Here we are...

......and here we go again. We are now just over 1 day pre-op and getting a little restless.
Last Monday the 29th we went to Iowa City and had Danielle's sutures removed. Her incisions are healing very nicely. The top incision is actually where the reservoir is and I guess I didn't realize that until we met that day. That means that the shunt is draining to that area then it proceeds down the tubing and is absorbed by her body in her abdomen. The incision behind her left ear has a pretty good size scab on it that I've been really nervous about just because it is actually on-top of the shunt itself, but all is healing nicely.

Wednesday the 1st we headed back down for an MRI and to meet with her Neurosurgeon. Her scans went great and the results were even better. Her doc said he could not be more pleased with the scans. They literally looked perfect. That was music to my ears! That means her new shunt is functioning properly and doing exactly what it is supposed to do! Phew, SO great to hear!
My Aunt sat in on the appointment with me because we did discuss surgery coming up. His main focus is Danielle and her recovery. The plan for this next surgery is still the same, it will still be at least a 7 hour surgery and her recovery is really what we were told we need to focus on. He flat out said that he knows how nervous I am about the procedure itself and how risky it is and about him and doing the actual procedure, he looked me straight in the eyes and said, 'do not worry about me, do not worry about me doing this procedure, you need to only worry about her and her recovery and how she will tolerate it, I will handle the rest.' AMAZING, seriously. I know I have posted probably at least 50 times about how incredible he is, but truly we are so blessed to have him! And him telling me that, took at least what felt like 10 pounds off of my shoulders, I now know that we will focus ALL on our girl.

This surgery he did say will be more painful for her during recovery. That is what we need to focus on. And this is the part of the brain that controls EVERYTHING. Heart rate, breathing, swallowing, body organs, speech, walking, fine motor everything, and that is part of what makes it so incredibly risky. It is crucial that the fluid does not drain too quickly that it could cause a clot, or to shock any part of her system. So now we will focus on her and afterwards absolutely whatever she needs and this time we will stay on top of the pain meds at least for the first 3 days regardless if she is acting like she needs it or not, she will get it....that is where we got into a pickle before. She has such a HIGH pain tolerance that we weren't giving pain meds regularly because she didn't act like she needed it, well she did, and it got behind and took over a day to catch up. We won't let that happen again.

Hats and accessories are a new part of every day wardrobe!

Thankfully they also protect those incisions really well.

There are a lot of risks here for this surgery, a lot. This is serious and that was reiterated to me again this day. Yet he is very confident and again said he has no reason to believe that Danielle will not come out of this surgery on top. He has no reason to think that she will not handle it. But there is always that risk. We are well aware. And while we would never compromise our daughter, this must be done. It is not an option. And we are so fortunate that we began looking into this surgery back in December because think of all we have learned since then, a LOT. Her life has been saved, and to think of all she has been thru absolutely pains me and us as parents, yet we will do absolutely anything our children need. And again this is not an option to not have this surgery. The risks are serious, there is a risk of death we know that, among other things, yet as he stated he has no reason to believe that she will not, not tolerate this and then the rewards, the opportunity for a whole different life, with endless possibilities for Danielle is awaiting her on the other side of this Friday. That is the hope that we are holding onto.

She has done well since her last surgery. We really have done very low to no stimulation to ensure her optimal healing is taking place. One thing that has been a bummer tho....She has not been eating up to par, in fact I have been the only one that has been able to get her to eat consistently, the bottle that is. Her pouch food she takes perfect, its those bottles that she doesn't like unless they're from Mom I guess. So last Friday Brad and I were absolutely convinced her ears were the problem. Her sucking motion, or lack thereof when attempting bottles, was a lot like how she use to act when she had ear infection. Since she no longer has tubes we called our local doc, started ear drops in the mean time, and were off for a checkup.
Well the check up on her ears went great, they were all clear...so that led to labs, well her profile looked great also, all within normal limits. Ok....then at the very end Dr. Collins asked us to take off her jammies, she looked at her hands and arms and right away said, aaah, yep she's got Fifths Disease. Huh? Yea, we hadn't heard of it either! And it sounds a lot worse that it is, is really just a virus. Weird!! Apparently it is an airborne virus common in infants and kids. It leaves behind a rash and by the time you see the rash, well the virus is already on its way out. WEIRD! So her hands were bright red with some bumps and her arms, ghostly white, it looked as if she had gloves on. Her right leg, same thing on her calf. It was the strangest thing EVER! And it had to come on very sudden, she also had one piece jammies on so her arms etc weren't readily visable to us. But I guess at least we knew what it was, although no medication for it, it was probably the least severe thing that she could have that would not delay surgery. and she said maybe she felt icky, or had some in her throat causing her to eat less.
As you can see by the video's tho we have heard her super sweet voice and it is so precious. Hearing her respond to her brother in the tub is so sweet, its almost like she's yelling back at him! And here, she is perfectly content playing and making herself giggle rather than eating!! You can definitely hear her verbal responses to my questions. These are her responses most of the time, it is how she communicates with us when not using the ipad.

I am telling you it is always something, always! Although her eating isn't back up to par, she is doing better. Tomorrow we will head to the U in the morning for pre-op check ups, labs etc. We have put our name on the list at the Rossi House for hopefully a room, but they are still full so we will wait and see. Dylan will again be in the great hands of our family. We are praying that this is the last of serious surgeries for our girl, there has been a LOT of anticipation over the last 5 1/2 months. The series of events have been so severe and serious that it is really hard to wrap our head around it all, but it has been necessary and maybe not all of it is for us to even figure out. What truly matters is that it is the best for Danielle, and we wouldn't want anything less than the best for her.~