An Update! Finally!

Well, we've definitely been through a little bit since my last post. I know I'm very delinquent - sorry mom!

On Wed, Jan 23 (exactly 2 weeks post-op), we went in to the doctor's office for the first saline injections into Ella's expanders. The nurse, Jim, basically explained and showed how the injections were to be done. He walked me through each step of the process - explaining exactly how to use all of the sterile equipment, and how to best keep everything sterile through the process. It was a lot more complicated than we thought it would be, that's for sure! Well, the whole "sterile" part of it anyway. We weren't prepared for that to be as big of a concern as it was. Another thing we weren't prepared for was how big the syringes would be. When you are used to the 5 ml pediatric dosage syringes, the 100ml syringes look rather huge! Like, 20 times bigger huge!

So the first injections were completed. Ella did extremely well. I don't think she was paying a whole lot of attention to what we were doing because there was a rather intriguing cartoon on at the time. In fact, the most upset she got was when Jim blocked her view of the tv. So we were very happy about that. We scheduled to meet with Jim once more on Friday, the 25th where I would basically do the entire procedure alone, as he was watching and coaching, just to be sure we had it down-pat. And Ella once again did rather well, although she did let us know that she wasn't exactly "enjoying" the pressure of the water going in. So we knew she felt something, but she quickly bounced back from any upset. A good sign indeed. We went home loaded down with supplies - six injection times worth.

To date we have done 5 of those injections at home (about every other day) - and Ella has not been a willing participant in any of them in any way whatsoever. We don't think she is necessarily in any pain, but she does feel some pressure or cold in her head, and doesn't exactly care for that very much. I think her being able to see all of the supplies - the needle, syringes, gloves, etc makes her nervous. As does the anticipation of what may be to come. So Dave and I have been through some stressful and tense moments. It definitely is not easy inflicting any pain or upset on your little girl who has been through so much already.

But the good news is that we have been able to smile a bit at some of the ways she has expressed her extreme dislike for the process. Such as the time I brought down the supplies, and she immediately mentioned that she was "Not doing that!" "Not today!" That it was "Not a good thing!" and proceeded to grab the kit and run. She came back downstairs a few minutes later, thinking she had foiled our plan. But Dave easily found it in our bedroom and brought it back downstairs.

And then, as Dave was pushing some solution into one of the expanders, she had a few choice words for him in the heat of the moment. She told him to "get away from me you stupid man!" Huh? Did she say what we thought we heard? Yep. Because she said it again. We're not sure where those words came from, and we definitely would not encourage their use again, but I must admit I had a little smile on my face when that phrase came out.

So, the injection process has not been as smooth as we had hoped to this point, but we are hopeful that it will get better with time as she gets used to the procedure. And the good news is that she does seem to understand exactly what we are doing and why. And she is very excited about having her "pink" go away and to have hair there once again. And she also seems to be functioning amazingly well in her everyday life with the expanders. So we are very grateful for that. She has been able to sleep very well, which was one of our main concerns.

So now, so that you will be able to see the changes in her head shape and size along with us, I am going to post a couple of pictures. I hope to do this every so often, as more and more fluid is injected, and the expanders grow. These pictures were all taken this past Sunday - after the 7 total injections. I took them while she was in the tub because her scalp outline is much more visible than it would be if her hair were covering it. So you really get a good picture of the shape the expanders are taking.

This is a view from the front. I like this picture because you can see she is still smiling - still very much enjoying life! - even with what she is dealing with right now. (: Notice the bulge above her left ear. This is the smallest of the 3 expanders - her "baby balloon" as she calls it. It is almost half full at this point - the goal is at least 65 mL, and we are at 31.



Here is a good view of the largest expander. It is above her right ear, and basically takes up the entire right side of her head. The goal for this expander is for it to have at least 1000 mL. We are only at 150 at this point.



And then, finally, here is a shot of the back of her head - where her medium-sized expander is located. The goal for this one is at least 350 mL, and we are at 112 right now.



So her head is definitely taking on a rather crazy shape, and the bulges will continue to become larger. We will certainly be glad when they are out and everything is done with! We have our next appointment tomorrow (wednesday) afternoon, where they will see how things are progressing and send us home with many more supplies I'm sure.

We had planned on doing an injection yesterday, but Ella came down with a horrible fever soon after she woke up. It was around 102, so I took her in to be checked out. She was very tired, and kept saying that she "couldn't walk good" and that her legs and bones were tired and sore. Of course, my first concern was an expander-related infection, so I wanted her checked out. So she got out of her planned injetion yesterday. But today she woke up and seemed like her usual self, so hopefully whatever it is she had has passed. We are thankful for that!

Now for a picture to leave you with. Daddy and Ella reading Curious George before bed. I love how Ella's leg is wrapped around Dave's arm in such a crazy way. Yes, she truly is our little monkey. (: