Only Chris knows that I was really upset 2 weeks ago when the possibility of Wynnie's shunt having failed had come into the conversation with our pediatrician. Not only was I upset, I was straight up bawling and Chris had no clue why I was upset and who's fault it was that I was crying. Sometimes I actually feel sorry for men having to navigate through their wife's emotions. A shunt failure is very bad news with lots of implications that I didn't want to deal with.
Today our neurosurgeon confirmed the most greatest news -- the shunt is working just fine. There is no indication of swelling or cranial pressure. What does that mean? Wynnie is not living in constant pain with throbbing headaches. I had to ask her three different ways because she was talking lots of neuro lingo and for as smart and Chris and I like to think we are -- I had no idea if she was telling us good news or bad news. From reading Chris's facial expressions, I don't think he knew either. Once it got through my thick skull that everything was ok, it felt like a huge relief! Not only is his shunt working well, it's actually ok for him to have a little bit of fluid in the brain to help cushion everything. What we thought was maybe worsening hydrocephalus in the scan was just his normal fluid (considering all his other underlying conditions) for him. His head has actually slightly decreased in size (which is proof his brain isn't swelling like it was before the shunt operation)
Thank you Wynnie for giving our family a big victory today! Thank you for letting us rest our minds from worry. Any minute wasted on worrying is a minute wasted on enjoying you Wynner.
Thursday, October 3, 2013
Dori surrounded by food -- he was in PARADISE!
I don't know how much Luna was enjoying this but Wynnie certainly was
Wynnie watching sports with Chris outside
Wynnie during his CT scan, confirming fluid is re-accumalating in brain (hydrocephalus)
Wynnie imitating Miley Cyrus.
Ben in his "baseball ready" stance
Dori working on his art during occupational therapy with Miss Rhonda
Thanks to all our friends and family who donated for Ben & Alex's Boosterthon Fun Run. Ben is busting a move in the Boys vs Girls dance off. Clearly, he made the boys win! He's on the far right on the floor.
It's been super busy lately. Business travel, lots of studying for Chris (CFP exam next month), sports for both Ben and Alex, and all kinds of appointments and meetings for the babies. I'll keep this blog entry to a list and let all the photos and videos do the "talking" for me.
1) Wynnie has an appointment with his neurosurgeon tomorrow. Unfortunately the shunt may not be working as well as we had hoped to stop fluid from accumulating in his brain. The original doctor who was a total rock star left Childrens so we will be seeing another neuro at Childrens. Not focusing on worrying or stressing about it until we get the official prognosis and game plan. Easier said than done.
2) Ben asked me yesterday if there's recess in college. My response "anytime you're not in class or studying IS recess." His eyes got real big and he cupped his hand on his chin...real pensive like.
3) Alex said when he grows up he'll buy 3 black GMC SUV's so that everywhere he goes he'll have all three driven at once so that people think he is in the CIA. I said instead of paying people to drive around him all day, he can just actually WORK for the CIA. Obvisouly that thought hadn't even occurred to him. I just saved him about $75,000. You're welcome Alex. This conversation was preceded by Alex announcing that he'll miss me terribly when he goes away to college, but he'll look forward to eating pasta for breakfast, lunch and dinner when he gets there.
4) Dori continues to eat eat eat nonstop. If he's not singing, talking, calling off everyone's name like roll call -- you can count on him eating. We think he has a hollow leg.
5) Ben has been playing like a boss in the outfield for baseball. We are so proud of him!! His coaches have taken notice and we're happy to see him take a leadership role both in the outfield and in the dugout. Go Ben!!!
6) Both Ben and Alex (along with all the other 4th graders in the Lewisville school district) have received their own iPads to use for class projects. It's amazing to see how focused they are in using their educational apps, messaging their friends, and playing a mean game of Madden. It's inspiring to see how the teachers are integrating the technology into the learning process. All we had growing up was Oregon Trail. We had to touch something plastic to "ground" ourselves before touching the massive computer. Remember that!? Don't get me started about the prehistoric graphics on that game... worse that I always lost due to starvation or lack of survival supplies every single time. That game was bad for my self esteem now that I think about it!
7) Luna has turned into a very protective and mean dog -- but she is only mean and protective when she's in the car when we take/pick up the babies from school. Nobody can have any hand/arm/object in the car that isn't just myself or the babies. You wanna open the door (not me)? She'll bark at you. You wanna put the babies' backpack in the car through the open window? She will bark in your face. You wanna help buckle the babies into their car seats? She will growl at you and be stuck next to the babies face until you finish. I'm the only one who can do it. So strange since at home we have tons of nurses and therapists in and out all day long and she is always happy and excited to see them.
8) October is Dori and Wynnie month!!! Our 4th annual National MPS Society Halloween Spooktacular will be on October 19th. Looking forward to a great time. The babies' FIFTH birthday is on the 27th!! What a huge milestone!! We've been heartbroken by the number of ML2 babies that have passed away this past year so we feel especially blessed that God has allowed us yet another year to love on, snuggle and play with our two precious angels on earth.
9) Dori has replaced some of his standard nursery rhymes for R&B songs. His favorite is NeYo "Let Me Love You". He also chooses at times to not sing like a baby, he sings fancy... like adults where he drags out the notes and maintains his pitch and shakes the length of the note. It's so stinking cute!!!
Stay tuned for more news on Wynnie's neuro consult, Ben's blossoming baseball career, Dori's massive overeating frenzy, and Alex's predictions on his future. Thanks for your continued prayers and friendships!! We hope to see an abundance of creative and scary costumes for our party (pictures will definitely be shared here!) and look forward to raising money in hopes of a cure. Happy Fall Y'all!