Tuesday, December 24, 2013

Merry Christmas from the Willis Family!

I hope you are all enjoying the holidays with your family! I'm sitting in my kitchen, cookies baking in the oven, Jensen taking a nap, and my husband in the next room...we are abundantly blessed! We are all healthy and all under one roof, we couldn't ask for more than that.

Things have been going so well, there hasn't been much to update on until this past week. Jensen is still doing great but we have noticed he's slowing down a little. He's more winded from his normal activities, even bending down to pick up a toy causes him to breath heavily. Of course he is still running everywhere, playing like a madman & always being silly. We are just starting to see that we are getting close to needing his Fontan. Its a reality check after many months of relative normal. 

He had an echo and as per usual with a squirmy toddler, not all of the arteries were visible. His left pulmonary artery and aortic arch have always been areas of concern and of course, we weren't able to visualize those. They were able to see that one of his valves that was had a mild leak before now has a mild-moderate leak. Its something we will be keeping an eye on. Our local team is sending the results to our Philly team and we are going to see what they want to do. Our local cardio recommended a cath so that we could go ahead and get an idea of where he stands leading up to the Fontan. This would also give them an opportunity to stent/open any narrow areas (which we suspect he has).

To give you an idea of how he's doing, over the summer Jensen was satting around 85 consistently (and often times higher). Now he stays around low 80s but has been dipping into the 70s more frequently. There is no reason to rush, he's still doing well overall. We are just getting close to that time where we start planning timelines, looking at plane tickets, getting referrals...ugh. Its all so daunting even though we have done this so many times.

 Even with the Fontan looming and Jensen's blue lips staring us in the face, we aren't worrying about that right now. We are choosing to make this Christmas amazing for Jensen. Of course last year he was still too young to understand anything that was going on. This year he's still a little young to fully understand Christmas but he does love Christmas lights, our tree, unwrapping presents, etc. We are so excited to make this year fun for him =)
We have had our Christmas lights up since before Thanksgiving and we have a small army of light-up Christmas characters standing guard at our house. He waves at them through the window every day. He tries to sneak and unwrap presents. He waves at his Thomas wrapping paper. He is so much fun to watch! Everything is so new and so exciting for him, which of course, makes us super excited about celebrating Christmas together.

 We want to thank you all for another year of support & prayers. We are so blessed to have Jensen here with us this Christmas. I ask that you please pray for those heart families who are missing their warriors during the holidays. Also, please remember those families who are spending the holidays in the hospital. We love you all and wish you a very MERRY CHRISTMAS!

Tuesday, October 22, 2013

He's in his 20s

...months that is! Jensen is 20 months old today! How is that possible?! I can't believe my baby boy will be turning 2 soon. We haven't done much in the way of updating because there's not a lot to update on...which is just how we like it! 
Just sittin in the bed of my truck with no pants on and eating applesauce. No big deal.

Jensen's last cardiology appointment went well. He didn't need an echo since he had a very detailed one in Philly in July. His sats have been high which is amazing & we don't go back until December! His pediatrician visits have also gone well. He had a hard time with the changing seasons and had a croupy cough that kept him up all night and out of breath for a couple of weeks. I was so afraid he would need to be admitted for oxygen but my strong guy pulled through like a champ and we avoided a hospital stay. 
Yes that is a lizard. Ew.
 Jensen is now in speech therapy & physical therapy weekly and occupational therapy bi-weekly. He's improving by leaps and bounds each week! One of his therapists actually said she has never seen a kid have such big improvements every.single.week. like he does. Yep, I got all teary eyed hearing that.
 Jensen is the most delayed in his speech, he is just now starting to say real words (other than mama and dada). I'm happy to announce that his first word was "BOOK". What can I say? He's a genius. He knows tons of signs and is very enthusiastic to learn more signs. However, we are pushing him to vocalize more because we know from his frequent screaming tantrums that he has the ability to talk, now its just about making him do it. Easier said than done.
Exhibit A. Screaming tantrum. Notice the exaggerated arch in the back. Classic sign that a glass-shattering scream is on its way!

Its a rough life being a toddler.
 As far as PT goes, Jensen is catching up and FAST! He can almost run! He is learning to stomp his feet, climb on and off of things, and his balance has improved tremendously! He's so much fun to watch at this stage because he learns so quickly. He is such an active little booger and I am loving it!!
Here he is NOT getting kisses from his cousin Adi! hah!
OT is also going very well. He's been practicing fine motor skills and coordination and is catching up to where he should be developmentally. His biggest concern for OT is sensory issues. We are learning that a lot of his behaviors are the result of over-stimulation/past trauma from surgeries and much more. He tends to lose his ever-loving-toddler mind more quickly than other kids his age. He is still somewhat sensitive about loud noises. He has separation anxiety far worse than you would expect for a kid his age. Hospital life really did a number on him. All of that being said, he's making HUGE improvements.
Cutest. Kid.Ever. We did a practice run in his monkey Halloween costume and he rocked it!
 We are learning to pick our battles, expand his attention span, and help give him control over his environment. Its amazing how one little tweak in his routine can get him back on track and doing what he's supposed to be doing. (I am really loving our occupational therapist for all of her amazing tips!) Jensen is still a toddler and has toddler meltdowns, but I can already see that he's less fearful and timid in new situations.
He's signing "big truck" here. Because anything with wheels makes him smile =)
 Jensen has had so much fun lately. We do weekly trips to Marbles Kids Museum, we've already been to 2 different corn mazes this fall, spent lots of time with the grandparents & he went to the fair here in NC. Also on his list of most fun activities is watching the construction trucks go up and down our street. Seriously, we watched dump trucks come and go for 30 minutes today! Haha! Fascinating stuff!
I hope you all are having as much fun this fall as we are! 
One last note, I'm requesting prayers for my sweet cousin Brooke. She was recently diagnosed with a kidney disease that will require a transplant. She is so previous and so young, please keep her and our family in your prayers. This has all happened very suddenly and I'm praying that a new kidney is just what she needs to get back to her life. Thank you all <3 Here is her Caring Bridge page if you want to follow her.

Thursday, August 22, 2013

A day in the life

 Jensen is now 18 months old!! That seems so unreal to me, where has the time gone?! So I thought I would do a photoblog to show you what its like being a super cute superhero!

We do this almost every day. He loves to walk laps around the yard while pushing his toy (which he totally doesn't need to walk, but he insists on pushing it everywhere!)

I love that fluffy cloth diaper butt of his!

I wasn't kidding, he LOVES to push this thing around every day!

Any time he hears a car (or lawn mower or airplane) he starts waving! He's the neighborhood greeter!

He thinks mommy is hilarious =)

We read...all.the.time. His favorite book is Me & My Dad, closely followed by the Llama Llama books

Jensen is busy being ridiculously gorgeous most of the day.
Yes...he loves to play with my phone. Elmo Calls is his favorite app. He signs "juice" to ask to play Elmo. How that association happened I have no idea??

This is his mad face bc I took something away from him! He's got his daddy's temper ;)
He's cheating! He puts the sign for "eat" and the sign for "more" together and this is what he does! Little stinker always finds shortcuts!

This big smile is because I fed him roast and potatoes. He seriously love to eat!! 
He's such a daredevil and loves to climb around on things

Snackin' with Elmo

While I'm cooking he likes to busy himself in the kitchen too. He gets out our boxes of K-Cups and throws them everywhere! We find coffee in odd places these days.
Working on his ride =)

Showing me his scary face! hehe, I love it!
Oh how he loves snacks

This is the look I get when I tell him no! He puffs his chest up like he's some kind of wild animal. Haha...there's only a certain amount of ferocity when you are wearing nothing but a Charlie Banana.

Its been so rainy this summer he's been sporting his rain gear a lot!

Rainy day ensemble #2
And he also love the iPad. What can I say he's an Apple fan! His favorite app is Mr. Potato Head

I have to give him millions of kisses bc he's so darn irresistible!He likes to give kisses back, but he doesn't actually kiss you, he just makes the sound...its adorable.

This is his "Bat-Mobile" that he loves to ride! He is also showing me his silly face haha!

He crawls all over me! I'm his personal jungle gym!

He love getting dirty! It makes me cringe but he has so much fun!

Getting some practice in...