Hope is a Journey….

Catching Up…

Wow, so it’s been a while!

So what’s happened since I last posted?  A LOT!

First of all…my blog hit 20,000 views and the beginning of September marked a full year (and 50 posts) of blogging!

I apologize in advance for the length, but I have a lot to get through…and at least 3 more blog posts to write over the next 2 weeks…so this one is going to be jam packed with what’s happened since the end of August. Hard to believe it’s been 2 months since I’ve posted!  MOST of it is really good!

I ended up back in the hospital on August 25th due to having 3-5 second pauses between heart beats. It was pretty scary.  I was transferred to MGH and admitted for several days, discharged and then readmitted…and redischarged. Ultimately, it corrected itself and I was able to go home.  They aren’t sure why it happened or if it will happen again, so we’re keeping a close eye on it.  I was so incredibly frustrated as this incident made it 5 hospitalizations in 4 months.  I REALLY was not digging having to spend so much time at MGH over the summer – which is usually my best time of year.  The worst part about the most recent incident was that it happened just 2 hours before Sasha’s 7th birthday party (which was also was the same day as one of our blood drives).  It was definitely NOT fun having the medics take me away from our house and everyone is crying and completely freaked out.  Like I said, it was pretty scary.  The party was canceled (despite my adamant insistence that it go on without me).  It’s a pretty crummy feeling knowing you are the reason your daughter is disappointed and the rest of your family is terrified.

One week later, we were finally able to celebrate Sasha’s birthday.  We were so blessed to have so many of our close friends and family celebrating her birthday with us!

SO excited to get an autographed Air Traffic Controller T-Shirt!
Will was also excited to get a signed Air Traffic Controller T-Shirt!
Part of Sasha’s ‘Air Traffic Controller’ cake!
My two Munchkins wearing their signed “Air Traffic Controller” shirts! Thanks guys!!!!

After Sasha’s party, there was no time to waste – I was busy getting ready for Team Hope’s 5th Annual Beer Tasting event for the Immune Deficiency Foundation that was at the end of September.  I can’t even believe I was stressing out about things going well as, when the day of the event finally came, we had more than $8,000 of  items donated for the auction and our turnout was amazing!  I think we had more people this year show up than any other year. I was pleasantly surprised that the photographs I had donated towards the auction were hot ticket items! I was humbled, touched, and blessed by the outpouring of support from our community.  Thanks again everyone!

Click HERE to see the rest of the pictures from the event.

I also was so happy to be celebrating this milestone with my partner in crime on Team Hope – Michelle.  We’ve been in this together from the start and she is one of the most amazing women I know!

Neal, Michelle, and Ralph setting up the cake Michelle made for the event!

In the end, we raised near $14,000 for the Immune Deficiency Foundation!

Yep….everyone who helped make this possible is AWESOME!

The next day was my 35th birthday and I was delighted to spend the morning with my family, my Mito sis – Liz, and my dear friend Maggie and her husband before heading out to the Garrison House for a nice day out with the kids.

We had Sasha’s IEP meeting at the school and we have been working hard together as a team to best support her in school.  She has a 1:1 aide for most of the day and the meeting was to extend the amount of time.  We still have yet to fully agree on total time – but so far, she gets 4 hours a day – we were going for 5 so that ALL academic times are fully supported during the day – but the school thinks 4 will be okay.  Still haven’t decided if we’re going to go with that or push for the 5, but we have to decide by Monday.  Honestly, I really do just LOVE the staff at the school, they are SO good to both our kids.  I have to say, I LOVE the metabolic specialist that sees the kids also because he called into the meeting and was able to explain what was going on with Sasha (and Will) in a better way than I ever could and I think that it was extremely beneficial to have his help.  Truly, we are blessed with such a great medical and academic team.  I am not excited that Sasha is having SO much trouble medically/academically, but I am SO grateful that she has people who are so intent on providing the support she needs so she can feel good about herself and successful at the things she tries to do.

Will had developmental testing done in September and the developmental specialist recommended that he be moved from a 504 to an IEP, so we are now just beginning the process for that.  Hopefully this will be an easy process.

We also got some ‘fun’ time in apple picking with Ralph, the kids, my niece Brittany, my friend’s Amy, Todd, their son Jack – and my Mito Sis Linda and her husband Rob – it was a really nice time!

How ’bout THEM apples?

The fallout that ensued due to being so busy preparing for the Beer Tasting knocked me out of commission for half of the first week of October, and I really took it as easy as I could as there was another BIG event that our entire family was going to be a part of at the end of the week!

If you have been following this blog for some time, you might remember that we had asked both kids back in February what their ‘one wish’ would be (if you missed it, click HERE to read that blog post).  Will’s ‘wish’ came true in May when we surprised him with a 2 week trip to Myrtle Beach with my parents and my niece Brittany.

Myrtle Beach May 2012
Myrtle Beach 2012

On October 6th, we piled the kids in the car with us and told them we’re going on an ‘adventure.’  We arrived at the airport in Manchester – the kids were SO excited….but the excitement grew when they realized that my parents and aunt were standing outside the car behind us and were also going with us!

SO excited as they waited to board the plane!

After a fairly uneventful flight (I hate flying – and it didn’t help that we ended up descending through a storm), we landed in Orlando, Florida.

Just about to enter the storm prior to landing
That was part of the storm we flew through….we had just landed at the airport when I took this picture!

The kids STILL didn’t know where we were going, but they were even MORE surprised when they say my niece Brittany sitting in baggage claim waiting for us (she took an earlier flight).  They were thrilled that all 8 of us would be taking our ‘adventure’ together!

Ont he tram heading from the terminal to the baggage check!

Of course, no vacation would be complete without a little drama, and OF COURSE, in true fashion with our luck – it started right away!  First the airline lost our luggage, then the 2 vans we had rented weren’t available (Dollar Rental had a HUGE screw up and there were more than a dozen angry folks in the same position we were – without a vehicle), but – by far, the worse was yet to come.  My mom had gone to get a drink from Starbucks, and I thought she had gone down to be with my dad and Ralph trying to figure out the van rentals – but it turned out that she never made it there (we discovered this an hour after I last saw her up in baggage claim). We had her paged twice over the airport intercom, but she didn’t return.  The airport security advised us to call the police. They showed up and decided to start with a small scale search of the airport for her.  Our concern was that her blood sugar drops dangerously low (she can drop down to the 20’s without warning, which is very dangerous) and that she could be in trouble somewhere and not be able to ask for it OR, worse yet – something awful could have happened to her.  After the small scale search turned up nothing, the police then went to a full out search of the airport.  It was the worst 2 hours of my life worrying and fearing that something had happened to my mom.  Thankfully, they were able to locate her, and sure enough – her sugar was low and she was having issues cognitively (she was sitting in the Jet Blue terminal – um, we flew Southwest).  We were so grateful that she was safe and sound…and we dubbed her with the ‘cone of shame’ and told her that she wasn’t able to go anywhere without a buddy from now on!

We FINALLY arrived at the beautiful house we rented and the kids STILL didn’t know what we were doing in Florida!  We got them settled in and asleep around 1 a.m. and Ralph and I headed out to WalMart to pick up food and odds and ends.  We got home and got to bed around 2 a.m. – we were SO exhausted!

The next day, the kids found out that they were going to Disney…

Can we say HAPPY?

and, even BETTER – my cousin, her husband and her son Ryan were there also!  We got to spend that afternoon/evening together and the kids were just SUPER excited!

Running to give hugs!

We got to keep ONE secret – that we were actually granting Sasha’s actual wish (to see Disney at Halloween – the actual Halloween Party) all the way up until the day of the Halloween Party which was at the very end of the trip.  The kids never knew the length of stay, so they woke up every morning surprised that we were staying yet another day – it was a lot of fun doing it that way!!!  Our total stay was 2 weeks, and we jammed it full of fun.   We switched houses 3/4 of the way into our stay – and that place was awesome too!  The houses were owned by the same person and we loved them both so he said we could stay at them both!

First house master bedroom
1st House – Master Bedroom
1st House – Sitting area and Dining Area
1st House Downstairs Bathroom
1st House – Upstairs Bathroom
1st House – 2nd Bedroom
1st House – 3rd Bedroom
1st House – 4th Bedroom – Sasha slept in here…
1st House – 5th Bedroom – Will slept here
1st House – Game Room or 6th Bedroom – you pick!
View from one end of the house to the other….huge place!
1st House – Living room area
1st House – Nook
1st House – half of the Lanai area
1st House – other half of the Lanai Area

And then, the second house – just as beautiful, but not my favorite…..a bit smaller and goes right up to the edge of a conservation area:

2nd House – Living Room
2nd House – Kitchen/Dining Room Area
2nd House – Master Bedroom
2nd House – Master Bathroom
2nd House – Master Bathroom
2nd house Harry Potter Room
2nd House Harry Potter Room
2nd house main bathroom
2nd House – 3rd Bedroom – Mickey Room

2nd House – Kid’s Mickey Room had a bathroom off of it.
2nd House – Bathroom off of the Mickey Room
2nd House – 4th Bedroom
2nd House – 4th Bedroom
2nd House – Lanai

I have to say, I was SO grateful we rented scooters because I didn’t want to bring my power chair and I didn’t want to have to make Ralph push me all over creation in my manual chair.   We decided to leave Beast at home (we put him in a boarding facility that I think he had A LOT of fun at) because I didn’t think it was fair to drag him all over creation in the heat and chaos of Disney and I am SO GLAD we did – he would have been miserable, and the reality was that I had 5 other adults with me at all times, so I had people around me that could help if I needed it.

Will didn’t actually drive one of these around Disney, but it was a cute picture….we would let him tool slowly around the parking lots, which he thought was great!

We ended up going to Disney’s Magic Kingdom…several times…

Hollywood Studios…


Animal Kingdom (twice)…

SeaWorld (twice) – where Sasha got to be a part of one of the animal shows…

Universal Studios….

We got a private meet and greet with “Gracie” from Spooky Buddies – One of Sasha’s favorite movies!

And we also got some other ‘special moments’ in too!

We finally got to meet our wonderful friends Brant, Theo, Emily, and Brady (that’s a separate post coming within the week).

And FINALLY I got to meet my dear friend from the UK, Sarah – her son Jaime was here on his Make A Wish Trip at the same time were we were at Disney.  After being good friends online for 6 or so years, it was SO nice to see her in person!  Jaime has Diamond Blackfan Anemia and is one of the sweetest, bravest, and strongest boys I know!

Our Visit to Give Kids the World to join Jaime and family to see Santa
Fast friends….
My dear friend Sarah and I – I finally got to give her a squeeze!
Sweet Jaime! Love this boy!

I also got to meet my friend Kelli and her fantastic family (it was oh so hot this day!)  We’ve known each other for 10 years online – I was pregnant with Will and she was pregnant with Sydney and we met on an “Expecting Club” message board on iVillage!

Derek, Andrew, Kelli and Sydney!

AND…last but not least, I got to see my sweet friend Julie (and family) again – we’ve now seen each other in 4 states!  She and I also met on this message board but we have had several opportunities to hang out – she’s the best!  Our kids call each other ‘cousins’   🙂

By Wednesday early evening, Sasha started crashing….

Little did we know that this would be the beginning of what would be a full 24 hour crash…..

When the day of the Halloween Party finally came (Thursday), Miss Sasha was not doing well – she insisted on going to Animal Kingdom (for our second trip there) so off we went….this was pretty much how she was the entire morning…

We let her have her say….but she was just doing so poorly (a lot of myoclonic seizures, absence seizures, and falling asleep without warning) that, after only going to the Safari and Rafiki’s Affection Section (which, she had a great time in both places), I told her we had to go home.  She wasn’t happy about it, but I needed to put her health first.  Frankly, I should have kept her at the house the entire day.

All in all, she had slept from about 8 p.m. the night before until 8 a.m., was up for 30 minutes to get showered and eat, and then fell back asleep and then proceeded to sleep for all but 4 or so hours up until 7 p.m. Thursday night. Thankfully, she was starting to perk up and we were able to finally make her wish come true – she was able to not only SEE Disney at Halloween, but she was able to MEET some of her FAVORITE Disney Characters (and yes, they aren’t all the good guys!)

My “Brave” Girl with her Pirate Friend… 😉  Feeling MUCH better after sleeping most of the day.
Hawk Eye and a maiden…. 😉 HA!
So happy to meet the Queen…go figure!
Merida (X2) AND Will….showing off their skills!
7 Dwarfs!
Her favorite!
Cruella rocked!
Great Villains Show

After 2 weeks of non-stop fun, it was finally time to go home and it was a good thing – I think we were all hitting our ‘wall’ and were ready…though I was sad to leave the warm weather!

Yep….asleep, again….

Sasha and I LOVED the hot weather (which was PERFECT – it was warm and mostly sunny for all but 1 hour out of the entire 2 weeks – we had ONE hour of rain the entire time we were there – how awesome is that?) and everyone else was roasting in the mid-80 degree weather.

I have to say, I was not a fan of all the interesting creatures down there…..

What the heck kind of spider is THAT? It wiggled its butt when it moved…creepy!

But overall, it was the most amazing trip that I will cherish forever.

I am so incredibly grateful to my parents as this trip would have not been possible without them.  It was a trip I will never forget – we created some amazing memories, special moments…and we did it together as a family – what more could I ask for?

I missed Beast SO much – I couldn’t wait to pick him up!!!
This was Beast when I first picked him up…..

And Flame and Phoenix were so happy to see my mom too!

When we got home, he had lost 15 pounds, was not himself, and I was worried.  My mom’s dogs were with him also and they were fine.  The boarding facility said he ate well and they had posted pictures of him the entire time and he looked like he was well cared for and loved – but he clearly was not feeling well.  We ended up taking him on Wednesday to the vet because he woke up covered in hives….

Poor pup had such a swollen muzzle – and, you can see he had bumps on the top of his head also….and all over the rest of his body too….

Turns out he had more than one thing going on – the hives were an allergic reaction to something and he also had a fever, was vomiting, and his liver enzymes were elevated. She put him on ‘service rest’ and did a bunch of lab work.  $600.00 later (yes, you read that right) we were on our way home with heavy duty antibiotics and a pretty sad pup.  He eventually perked up by Saturday, but he was pretty pitiful.  We really love our vet so much!  We have to return in 1 week to have labs rechecked (for his liver) and I hope to be able to give him a great report on his progress.  So far, so good!

We have spent the past week unpacking and catching up on everything…and BOY was there a lot to catch up on…I still am up to my eyeballs in things to take care of!

I did end up in the ER one night this week for having a ton of palpitations all day and decided it was best to not wait it out any longer as I was told not to let them persist – but THANKFULLY it resolved within a few hours of me getting to the ER and I told the doctor I really didn’t feel admission was necessary since it had corrected and labs were normal – and I was ready to go home…and he was happy to oblige! I’ve had this doctor before and we know each other well enough that he knows that I know my body well enough to say if I am good to go!  I hope this is a start of a new trend – this is the first time in 2 years that I have been to the ER and NOT been admitted.  Celebrating the little victories!  I even went 2 months and 1 day between hospital visits.  Maybe my body will start cooperating!

We have appointments this week (for both the kids and I) and then it looks like we don’t have ANY medical appointments (unless something comes up) until December!  I can’t tell you how exciting that is!

 On Saturday – we hosted our regular Team Hope/Children’s Hospital blood drive.  We anticipated that it would be a light turnout as everyone was preparing for Hurricane Sandy – but we actually did really well with 48 usable pints and 7 folks who tried to donate but were unable to…so 55 people came out to make a difference….we are so grateful for that!

We even got to sneak out for an hour and a half to Great Brook Farm to take some last minute foliage pictures before Sandy stripped the landscape of it’s beauty…and we brought Beast with us to see if he was up for some good old fashioned fun….no work, all play – totally off duty!  He loved it!

Feeling well enough to play!

You can see the rest of the album HERE

Please keep your fingers crossed that all goes well this week and that we have good appointments…and keep your eyes peeled for another 2 or 3 blog posts over the next 2 weeks, I have lots of great things to share!

Well, that’s enough for now….thanks for reading this far – it was pretty lengthy, but 99% jam packed full of goodness!!!!  I’m going to call it quits before we lose power (lights are flickering) and I lose this post!

More to come….

Love and Light,

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