Fun In The Snow!

Well, I was going to start this post by saying that one thing us freezing midwesterners can do that you sweltering west coasters can't is to play in the snow. But then, a certain california family reminded me with their recent post that they can do that too - and in 60 degree weather no less! Ah well, at least we get the 24 hours per day/7 days a week/unlimited number of winter weeks view of the snow out our window - and don't have to drive to it anyway. Yes, the joys of living in the midwest. Sigh.

But at least Ella loves it! And that's what matters the most anyway, right? And the poor little girl has definitely been jipped of quality "fun in the snow" time this year. With the way too freezing temps, limited daylight hours left once she woke up from her naps, and her expanders being in, outdoor playtime hasn't happened for quite some time......until yesterday that is!

With the pefect amount of snowfall remaining, the perfect (meaning, above freezing) temps, and Ella being pretty much recovered from her surgery, Dave took the opportunity to take her outside for some sledding with daddy! So here are a few pictures of their time together:

Here they are, at the top of the hill. Wait, is that really TWO sleds I see? Can Dave really be planning on sending Ella down all by herself? Oh, my anxious heart....


Yep, she's going SOLO for the first time!


A close-up of that picture - look at that huge grin! I think she loved it!


And....the safe landing. Okay, "phew" I can breathe now.


As soon as she would stop, she would giggle and say "That was Fun! Can I go again Daddy?" And again she went. I lost track of how many times. But it was certainly a LOT!


The next thing she decided to do was to plop down and make a snow angel. Well, angel wings anyway. She got the arm motion down, but wasn't quite getting the whole moving the legs part. After the work was done she would get up, admire it, and find a new space to plop down. It was pretty darned cute.


Here's a picture of the two snow bunnies. Dave knelt so niceley next to Ella for a picture, but as soon as we told her to look and smile for a picture, off she shot up the hill. She never was a willing picture poser, and today wasn't going to be any different. We finally told her that she needed to stand by daddy for a picture if she wanted to sled down the hill again. Bribery works pretty well with 4-year-olds. So she did stand still, but she still wouldn't give a nice smile. Oh well. That's our Ella!

One More Good Thing About Saturday Evening Church Services

The worst night of the year, for me anyway, has always been this horrible horrible night that is coming tonight - the night where all of the clocks (well, I think there are a few rebel areas of certain states maybe) are "Sprung Ahead" one hour. Sounds so chipper, doesn't it? Well, for me, losing an hour of sleep is a terrible idea. Having to get up for church an hour earlier on this day every year makes for a very groggy morning. No fun at all.

Well, this year, maybe the only year ever, I am not minding the time change at all. We went to church TONIGHT! Ha! And don't have to get up early for anything tomorrow. We are sleeping in! Yay!

Now we just have to hope that Ella will get that memo too.....

So, "Nighty Night" everyone! We will be dreaming about you tomorrow morning as we are sleeping in, snuggled under our covers, and you are walking around your houses with your eyes half-closed, donning your Sunday best! (:

Looking and Feeling Better!

Yesterday we went to the doctor to get Ella's drain removed. She did SOOO good, and was SOOO brave! The doctor is very pleased with how she looks. He is impressed that some of the areas of skin are already laying quite a bit flatter in so short a time. So a great follow-up report!

The first thing we did when we got home? Took a much-needed bath! I gently washed Ella's hair, but didn't even try to comb it out. Then today, when she came in to my room as I was still laying in bed, the first thing she told me was that I was stinky and needed a shower. Well, that's really a nice "Hello!" I thought! But it didn't take long for me to realize that was she was REALLY saying was that SHE wanted to go in the shower - so that's what we did this morning. So I have a clean-haired girl anyway, even if still dishevelled!

Here are a couple of pictures from today. She has not been a good cooperater posing for the camera lately. These were actually both taken as I "tricked" her into coming into her room. I clicked the camera just as I saw her come running through the doorway. So they are action shots.




Oh, and just to comment on her forehead area - the stich you see is her hairline. What appears to be a bald patch above it is actually not bald, there is a little bit of hair starting to grow back there. This is one of the areas that was pulled out by the surgeon during the expander insertion surgery. So there are hair follicles there, the hair is just really short!

Our Puffy Little Girl

So we're not exactly sure why, but Ella's face - especially right around her eyes - is really swollen right now. When she woke up this morning, her left eye was just about swollen shut. She definitely looks quite a bit different than she did a few days ago.

Here's a picture I took today - you can see the left side of her head here. I realized that I had not posted a good picture of this side yet. And this is where all of the "pieces" came together - so it's kind of interesting to see. You can also see her puffy little face. Hopefully the swelling goes down soon.


Here's another picture from today. The quality isn't the best (flash setting wasn't right and Dave's feet in the background - oh well!), but I wanted to show that, even with what she's been through, and how tired she is, she's still has a big smile on her face, and joy in her heart - and that makes us smile. (: She also has this sweet little voice right now. It's just so gentle and soft. Makes you willing to do anything she asks of you, that's for sure. (:

Drumroll Please!....................

This morning was when the drumroll sounded for me - as I snipped the netting and our RN Jim slowly unwrapped the long piece of gauze that was covering Ella's head. Here is what she looked like after surgery, with all of the dressing still on her head:


And here is what she looks like now, with no more skin graft and no more expanders. The beginning of life with a full head of hair once again. (:



With that being done, we were more than ready to go HOME! Well, Ella actually wanted to stay in the hospital longer, but she was outvoted. So today we did just that - and it sure does feel good!

As was expected, Ella was very sleepy (and thirsty!) for quite a while last night. Until exactly 3 o'clock a.m., when she decided to become wide awake, and full of one story after another to tell me excitedly as we sat in the rocking chair. She never really did fall back asleep, and then we had the doctor who is doing a fellowship under ours come in to see her twice, our RN Jim came - to do the "unveiling," - and then our doctor came to see her. After that, it was time for a trip to the playroom, other exciting adventures outside of the room, and then discharge. So, needless to say, by the time we were packing up to go, Ella was beyond tired. Here she is as we are just about ready to leave. I wanted her to open her eyes for a picture, but they were just way too heavy.



Good thing she is now home, in her own bed, and getting that much-needed nap. (:

Surgery results

Praise God from Whom all blessings flow -- mission accomplished! The journey that began during the afternoon of August 13, 2006 is coming to an end as our Ella once again has a full head of hair!!! Yet, we are not able to see it because her head is fully bandaged.

I had a feeling that today was going to be a good day when I woke up, looked outside, and saw that the horrible weather that was predicted for us overnight seemed to have completely missed us. We made it to the hospital in plenty of time and it wasn't long before we were able to speak to our surgery team. In this conversation they told us that the plan was to remove two of the expanders, deflate the third expander, use what they could from the expansions, and then leave in that expander so we could continue expanding. This made sense to us.

Before the surgery Ella was her usual self. This morning her thing was to play with her cats and pretend that they were trying to escape out of the room. Fortunately, she was able to catch them before any escaped!

About the only time that Ella seemed to get anxious was when they came in the room and told her that it was time to go to the OR. She cried as Sarah and the staff took her down to the OR. But once she was there it wasn't long that they were able to get the mask on her and she was soon sleeping.

Shortly after she was in the OR, Jim the nurse came out looking for us. He was looking for our expansion records that we were keeping at home because he wanted to add to the records that they added 75 cc of water to the largest expander in the OR. This was a major expansion considering that we were usually adding only about 15-20 cc at home. We couldn't believe they were able to add that much and wondered what that must look like. Apparently they did this to get as much elasticity as possible in the scalp.

They originally told us that the surgery would only take about an hour. But it wasn't long and an hour was past, then two, and then three. Finally, we got some word that the surgery was going well.

After about 4 hours the surgeon came to talk to us. The first thing that he told us was that all of the expanders were out and that he got the entire area covered. He congratulated us on how well we did with the expansions and said that the aggressive expansions that we did over the weekend were a big reason for today's success.

The surgeon was extremely happy with how everything went. He said that he thought he might be able to do it today but wasn't sure so he didn't want to get our hopes up. But everything went, in his words, "perfectly." We said it was divine intervention and because of all the people praying for us. He said, "Yep, that's what we said in the OR -- her dad's a minister." Then he told us that the timing of the date of the surgery was perfect since next week he would be in Vietnam doing some medical missions. Granted, he would've preferred that the expanders would not have become exposed and he could have waited until after he came back. Yet, no one was complaining.

Ella is now in her room. She is extremely tired and I don't expect any trips to the playroom tonight. She hasn't quite yet caught the joy of the situation. That probably won't come until she's able to look in the mirror and see that her "pink" is all gone and she now has a full head of hair. Having mom comb her full head of hair is something that she's been looking forward to for a long time!

I end this post where I began -- giving praise to our God! We are thankful for his leadings and his faithfulness! Now we continue to pray, as we have in the past, for Ella's continued recovery.

Out of Surgery

Ella is out of surgery and is in the recovery room. We are waiting for her to be brought up to her hospital room. Surgery went well -- more details later.

Our Little "Butter-Bwy"

"Daddy, can you come and play with me?" It's a request heard nightly in our home - after daddy comes home, dinner is eaten, and the dishes are cleared usually. Tonight was no different. Well, except for the daddy coming home part - and having a Sunday with daddy not working is something I definitely don't take for granted!

So, tonight's play activity of choice? Playing "Butter-Bwy!" Dave helped Ella get on her butterfly gear, even put on some of his own (sorry, no pics of that), and they did some butterfly flying and dancing. I'd tell you the words of the song dave made up, to go along with the dance, but I'm afraid they may be copyrighted and I don't want to get into any trouble. Hee hee.


Soon, the game turned into "the butterbwy hits the ladybug (a backpack held by dad) with the plastic bat." That was a new one. Dave called it "an accident waiting to happen" and Ella reapeated that phrase a few times. That game was short-lived, and thankfully an accident never did happen.


So these are a couple of pics of Ella with her expanders - at their largest and their worst. You can see in this one what the exposed spots looks like. They are really an odd thing to see. Sometimes they look black, and sometimes they look clear, depending on the angle. Kind of scary and intriguing, all at the same time - depending on my mood, I guess!


So tomorrow is the big day for Ella. We have mentioned to her that we are going to the hospital and that they will be taking her balloons out. She's not exactly excited about it, but not upset either. So I'm sure she'll do fine - she always does. She has already decided that her baby kitty Curtsy will be coming with her - because she does not "hessle" (hiss) - like the other two boy baby kitties do. She's a "good cat" - the others are "naughty cats." So at least she's looking out for the best interest of her doctors and nurses! She doesn't want them to have to deal with her hissing kitties! (:

It's funny how much different I feel about Ella going into surgery this time than I felt the last time. This time I feel relief and calm. Last time I felt dread and stress. Dave and I are both just so ready for these expanders to be taken out - and to not have to worry about the exposed areas anymore. We just pray that there will be plenty of extra skin to cover the area and we can finally say the word DONE! Of course, we know that it is very possible that there won't be enough, but if we're not done, we will certainly be able to handle whatever needs to happen next. It would just be so nice to not have to. (:

We thank God for our little "butterbwy" - for the courage, strength, and joy that he has so engraved into her little personality. And for the peace and strength he has given us through each step in Ella's medical process. We also thank him for each of you - for each of our family members and friends - who keep us and Ella in daily prayers, and give us the love and support needed to get through everything. Thank you and we love you all! (:

Monday Surgery

Ella is scheduled for surgery tomorrow (Monday) morning where the surgeons will remove two, possibly all three, of her tissue expanders. This came up quickly but it needs to be done. Last Thursday we sent them pictures showing where two of her expanders were exposed. The doctors decided immediately that two of them needed to come out because there was just a little too much exposed. There is also a good chance that they will take the third one as well -- if they think that there is enough expansion there to cover.

So tomorrow morning it's off to the hospital. We have to be there at 6:45 and Ella should be her surgeon's first case. We are hoping and praying that they can take all of the expanders out and have enough to completely cover the area. If not, they will leave the larger one in and we will keep expanding it. For now, we are aggressively expanding that larger expander and hoping that it will be expanded enough to provide all that they need.

We are confident that all will go well and we are praying for the best results. We'll post updates here throughout the day tomorrow.