! What a looker he is!

I can NOT get over the warm weather, but of course Pompey did not (could not) disappoint and delivered a white Christmas after all.

(Insert pic I forgot to take of snow covered trees!)

But here’s some kiddo pics…

So you guys know where we’re at, Sarai had to have an EEG on Thursday. I was dreading this appointment because they’re just awful. Sarai has to be sedated, she almost never stays that way, the techs get aggravated, I get upset, Sarai can’t eat, it’s just rough. This was really supposed to be to get a baseline, see what her brain activity is like now that she’s been off all medication for 6 months, but the EEG showed some “spikes,” and I knew it as soon as I saw them on the monitor. They’re not seizures, but could mean that she could start having seizures again. The doctor wants to review her chart and call me next week. I don’t know what to think, I’m super upset, I’m afraid we’ll end up back in the hospital for a 24 hour (which could end up being a week or more) EEG to test her, start some new meds, see how she reacts, etc. Meanwhile, we have seen nothing but changes for the better in her development and temperament, so I guess I try to focus on that, but it’s hard…

I’ve been spending a LOT of time surfing mommy blogs. Some are just to make me laugh, and they usually do, out loud! And some are hard to read, about mom’s of kids with special needs. They put my little blog to shame, they write so honestly and I feel like I know so many of them. One mom was sent this by a reader, and it just really touched me. I can’t stop thinking about it, and of course how Sarai is such a brave, little soul…

The Brave Little Soul

By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.

People gave from their hearts.

Those that were always too busy found time.

Many began new spiritual journeys, some regained lost faith - many came back to God.

Parents hugged their children tighter.

Friends and family grew closer.

Old friends got together and new friendships were made.

Distant family reunited, and every family spent more time together.

Everyone prayed.

Peace and love reigned.

Lives changed forever.

It was good.

The world was a better place.

The miracle had happened.

God was pleased.

I know a lot of brave little souls out there, some of you reading this have one very close to you, and I’m thinking about all you guys all the time.

Whew… on a lighter note, Sarai will be evaluated next week for a therapy called the Therasuit Method, or EuroTherapy, or just the Therasuit. It would be a three week, 5 days a week, 3 hours a day, intensive program. We’ve heard some great things from parents who have tried it, and not one person has reported a negative experience. The place is in Queens, we’ll know more about it this week.

Thank you guys for keeping up with what we’re up to. Your support is so important to us. Love you all!