Fill #9

These last few weeks really have been momentous for us. To add to my previous post, we eclipsed 200 cc’s at our last fill this past
Thursday. We were able to get 24 cc’s which puts us as 212 cc’s, or
85% of our goal. I was hoping for 88% on the day Evan turned 8 months old but beggars can’t be choosers :).

We also have experienced our first potential roadblock. I am trying to be positive and optimistic, but I feel as though we were due for an illness. Besides a milk and soy intolerance (which Evan has outgrown, lucky me!), Evan has not been sick thus far. We noticed one of his daycare girlfriends had a terrible cough when picking him up Thursday
night, so we decided to play it safe and I worked from home Friday. I noticed around 11am that Evan felt rather warm. His spirits seemed ok but he was also a bit clingier than normal. In true paranoid mom fashion, I took his temperature and it read 102.0. That is by far the highest his temperature has ever been, and he deteriorated from then on out. He constantly had to be held, and he was going in and out for most of the afternoon.

I immediately called his nurse in Chicago and she decided to put him on antibiotics. Unfortunately, I didn’t think to try to get Evan in
with his pediatrician as he was responding well to the Advil at this point. When Jeff got him, he got the drugs and Evan yet again started to go downhill. We took his temperature again, and it had spiked to 103.2. We were borderline freaking out at this point and almost out the door to the ER, but we decided to leave a voicemail with our pediatricians nurse line (they had closed) and call our nurse in Chicago yet again to let her know his fever spiked.

The reason we are so much more paranoid than normal is that not only do we have to worry about Evan getting the normal baby ailments like the flu, a cold, ear infection, etc., we also run the risk of his actual expander getting infected, which could be extremely detrimental.

The nurse in Chicago had us check his bubble for discoloration and/or heat, neither of which were an issue. His pediatrician also called back and eased our nerves by telling us he was probably ok to just monitor until their walk-in hours Saturday morning. We just need to
stay ahead of the Advil and make sure he gets his antibiotics once a day. His left ear did look pink compared to his right, so my money is on that. My money is on anything other than an infected expander.

My mom flies out tomorrow afternoon to watch him these last few weeks, thank goodness!!
Please keep him in your thoughts as we need a healthy boy when we head to Chicago in two weeks…

Fill #8

We completed Evan’s eighth fill on Thanksgiving. It was the first fill where we had the whole day to prepare. Typically, we get home from work, gob on the numbing cream, wait an hour, then get the process started. But as most parents know, you are going going going from the second you pick up the babes until the second you go to bed. It was so
nice to relax during this fill and take our time. We complete the
fills during the week so we can easily reach out to the nurses/doctor should we need them.

Because of the fear of germs, we decided to have an JeffAshleyEvan turkey day. We typically spend the holiday with my family, but that would have required flying out to LA, which was just not in the cards. Jeff’s family rolls 30+ deep for T-day, and we just have no idea who
might be on the verge of getting sick as we are in the middle of
cold/flu season. It is hard for me to be this precautious because I’m by no means a germaphob! But we wanted to do what was best for Evan, which meant hosting a dinner for the three of us. Luckily, Evan took 4 hours worth of naps which gave us a ton of time to prepare and eat the
meal without having to rush.

This fill was also the first fill we completed without guests/helpers. We weren’t concerned, and as usual, Evan did wonderfully. We got in 23 cc’s which puts us at 188 cc’s, which is 75% of our goal. It is just
crazy that two weeks ago we eclipsed the halfway point, last week we hit 2/3, and this week 3/4. We are so close!

















































Teething?

Fill #7

We did Evans seventh fill on Thursday and got in 22 cc's which puts us at 165 cc's or 66%.

My dad took a video of the process - link is below!




http://www.youtube.com/watch?v=Y4sXgHpPcsE&feature=youtube_gdata_player

Fill #6

We are officially more than half way done with Evans expander…so hard to believe! My mom was in town for a few days and was able to watch us complete fill number six. We got in yet again the most saline yet, 24 cc’s, which puts us at 143 cc’s or 58% of our goal. Nana was amazed at how seamless the process has become, because for most parents, sticking a needle in your kids head isn’t something you are ever prepared to do! The process doesn’t phase me in the slightest at this point, and I finally feel as though we can see the light at the end of the tunnel.

Not much more to report on our end. Evan continues to amaze us with his enthusiasm and attentiveness on figuring out the world. He seems to be turning into such a little boy more and more each day. We love being able to play with him but at the same time, it is hard when you realize your newborn is no longer a newborn! We are happy that Evan isn’t crawling (although he cries while on his tummy because he kicks and kicks those legs but nothing happens) as we continue to try to get keep him and his bubble healthy and safe. We leave for Chicago in exactly one month from today. The process has been going so perfectly and smoothly that I can’t help but be pessimistic about the next four weeks although I’m trying to stay positive!






























Tebow nap

Making Progress

About half way there...

Fill #5

Even though I updated this blog not that long ago, I feel as though a lot has happened in a short period of time! When we picked Evan up from daycare on Friday, one of his girlfriends (who is 4) said his bubble looked smaller. I had noticed the few days before and felt the same way, but assumed it just morphed due to gravity. I ran my hand across the top of the bubble, and quickly noticed there was an area that felt empty. Kind of hard to explain but hopefully pictures below show it better. Jeff and I were immediately concerned that there was a leak. We are adding so much saline each week, so this bubble should only continue to get bigger and protrude more, right?

When we got home, we put the numbing cream on his port per our usual Friday routine to begin the filling process. In the meantime, we contacted one of the nurses in Chicago to voice our concern and get the green light to proceed with another fill. I sent her a picture so she could see the bubble, and she quickly eased our nerves by letting us know this was not an issue. The bubble went into his head folded, and the seemingly empty top part of the bubble is simply a result of the bubble unfolding, gravity, stretched skin, and the fact that we were due for a fill.

Jeff and I were freaking out and were still a bit skeptical. We proceeded with his fill, and were able to get in the most saline yet, 23 cc’s. That puts us at 119 cc’s total, which is about 48% of our goal. Hard to believe we are only half way there as I cannot imagine a bubble 2x as big, but at the same time, this process has absolutely flown by! Evan’s Aunt Hallie and Uncle Alex came by to keep him occupied and he once again was awesome, not making one flinch. We emailed the nurses and Dr. Bauer a picture of his bubble, which yet again by late Friday, had an area on the top that looked unfilled. Dr. Bauer immediately responded that we were fine, and to keep up the good work.

What do you think, does the bubble look smaller or are Jeff and I just going crazy!!??




Indent pre-fill




Post fill... Does it look bigger (TWSS)
















Wearing an adult sized hat












Conflicted