Monday, August 22, 2011

Just a quickie

Ok, so, Byron and I are both back to work and charging full steam ahead which doesn't leave much energy for "blogging".  So a quick update...Elliot had a neurosurgery appointment last Friday for his month check-up after his last shunt revision surgery.  Good news, Elliot is looking good as far as his shunt goes...Bad news, Elliot needs to have reconstructive skull surgery...boooo.  It seems as if his skull sutures have fused which means little mans head can only grow back which leaves him with his "alien" skull.  Elliot really hasn't had a soft spot since a few days after his first surgery when he was 48 hours its not the Norm for kiddos with Hydrocephalus but its Elliot and we will do what we need to do.  In the next month or so, he will have a CT scan completed and then we will meet with a cranial-facial doctor who will perform the surgery along with Dr. O'Neill.  We will have lots more details after that appointment.  We were told that its typically a 3-4 day stay in the hospital and that Elliot's head will look VERY swollen afterwards, enough that his eyes will be swollen shut and that he won't be discharged till after he can open his eyes again...SCARY!  We are shooting to have the surgery in December since Byron and I have more time then to spend at home with Elliot while he recovers and hopefully he will be fully recovered after 3 weeks.  Needless to say, we will have to have Christmas photos taken before the surgery, otherwise we might scare people, hahaha.  I appreciat that I have a couple of months to process before it all happens, but I can't help but to feel responsible that once again my baby needs more surgery.

What else is new with Elliot...he LOVES food and we are actually having a good time making it all, so far he has tried Avocadoes, Peaches, Pears, Green Beans, Squash, Oatmeal and Cantaloupe and he hasn't refused anything yet.  He is also almost sitting on his own, he is so close, but in true Elliot style when he is practicing sitting he becomes fixated on the ground/pillows/blankets and wants to eat he falls over...he will get it soon!

The HydroWALK is coming up SOON and we can't wait to walk for a cure and meet some new Hydro friends!  Any donation is much appreciated and 100% goes towards research which will hopefully one day help Elliot to not have to go through so many surgeries!  Thanks Everyone!

There are no words

"who me?"

Very curious

6 months old

Loves the diaper changing table

Practicing sitting

...and practicing falling

Such a sweetie

New swing in the front yard

Daddy mini-me

Monday, August 8, 2011

Gun Jumping

Happy half-Birthday to Elliot!  Seriously has it been 6 months?  Its been an amazing, life changing (to say the least) 6 months!  So is it normal that my 6 month old baby is wearing 12 month clothes already, haha...

Ok so a little explanation of the "title"... We had Elliot's one week check-up after his shunt revision and we were given the go-ahead to continue with our summer travel plans.  Let's just start by saying that I have been looking forward to our summer plans all summer and have been soooo excited to go back to Pennsylvania and Ohio to show off Elliot to many friends and family.  Well, the next day, we hopped in the car and drove 30 hours to Clearfield, PA!  Elliot traveled great during the nights and not so great during the day, but can you blame him, I wanted to get out of the car as much as he did!  While is PA, Elliot got to meet his Aunt Annisse and Uncle Scott and his cousins Corinne and Nick.  We were also fortunate to see many other friends and some family until our trip was cut short...dun dun dun...

After being there for a few days I was nursing Elliot and mid-eating he started throwing up...ALOT.  Now I know that lots of babies throw up, but the only time Elliot has ever thrown up has been when his shunt has malfunctioned.  So that is all we have ever known or experienced with him.  That night he was acting "off" and not wanting to lay down, which again, looked very similar to the last malfunction.  After a long night of going back and forth and not knowing what to do, we decided it was in Elliot's best interest to head home to Colorado.  Its hard because we are sure there are great Neurosurgeons in PA, but they aren't Elliot's Neurosurgeon and its a hard thing to trust someone with your child, especially your child's brain!  After Elliot's last malfunction we told ourselves that we would trust our instincts better the next time something like this occurred...well boy did my instincts feel a little foggy, I'm still not sure they are quite there.  So the next morning, Byron and Filson started driving back to Colorado and I hopped on a plane with Elliot.  Let's just say, I should have the strongest arms ever!  It was not easy to travel by myself with Elliot, that kid is HEAVY and he did not want to be put down in his stroller or sleep, so it was a long day.  Byron had an even longer day considering he was driving, but he did pick up a driving buddy in Chicago to keep him company and help with the rest of the trek (big thanks to Pam!). 

So this whole time, we were in constant communication with Children's in Denver and the plan was to watch Elliot and if his symptoms became more acute to come in.  Lucky for us, my mom was in Colorado because Blair and her drove out together a few days earlier to move Blair back into school at CSU.   So, my mom came and picked me up at the airport and we headed home to continue to monitor Elliot.  Byron made it home the next morning and then the monitoring continued.  So after a few days on edge and not knowing and "monitoring" little man....HE IS JUST FINE!  We will never really know what happened, but its possible that Elliot had some blockage and then it cleared on its own. We couldn't be happier that he is Ok and he didn't have to have another surgery so soon, but at the same time its very frustrating. 

We would have never done it differently, but it is a little frustrating to not be spending our last couple weeks of summer visiting family and friends.  We were lucky enough to have a few days with Byron's family, and then to spend some time with my mom back at our house...but boy did I want to get out of Colorado for a couple of weeks.  We have tried to remain positive about everything with Elliot's condition and so far he is doing amazing and beating all odds in our minds, but I guess this past week gave me a little glimpse of how Hydrocephalus does affect our lives.  I hate hate hate hate that Elliot will have to deal with this his entire life, but Byron and my new favorite saying is, "it is what it is"...ok thats enough of the Debbie Downer in me.  We are excited that he is doing great and Byron and I can't wait till he is old enough to tell us when something is wrong with his shunt!!! haha. 

So on that note...we have another opportunity to raise money for Hydrocephalus research.  We are attending the 8th annual HydroWALK in Denver in a month. In March all our friends and family helped us raise $1600 for the HydroWALK in Steamboat, which is AMAZING and we are so thankful for that.  We have set up another donation page which makes it quite simple to donate, even a donation as small as $5 is greatly appreciated by all of us.

Alright, well we have one more week of summer left before Byron and I head back to work and we are soaking up every last summer minute with Elliot!

Farmer Elliot, picking his own green beans

I love avocados!

Taking a nap on Uncle Scott

Cousin loving

Aunt Annisse snuggles

I love sweet potatoes!

Corinne and Elliot sitting on the princess seat

Family photo

Elliot says, "whats going on Grandma?"

Clearfield, PA

So tired

Pam's here!

Elliot says, "Grandma, but I love to eat my hands"

Elliot chews on everything with his new 2 bottom teeth

Auntie Blair

Snuggling up to Grandma

All eyes for Grandpa

Elliot and Alise

Elliot meets his great Grandma