Phishing and getting soaked

Last weekend was a busy one! Mama and Daddy got to head up to the Deer Creek for a nice weekend listening to their favorite band Phish. They had a good time and were quite exhausted by the end of a long weekend of Phishing.

We also traveled to Wisconsin for some additional phishing and stayed with our friends Miss Sarah and Dr. T. Elias got to explore a fire trunk including playing in the spray of a hooked up hose. 

A Peak into our new Barrel

As promised, here is a peak into our new barrel. Please pardon boxes, bare walls, and evidence that we have just moved ;) A celebration will be held shortly.....Until then, please allow our little monkey to take you on a tour....

The Entrance

The Parlor Room

Monkey's playroom and library

Dinning Room

The kitchen

Breakfast nook

Bath and laundry room....here Elias is showing you how we wash our diapers.

Elias loves to climb the new stairs

Nice bit if stained glass in the stairway

Main bathroom...Elias loves to get into the drawers!

Our new and improved diaper station

Elias' new room

Mama and Daddy's new room

This room has been assigned to be Daddy's man lounge, however it is currently functioning as a guest bedroom for the summer guests

And a new backyard, complete with a sand box for playing!

Our good friend Monkey and his parents came over the other day to enjoy some backyard time....

Happy Summer Everyone!

New Digs

Since our last post from here in the barrel we have been up to BIG things, hence the slight absence from our blogging.

We have left the coziness of the schoolhouse last month and have moved to a new home! We are very excited about the new home with 2 1/2 times the space and a yard! We are now a bit more settled and have 90% of boxes unpacked. Pictures and art are still making their way to their new homes on walls and some "new" furniture is required to fill certain rooms. Elias LOVES his new space including his own little playroom and a sand box! The home is a restored 100 year old Victorian with tons of charm and a good history. We are the fourth family to live here and are excited to add it its good energy. Our neighbors are wonderful (but we knew that since we are only a block away from the schoolhouse.) A picture tour will come this week, as we have not had the chance to take pictures of each room. But until then, here's a sneak peak!

Elias' inhibitor has taken a turn for the BETTER! We are really nipping it in the bud and it has improved with the aggressive treatment. We have only had one trip to the CAT scan (for a playground accident) and one trip to the Children's Emergency Department (fever turning out to be croup and not an infected port.) Hopefully within the next couple of months we will get rid of it all together. Elias has been such a big, brave boy every morning with his infusions. He no longer fights being held down, however band-aids do not last more than 15 seconds....

A Bump in the Road...

We have been very busy here in the barrel. Summer has brought us many pool parties, play dates with new and old friends, uncles moving back in town, graduation from the baby room to the toddler room (at school), getting ready for a big move, and much more activity.

 

 

With that, we have noticed the return of the bum bleed over the holiday weekend and new nasty bruises on little Elias. We hoped that with regular infusions that we would avoid this:

We'll Elias has developed the dreaded inhibitor. Since Elias' body does not make any of the Factor VIII protein, his body is beginning to reject the medicine that is supposed to help him. This, we hear is very common however it must be aggressively treated. We now get to do daily infusions of twice his regular dose in hopes to override this little incident. Please keep us in your thoughts and prayers!

Going forward!

Many exciting events happened here in the barrel this week. On Sunday we celebrated Daddy on Father's Day. We headed out for some lunch and art park. Since parking was challenging at the Indianapolis Museum of Art when we first got there, we decided some Chinese food would be better.

We watched the lovely ladies of Mama's dance company Motus Dance Theatre Dance at the new Art Park, 100 Acres.
On Tuesday we got to visit the Pediatrician for our official one year check up. Elias' new stats are:
Weight: 21 lbs (18 percentile--skinny boy from all that running!)
Height: 29 1/2 inches (30% percentile)
Head Circumference: 48 cm (86% percentile--all those smarts!)
Development: walking with less falls, can crawl up stairs, starting intonations with speech, perfect pincher grasp, basically right on track if not slightly ahead.

So we got to turn our car seat around and Elias is experiencing car rides in a whole new way.

We have also been cheering on our three favorite futball teams here during the FIFA world cup--USA, Deutschland, and of course Mexico....

And discovering new ways to cause trouble....

 That's it from here in the barrel!

Port for the Prince

Elias went in Thursday of last week to get his port. A port is an access place for his hemophilia factor so that we can forgo attempts of needle sticks for baby veins in arms and legs until Elias is bigger. It is a small device placed under his skin and a catheter that runs just short of his heart. The surgery was successful and Elias is recovering very nicely. He impressed the doctors with his quick recovery and high pain tolerance.

After Elias got over the anesthesia, he was back to his old self. We all got a little stir crazy and had to get out of our hospital room in one of the fun Children's Hospital wagons.

We watched the opening games of the FIFA World Cup. Go USA!!! We even got a special guest all the way from Nashville!

Mama was amazed by the agility and speed of the IV poles with Elias walking in the hallways. Since she works with as a physical therapist, her patients are no longer safe.

We thank you all for keeping us in your prayers and thoughts, for we feel that this whole process would not have been successful without your support. Now onto prophylaxis infusions!

Bleedin' Bums

Today was the first day Elias had to get an infusion from a bleed. Luckily, it was only a soft tissue bleed from the likely culprit of falling on a toy or rock on his right butt-cheek. That silly mobility thing....We all know that it was bound to happen sooner or later and are happy that we have made it over one year with only this under our belt. In two days, we go for another attempt of port placement and the start of profy. We'd show some pictures of the infamous first bleed, however due to it's location we felt that it was not appropriate for the wide-open internets.