The Goodwins

This stinks!

I knew the tissue expander process was going to be hard to go through, but I just hate that Kirk and I have to make Ella so mad when we mess with her head… of course we know it is for her own good, but her tears and screams tell us that she doesn’t buy that.

We’ve decided that she needs another – even more fashionable (ha!) – haircut tonight. The sutures on her forehead are oozing some lovely goo. We think (hope) that it’s part of the original infection and that we’re still getting her cleaned out, but it’s getting all matted in with her hair every time she takes a nap or goes to bed. So tonight the clippers come out again and she looses even more hair so that we can keep her healthy.

Her smiles still warm our hearts, but the tears are killing us! Especially daddy as he is the bad guy more often than I am, and he’s not home all day to see the smiles and hear her belly laugh when dolly does something funny.

Maybe if we all shaved part of our heads I’d feel better.

hmmm… probably not.

Today our little family was once again in Chicago and Ella is a little lighter in the head, missing her surgery hat and drainage tubes… however, she is also a little heavier as Kirk and the nurse injected her expanders with an additional 35ml of saline (15 in the front and 20 in the back). Her head is officially taking on a strange shape and the haircut from surgery isn’t quite in style – especially considering all the detangling that was required after 10 days under her surgery hat… dreadlocks are in right? But her smiles are still so beautiful!

Kirk and I are very thankful for our friend from church Karen, a nurse here in St Joe. She met us in Chicago with her husband and two sons in tow (they went to the zoo) to learn the injection procedure with us so that we’ll have a backup here in town. We have had so many blessings along the way and Karen has been added to that list!

Once again Ella was a trooper – she did cry, pretty hard, but I am attributing that more to the lack of a nap before the appointment than to any real discomfort. She was really mad about the numbing cream rubbed on the injection ports; maybe it was cold? But once the gel was in place she played happily for about 30 minutes while we waited for it to kick in and while the nurse was reviewing the procedures with us. And she did not cry during the actual injections so we know that she should do fine when we are on our own. Kirk was amazing to – he is an incredibly loving father and while it hurts his heart to push a needle into Ella’s head, he is strong and steady; instilling confidence and faith in both his girls!

When we came home I walked into our kitchen and smiled at the beautiful vase of flowers brought to me earlier by my friend Miss Barb (Ella’s part-time therapist, friend, and now babysitter – if she’ll come back after Ella’s afternoon of tears this week!) It lifted my spirits, and I needed that!

Ella did finally get a good nap on the way home and she ate a big dinner – bigger than she has all week! Maybe the medications upset her tummy? Or maybe it was just all her struggling to avoid taking them that messed with her appetite. But luckily now that the drainage tubes are out she no longer has to take them, and Kirk and I (mostly Kirk) no longer have to wake her at 1am to force them into her.

After dinner we took a short family walk and Ella laughed and smelled all the flowering bushes in our yard! She giggles when we laugh at her efforts to snort air in and out her nose! We shared some ice cream, and gave Ella a bath… at long last we have washed her hair! That made mom feel better too.

So now Ella is sleeping peacefully, and Kirk and I are relaxing together, happy knowing that all is well with our beautiful girl!

It has been one week since we brought our two year old home. Our little Ella is doing well. We have good nights and bad nights. Last night was one of those a bit worse than others. We finally got her to sleep at about 12:30 and her 7 AM medicine time came way too early for both Ella and her folks.

Tomorrow we head back to Children’s Memorial to have Ella’s drainage tubes out and then learn how to inject the saline into her expanders. We are blessed that one of our friends from our church is a nurse and her husband agreed to take the day off of work (he’s a co-worker of mine at Whirlpool) and she will join us at the doctor’s office to learn how to do the expansion, along with me, to be a standby if I am out of town due to work or if I simply can’t handle it. Bonnie has already decided that she’s not going to be the one to “blow up our daughter’s head” as I have been heard to say.

Ella’s head was shaved in a few places to view he edges of her nevus so once the “surgery hat” comes off we will need to figure out a new hair style. Right now she looks like she has an older sibling that decided to “help” give her a hair cut. I’m guessing Bonnie won’t be a proponent of the Sinead O’Connor look so we may need to be creative with it. We’re not sure if we can wash her hair when we get back tomorrow, but it sure can use a good cleaning.

We put Ella down to bed about an hour ago and I still hear here moving around downstairs in her room through the baby monitor, so please keep her sleep (and her folks‘) in your prayers. Please also keep in your prayers a successful, safe trip and that Ella tolerates the expansion reasonably well and remains her cheerful self!