Doctor Visit

We had a doctor visit on Friday. As usual, Ella was all excited to go already as soon as she got out of bed. This time, she herself, had some questions for the doctor. She wanted to know about the drip that was coming out of her "baby balloon" at night time. She was very excited to ask him and was busy practicing her articulation of the question.

Her appointment was supposed to be at noon. But since the doctor sees her on his operating days between operations, we call in the morning to see if the scheduled time is going to work out. Sarah called in the morning and found out that 3:30 would work better. When Sarah told Ella that she didn't have to go until 3:30 Ella said that was okay and that we could just go at the same time and wait in the waiting room. Sarah thought that might be a little bit of a long time.

The time came for the appointment and Ella was again articulating how she was going to ask about her drip. Jim the nurse came in the room first and we told him that Ella had a question. What does Ella do? She starts talking in Curious George language! Jim just kind of looks at her confused. He leaves the room to get his magnifying goggles and Ella starts talking in English again. Sarah and I looked at each other, laughed, and said, "Oh Ella, why in the world with other people do you speak Curious George instead of English?"

We were quite interested in this doctor visit since we had some concerns about two of the expanders. As we have reported in earlier posts, we are not filling two of the expanders because the skin was getting thin in a couple of spots near the incisions. The skin didn't seem to be improving any and there was now one spot where the expander was exposed. So we were anxious to hear the doctor's opinion.

As usual, the doctor didn't seem too concerned. This appears to be his style. We trust his expertise and know that he has seen a lot more of these than we have. He instructed us to keep expanding the largest one (that one looks really good yet) and not to do any more expansion on the other two. Even though we are not expanding them we need to keep an eye on them for any signs of infection. If they were to get infected, the plan then would be to surgically take those two out, use as much of the expanded skin as possible, and leave the other one in and keep expanding it. Needless to say, we are hoping that we don't have to do this.

We are hoping that we can continue on as we are. Right now there is no sign of any infection and Jim says that Ella's body is doing a great job in keeping it away. Our prayer is that would continue to be the case.

I talked to the doctor and gave him a friendly reminder that we really need to have all of this done by August. He didn't seem too concerned and seemed to think that we have plenty of time no matter what happens.

So that's where we are today. We're praying that any infection will stay away. We are thankful that the main expander is still looking very good. And we are thankful for good health in general. When we left, one of the nurses told us that the ER was extremely busy with people with the flu. We are thankful that the flu has stayed away from our house. This might be because Ella doesn't get around any other kids. Yet, with me working in the hospital every day I'm amazed that I haven't brought it home!

Yesterday, my CPE group celebrated the half-way point of our program. We just finished up our final evaluations for the second quarter. For me it was another week of receiving feedback and defending Reformed theology! That seems to get more fun all the time!

All in all, we are thankful that God has led us to where we are. God continues to provide even when our faith and trust is tested. With the recent concerns with Ella's expanders, God's providential hand is again evident in bringing us geographically closer to her medical resources!

Picture Share!

Well, these past few months, there have been quite a few pictures that have been taken that I have looked at and thought "That needs to go on our blog!" Well, of course, so many of them never make it, and before too long, they have become "old news"

So I thought I'd take this opportunity to post a bunch of the "never-seens" that I think need to be shared. Hope you enjoy!

I'll start with a few from our trip to California last November. I just love how much fun everyone is having here. We wanted a picture of my dad with his two granddaughters, but Ella would not cooperate and sit on his lap or next to him. Of course, when Uncle Paul jumped in to help, she was more than willing to sit by and act goofy with him. (:


My brother Paul and I and holding each other's little girls.


A very rare moment of calm - It was so nice to sit and snuggle with my little girl and my little niece. And they both were normally always in high-energy mode, so having them this calm at the same time was quite the surprise. What a special moment. This was the night we had to say goodbye to Paul, Dana, and Morgan.


Here's Ella and her buddy, Paul's dog Buster. This was taken the morning we left California. This one's for my dad. He thought it was pretty neat how Ella and Buster played together - although the only thing he wants to do in this shot is to share her lunch!


And this is the day after we came back home to Minnesota. Definitely no eating lunch outside here! Snowball anyone? Ella will make you one!


The next couple were taken at Christmastime. This is me with my mom's parents, who live in Wisconsin. It had been quite a while since I had gotten to see them, so we needed to get a picture with myself and Ella with the both of them. This one's for my mom. (:


Next is Dave and Ella playing with one of Ella's Christmas presents - Tinker Toys! Ella requested that her daddy build her a roller coaster, and he graciously complied. (:


And finally, a couple of pictures of my great little kitchen helper! If there's some cooking or baking to be done, Ella always wants to get in on the action!

Making Banana Bread...


And Making Grilled Cheese...


Thanks for looking! And I hope you enjoyed our "catch-up" picture share!

More Ella Logic

As Ella's vocabulary begins to explode, it is rather amusing to listen to some of the things she comes up with. I really wish I took the time to write so much more of what she says down. It is really hard to keep a straight face during the more serious or strict moments.

But here are just a couple of her words from today:

- When we were talking about the shape of her head, she replied, "It has an upside and a downside." .... Ah yes, in more ways than one. So much more wisdom in those words than she even realizes.

- When we were discussing the injection that needed to be done this evening, she replied,(through her tears) "You can't put water into my baby balloon - it's too old!" .... We've obviously been talking a bit too much about growing older over the last few days, with it being her birthday, and growing one year older and all.

A Very Happy Birthday for Ella!

It's hard to believe that it was four years ago today that we drove behind the really slow car, in the fog, to the hospital to meet our new little baby girl. Our sweet little baby has sure grown up! It's certainly so amazing to see her change and mature, sometimes seemingly overnight! But at the same time I want to just stop the clock and snuggle with my innocent and sweet little toddler for as long as I can.

But today we turned four. And it was a HAPPY day! Because it was such a special day, we even wore our pretty kitty-cat dress. Here's our birthday girl, posing for pictures!


So, what does every good birthday need? Well, cake, presents, and people who love you of course! And we had all three! I was a bad mommy and forgot to get candles today when I picked up the cake, so Dave had to go out and find some. Ella was so excited about her presents, but did a great job waiting so patiently for him to return before she got to open them. She made lots of good guesses about what could be inside all of them though!



Quite a few weeks back already, I asked Ella what kind of cake she wanted for her birthday. Her response? "Curious George!" As many times as I asked the question, she never once changed her mind about that. So that's what she got. She loved it, and Dave and I thought it was pretty cool too. (:
Here's what it looked like.


And here's our birthday girl letting everyone know how many fingers old she turned today!


Ella got some pretty fun things, but I think her favorite was this book from Uncle Paul, Auntie Dana, and cousin Morgan. I don't know the title, but it's a pop-up book full of diagrams and information about the digestive system - and includes illustrations of throw-up and a little boy pooping on the potty. You probably can't read it, but inside the blue arrow, it says "Guess the GROSS Close-Up" That pretty much sums up the book. Yes, it was "interesting", indeed! (My guess is that Paul picked it out, hee hee) But Ella absolutely LOVES it! So thanks you guys! (:


Even though we had a very small and intimate party - with just the three of us, it was still a great day, and we knew that there were so many friends and family members out there thinking about Ella and remembering her on her special day. We are thankful for all of you, and we are thankful for this day to celebrate the precious little girl that God has so richly blessed us with!

We're Still Hanging In There...

Well, a little bit of time has passed since my last update. We're still continuing with the expansion process. Ella still is not very excited about the whole thing, but seems to tolerate them better and better each time. So we are thankful for that.

On Wed, the 6th we had an appointment, and they were a bit concerned about how the stitch made to insert the back (medium-sized) expander looked. It had a little black and blue color around part of it, which possibly could mean the skin was stretching a little bit too thin along that area. So it was decided to give that expander a break for the week and to follow-up at our next appointment. We did do that, and in fact only did one filling each in the other two during that week.

The following appointment was this past Tuesday, the 12th, and the spot that was a concern was still looking pretty much the same. So again we would just leave that one alone. But there was also a little bit of pulling now on her smallest expander's stitching as well. In fact, there were a couple of, what appeared to be, holes in the skin along that stitch. So it was decided that we will give that one a break now too. So the only expander we are adding any fluid to at this point is her largest one - the one on the right side of her head. But this is the most important one anyhow, the one that is creating the majority of the excess skin that will be used. The other two (that are getting a "break" for now) are actually almost large enough to serve their purpose. At least that's what the doctor thinks.

During this visit, our nurse Jim injected a small amount of solution into the expander while Ella was letting him know how she felt about it all. She was not happy. Well, maybe I should say that her baby kitty-cat Rhapsody let him know their feelings about the whole procedure - he gave a couple of good hisses and loud meows. It was pretty funny. Jim thought so too.

So her head is looking a little rough right now - with all of the bruising, dark spots, and holes along the stitches, but she is still doing very well. We continue to be amazed at how she takes so much in stride. She certainly is our little trooper.

The other day, she looked at me and said, kind of out of nowhere, "my head looks like a mountain." That's a pretty good description right now. But when she said that, I wasn't sure whether to laugh or cry. I think I kind of did both.

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. (: