Monday, February 6, 2012

I Suck At Blog Posting

I really need to get better at this!! Wow! Lol. :)

Vincent started pre-school!!! He loves it and I know it's the perfect fit for him!

V at his Thanksgiving party.







So a lot has happened since my last blog post. Marley is now 14 months old! She had a wonderful "Winter One-derland" themed party. We had so much fun!

Sylvia makes beeeautiful cakes!!! 

My beautiful birthday girl!

Cream cheese, olive, carrot penguins!
Penguin and snowman oreos!


























Chocolate covered marshmallows!
A boy and girl version of little penguin balloons I made, using black helium balloons, construction paper, markers, and tape!













We also had an awesome Christmas morning. My mom cooked breakfast at my house that morning and we spent the evening with all of our extended family and ate dinner. A lot of our family members were able to meet Marley for the first time. Great fun and cheer was had by all. :) 




















Dr. K, myself, and Marley with red cheeks from fighting being restrained.
On Jan. 3rd, 2012, Marley had her THIRD cord blood infusion at Duke University Hospital. It was so awesome! We met a news crew from Charlotte there at Duke and they did a full story which I expect to air soon. Hooray for more awareness! We were also able to meet some other hydro families there, which to me, was the highlight of the trip! Next to the creamed corn breath, of course. :) We learned of some awesome news! Marley has enough blood left to do a FOURTH infusion!!!! Woohoo!!! So exciting!!!!







 

Our new hydro friends!!!! We had such an AWESOME time together!!



Shortly after we were home from Duke, Vincent came down with a stomach bug. He didn't eat one solid thing for four days. It was quite scary! He got so dehydrated, that he was admitted to the hospital overnight for fluids and observation. He kept diarrhea for a long time, but only vomited for about 8 hours. Then, myself, Marley, my husband, my mom, dad, and brother all proceeded to get the virus, too. It was rough! I've never seen so much puke and poop in my life and I really don't care to ever again!











Marley had her strabismus surgery on Jan. 10th, 2012. She was in surgery for a little over an hour and everything went smoothly. The point of this surgery is to weaken the eye muscles in the corners of Marley's eyes so that her eyes will be straightened, and to also avoid double vision. We've had GREAT success with this surgery. The benefits are just astounding. We are very pleased with our results so far, but understand that it takes 3 months for a full surgical result. The after care is very simple. All we had to do was put one droplet of ointment in each eye until the follow-up appointment, which was just a few days later. And that was it! So simple! Marley was back to herself quickly after she woke up from anesthesia.




After Marley's strabismus surgery, she got the stomach bug. It was pretty rough on her, but she only vomited Wednesday morning after her surgery and then she was still eating and drinking just fine over the next few days, but still had the diarrhea part of it going on. Friday morning, Marley had a really bad diaper. She started shaking really bad and she turned blue. I took her to the pediatrician, and she checked out fine. She was fairly irritable all day, but still ate and drank just fine. Friday night, I am so thankful that Josh had just come in the door when Marley vomited all over me. Projectile vomited. And she vomited every single thing she had taken in that day. It was nuts. She started shaking uncontrollably, I think from the force of the vomit. So off to the E.R. we went.






At the E.R. they did a CT scan which revealed a lot more than we bargained for. Marley's ventricles were collapsed because her shunt overdrained, which also resulted in a subdural hemorrhage, which is another word for "brain bleed." We were transported by ambulance to LCH  and ended up needing to stay for four nights to monitor the bleed, to make sure it didn't get worse. If it had gotten worse quickly, the bleed would need to be surgically drained. There's still a chance that it could need to be, but we're going for another scan in a few weeks to check up on it. Marley's shunt was adjusted to 100 to enable her ventricles to poof out a bit and give her brain some cushioning. She tolerated the adjustment very well and she was feeling much better in no time.

Waiting to be transported from our local hospital.

Going into the ambulance. She tolerated the ride well, but was inconsolable once we got to LCH.

Getting some rest as her new shunt adjustment got to work.

Back to her happy self in her LCH jail crib. :)


We've since had an ophthalmologist follow up, everything checked out great, and another neurosurgery follow up, everything checked out great there as well and pending a scheduled scan to check on the bleed. :)  

Now we're ready for some Valentine's day fun and planning Vincent's next birthday! I think that covers it! :)






1 comment:

  1. WOW, it really seems like your family has had a rough couple of months!!!! I pray that the bleed does not get worse and that there are no more surgeries. Your family is in my prayers!!! Stay strong!!!!

    ReplyDelete